Poll: Health and gender re medical malpractice

if you feel comfortable please share your choice as well as whether you have ever experienced medical malpractice

not to be that person but please consider reblogging this, my tumblr don't have a ton of traffic and i'm genuinely interested in the results.

Very personal but important question(s?) regarding chronic health issues and disability

So I’ve had fibromyalgia and Gastroparesis for about a decade now, and I try my best to self-manage these issues (in addition to the expensive meds they give me that don’t really provide relief), but it becomes severely difficult for me to work a full schedule, particularly when my job drains me physically, mentally, and emotionally. I spend my days off in complete recovery mode, absolutely bed-ridden, afraid to do anything social or physical, because I risk going into a total Fibro meltdown. Which is a nightmare, but I’ll spare you the details.

I’ve been considering applying for partial disability because I think working 3 or 4 days instead of 5 or 6 would be much better for most humans, honestly, but particular for someone like me who deals with chronic nausea, discomfort, and pain on the daily. I’ve been putting it off for ages though because I know that disability can be very difficult to get and a horrible process and I can’t work myself up to it or afford a disability lawyer to help me. I tried being a little more aggressive this past summer and collected “documentation” on my fibromyalgia in the hope of preparing to submit it, and literally all of my documentation says “fibromyalgia?” because apparently none of my doctors believe me after years of testing and thousands of dollars of office visits trying to get this diagnosis. To be honest, using fibromyalgia as my reasoning for disability needs was a dead end anyway because lots of doctors still don’t believe it exists, so I doubt the government would find that a good reason either. And I really doubt they would take the Gastroparesis seriously either, even though both of these conditions are dehabilitating at times.

So one of my friends recommended I go through the avenue of my mental health issues. At different points of my life I’ve been diagnosed with depression, anxiety, bipolar, ocd, adhd, etc, and who knows what the real answer is, but she’s a mess. I’ve been realizing over the past couple years that I’m very likely autistic, and that would actually explain a lot of these things, but the past 6 months have been crazy, and even though I’ve been working a bunch, I’m poorer than ever because of the rising cost of everything, so I cannot afford to get a formal diagnosis yet. But I know that I told my most recent psychiatrist all these horror stories about my anxiety, so I decided to get done documentation for her too, and guess what? Generalized depression and mild anxiety. Girl, huh? (Tw: blood and dermatillomania coming up) I showed her evidence of scars on my hands from picking my hands every night til I bleed everywhere, I described how I get overwhelmed and cry at work several times a week and often fight back panic attacks at work and in my private life, I told her than I struggled to fall asleep and stay asleep and only got collectively about a few hours every night, I told her that I literally could not socialize without using alcohol as a crutch but I can no longer do that because of my digestive issues so I self-isolate, I told her that I struggle to maintain eye contact and panic when people give me eye contact… so many stories like these. Mild anxiety smdh

So that comes to my first question cause I guess I decided while writing this that I have a couple:

1) How do you, as a female-presenting person, get a diagnosis for severe anxiety? How wild do my stories have to be without accidentally committing myself?! I have an ex, amab, who basically pulled a john Mulaney and was like, “I get nervous on planes sometimes” and he legit got a prescription for Xanax or one of those other big ones, and another who is on a dose of gabapentin 5x the strength of mine because he gets social anxiety sometimes, so this is especially frustrating that I can’t even get a dang proper diagnosis on anything after ten+ years of therapy, doctors, tests, everything.

2) What is the process like for getting an autism diagnosis and are there cheaper routes you can go that would still be credible? I’ve exhausted my expenses from years of jobs not paying my worth combined with money poured down the drain trying to get any sort of help with my kaleidoscope of issues, and at this point I’m too broke and demotivated and burnt out to figure out a way forward.

3. Has anyone been able to get partial or full disability who would be willing to hold my hand through the steps and keep me motivated? I know it’s a huge ask but I honestly get so anxious even thinking about the process that I completely shut down. At the very least, maybe you could explain what worked for you or how you would approach it better next time? I just moved far away from my support group so I’m feeling alone and even a word of caution or encouragement would help.

I know I’m not really as connected to this community as I used to be, but I’m hoping someone will get to the end of this and even a kind word or a smidge of sympathy/empathy would be nice. And please do reach out if you have fibro because I don’t meet many and it would be nice to have friends who can relate. Thank you for listening! 💜💜💜

I’ve noticed that the years passing by have brought the trauma out more. I also know that accommodating all those triggers won’t be easy so anytime they come up I just have to face them. Whether it’s a dream or someone speaking about it. It’s no one’s job to make me feel comfortable because of the trauma I’ve endured. However, it’s also different when they are being little to you about something. Or say something provocatively, meaning (they think) you don’t know what you are talking about. When in fact you have been down in a dark place for way longer than you haven’t. I’m also still learning that no is okay to say even though I feel so guilty for it, I need to start putting myself first instead of everyone else. It recently hit me that for the first time in a few years that things are so much different than they use to be, and that’s not always a bad thing. I’m different for so many reasons. Pain does change how someone looks at life. Rude people can change how someone views life. Being a person with a good heart and very sensitive to emotions aren’t heard of much because no one talks about it because it’s not easy to explain.  I know that trauma will always be there and I will always wonder if something was different would it have been different for me. I will always have nightmares of it happening to other kids, which really sucks.  I’ve never once thought that doing drugs was going to solve my problems. I’ve seen that life. My mom has been in and out of jail since I was six years old. However she never once told me that she was trying to “escape” from something. “She did it because she liked to be high.” Do I like that? Not one bit. I learned that that’s not the life I want to live. Sure I’ll smoke some weed here and there, I could say I have chronic pain and some people would call that an excuse to smoke it. However I can’t find a job, I don’t have money to buy it and the money I do get I feed my animals with it so my grandpa doesn’t buy the cat food all the time.  I’ve always thought of breaking the generational curses instead of continuing them and it pains me when I see someone just diving right into the same curse. At first, I was beyond mad, the last few days I’ve become less mad. However, I don’t know whether I want this person around me or not. I’m always going to be questioning everything that they say or do.  

I’ve never felt like anyone’s best friend. I could say I’ve had 5 people I considered to be best friends. There are always other people that were somehow above me. I know I’m loyal, no one will probably ever match that. I know my worth. However, everyone wants friends. I wanted them so bad when I was younger that now that I’m older I look at them like they weren’t even there. While I was struggling to keep my head above water there was a few that stayed but they couldn’t help me. I realized I had to save myself.  So after the hell of a high school journey was finally conquered. Things started to feel good. Then my back was still pretty painful and I still have no diagnosis.  Once I got it, I was like okay. Spinal stenosis may just get worse but at least I know what it is. So I was like alright, time to learn to drive. I now know how to drive but the whole test thing didn’t go so well the first time and now I’m scared to even take it because I couldn’t pass a damn class on my own beforehand. How am I going to pass this with a strict instructor picky about everything? That brought out all the high school shit all over again, and I came home crying and defeated. 

It’s been a few months since June and that’s when I took the test. I’ve watched how to do things in videos. I learned how to back up, but there aren’t cones in my way. I thought the parallel parking sucks, turns out that’s better than a 90-degree backing angle. That one sucks, however, I will never parallel park. Not something I’m comfortable with and let’s face it there are not many places around here where you have to do that sort of parking. And who backs into a Walmart(or some other store) parking spot backing up? It won’t be me that’s for sure. For once I was hoping that this was going to go smoothly. Now I’m afraid.

A personal post about chronic illness

...I felt betrayed by my body, my genes, everything that makes me who I am.

And then I realized: It is pointless to feel so angry and depressed (even though I still have my very low moments). I had to have hope. I just knew one day, sitting at a doctor's office, looking at his deep green eyes that I had to get better, while he looked at me silently because he knew he couldn't save me if I didn't try. It was then and there I decided to get better. It was time I took care of myself instead of caring for everyone else. I knew I had to validate this pain. And I knew I had to have hope it would get better.

I had terribly incapacitating migraines today. It hurt so bad I was screaming. I am having a hard time sleeping because of the back pain. I was thinking to myself "I miss the old me. The old me could work out. Lift heavy objects. Walk to the grocery store or the subway. Walk out in the sun and not faint."

But then I remembered all the unexplainable symptoms I had back when I had no diagnosis of Ehlers Danlos Syndrome, and how everyone in my life (except a few friends) invalidated my pain. How somedays I forced myself to keep going to the point of collapsing. How I pushed myself in my studies when I was already so tired that I had burnout, had low immunity, and caught covid, which made my EDS so much worse in the first place.

In a weird way, after all this pain, I learned to be more independent even if I can't walk a few miles without being exhausted. I learned to count more on myself. I learned how to respect more this body I have, the emotions I feel, and how to care better for my anxiety and I have conquered depression. I found the answer to why I was always different, always so tired, always feeling pain on my back, on my feet, on my knees. Why I was so flexible and why it was so easy for me to do ballet and yoga when it came to flexibility. Why my body was different, why it always got so sick, why I have dysautonomia. I am not my diagnosis, but it is a part of me that explains my pain. 

And finding that out left more space for me to search for more of myself, to find out who I am.

I don't want to be my old self again. I want to be a better version of her. A version who is conscious of her needs, her emotions, her desires, her passions, her pain, her pleasure. A version that doesn't push her mind and body to breaking point over and over. Someone who is not a people pleaser. Someone who doesn't live for others but chose to live her own life. I thought I was a shell of a person. Always going with what I was told, and how I should please and adapt to others around me no matter the cost to my health, because I had no value, but others mattered much more. I really believed that. 

And now I know I am not a shell. I just had to break down, break protocol, break up with toxic people and toxic behaviors to dig deep and find answers about who I was.

I am still finding them. I still struggle more often than not. I have been discovering even more issues with my body. Still, I am making progress, as shocking as it may seem. Yes, I was so much worse health-wise than the person writing this today. I think it is because I chose recovery and I chose hope. I chose to have faith in myself. It was what worked for me. Something else might work for you, but so try different approaches and don't give up on your health. You are worth recovering even if it doesn't mean you will be cured forever. You still deserve to get better.

I am stubborn. I will remain stubborn in my recovery and also on the importance of taking care of oneself, the necessity for access to better and affordable healthcare. I will remain stubborn when people invalidate me and try to make me feel small so they can feel bigger. I will not be less of a human just because of a disability. I will not conform to others being treated like they are less than human for any reason.

I still have a lot to educate myself upon. And I am willing to do so.

I know I have to rigorously do physiotherapy and other forms of therapy for my mind while medicating for the pain. Because I want to be this new version of myself. Because I may not be able to go everywhere (yet), but I am freer than I was before.

I don't really think about what would've happened if I gave up after that doctor's appointment, because I felt a true epiphany, and I knew this faith and hope I found in myself wasn't going to go away.

I can be shaken up, but not broken, not completely. I found strength in myself there, in those white walls of an office. I knew then that it was now or never. And I am glad of my choice to keep going.

Hope is one of the strongest things one may have. And when even the smallest fraction of your hopes and dreams come true, as mine did, I encourage you to celebrate that victory.

In the end, I have handled worse. And I will handle this pain and the new test results I got. I will figure this out. It's time to remind myself and to remind you that we are survivors. And it's not fair, definitely, life is anything but fair. But we can prove to ourselves that we can get through whatever faces us right now because we have done it before, and we will keep doing it with grace. Because we are strong. Stronger than others think, and maybe even stronger than we give ourselves credit for.

My final advice about being sick and taking this long road to recovery is: Don't miss the old you. Celebrate the change that is making you grow. Forgive your past self, they didn't know what you know now. Forgive yourself in the present if you feel lost and don't know what to do. You will keep going and before you know it, you will find yourself in a whole new place. Life is unfair, but it doesn't mean that you can't help yourself get to a better place. And the journey is incredible.

Without my journey, this blog would exist. And what a shame it would have been because this place helps me every day. It saves me a little bit. It reminds me to keep going. It gives me a sense of community and a place to be creative.

Sometimes, with all this pain and uncertainty, I still can't wait to see what my journey will be and where it will take me.

With a lot of love, with food for thought (and a large dose of personal history), 

Lívia (Liv) 💐💕🌻🌱

What if a blind character could see through VR?

When other bloggers send me asks off anon, I prefer to answer them privately. There’s not a particular reason for that preference, I just do. But when I’m asked a good question, chances are I’ll use that as a jumping point to start a new post.

A lovely blogger sent me the following question and with their permission I’m sharing it.

Anonymous asks: “Question about writing a blind character! I don't know how much you know about the show SAO, but they have VR technology that connects directly to the brain. If the blindness of a character is part of their eyes and not part of their brain structure, allowing the VR to work, would that contribute to the issues with curing blindness in fiction, even if the "cure" is temporary? How would you expect (or want) a character to react to that situation?”

If SAO means Sword Art Online, then I’ve only seen a few of the first episodes with friends, but I don’t know much about it overall. But I will answer on the premise of VR you’ve explained.

Part of it depends on how long they’ve been blind. After a certain period of time not experiencing certain stimulation, you begin to forget what it was like. I’ve only been VI a few years but already I’m forgetting some sighted things and only sometimes experience clear vision in my dreams. Someone who’s been blind closer to a decade has probably forgotten most sighted things by now.

It also depends on how much sight the eyes are still capable of, which is almost always something, even if it’s only light and shadow.

If someone who’s forgotten what sight was like, or at least has gotten used to blindness enough that it’s just their norm, suddenly being able to see would be very alarming and overwhelming.

Imagine suddenly being able to hear everyone’s thoughts within a mile distance inside a city, how many voices there would be, and how it would be impossible to distinguish individual thoughts to focus on. And it would take a long time to adjust to suddenly having that ability.

Sighted people experience (or at least focus) on sight more than any of their other senses because sight is almost always getting stimulation and a lot of it. With limited sight, my brain began to pay more attention to sounds and smells, and I began to get more sensitive to touch, especially in my hands. Now suddenly this sense that’s had very little stimulation is flooding in with new information you don’t know how to process anymore and it becomes incredibly uncomfortable, possibly distressing.

Does that fall into the problematic cure trope? It’s hard to say.

I’ll put myself in that situation. It turns out VR sucks and I had a miserable first experience with it. I’d probably be incredibly reluctant to try it again, but I imagine many of my sighted loved ones would push me to try it again. Similar to how some tried to push me towards Lasik before my diagnosis when they thought all that was wrong with me was that I was nearsighted, and no matter how many times I protested and said I’d hate it, they were like “It’s a ten-minute procedure and then you’re fine, it’s not as big a deal as you’re making it.” Being pushed to try VR again would become incredibly annoying, and if I explained how I felt and they continued to ignore me, I’d probably snap at them.

It’s a pretty common experience with disability for abled relatives to want to fix or cure their disabled loved one because ableism doesn’t allow them to see how good our lives actually are when we have the right accommodations and are respected.

I probably would try it once or twice more, and if I still hated it and it didn’t seem to get better, I probably wouldn’t ever do it again. But if it did get easier and I found I enjoyed it after adjusting, that doesn’t mean I’d choose to use the VR always.

I actually have a similar, though not nearly as severe experience to this. I tried cannabis to treat my chronic pain and anxiety, but it turned out it overstimulated my visual snow and my vision would become much worse. This was years before I knew what visual snow was, and at the time I thought I had synesthesia because my hearing also felt overstimulated, so they must have been connected.

And a lot of my friends use it recreationally (it’s legal where I live) and it was a normal, pleasant experience for them. And no matter how I explained that it made me feel awful, they didn’t get it. I was always offered, out of politeness, but that eventually got frustrating for me. And a few (not close friends, no longer friends at all now) got a bit pushy saying that it couldn’t be that bad.

In fact, I’ve had a close friend tell me he thought that would be a nice experience, to have synesthesia because he also enjoyed hallucinogens. He did stop mentioning that when I told him how much comments like that bothered me.

And it sucks that I can’t enjoy it when it would help other unpleasant conditions, but now people have accepted that I can’t take it because they see how seriously my vision is already affected by visual snow, and if cannabis makes it worse to the point of being near completely blinding, then I really won’t want any.

But if I did enjoy cannabis and it treated chronic pain, I probably would use it. But if offered something that cured my visual snow, I don’t think I’d take it, especially if it was temporary and took time to adjust to every time I tried it.

LONG POST, medical update. ptsd, suicide TW: I’m really tired. I feel like I’ve been saying that for a year but I am exhausted. mind, body and soul exhausted my head got better after I lost the water weight my chemo pill was packing on (I was 15lbs lighter than the three weeks previously. so it was pretty bad lol) but now it’s getting bad again. it never gets to the point of relief, but it gets manageable and now it’s becoming unmanageable again. it’s not water weight but it might be cause I’ve put on a couple pounds over the holidays (just barely a couple pounds, I’m eating much lighter in general) anyway I don’t see the point of being scared to name what it is my neurosurgeon and I believe this is anymore. my psychiatrist thinks it makes sense, my pcp, even the ER doctor I saw on dec. 2nd lol but I am 99.9% sure this is what I have and it does makes sense but every fucking time I think about it for a while it makes me so angry. so so so angry y’all. I wish I could sit every single medical professional I interacted with over the last year or so who didn’t believe me and tell them it’s all been real, they failed me to such a degree I have ptsd and anger problems that I’m going to need therapy for, and tell them to learn how to be better providers. blegh so I saw my neurosurgeon (one of the best in the country) for the first time in april. his thoughts? anxiety with muscle tension in my back and neck that led to tension in my head. as in the muscles around my bones, not inside of my skull. didn’t listen to me or believe me, thought all my crazy symptoms were just anxiety and possibly the chiari malformation but there’s no treatment for that beyond surgery and mine is so mild no one wants to go that route (me most of all lmao) I put off seeing him again because I saw different neurologists and my PCP over the months who basically all said the same thing. like my PCP believed me and gave me referrals to the neuros, but one told me to ‘stop worrying about this and just enjoy life’ and the other sat with me for an hour, the first half of which she was all on board the ‘anxiety is fucking with you, none of this is real’ train until I had to tell her to LISTEN TO MY SYMPTOMS firmly enough that she did. she went the opposite way then and said yeah ok something ‘mechanical’ is happening, you need to go back to a neurosurgeon. turned out she loves the neurosurgeon I saw in april (worship the ground he walks on, were her words) but told me maybe I still needed a second opinion. she did also mention that I’ve been living with this for so long that I’m ‘married to it now’ which still implies I’m making it worse than it actually is but :) whatever, she couldn’t think of what it could be decided to just go back to that neurosurgeon and tell him the physical therapy he prescribed in april I had to stop because it made things worse. his PA tried to prescribe me more PT on the phone before I firmly told her I needed to SPEAK with him face to face because my quality of life is gone, because I get close to killing myself weekly because of how bad this is and nothing has improved since april. only gotten worse. so I had my appt with him in late October I think? I explained all of my symptoms (again) and told him how nothing has changed, things have gotten worse, when I do x y z I have an episode, etc etc. he said he still doesn’t think it’s the chiari but he said it *might* be IIH idiopathic intracranial hypertension first time I’ve ever heard of it and even though it was over 11 months into this, it might just save my life now that I have idiopathic = we don’t fucking know why this happens, intracranial = HAPPENING IN MY SKULL AND BRAIN, hypertension = technically high blood pressure, but for here just high pressure cause my BP is good it is rare, it is unknown why people get it and why others don’t, it is most common in women of child bearing age who are obese. the thought is that the weight on the body causes the brain to very slightly inflate, decreasing spinal fluid flow and increasing pressure in the brain, sometimes CAUSING a chiari malformation to appear, which can cause other symptoms on top of IIH it used to be called pseudotumor cerebri because IIH makes the brain behave like it has a tumor while no tumor is actually present (which means normal MRI/CT scans and the main reason everyone told me I was faking it) I gained 80lbs in less than two years due to severe depression and ptsd. I’ve been at the same weight for almost two years now and was at that weight in Feb 2019 before things started happening in Dec 2019. sometimes it does just come on one day. it can be chronic, it can randomly go into remission and come back, and they have no idea why it even happens. it’s rare enough that no neurologist I saw could even think of it. rare enough that one of the best neurosurgeons in the country didn’t think of it until he decided he believed me lol he leans even more heavily into this because I gained weight so quickly (one of the hallmarks of getting IIH) and I had not a single symptom like it before the weight gain I don’t trust anything or anyone right now and I am extremely pessimistic and have no hope. but the one thing that’s given me a little hope, that’s made me believe this is what I have, is the fucking wikipedia page on IIH. it lists one specific symptom that I’ve seen nowhere else (and is EXTREMELY specific lmao) that I have and that everyone thought I was crazy explaining. beyond destroying your quality of life, the one thing IIH can do is cause permanent blindness. I’ve had a fuck ton of problems with my vision since this all started happening. one of the worst is that if I’m in the middle of an episode and I look up or to the left, it makes it h u r t and makes the episode worse. which is on the wikipedia page! which explains why I couldn’t fucking do EMDR therapy which involves rapid eye movement from side to side :) :) :) even my therapist was thinking this was all in my head and I was just letting my anxiety tell me EMDR would send my head into an episode instead of it actually happening lmaaaao god I am so angry y’all my mom and my uncle The Doctor wanted to commit me in March/April. I had an entire ER nurses station mock me for ten minutes for coming in repeatedly and having bizarre symptoms that, because they were unexplained, they thought I was faking. they belittled me when talking to me. one put the tv remote (no tv in the room) instead of the call button in my hand when I was too out of it to notice. the ER doctor that day told me I was making up a story, none of this was real, and to continue seeing my psychiatrist. I went home that day, told my mom I was fine for her to go back to work (she was angry with me and wanted me to go to a psychiatric hospital), took a shower and planned on swallowing a bottle of pills. I was in agony, utter agony, every single day multiple times a day I thought I was going to die, and it was being made clear to me that no one, not even my mom, believed me. I told my best friend and she talked me out of it, but I came very close and I will forever be heartbroken and angry beyond belief about this (my mom came around not long after this after seeing that this wasn’t going away and has thoroughly apologized for wanting to commit me. she has been helping me every single day since this started even tho she thought it was anxiety. I’m angry but I don’t hold it against her, not after the incredible sacrifices she’s made for me for a year) so yeah. every bizarre symptom, every agonizing thing I go through, the weird discomfort, pain and burning, vision problems, etc etc, all explained by IIH. the very specific ‘looking in a certain direction makes it worse’ has been there since day one. it’s because pressure has increased on the nerve behind my eyes so looking in a certain way aggravates the affected nerve further gaining all that water weight and having my head get so so so severe, enough to send me to the ER again, made me also think this was a real possibility and the ER doc agreed that the fluid retention was making pressure in my brain even more severe and it did ease quite a lot once that was all gone, another reason I believe this is IIH if you read up on IIH or read stories by people with it, it is life altering, debilitating, and agonizing to live with. most people will also have the same story of doctors not believing them and saying it was anxiety before getting this diagnosis the good thing? there’s a cure and while some people may need additional help later on, it works for most people. and it is, very simply, losing weight. 10-20% of body weight (some places say relief can start at just 3%) seems to completely cure it for most people because the brain is no longer inflated and because of that, any chiari malformation (cerebral tonsils sitting in the spinal cord opening) will actually go away, because it makes room in the skull for the tonsils to go back to their normal place I have some trouble knowing that I am partially at fault for gaining weight like I did, but my mom keeps telling me it’s so rare and how could I have possibly known and it was after severe trauma so. trying to deal with that too lol but yeah! weight loss journey. my chemo pill, if you read my last update, completely fucked me up for a while (including the fuckin weight gain despite a low calorie, low fat diet since like nov 1st) so it’s made it hard to lose weight. but now that I’m off of that pill, I’m down 7lbs and I will continue to lose. I have never been more motivated in my life to lose weight lmao and I’ve successfully done it before! I can’t exercise but my neurosurgeon said as the weight comes off and my symptoms start getting better, I will probably be able to incorporate more movement in my life. I can’t even walk around my apt for too long right now cause it builds pressure in my brain. it fucking sucks because this is something they don’t understand, it’s really only diagnosed if everything else has been ruled out (and with a lumbar puncture, but I am too fucking traumatized to have that done. but if I showed high pressure with no reason for it, it would be an ‘official’ IIH diagnosis). but I’m choosing not to do the LP because if I start to have my symptoms relieved as I lose weight, it’s pretty obvious that’s what this has been from the start my brain thinks it has a brain tumor and is going absolutely batshit insane and no matter how much I tried to get people to believe me, it took 11 months to get there. I will carry this with me for the rest of my life and once covid eases, I’m finding a good trauma therapist and working through this if my symptoms DON’T ease, we’ll talk brain surgery. but I think this is what I have and I think I’ll be okay when I lose enough weight (and I’ll feel better all around lol) anyway I’ve had an extremely bad couple of months and I wanted to get this off my chest, sorry it’s so long. if you can please, please, please cross your fingers for me and wish me luck that this is what it is and that over the next handful of months I lose the weight and get my life back, I will appreciate it more than I can say I’m going to thank all of you ahead of time because I lack spoons to reply right now and I also want to thank you all for your support over this last year and never doubting me. for always offering me words of encouragement and for being angry on my behalf. thank you thank you thank you I love you all <3

21 Things To Do This Summer PJM

y/n has a week left to live and 21 things she wanted to do this summer. Jimin vows to help her do them all before she dies and give her the summer of a lifetime.

jimin x reader - angst, fluff, comedy, non-idol!au

Part of BangtanHQ’s ‘Bangtan Boardwalk’ at the ‘Summertime Sadness’ booth!

Rating: Mature (heavy themes and strong language - read with caution)

Word Count: 16.9k+ (she’s a monster omg)

Warnings: death and illness, discussion of death and illness, jokes about death and illness, brain tumour, discussion of eating disorders, brief mention of murder and crime (y/n jokes that Jimin could be a murderer or a thief), explicit language throughout, I think that’s it but please let me know if you noticed that I missed anything

a/n: here’s the first part guys! if you enjoy it, make sure to check out the other fics in the Summertime Sadness booth, and the other booths on the Bangtan Boardwalk! a huge thank you to @silverlightprincess​ for proofreading this massive fic, I love you so damn much x

silverlightqueen masterlist

y/n’s Summer Bucket List

21 Things to Do This Summer

1) Make a new friend

2) Dye my hair

3) Go on a road trip

4) Do pavement chalk

5) Get everybody I talk to to sign a shirt

6) Have s’mores at a bonfire

7) Get drunk and skinny dip at the beach

8) Make a wish balloon

9) Go to a fairground

10) Have a picnic

11) Get a tattoo

12) Sleep under the stars

13) Cloud watch

14) Try camping for the first time

15) Have a water fight

16) Make homemade ice cream

17) Have a pyjama day

18) Send a message in a bottle

19) Watch fireworks

20) Go to a drive-in movie

21) Make a photo album of it all

‘Hey! Hey, excuse me! Hey, wait, you dropped something!’ I can hear someone shouting and, despite the tears running down my face, I roll my eyes, wondering why the idiot who dropped something doesn’t stop to get it. ‘Excuse me! Hey, wait!’ I hear, the voice getting closer, before I feel a tap on my shoulder, and I realise; I’m the idiot.

I turn around to see a boy. The first thing I notice is the piece of paper in his hand. The second thing I notice is that I already know him. ‘You dropped thi- oh, y/n! Hey! Long time, no see. Wait, whoa, are you crying?’ he asks, and I roll my eyes again as I frustratedly wipe away my tears. ‘No, Jimin, why? Does it look like I am?’ I spit out sarcastically. ‘Okay, I’m going to ignore how rude that was because you’re clearly upset about something, and I’m going to be a good person and return this to you,’ he says, holding out the piece of paper. When I realise what it is, I snatch it from him, tucking it safely into my bag and mentally chiding myself for nearly losing it.

‘Thank you. Sorry for being rude,’ I say before I turn away, continuing to head home. It’s only after a few seconds I realise he’s walking beside me, and I speed up, trying to get away from him. He speeds up too. I slow down. So does he. I stop in my tracks, turning to shoot him an annoyed look, and he merely grins back at me, blinding me with his annoyingly handsome smile.

‘What do you want, Jimin?’ I ask tiredly, deciding not to be rude after he returned my list to me. ‘Well, it’s been a long time since we’ve seen each other, so I thought it’d be nice to catch up. And I also know you, and you’re clearly upset about something, and I’m not going to abandon somebody who I have history with if they’re crying. And, as well as being a very caring and empathetic person, I’m very curious, and so I have to find out why you’re upset,’ he says, and I frown, continuing to walk, even more annoyed when he continues to walk alongside me.

‘It’s none of your business, Jimin,’ I say sharply, hoping he’ll leave me alone. ‘Well, obviously. It’s your business. But the nature of being curious is wanting to know other people’s business,’ he says as though he’s speaking to a little child, and I shoot him another look. ‘You’re practically a stranger.’ ‘I am not! We had classes together through the whole of high school!’ ‘I’m not going to tell you my business,’ I say with a note of finality, hoping he’ll leave the subject. And leave me, for that matter.

‘Would you tell me if you knew me better?’ he asks thoughtfully, and I roll my eyes. ‘Probably, yes.’ ‘Okay. I’m a Libra, I hate spinach and 13 is my lucky number. Oh, and I dance,’ he says, and I literally want to bash my head against a wall. ‘That does not mean I know you better. It just means you overshare.’ ‘Well, you can’t say I’m practically a stranger. Maybe only half a stranger,’ he says, and I let out a humourless laugh at how persistent he is, and he grins, mistaking it for a real laugh.

‘God, what is it with you? What do I have to say to you to get you to leave me alone?’ I ask, stopping in the street and putting my hand on my hip. ‘If you tell me why you’re crying. Or, should I say, were? Because, if you haven’t already noticed, you’re no longer crying. Thanks to me,’ he grins, and I actually didn’t notice that I’m not crying anymore.

‘Well, your stupid ass has distracted me,’ I admit, and he laughs, the sound quite… endearing. ‘So? Tell me then. I think I deserve to know. Considering I cheered you up,’ he says, and I roll my eyes yet again. ‘I said that you distracted me. That is not the same as cheering me up. Listen, Jimin, I’d appreciate it if you left me alone. It’s nice to see you again, and I hope everything’s going well in your life, but it is not a good time for me right now. My patience is seriously wearing thin,’ I say, continuing to walk, but he still walks beside me, making me want to throttle him.

‘I think your patience was already thin. And I’m a good citizen, so I would never just let a pretty girl crying pass me by without asking what’s wrong. Especially if I already know her,’ he says lightly, and I roll my eyes. Is he seriously trying to flirt with me? ‘Jimin. Leave me alone,’ I say seriously, putting emphasis on every word as the anger begins to bubble up in my stomach. ‘Not until you tell me what’s wro-’ ‘I have a week left to live!’ I shout, losing my temper, and his face instantly transforms from teasing and light, to shocked and guilty as tears fill my eyes. That’ll teach him not to pry into other people’s business.

‘Oh. Oh, gosh. I’m sorry, y/n. I wouldn’t have asked if that’s what it was. I thought you were gonna say you’d broken up with your boyfriend or something. I’m so sorry,’ he says, sounding sincere, but I merely roll my eyes, turning and walking away, and hoping he’ll leave me alone now. ‘How’d you know?’ I hear him say from beside me, and I sigh aloud, having to physically restrain myself from hitting this boy with my bag.

‘What?’ ‘How’d you know you’ve only got a week left to live?’ ‘I went to the doctor a couple days ago, for chronic headaches. They did some scans, and then I got a call this morning to go to the hospital. They told me I have a brain tumour. Terminal. They said I’m lucky if I have another ten days,’ I say tiredly, a couple tears falling down my face which I wipe away hastily, and he takes a deep breath. ‘Wow. I’m really sorry. That’s… terrible. Is there no treatment?’ he asks, and I sigh again. ‘Yes, but they said it’s unlikely to cure it, it’ll only delay my inevitable death, and it’s… painful. I’d rather die sooner than later if later’s gonna hurt. Or it could get rid of the tumour, but it could ruin my future quality of life; I might not be able to speak the same, walk the same, even think the same. So I’ve refused treatment,’ I explain, not sure why I’m opening up to him, and he nods. ‘Reasonable. I’d do the same.’

We walk in silence for a few moments before Jimin starts speaking again. ‘So. Where are you going now?’ he asks, and I side-eye him. ‘Home.’ ‘To your boyfriend?’ ‘Don’t have one.’ ‘Girlfriend?’ ‘Don’t have one of those either.’ ‘Spouse?’ ‘I’m single.’ ‘Parents?’ ‘Don’t live with them.’ ‘Siblings?’ ‘Only child.’ ‘Friends.’ ‘Don’t have any.’ ‘What about all your friends from school?’ ‘I matured; they didn’t.’ ‘Oop. Roommates?’ ‘Nope.’

‘You live alone?’ he asks, and I laugh. ‘I have a dog. If that counts,’ I say, and he grins. ‘Of course it counts. What breed?’ ‘A miniature husky. His name’s Coco, and he’s literally tiny,’ I say, a small smile coming onto my face at the thought of my baby, and he holds a hand to his heart. ‘That’s a cute name. My friend, Taehyung – you remember him, right? – he has a Pomeranian who’s tiny, called Yeontan. Tannie for short. Tan for even shorter,’ he says, and I smile despite myself.

‘That’s so adorable. Maybe Taehyung can have Coco. He’ll need a new owner,’ I say jokingly, and Jimin winces. ‘Don’t you feel like it’s too early to make jokes?’ he asks, and I laugh. ‘It’s never too early. By the time it’s okay, I’ll be dead,’ I say bluntly, and he lets out a strangled laugh, as though he wants to hold it back but can’t.

I still feel a little shocked, but mainly numb. I went through the stages of dealing with bad news whilst I was still at the hospital. I started by denying it, and telling the doctor that something in the scan must be wrong. And then I got super angry that it hadn’t already been identified and screamed a little at her (it was my own fault, though – I’m the one that didn’t go to the doctor until it’d been months of me having headaches). Then I tried to bargain with the doctor, and ask if there were any treatments that don’t hurt or wouldn’t cause me irreversible damage, or if there was any chance I would survive any longer. And then I cried. A lot. And by a lot, I mean a lot. I got through a box and a half of tissues. I was at the hospital for three and a half hours, and spent two hours of that crying. And I was still crying when I left.

I guess I’m now in the acceptance stage. I didn’t know it was possible to move through the stages that quickly.

‘What was that paper you dropped? Your diagnosis?’ he asks, and I shake my head. ‘All my paperwork was in a folder, loads of it. I threw it in the recycling at the hospital.’ ‘Glad to see you’re looking after the planet for those of us that’ll still be here when you’re gone,’ Jimin says, almost tentatively, and I burst out laughing, covering my mouth. ‘That was funny,’ I admit, and he grins, relaxing. ‘I do try.’ ‘Yes, you’re very trying.’

‘Anyway. What was that paper then?’ he asks, and I sigh. ‘Do you, like, make it your life’s mission to pry?’ ‘No, it comes naturally. A lot of girls receive it well, actually. They like it when someone good-looking seems interested in their life,’ he smirks, and I shoot him a disgusted look. ‘Big-headed much?’ ‘Just truthful.’ ‘Well, I’m not receiving it well. Clearly.’ ‘I guess you’re not like other girls then,’ he muses, and I shoot him another look. ‘Please don’t tell me you think that’s a compliment, because it isn’t,’ I say, and he laughs. ‘I didn’t mean it like that. Let me rephrase it. You’re not like the girls that I’m used to being around.’ ‘You’re probably used to being around girls just as pretty as you.’ ‘You think I’m pretty?’ ‘Shut up.’ ‘Well, you’re right. But it’s okay, because you’re not just as pretty as me. You’re prettier.

But anyway. Are you gonna tell me what that paper is?’ he asks again, skimming over the fact he’s now called me pretty for the second time, and I sigh, giving up. ‘It’s a summer bucket list. I saw this girl reading a book with the same name in the waiting room at the doctor’s surgery the other day, and it inspired me to write one,’ I admit, and he grins. ‘That’s cute,’ he says, and I roll my eyes, looking away from him. ‘Well, I’m gonna die before I get to do any of them anyway,’ I say, and he sighs. ‘Oh. Yeah. Forgot about that,’ he says, voice small, and I nod.

We continue walking, his shoulder a few inches from mine, and I distract myself from the slightly awkward silence by looking at our surroundings instead. It’s a lovely summer’s day today; warm and sunny with the most beautiful breeze. Families are out in force despite it being a weekday, little boys running around shirtless and barefoot, and little girls in cute summer outfits. Chill ‘vibey’ music floats through open car windows, couples share ice cream at the café we walk past, birds chirp in the trees that line the road. It’s such a beautiful day. I even shaved my legs and put on a cute floral playsuit. So much for sunbathing in the garden.

‘Hang on,’ Jimin says suddenly, stopping in his tracks. ‘What?’ ‘Who says you can’t tick off your bucket list?’ he asks, and I raise an eyebrow. ‘I’m going to die, Jimin,’ I say slowly, and he lets out a frustrated noise. ‘You have a week. That’s more than enough time for us to do it all,’ he says, and my eyes widen. ‘Us? Who said anything about us?’ ‘I’ve taken it upon myself to help you tick off this bucket list.’ ‘And I’m taking it upon myself to refuse your help.’

‘Um, rude. Why?’ he asks with an amused glint in his eye, and my eyes widen even more. ‘Are you kidding? We barely know each other. The closest we ever were was when Nayeon and Jungkook dated and we all planned at their joint birthday party, and when we got paired together for that History project. That was years ago; I have no idea what kind of person you are now. You could be a murderer,’ I say, and he raises an eyebrow. ‘You’re going to die anyway,’ he says, and I stifle a laugh. ‘Okay, I’m allowed to joke about it; you are not. You could be a thief.’ ‘Again: you’re going to die anyway. But, I’m not a thief, so don’t worry. You’ll still have all of your belongings to put in your will.’ ‘Excuse me. Stop joking about my imminent death.’

‘Listen, I want to help you. Let me help you tick off your bucket list,’ he pleads, and I’m surprised at myself for actually considering it. I’m going to die anyway – I might as well spend my last few days having fun. Even if it is with an unbearably curious person from my past. ‘Please let me help you. I’ll consider my life a waste if you don’t,’ he says dramatically, dropping to the floor, making enough of a scene for people to look over at us. ‘Jimin, get up,’ I hiss, and he scrabbles at my shoes. ‘I’ll die if you don’t let me. Please, y/n, please let me,’ he wails, and I look around embarrassedly, feeling lots of stares on us.

‘If I say yes, will you stop making such an embarrassment of yourself?’ I hiss, and he looks up at me with wide eyes and a grin, nodding. ‘Then, yes. I’ll let you help me,’ I sigh, and he jumps up from the floor, a wide smile spreading across his lips. ‘Okay, let’s see what I’m working with,’ he says, and I look at him blankly. ‘Let me see the list,’ he prompts, and I pull the list out of my bag, handing it to him tiredly.

‘Okay, let’s see. ‘y/n’s Summer Bucket List’. Cute. ‘21 Things to Do This Summer’. Only 21 things? This’ll be easier than I thought,’ he says, before his eyes scan down the rest of the list. As he reads it, I look him up and down, inspecting him. He’s changed since school. A lot. He’s now around 5’8’’, with clear golden skin, chocolate brown eyes, plump pink lips and ink black hair swept back from his forehead (must be dyed because I remember his hair being a lot lighter than this). He’s dressed in a pair of grey shorts and a plain white t-shirt, a loose grey jacket over the top of it with pair of sunglasses at the back of his head. ‘Okay, well, you’ve already achieved number one. Making a new friend,’ he says, pointing at himself with a grin, and I roll my eyes exasperatedly. ‘I don’t know you well enough to call you a friend,’ I say, and he sighs.

‘That’s the best bit. You barely know me, and I barely know you. We can be whoever we want to be. All I know about you is the vague stuff from school, and I know that you had high hopes for this summer, but you’ve been diagnosed with a terminal illness. And you’ve only got a week left. And that you’re grumpy and get annoyed easily and are not receptive to strangers. And you’ve got a dog called Coco. All you know about me is the vague stuff from school, and that I’m a Libra, I hate spinach, my lucky number is 13, and that I dance.’ ‘And that you’re annoyingly curious and persistent and stubborn and think a lot of yourself.’ ‘Exactly! That’s literally nothing in the grand scheme of things.’

‘So you think we should lie to each other about what and who we are?’ ‘No, no, you’re misunderstanding. Haven’t you ever wanted to be like someone, but you’re too scared to, or you’re too stuck in your ways?’ he asks, voice soft, and I nod. ‘This is your chance. We barely know each other, and we have no more than a week together. You get to be whatever you want to be, y/n, and we’ll tick off everything on your list. We can be like those reckless teenagers from all those stupid films. What have you got to lose?’ he says gently, his eyes big and his words convincing.

‘We can’t do all this in a week,’ I say, and he sighs. ‘Can’t is not in my vocabulary. And neither are cannot, unable to, won’t, shouldn’t, wouldn’t, mustn’t-’ ‘Who in this century says mustn’t?’ ‘We can easily do all this in a week. Even less than a week,’ he says, and I raise a sceptical eyebrow. ‘Ambitious, but I don’t think so.’ ‘And that’s not in my vocabulary either. But… give me four days,’ he says, and my eyes widen. ‘Four days?’ ‘Easy. I could probably do it in three, but I’ll say an extra day just to be sure,’ he says confidently, and I roll my eyes.

‘Haven’t you, like… got a job? Or, like, studying? You can’t just devote four days – or more – to helping me tick off my bucket list,’ I say, and he rolls his eyes. ‘Why are you so sensible? Trust me, there’s nothing I have to do,’ he says, and I raise an eyebrow, not believing him for a second. ‘Fine,’ he sighs, ‘I work with my friend – Hoseok, remember him? – at his dance studio, but he’ll let me have some time off,’ he says, and I’m still slightly sceptical, but decide to give him the benefit of the doubt.

‘Why do you want to help me? Haven’t you got better things to do with your life?’ I ask him, voice small, and he smiles, seemingly endeared. ‘There’s something tragic about you, y/n. You went to the hospital alone to be told that you’re going to die. And you don’t live with anybody. And you have a list of things you wanted to do this summer, but won’t be able to do them without help. My help. Of all the places you dropped that paper, you dropped it in front of me. And of all the people that could’ve picked it up, it was me. We haven’t seen each other since we left school, and even though the odds of us seeing each other again were slim, look where we are. Fate works in mysterious ways, y/n. Let me help you. For old time’s sake,’ he says softly, and I feel that little voice in my head whisper, ‘why not?’

‘You know what? Let’s do it,’ I say, throwing caution to the wind, and feeling a little bit of excitement bloom in my chest. ‘Wait, really?’ he asks, surprise on his face but also… hope in his eyes. ‘Yeah. Let’s do it,’ I say with a small smile, the excitement in my chest flooding out into my veins. He jumps up and pumps the air, whooping and shouting in celebration, and I don’t even feel embarrassed of him, finding it quite endearing.

‘Okay, let’s get started. It’s 12.32, so we have until 12.32 on Sunday to tick the whole list off. Let me look at the list again. Um… well, number one’s done. And the last one, the photo album, we can buy a photo album now and take pictures as we go along to put in it,’ he says, thinking aloud, before he turns abruptly. I look around in alarm before rushing after him. ‘Where are we going?’ ‘There’s a supermarket just down the road that we can get a photo album from. Oh, and we can buy an instant camera too! Cuter pictures,’ he says, and I roll my eyes with a small smile on my face.

‘We should just scrap that one. It’s not like I’ll be able to look back at it, so what’s the point?’ I say, and he frowns at me. ‘Well, we could say that about all of this, but it’s about making your last few days exciting and fun and an experience of a lifetime. So don’t say ‘what’s the point’, because there is a point,’ he says firmly, and I keep my mouth shut, unable to stop a small smile from appearing on my face.

We enter the supermarket, the change in temperature making me shiver in my skimpy outfit, and Jimin looks over at me. ‘Oh, my God, my mum would kill me if she knew how ungentlemanly I was being right now,’ he says, taking his jacket off. ‘No, Jimin, it’s fine,’ I try to stop him, but he’s already handing it to me and taking my little backpack from my hand. ‘Let me. Have you ever been treated like a princess?’ he asks, and I shake my head shyly. ‘Then take the jacket and let me hold your bag. It’s the least you deserve,’ he says, and I smile to myself as I shrug on the jacket without further complaint, watching amusedly when he puts on the backpack.

He leads us towards the electronics, the back corner of the store, and makes a beeline for the camera section. ‘What’s your favourite colour?’ he asks, and I hesitate. ‘It’s hard to choose a favourite,’ I say quietly, and he rolls his eyes, an amused smile playing at his lips. ‘Okay. What’s your favourite colour out of these?’ he says, motioning to the instant cameras, and I think before answering, ‘that one. The pastel blue.’ ‘Ah, nice choice,’ he says, picking one of the boxes up and heading over towards where the photo albums are, and I follow after him. ‘This one’s perfect!’ he says, pointing at one the same colour as the camera, and I nod, Jimin picking it up with a grin.

‘Right, let’s just double-check this list and see if there’s anything else we need,’ he says, getting the list out of his pocket again. ‘Hmm, we could buy some chalk to do number 4. And we can buy a shirt and markers to do number 5,’ he says, thinking aloud again, walking ridiculously quickly to where the art and school supplies section where the chalk and markers will be, before rushing off towards the clothes section, having me running around behind him.

Once we’ve picked out a plain white button-up dress shirt, we head over to the counter, Jimin chatting amicably with the cashier as I hang behind, surprised and slightly envious of his ability to speak to strangers like they’re close friends. ‘Would you mind doing us a favour?’ Jimin asks, and the cashier nods instantly, scanning through the shirt. ‘Can you sign this shirt? Just, like, with your name and your… job, I guess. We, um, we’re doing a project,’ Jimin says with a grin at me, and the cashier nods again, looking a little confused as Jimin hands her a marker from the pack. She writes ‘Soojung –supermarket cashier’, before handing Jimin the marker back with a grin.

‘Have you got film for this camera?’ Soojung asks as she scans it through, and Jimin looks to me, both of us exchanging an embarrassed glance. ‘No, but it’d probably help,’ I say frankly, and Jimin nods with a laugh. ‘I’ll go and grab them for you,’ the cashier says, getting up and running off. ‘We could’ve gone and gotten it, she didn’t have to,’ I say, and Jimin grins. ‘Perks of being a nice person – people do things for you that they don’t have to,’ he says pointedly, and I scowl at him. ‘Was that a dig?’ I demand, and he grins even wider. ‘Not at all, my dear, y/n,’ he says, throwing an arm around my shoulders, and I roll my eyes in response, the cashier reappearing with a couple boxes of film.

‘Do you want just the one or…?’ ‘We’ll take both,’ Jimin replies, the cashier nodding, scanning them through. ‘Gonna make some summer memories?’ the cashier asks, and we exchange another glance, a small smile playing at Jimin’s lips when he replies, ‘something like that, yeah.’

‘Okay, let’s have another look at this list,’ Jimin says once we’re seated in the back corner of his favourite coffee shop, pulling the list out of his pocket and reading it through. ‘So you’ve already made a new friend. Me. We’ve got the chalk for number four, and a shirt and markers for number 5. I should sign the shirt, right?’ he says, and I nod, thinking this’ll be easier if I let him do what he wants, and he grins, writing ‘Park Jimin - y/n’s fabulously beautiful assistant and school friend’. I raise an eyebrow, and he raises one back, challenging me to say something, but I just shake my head with a small smile.

‘Let’s look at the rest of them. Number 2, dyeing your hair… I have a trillion boxes of dye at home, that’s easy. Number 3, go on a road trip… we can do that, and tick off the others as we do it. Number 4, pavement chalk, we can do with Taehyung on his and Namjoon’s driveway because Tae’s good at art and their driveway is huge. Number 5, get everyone to sign a shirt, won’t be difficult, we just have to remember. Number 6, have s’mores at a bonfire… let me think about that one. Number 7,’ he begins, before looking up at me with a smirk, and I roll my eyes, a little embarrassed.

‘Don’t laugh. It’s something that so many people have done, and I never have,’ I say defensively, his mouth falling open. ‘You’ve never gotten drunk?’ he asks jokingly, and I laugh despite myself. ‘No, idiot, I’ve never skinny-dipped, but I’m pretty sure I’ll only have the courage to do it if I’m drunk,’ I say, and he nods, looking at me thoughtfully. ‘You can leave me with that one too, I’ll think about it.

Number 8, make a wish balloon, that’s easy. Number 9, go to a fairground… that may be a bit more difficult, but I’ll get it done. Number 10, have a picnic, easy. Number 11, get a tattoo, ooh, that’s fun. I know the perfect place. Number 12, go to a drive-in movie… difficult, but I’ll find a way. Number 13, cloud watch, super easy. Number 14, try camping for the first time, that’s easy too. Number 15, water fight… that’s easy as well. Number 16, homemade ice cream, easy. Number 17, pyjama day, even easier. Number 18, send a message in a bottle… should be easy. Number 19, run through sprinklers… shouldn’t be too hard. I hope. Number 20, stargaze and fall asleep under the stars, should be easy enough. And Number 21 is well under way already,’ he says with a grin.

The photo album already has two pictures in it; one of Jimin and I smiling and squinting in the sunlight, and one of us with the cashier, who looks a little awkward, but it’s fine. Nothing will be more awkward than telling her we’re trying to tick off a summer bucket list within a few days because I’m going to die soon. I was right – Jimin has a serious habit of oversharing.

‘Hi, welcome to the Sweetbrew. I’m Yoongi, I’ll be your server. What can I get you?’ a barista says, sounding like he wants to die, his entire face hidden behind a menu. ‘Yoongi,’ Jimin says, snatching the menu to reveal a boy with porcelain skin, mint green hair and brown eyes. I recognise him as one of Jimin’s best friends from school – Min Yoongi.

He was always one of the quieter members of their friendship group. Not shy, but more calm and laidback – it was easy to seem like that when surrounded by his friends, every single one of them having been big and loud characters. But he was just like the rest of them in that he was definitely popular, and desirable too. Everyone saw him as this sensitive and kind boy, his passion for music reinforcing that even more, and there was always somebody that was crushing on him, his look unique and intriguing. And he’s only gotten better looking since school, more mature and manly, yet still with the soft and delicate features that he had back then.

‘Oh, Jimin. Hey,’ he says, sounding a little more lively, before he turns to look at me. ‘Ah, y/n, right? From school?’ he asks, and I’m surprised at how quick he recognises me. ‘I told the group chat about you. Sorry,’ Jimin says, and my eyes widen, Yoongi sitting in the spare seat at our table. ‘What? When?’ I ask, and he grins. ‘While you got distracted playing with that puppy outside the supermarket,’ he says, and I frown.

‘Did you tell them everything?’ ‘No. Well, nearly everything. I told them what we’re doing, but I didn’t say why. Obviously,’ he says, and I fix him with a glare. ‘Oh, it’s okay to tell a random shop worker, but not your best friends?’ I ask, Yoongi shooting him a look too. ‘Not cool, Park,’ Yoongi says, and Jimin scowls. ‘I already apologised for that. I have a serious problem with oversharing,’ he says, Yoongi and I exchanging a glance as we chorus, ‘we know.’

‘Why are you doing this? If you don’t mind me asking,’ Yoongi asks, curiosity in his eyes, and I sigh. ‘I’ve got a brain tumour, so I’ve got, like, a week left to live,’ I say bluntly, Yoongi’s mouth falling open. ‘Oh. Oh, God, I’m so sorry, y/n, that’s awful,’ he says, sounding a little awkward, but I wave him off. ‘It’s fine. I’ve already gone through the five stages, and am now sufficiently distracted from my impending demise by your stupid friend,’ I say, Jimin scowling.

‘Well, at least he can make up for being stupid by helping you tick off your list. Anyway, you guys want drinks or you just chilling?’ Yoongi asks, and Jimin looks to me to answer. ‘I could do with a drink.’ ‘What would you like, y/n?’ Yoongi asks, and I hesitate, not quite sure. ‘Um… I don’t know. Jimin, what do you have?’ I ask, but Jimin already looks like he’s cooking up a scheme. ‘What fruits do you like, y/n?’ he asks me, and I think for a moment before answering, ‘berries, pineapple, mango, kiwi, peach. I like everything.’

Yoongi and Jimin exchange a glance, talking without words, and Yoongi nods before disappearing into the back. ‘Anyway. We need to get Yoongi to sign your shirt before we leave, remember. And then… we can go to Tae and Joon’s to do pavement chalk. And we should be able to make the ice cream at Tae and Joon’s too. Then we can go and pick up stuff from our houses before we go on the road trip,’ he says, and I hold up a hand.

‘We’re gonna have to go to mine before we go to Taehyung and Namjoon’s, because I’ve left Coco with the neighbour. I told her I’d only be a couple hours and it’s already been… nearly four,’ I say, Jimin nodding, and I can practically see his mind working. ‘We can get Coco and take her to theirs, and she can play with Tan while we get on with ticking things off. And then we can take her on the road trip with us the next day,’ he says, and I nod, getting more and more excited with his ideas.

‘Are you gonna drop me home tonight and then pick me up in the morning?’ I ask, and he thinks. ‘How about… we sleep over at Tae and Joon’s? You can get all your stuff when we go now, and then we’ll be able to leave first thing in the morning,’ he suggests, but I’m sceptical. ‘Won’t they mind?’ I ask, and he shakes his head instantly. ‘They’re so chill about this kinda stuff. They really won’t mind. We all sleep over at their house all the time because it’s the biggest. There’s more than enough space,’ he says, obviously trying hard to convince me, and I nod. There’s no point worrying about intruding at their house when their best friend seems to be the most intruding person in history.

Jimin looks back down at the list, thinking hard, and I smile to myself. It’s sweet that he’s putting so much effort in to try and tick off this list, even though we barely know each other. The most we ever said to each other at school would’ve been ‘d’you have a spare pen?’ or ‘can you pass me the bottle opener?’

Yoongi reappears after a couple minutes with two plastic cups in his hands, the drinks within them vibrant pink and orange. ‘I call this one… ‘y/n’s summer bucket list’. I put in the syrups for all the fruits you named and a lot of sugar and ice,’ he says, putting them down with a flourish, my heart warming as I smile at him. ‘Thank you. It looks amazing,’ I say, taking a sip, my eyes widening as the flavours explode in my mouth. ‘And it tastes amazing too,’ Jimin says, having already taken a (large) gulp.

‘I’m not the best barista here for nothing. But, y/n, you gotta take the credit. It is named after you,’ Yoongi says, and I roll my eyes with a smile. ‘Get out of here. But, for real, it tastes great, Yoongi,’ I say, the boy giving me the cutest gummy smile, and then I notice Jimin fiddling around with the camera. ‘What are you trying to do?’ I ask, stifling a laugh, and he sighs defeatedly. ‘Take a picture of us with your drink,’ he says, and I hold back a smile, ‘get someone else to take it.’

He ropes in an innocent woman sat beside us with her friend, and she takes a while to focus the camera on us and get the three of us in frame, but when the photo develops, it’s pretty good. ‘Perfect. Right, let’s head back and get Coco,’ Jimin says, and I hold out a hand. ‘Wait. Yoongi, will you sign this shirt?’ I ask, and he looks a little confused. Nevertheless, he signs it as ‘Min Yoongi – creator of the iconic ‘y/n’s summer bucket list’ drink and y/n’s school friend’.

Jimin looks thoughtful as we rise from our seats, and I side-eye him. I’ve noticed that a little bit of panic appears in my chest when I see that look on his face. ‘Yoongi, you busy tonight?’ Jimin asks, and Yoongi shakes his head. ‘I’m never busy,’ he says, and I stifle a laugh. ‘When d’you get off work?’ ‘4.’ ‘Come ‘round to Tae and Joon’s. I got an idea,’ Jimin says cryptically, wiggling his eyebrows at me, and I give him a look.

‘Okay. See you guys later then,’ Yoongi says before turning to head into the back. ‘Wait. Don’t we need to pay?’ I ask, and Yoongi smiles at me, a little sadness behind the expression. ‘It’s on the house. I might even speak to the manager about getting this drink put on the menu,’ he says, and I smile at him, trying to ignore the tears in my eyes. ‘Good idea. Thanks, Yoongi. See you later,’ I say, Jimin bidding him goodbye as he disappears into the back. ‘Okay,’ Jimin turns to look at me with a grin, ‘let’s go get Coco.’

‘Oh, y/n. Oh, my angel, I’m so sorry,’ Mrs Choi says for the eleventh time, dabbing at her eyes with her handkerchief, and I smile sadly. ‘It’s okay, Mrs Choi,’ I say, not sure what else to say, when Jimin appears at my elbow. ‘Everything’s in the car now, so whenever you’re ready,’ he says with a grin as he hands me the house keys, Mrs Choi looking him up and down. ‘Oh, Mrs Choi, this is Jimin… an old school friend. Jimin, this is Mrs Choi, my lovely neighbour who my dog likes more than me,’ I say, Mrs Choi laughing as Jimin shakes her hand, bowing his head politely.

‘Oh, don’t be silly, y/n, Coco adores you. He cries whenever you leave him with me,’ she says, and I raise an eyebrow. ‘And then cries when I come to pick him up,’ I point out, and she waves a hand dismissively. ‘It’s because I feed him so much,’ Mrs Choi says, and I laugh, Coco appearing in the doorway behind her. He comes bounding up to me, my heart filling as he rests his front paws on my leg, and I bend down to pick him up. ‘Hi, baby. You okay?’ I say, showering him in kisses, and ducking away when he tries to lick my face. I hate when he licks my makeup off.

‘That is the cutest dog ever,’ Jimin says, and I hold Coco out to him. He instantly takes him into his arms, and giggles when he licks the tip of his nose. Coco leaps out of his arms, and he panics, trying to catch him, but he does it all the time, bounding around the front garden. ‘Here,’ Mrs Choi says, handing Jimin the little tennis ball she keeps beside the door for when she plays with Coco. He instantly throws it and Coco bounds after it, running straight back to him with it in his mouth.

‘He’s handsome,’ Mrs Choi observes quietly so Jimin can’t hear, and I roll my eyes. ‘And doesn’t he know it?’ ‘Are you… and him…?’ ‘Oh, God, no. I… there’s a list of things I wanted to do this summer, and he’s helping me get through it all before I...’ I trail off, and she nods, blinking furiously, obviously trying not to cry. ‘That’s lovely of him. Make sure you take lots of pictures to show me,’ she says, and I grin. ‘We’ve already started a photo album. Actually. Hold on,’ I say, getting the camera out of my bag as Jimin bends down to pet Coco who jumps on him, the unexpectedness making him fall onto his back. I get a really cute picture of him lying down, laughing, with Coco on his chest, trying to lick his face.

‘Lovely. Well, I’ll let you get to it. But make sure you come to see me again before… well, when you get back from ticking off your list,’ she says, pulling me into a hug, and I screw my eyes shut, trying my hardest not to cry in front of her. She’s been like a mother figure to me since I moved out of my parents’ house, always coming over to check if I’m okay, bringing me food and inviting me around at least once a week, looking after Coco whenever I need her to. I’m heartbroken that I’m going to be leaving a hole in her life when I go.

‘I will. See you later, Mrs Choi,’ I say, pulling away from her, and we exchange a sad smile. ‘See you, y/n. Be careful, dear, and have fun,’ she says sadly, pressing a kiss to my cheek, giving me one last long look before she disappears into her house. I don’t blame her; I’d be struggling to deal if I were in her position.

‘Okay. Let’s go,’ I call to Jimin who’s sat cross legged on the floor, Coco running towards him with the ball and dropping it beside him. Jimin’s standing when I reach them and he hands me the ball, Coco’s eyes never leaving it. ‘Do you want Coco to sit on my lap or do you mind him sitting in the back?’ I ask, as we walk towards his car, and he shrugs. ‘He can sit in the back, I don’t mind,’ he says, and I pull open the back door, putting the ball in there, and Coco leaps in without hesitation. I shut the door behind him before climbing into the passenger seat, Jimin already sat in the driver’s seat.

‘You ready?’ he says excitedly as he starts the engine, putting on the radio which is currently playing Justin Bieber. ‘Yep. Let’s do this,’ I say, sneaking one last look at Mrs Choi’s house. And then it hits me. This might be the last time I look at her house. I might die before I get to see her again.

My body goes cold all over, tears prickling in my eyes as my throat constricts painfully. It just repeats in my head again and again; ‘I’m going to die. I’m going to die. I’m going to die. I’m going to die.’

Coco realises I’m upset before Jimin does, and he begins to whine from the backseat. ‘Is Coco okay?’ I hear Jimin’s voice distantly, and when I don’t reply, I hear him coo, ‘Coco? What’s the matter, boy?’ And then he looks over at me.

‘Oh,’ he breathes out, instantly pulling over. ‘y/n,’ he says gently, reaching out to take one of my hands, and the second his skin touches mine, I burst into tears. He shuffles as close as he can, the gearstick separating us, and he leans across the gap, pulling me into his arms. I sob into his shoulder, letting him hold me as the tears come in an endless flood, whispering the words ‘I’m going to die’ every few seconds.

Once I’ve calmed down (and feel ridiculously uncomfortable in the position we’re in), I gently push away from him, and he releases me, still holding one of my hands in his. ‘Sorry,’ I whisper, and he frowns. ‘Don’t apologise. You’re allowed to be upset. Like, you’re going to die, for God’s sake; you can cry about that. Cry as much as you want, you’re entitled to do so. Just… tell me when you’re upset so I don’t say something stupid,’ he says ruefully, a small laugh falling from my lips, and he grins.

‘It’s just… it’s not fair. There’s still so much I wanted to do with my life. I’ll never work in my dream job. There are so many beautiful places I’ll never get to see. Tokyo, Mexico, Portugal, Bali, Dubai, India, Australia, Brazil, Hawaii, The Caribbean, The Maldives, Greece, Morocco. So many things that everyone does that I’ll never get a chance to do. Fall in love, get married, have a family. I’ve never even been in a relationship,’ I say with a harsh laugh, and Jimin sighs.

‘You’re right, y/n. It’s not fair, it’s not fair at all. You deserve so much more, so much better. You’ve been robbed of the rest of your life. You’re allowed to be angry. I’m angry,’ he says so simply, and it feels as though his words just… make it all okay. It’s hard to explain, but they feel like a consolation. They make me feel like the way I’m feeling isn’t me just being irrational, or a spoiled brat, because I know that it could be worse. They make me feel like I’m justified in my thoughts and feelings. And that’s what I need right now.

‘Thank you,’ I say, sniffling a little, and he smiles at me. ‘You’re most welcome, y/n. Now. Are you ready to go to Tae and Joon’s or would you like to cry for a little longer?’ he says teasingly, and I laugh, shoving him gently. ‘Drive, you moron,’ I say, and he gasps as he starts up the car, a small grin playing at his lips as he says, ‘Moron? I’m about to give you the summer of a lifetime in four days. Do you think a moron could do that? No, of course they couldn’t.’

‘y/n! Oh, my God, girl, it’s so good to see you!’ Taehyung exclaims the second I open the car door, running over from the front door and throwing his arms around me. I was always a little closer to Taehyung than I was to Jimin, because we had quite a few classes together. I hug him back, my face practically smushed against his chest as he holds me in a bone-crushingly tight embrace.

‘Hey, Taehyung. How have you been?’ I ask as he releases me, his hands still on my shoulders. He holds me at arm’s length, looking me up and down, before an appreciative grin spreads across his face. I hold back from pointing out that he still has the same adorable boxy smile from high school. And then I register his bright blue hair, stifling a laugh at how eccentric he still is. ‘I’m good. You got hot, y/n!’ he exclaims, and I feel blood rushing to my face from embarrassment.

‘Thank you. But look at you! You’re so handsome, Tae,’ I grin, and he grins back with a little wink. Everything about him is just as appealing as back then. Tae was definitely a ladies’ man… and a men’s man too. He was loud and bubbly, his personality easily grabbing the attention of everyone in any room, and his laugh was crazy infectious. He was the perfect mix of cute and hot, and he’s only gotten hotter, with his manly features and strong build.

‘Thank you, babe. Come in, come in. Jimin, do you need a hand with the bags? No? Good,’ he says, not even waiting for an answer from Jimin before he drags me up towards the house, the other boy muttering behind us as I hear him pop the boot open.

The second I step over the threshold, a ball of fluff appears and begins yapping at me from behind Tae, and he bends down to pick it up. ‘y/n, this is my beloved son, Kim Yeontan, or Tannie for short,’ Taehyung says, introducing me to his little Pomeranian, who has now quietened down and is staring at me with a curious look in his eyes. ‘Hi, Tannie,’ I coo at the dog, reaching a hand out to stroke his head, and he lets me with a contented little growl low in his throat.

‘Ah, he likes you! He rarely likes strangers. Little coward,’ Taehyung says affectionately as I slip off my shoes, Jimin appearing in the doorway with my bag (a suitcase, actually – yes, I might be dying soon, but I wanna make sure I look good when I do, so I had to bring plenty of clothes) in one hand, and Coco in the other. And then the barking match starts.

Coco and Yeontan incessantly yowl and woof at each other, both of them scrabbling to get out of Jimin and Tae’s arms. And then Taehyung puts Tan down, and Tan instantly shuts up, hiding behind his dad’s legs. Jimin does the same, putting Coco down, and he tries to get Jimin to pick him up again. ‘They’re both cowards,’ I mutter with a smile as Taehyung leads us down the front hallway, Yeontan trotting along beside him as I follow behind, Coco hanging back with Jimin as he takes his shoes off and shuts the front door.

We enter the kitchen, and if it wasn’t clear from the outside of the house, it’s made clear now; this house is beautiful, and expensive. It’s roomy and spacious, modern and clean, with classy and tasteful furnishings. ‘I love your house, Tae. It’s so nice, and I love the way you’ve decorated,’ I say, and he beams at me, eyes nearly disappearing behind their lids. ‘Thank you, y/n. It was all me – Joon has no sense of decoration,’ he says, sounding genuinely touched, and Jimin raises an eyebrow at me as he walks in. ‘Look at you sucking up,’ he mutters with a grin, and Tae and I both shoot him dirty looks.

‘You want something to drink, y/n? Before we get started on the chalk?’ he asks, and I shake my head. ‘I’m okay, thank you,’ I reply, but he’s already distracted with the list that Jimin’s put in front of him on the marble island counter. ‘Ooh, so this is the list? Let’s have a look,’ he says before reading it intently. Once he’s done, his eyes flit up to me, before flitting back down to the page.

‘Don’t take offence to this, okay?’ he says, and I already brace myself for a mocking remark. ‘Some of this stuff is, like, basic teenager stuff. How have you not done all of this already?’ he asks softly, and I feel a little embarrassed. ‘I don’t know, I just… after high school, I drifted from the girls – I still talk to them every now and then, but it isn’t the same – and I didn’t really… make any new friends to do these kind of things with. I have my work friends, but the most I’ve ever done with them is a night out. And in high school, I guess I was… too cautious and too scared to join in on these kind of things. We went on a group trip to the beach – I was the only one that didn’t skinny dip. The end of school prank was dyeing our hair in the school toilets – I was the one of the only ones that didn’t dye mine. Everyone planned a camping trip together – I didn’t go. I was, and still am, a little… uptight, I guess? I wanted to change that this summer, but…’ I trail off, and Tae surprises me by nodding sadly.

‘Jimin told me on the phone while you were talking to your neighbour,’ he says, and I shoot Jimin a look. ‘I thought it’d be better if you didn’t have to keep telling people!’ he exclaims defensively, and I nod with a roll of my eyes, thinking his reasoning is fair enough. ‘I’m really sorry, y/n. There’s not much someone can say in these kind of situations, but I just want you to know that I’m so sorry, and that it’s so unfair,’ he says gently, and I smile sadly. ‘Thank you. I appreciate that.’

‘Now, anyway. Shall we get on with this list? I know Jimin said that we can start with chalk and ice cream, but…’ Tae says, voice a lot more cheerful as he sidles over to me, twisting a lock of my hair around his finger, ‘I think we should dye your hair first.’ ‘Dye it?’ I say, lifting a hand to pat my hair protectively, having not yet worked up the courage. ‘Yep. I have trillions of box dyes upstairs – you can choose any colour you like,’ he says, and I look over at Jimin who grins, nodding encouragingly.

A few minutes later, I’m sat on a stool in Tae’s lavish bathroom, a towel resting over my shoulders as I inspect the boxes laid out on the counter in front of me, Taehyung and Jimin stood behind me as Coco and Tan play in Tae’s bedroom (they seem to be the best of friends now). ‘I’m thinking I shouldn’t go too wild considering it’ll be my funeral in a little while and my parents will probably want an open casket,’ I say musingly, Taehyung choking on air as Jimin holds back a smile.

‘Good idea. Maybe… highlights or ombre rather than the whole head?’ Jimin suggests, and I nod, feeling a little more at ease at not having to take the full plunge. ‘Okay… what colour then?’ Taehyung asks, and I look at all the colours. ‘Um… I don’t know. It’s really difficult,’ I say a little timidly, both boys nodding reassuringly, trying to give me a little more confident. ‘You’re right, it is difficult. How about… two platinum blonde streaks at the front of your hair?’ Taehyung asks, and I nearly choke.

‘Blonde streaks… like an e-girl?’ I ask, and Tae laughs, nodding. ‘It’s on trend, and I think you’ll be able to pull it off really well,’ Tae says thoughtfully, and whilst I’m still not convinced, Jimin nods excitedly. ‘Yes, that’d look amazing! Go on, y/n, you should!’ Jimin urges, eyes locked with mine in the mirror, and I sigh before nodding with a small smile. ‘Why not? Go for it,’ I say, the two of them exchanging a grin.

Before I know it, the front sections of my hair have been bleached and foiled, and a timer has been set for 20 minutes. And Jimin is contemplating dyeing his own hair. ‘I mean, I’ve had black for so long, and I need a change, right? I’ve been wanting to go bright for a while. But do I go a natural bright, or a colourful bright?’ he muses, Tae fake yawning at him in the mirror, coaxing a giggle from me, but Jimin doesn’t notice, too busy inspecting the dye boxes.

‘If it helps, I liked it when you went blond at school. You look nice blond,’ I say, and he looks at me in the mirror with a thoughtful look in his eyes. ‘Bright blond, or platinum blond, or dirty blond?’ he asks, and I think for a moment before answering, ‘bright blond.’ ‘Okay, let’s go bright blond then,’ he says instantly, disappearing off to get a towel from Tae’s airing cupboard.

‘That was… interesting,’ Tae says with a smirk at me in the mirror, and I look back at him confusedly. ‘How so?’ ‘He never takes anyone’s advice when it comes to his hair dye. And he never decides that quick,’ he says, his smirk even wider, but Jimin reappears before I can reply. I try to shake off Tae’s words as Jimin looks for the right box dye.

‘Maybe I should dye my hair too,’ Tae says, looking at his blue locks in the mirror. ‘I like you with brown hair, Tae. I’d like it if you had brown hair at my funeral,’ I say, and his eyes widen slightly at the mention of it again. ‘Yeah, I think that’s a good idea. We should all have natural colours for the funeral, out of respect,’ Jimin says, and I frown. ‘No, I don’t mind if you guys had the craziest colours ever. I just think you look so… classically handsome with brown hair, Tae,’ I say, and he looks smug at my compliment. ‘Okay,’ he grins, reaching for a box dye, Jimin and I exchanging a look in the mirror as he says, ‘guess I’m going brown then.’

‘When did you go brown, Tae? And you blond, Jimin?’ a voice suddenly says, making all three of us jump. There’s a man stood on Taehyung’s front garden, and I remember him as Jung Hoseok from school. He was cute back then, but he’s handsome now with his golden skin and his silky brown hair. ‘About… 90 minutes ago,’ Taehyung says, currently drawing what looks like a heart but could also be an alien, and Hoseok nods as though it’s perfectly normal.

‘Hey, y/n. Your hair looks nice,’ Hoseok says, shooting a heart-shaped smile at me, and I smile back. I’m still not used to my hair being blonde when it falls into my face, but it does look nice – Tae and Jimin did a good job. ‘Hey, Hoseok. Thank you. Tae and Jimin did it.’ ‘Please, call me Hobi. Anyway, how are you?’ he says before wincing, obviously already aware of my situation. Jimin really can’t keep his mouth shut. ‘I’m okay. How are you?’ I ask, and he nods, replying, ‘I’m good. Excited to work on this list.’ ‘Well, get some chalk and get your ass down here to help us,’ Jimin says from where he’s sprawled out on the gravel, drawing a dog (or attempting to, anyway).

We’ve been working on the chalk for just over an hour, listening to music from Taehyung’s speaker that’s sat in the doorway (Coco and Tan have already knocked it over several times whilst they’ve been playing). Bright chalk covers nearly all of Taehyung and Namjoon’s driveway – except for where Tae and Jimin’s cars are – rainbows, flowers, hearts, clouds surrounding us (as well as a bunny, a pineapple, a unicorn, a slice of watermelon and Jimin’s dog).

‘It looks like you’re nearly done,’ Hoseok observes, and I nod, wiping my forehead clean of sweat. ‘Yeah, we are. This isn’t as fun as I thought it was going to be,’ I say frankly, the others all laughing. ‘The fun comes from taking pictures with the chalk,’ Taehyung says, and I get up instantly. ‘Okay, let’s just take pictures and then carry on with the list,’ I say, the three of them laughing again as Jimin and Taehyung get up from the floor.

Taehyung instantly goes into director mode, making me lie down in a gap in the chalk. Jimin stands over me, one foot on either side of my waist, taking pictures on both the camera and his phone whilst Taehyung directs him on how to take them and me on how to pose, Hobi using his phone torch to give us better lighting (it doesn’t make much of a difference, but he’s trying).

I start to feel a little embarrassed, wondering what we must look like to Tae’s neighbours, before I remember that life is short – mine especially – so I should make the most of it without worrying what people think of me. After a few minutes (and a few dozen pictures), I get into it a little more, and the boys all begin hyping me up, Jimin making a few flirty comments here and there.

And then Jimin joins me, Taehyung taking the camera and Hobi directing us (he’s even more… bossy than Taehyung, instructing us down to the simplest things – the positions of our fingers, the direction we look in, the angle of our heads. Everything.)

‘You guys are gonna make her regret asking for help,’ a voice comes from the driveway, all of us looking over to see Namjoon and Jungkook from school stood there, leaning against the Jimin’s car. ‘Watch the car!’ Jimin exclaims, both of them heading over. ‘Just for the record, I didn’t ask for help. Jimin forc- I mean, Jimin volunteered his help,’ I say, correcting myself when he shoots me a dirty look, the others laughing.

‘It’s good to see you guys again. Did you walk here?’ I ask, and Namjoon nods. ‘It’s good to see you too. Jungkook picked me up from work, and then we dropped his car off and walked here. We all live really close to each other. Jimin, Jungkook and Hobi live on the road up there, and Jin and Yoongi live on the road down that way,’ Namjoon points, and I nod, thinking how sweet it is that they all live so close together.

‘JK, the blue’s gonna have to go,’ Tae says to the baby of their group. He’s changed more than all of them; he still has his big eyes and his cute bunny teeth, but that’s where the similarities end. He’s so handsome, and his body is lean and tall. Not as tall as Namjoon, though; he always was tall, but he’s grown even more now, and he’s gorgeous, with his dimples and blond hair. It’s like only beautiful people are allowed in their friendship group.

‘What?’ Jungkook asks, confused, his eyes wide. ‘You need to dye your hair brown again,’ Tae says, Jungkook frowning. ‘Why? I’ve only been blue for a couple days. Don’t you like it?’ ‘It looks great, but we’re all going natural out of respect, for y/n’s funeral,’ Jimin says casually, Jungkook choking and Namjoon slapping his back with wide eyes. ‘Jimin. You can’t just drop it in like that,’ Hobi reprimands, but I wave it off. ‘It’s fine, I’d prefer if we just spoke about it normally. Anyway, you don’t have to go brown, Jungkook, it’s okay,’ I say, Jungkook nodding, still looking a little shell-shocked.

‘Can we get up now?’ I say to Hobi from where I’m lying on the floor, shoulder-to-shoulder with Jimin, and he shakes his head. ‘If you want to make a scrapbook, you can’t just have pictures of you and Jimin in it. You need to get pictures with all of us,’ he says simply, and I bite my tongue, knowing I’ll just have to suck it up. Twenty minutes later, I’ve taken several pictures with all of the boys, and it was a little fun, I guess. We’ll have run out of film by the end of the day at this rate.

But my head’s starting to hurt a little, and I know I can’t take anymore. ‘Can we stop now? I’ve got a bit of a headache,’ I say, sitting up, and they all look a little worried. ‘Is it from being under the sun for so long?’ Hobi asks, nervously, but Tae speaks before I can reply; ‘no, it’s probably the hair dye.’ Jimin looks at them both incredulously. ‘I think it’s the tumour in her brain,’ he says slowly, and I can’t help but share his exasperation at their stupid suggestions, the boys all falling into a shocked silence as Jimin looks to me with thinly-veiled amusement.

‘Yeah, I think you’re right, Jimin, it probably is,’ I say, holding back a laugh. ‘Do you want some painkillers?’ Tae asks weakly, and I smile, shaking my head. ‘I’m okay, thanks. I might just have a little lie-down, if that’s okay?’ I ask, Tae nodding straight away. ‘I’ll show you to one of the guest rooms and you can have a shower, or a nap, if you want?’ Tae suggests as Hobi and Jimin help me up, my head dizzy and light, and I nod. ‘That sounds perfect.’

I blink in the slices of soft sunlight that fall between the blinds onto the bed, sitting up carefully. My head feels a lot better after that nap, which was the best nap of my life, by the way. Tae and Joon must be seriously rich, because this bed is the most comfortable bed I’ve ever slept in. And the room is super lavish, monochrome and clean, with a deep carpet and expensive looking furnishings. The bathroom was nice too, and I dragged out my shower a lot longer than usual, my skin smelling fresh with Tae and Namjoon’s expensive passionfruit body wash.

I slowly climb out of the bed, looking at myself in the floor to ceiling mirror on the wall opposite me. I still can’t get used to the hair, but it does look good. Tae has good taste, and he and Jimin put the dye in really well – the front sections of my hair are the perfect vibrant blonde. Tae put all these different haircare products in it after he washed out the dye, and it feels healthier than ever before. It’s obvious he’s dyed his hair plenty, because he’s clearly an expert. He could be a hairdresser if he wanted to.

I open my suitcase and get out a bralet to put on (my pyjamas are satin, and I’d rather not have my nipples visible through them in a room full of childhood friends I haven’t seen for years) and put it on beneath my black button-up pyjama shirt. I quickly splash some water over my face to wake myself up a little before I head downstairs, following the loud voices that lead me into the kitchen. Namjoon’s stood at the counter, making coffee, Jungkook, Jimin, Tae and Hobi sat around the breakfast bar with two new arrivals; Yoongi, and Seokjin. Seokjin literally hasn’t aged a day, and he’s somehow even more handsome than he was back then, with his plump lips and swept back dark hair.

‘Sleeping beauty awakes!’ Jimin exclaims when he sees me walk in, and I smile softly, still a little sleepy. His blond hair really does look good, the perfect summer colour, and Tae’s looks really good too – the dark brown locks make him look like a model. ‘y/n! They were right, you really are gorgeous!’ Jin exclaims, jumping up and pulling me into a hug, and I try to supress the embarrassment I’m feeling at them talking about me, and telling Jin I’m gorgeous. One thing I remember about Jin was that he never used to feel embarrassed, at anything. Sometimes he’d get a little shy, and his ears would go red, but he’d never hesitate to do something, even if it was embarrassing, if it would help to ease any awkwardness and make people feel comfortable.

His hugging me, despite us barely speaking when we went to school together and not having seen each other for years, is just what I need, and a perfect example of how kind Jin is.

‘Thanks, Jin, but look at you! You’re really handsome,’ I say honestly, feeling at ease after his hug, and he grins at me. ‘You didn’t call me handsome, y/n, but you called Tae and Jin handsome,’ Jimin pouts, and I roll my eyes at him. ‘She knows Tae and I are the best-looking, that’s why,’ Jin says, and Jimin scowls at him before looking back at me, still waiting for an answer. ‘Just because I didn’t say it out loud, doesn’t mean I didn’t think it,’ I say matter-of-factly, and he grins proudly. ‘What about the rest of us?’ Hobi asks, all of them flashing smiles at me, and I blink a few times. ‘You’re all handsome. Now stop smiling at me before I faint,’ I say, all of them laughing.

‘Coffee, y/n?’ Namjoon asks, but I shake my head. ‘I’m trying to cut down on my caffeine intake. Thanks, though,’ I say, and Jimin frowns. ‘y/n, it’s not like it matters,’ Jimin says, everyone wincing, and I laugh, nodding in agreement. ‘You’re right. I will have some, please, Namjoon,’ I say, everyone laughing again as Namjoon nods with a smile, getting another mug out for me. ‘Sit down, y/n,’ Tae says, patting the empty seat between him and Jungkook, and I sit in it, feeling a little self-conscious. I’m in my pyjamas, with no makeup and slight bedhead, and they’re all just… so handsome.

‘What do you guys do? For you all to be at home at… 5.38 on a Wednesday?’ I say, reading the time on the clock. I have all of the boys on social media, so I vaguely know some of what goes on in their lives, but not much. It’s hard to keep track of everyone from school. ‘Um, I own my own photography business. We do photography for weddings, parties, photo shoots, etc. and we’ve had some pretty high-profile clients, so we’re quite successful. And I do some art on the side, and some of my paintings have sold well, hence the fancy house. I get to work from home most of the time, because I mainly do editing – I’ve hired photographers, but I do a couple weddings here and there,’ Tae says, and I’m impressed, though not surprised. Tae always did have a talent for art, and he was the photographer for the school newspaper, so this career is perfect for him.

‘I own my own dance studio, and we only open on Monday and Tuesday 6-9, Thursday 3-6, and then Saturdays and Sundays,’ Hoseok says and, again, I’m not surprised; Hoseok always loved his dancing and he put more effort into dance than into his school work, but I guess it paid off.

‘I work for Hobi and Tae. I teach classes every day that it’s open, and then I do some photography work every couple weeks. And I do some shifts here and there at a tattoo shop,’ Jungkook says, and I think it’s really cute that he works for his friends, though I wonder if it sparks any arguments between them. I look at Jimin when Jungkook mentions the tattoo shop, and Jimin grins with a little nod, my stomach turning. Obviously, he was referring to where Jungkook works when he said he knew the perfect place for me to get a tattoo.

‘I do all the finances and admin and paperwork for Tae and Hobi, and I work for a small record label, producing and rapping,’ Namjoon says as he puts my coffee down in front of me, and I thank him with a smile, quite surprised to hear Namjoon’s career choice. To be fair, Namjoon excelled in all of his subjects, so he’d be good at whatever he chose to do.

‘I’m a part-time chef at this restaurant in the city, and I’m also studying to become an actor,’ Jin says, and I’m impressed. I didn’t know Jin was interested in cooking or in acting, but now that I look at him, he really does look like an actor, and I could imagine him as a chef too, with one of those big white hats.

‘I’m a barista, as you know, I teach a couple piano lessons a week, and I do some rapping and producing at the same company as Namjoon,’ Yoongi explains, and I remember how good he was at piano. He was chosen to play at one of these awards’ evenings we had at school, and we were all so impressed at how good he was. Rapping, though? I never knew he could rap.

Everyone looks at Jimin to answer, but he looks back blankly before saying, ‘I already told her my job.’ They all nod before looking back at me. ‘What do you do, y/n?’ Jin asks, and I roll my eyes. ‘I work part-time as an assistant at a law firm, and I’m studying to become a lawyer. Or I was anyway,’ I trail off, a little sad that I’ll never be able to do my dream job, and the boys all give me pitying looks. Except for Jimin, who says, ‘damn, y/n, you’re clever. Law student, huh?’ I nod with a smile, and he grins. ‘You could’ve got in on the family businesses, and done all the boring legal shit for us,’ Jimin says, and I grimace, internally endeared at him calling them the family businesses. ‘I’d have passed. Sorry,’ I say, the boys all laughing.

‘Okay, enough chit chat. Let’s carry on with your list,’ Jin says, picking it up from where it sits in the middle of the island, and I take a sip of my coffee. ‘Should I wash the chalk from your driveway?’ I ask Tae and Joon, and they both shake their heads. ‘I was about to, but Jin stopped me. He wants some pictures with you and the chalk,’ Tae says, and I let out a sigh, all them laughing. ‘We’ve literally spent all of our time on the chalk so far. Your four days are gonna fly by,’ I say to Jimin, who waves it off with an easy grin.

‘Stop trying to worry me. Four days is plenty. You go take some pictures with Jin, and Yoongi, while I set up the next thing for us to tick off,’ Jimin says, getting up and pulling me off my seat, pushing me towards the door. ‘Make sure you get plenty of good pictures,’ Jimin says to Tae with a mischievous glance at me, who nods, and I roll my eyes. ‘We’re gonna run out of film,’ I say, but Jimin shakes his head with a grin. ‘I went out whilst you were asleep and got some more supplies, including a few more boxes of film,’ he grins, and I let out a deep sigh as Tae and Jin drag me outside, Yoongi trailing behind, and Jimin waving at us from the doorway.

‘Done with your photoshoot?’ Jimin asks as we walk into the living room. ‘Yes, thank God,’ I say, throwing myself down onto the sofa. ‘Jin, you’re way too demanding. We were out there for forty-five minutes,’ Yoongi says, flopping down next to me, and Jin scowls at us from the doorway. ‘Tae wasn’t getting my angles!’ he exclaims, and Tae’s eyes widen. ‘You’re not blaming this on me. I own a photography business, so don’t accuse me of being a bad photographer,’ Tae says, Jin opening his mouth to speak, but Jimin interrupts; ‘don’t argue. y/n’s dying.’

They go silent, and I burst out laughing as Jimin grins at me. ‘You can’t drop that into every conversation, Jimin,’ I laugh, the others relaxing a little, and Jimin shrugs. ‘I can. Just watch. Anyway, before you get comfy, we need to go into the dining room,’ he says vaguely with a knowing grin, and I narrow my eyes at him. ‘I don’t want to, because of that look on your face,’ I say suspiciously, and he laughs. ‘Come on, y/n, we gotta tick the next thing off your list,’ Jimin says amusedly, holding a hand out to me, and I take it after a moment of hesitation, letting him pull me up. He doesn’t let go of my hand, dragging me behind him into the dining room, and it takes a little while for me to register what’s going on.

The table is set up with these different machines, and Jungkook sits at the table with an empty seat beside him, a lamp set up to cast a bright light onto the empty chair. And then I spot the little book on the table, sat beside a bunch of needles lined up on a small white sheet.

Jungkook’s about to give me a tattoo.

‘Oh, hell no,’ I say, turning around, but Jimin grabs me around the waist before I can walk away, picking me up and carrying me over to the door as I struggle around in his arms, the other boys watching amusedly. But Jimin’s freakishly strong, and my struggling doesn’t work. He puts me down in the empty chair, and I pout at him before looking around at the others. Tae, Jin and Yoongi are stood in one doorway, blocking it, and Namjoon and Hobi stand in the other, blocking that too. I literally cannot leave, and when I look down at the needles, my stomach turns.

‘Do you want to look through the book?’ Jungkook asks gently, and I sigh. ‘Not really,’ I say, all of them laughing as he hands me the book, and I flip through it. ‘Can you all stop looking at me? Or at least put on some music so I don’t feel so tense,’ I say, more laughter rippling around the room as Taehyung gets his phone out of his pocket and taps the screen a couple times, gentle RnB music floating out into the room from the ceiling. They must have a built-in sound system – their house really is boujee.

I scan the book and some of the designs are cute, but none of them really stand out to me. ‘Struggling to choose one?’ Jungkook asks quietly, the others having conversations between themselves, and I nod. He rolls up his sleeve, and shows me the various tattoos that cover his arm and hand. He has a flower, a skeleton hand, the word ‘Truth’, the woozy emoji, a purple heart, a little crown and some black stripes with various numbers and letters on his hand. ‘They all stand for different things. Like, for example, this is the tiger flower, which is my birth flower, and the letters all stand for the guys. So you could get some that are meaningful to you, or you could just get something that you think looks pretty. It’s up to you,’ he says, and I nod, thinking.

I decide on getting my birth flower, a little bolt of lightning and my parents’ initials. ‘Why don’t you get something summer related?’ Jimin suggests softly, and I think before nodding. ‘Like… the sun, or something?’ I ask, and he shrugs. ‘Whatever you want. You could get a picture or a quote, anything you want. It’s up to you, y/n. It’s your body,’ he says, and I nod, thinking about the first idea I had for a tattoo when I wrote that list. ‘How about ‘we’ll always have summer’… or is that silly?’ I ask, and Jungkook shakes his head straight away.

‘Of course it isn’t silly,’ he says, but Jimin looks at me thoughtfully. ‘Who’s we?’ he asks, and I sigh. ‘I don’t know. A general ‘we’, I guess? Like… as bleak as life gets, as boring, as sad, as hard as life is, there’s always the hope, the promise, the excitement of summer. So no matter what happens, we’ll always have summer,’ I explain, Jungkook’s eyes widening, and Jimin nodding at me with a small smile. ‘Wow, that’s so deep, y/n. You’re so clever,’ Jungkook says, and I laugh, waving it off.

‘Have you decided yet?’ Hobi asks, and I nod, feeling a little nervous. ‘I’m getting my birth flower, a bolt of lightning, my parents’ initials, and ‘we’ll always have summer’. What do you think?’ I ask, and Hobi smiles, looking impressed. ‘You’re getting four?’ he asks, and I laugh. ‘Might as well.’ ‘Where do you want them?’ Jungkook asks, and I hesitate. ‘Where does it hurt least?’ ‘Your ass,’ Jimin says with a grin, and I swat at him whilst the others all laugh. ‘The least painful is usually your back, the outside of your arms, the inside of your forearm and the outsides of your thighs. Hands aren’t too bad, and nor are shoulders,’ Jungkook explains.

After a lot of deliberation, we make the decision as a group of where I should have them; birth flower on my inner forearm, my parents’ initials on my right ring finger, the lightning bolt on the side of my ribcage/side-boob, and the quote on the back of my left shoulder. ‘How long will it take, Jungkook?’ I ask as Jungkook sets up all his equipment, the others arguing about what we should have for dinner. ‘Please, call me JK, or Kook, or whatever. And, it shouldn’t take longer than a few hours, because they’re all quite small. The quote will take the longest, and I can usually do quotes in an hour and a half, so I’d say… three hours, maybe three and a half?’ he says, and I feel dread at the thought of being in pain for that long. But it’s fine. I’ll be fine.

‘Are you still not done?’ Taehyung demands as he enters the room, Jungkook’s eyes still fixed on my finger as he sighs. ‘Relax, I’m doing the last one now. I’ll be done in a few minutes,’ he says, and Tae huffs. ‘You’re taking ages. We want to do the next thing on her list.’ ‘Don’t rush me, Tae. Tattooing is an art,’ Jungkook says calmly, Tae rolling his eyes from behind Jungkook’s back, and I hold back a laugh.

It actually wasn’t that painful, surprisingly. The worst thing was having to stay still for so long. He started with my birth flower, and it was fascinating to watch the ink appear on my skin, at first. The fascination soon wore off, and I was itching to move, but I knew I’d just ruin it if I did.

Then he moved onto the quote. I had to tie my hair up into a bun and sit backwards on a chair whilst he did it, and Jimin fed me some of the Chinese food they’d ordered, keeping me entertained with his stupid antics. Jin tried to feed Jungkook, but when he choked Jungkook with a chopstick, Jungkook decided he’d just eat afterwards.

And then he did my lightning bolt. I had to take off my top and unclasp my bra, holding it in place with my arm out of the way so Jungkook could get to my side-boob easily, and I told the boys that none of them could come in whilst he was doing that one, because the bra kept slipping. Jungkook was very professional though, and I can’t even imagine how many boobs he’s seen over his time working as a tattoo artist.

And now he’s doing my fingers. I’m used to the stinging pain now, and I’m very proud of myself for not crying. Tae shows me some funny videos on his phone whilst Jungkook carries on with the tattoo. ‘And… done!’ he exclaims, sitting back in his chair with a sigh. I look at my hand, pleased with how the tattoo looks. ‘Thank you, JK, it’s great.’ ‘No problem. Right… let me give you the aftercare speech,’ he says as he begins to put the weird jelly stuff and a bandage onto my finger. It’s weird how professional he is – I saw him passed out drunk at house parties more times than I can remember, and now he’s giving me tattoos and telling me how to look after them properly.

‘Don’t remove these bandages for 24 hours, and when you do, wash the tattoos, gently, with an unscented soap and water, and pat it dry afterwards. Put on some of this ointment twice a day, if you can, but you don’t need to put on another bandage. Wash them a few times a day, gently, with unscented soap and water, and always pat them dry, and then put on an unscented sensitive skin moisturiser. Obviously, you’re going to tick those things off your bucket list, and I’m sure a couple involve being in the water and sun. We usually advise against being in the water and sun, but obviously, you’re not going to do that, so just don’t be in the sun for too long, and put plasters over them when you go in the water, to try and stop them being infected. It’s not really that big of a deal if they do get infected because…’ ‘I’m dying anyway.’ ‘Yeah, that. So don’t worry about it too much, but just try your best to be careful with them. Oh, and don’t go into hot water, if you can help it. Have cool showers, and not for too long, either. I think that’s it, but if you have any questions, just get my number from Jimin and text or call me. Do you have any questions now?’

‘Only one; would you rather I transferred you the money, or do you want cash?’ ‘y/n, don’t be ridiculous. I’m not charging you,’ he says as though it’s obvious, and I frown. ‘Jungkook.’ ‘No, y/n, I’m not taking money from you.’ ‘Why not? I haven’t got anything else to spend it on, remember? And it’s taken you ages!’ ‘It doesn’t matter. I’m not accepting any money from you, and that’s it. I do free tattoos for the boys all the time – Jimin’s got several from me. Just see it as a gift from an old friend,’ he says simply, with a grin, and I can’t help the small smile on my face. ‘Thank you, JK,’ I say, and he grins even wider, his cute little bunny teeth on display. ‘No problem, y/n.’

‘Are you done now? Can we move on to the next thing?’ Tae says excitedly, Jungkook nodding with a laugh at his eagerness. ‘Come on, then,’ Tae says, grabbing my hand and pulling me up, dragging me out of the dining room. He leads me towards the back door, pushing it open and moving aside to let me out first, and I gasp when I see the garden. ‘I know it’s not that big but it’s the best I could do,’ Jimin says as I slip on the sliders that he puts down on the floor in front of me, stepping out onto the light wood decking.

Tae and Namjoon’s garden is beautiful – it’s obvious at least one of the two loves gardening. The decking has steps down onto the grass which is healthy and neat, a dark, rich green, and there are trees and flowers of all different colours lining the light wood fence that runs around the garden. Fairy lights are strung up around the fence, casting a warm yellow glow across the space and there’s a fire pit in the middle of the garden, a small fire inside it with a garden furniture set placed around it, four armchairs and two two-seaters.

‘Oh, my God, this is great! Did you already have a fire pit?’ I ask Tae who shakes his head. ‘Jimin went out to buy one earlier,’ he says, and I look to Jimin with a frown. ‘You shouldn’t have. Let me give you the money for it,’ I say, and he shakes his head before I even finish speaking. ‘I don’t think so. Come on,’ he says, holding out an arm to me, and I take it with a begrudging smile. He leads me down the decking steps, across the grass to the bonfire and he sits down in an armchair as I sit in the two-seater beside it, Tae and JK following behind, the leftovers of the Chinese food in Jungkook’s hands.

‘Where are the others?’ I ask, and Jimin looks a little sheepish. ‘I, um, went to get supplies when you were sleeping, right? Well, I bought the fire pit, but I forgot all the other stuff,’ he explains, rubbing the back of his neck embarrassedly, and I hold back a laugh. ‘What other stuff?’ I ask, just as Jin and Hobi appear through the back door. ‘The biscuits, the chocolate, the marshmallows, the roasting sticks. Everything else,’ Jin says exasperatedly, the two of them coming to join us.

‘Where are the other two?’ Tae asks as they take their seats, Jin taking a prawn cracker from Jungkook’s lap, the boy shooting him a dirty look. ‘Putting the stuff onto plates for us, because a couple of us are too messy and, apparently, we’ll drop melted marshmallows and chocolate onto the grass and ruin it,’ Hobi says with a roll of his eyes, and I have a feeling he’s quoting Namjoon. ‘Am I wrong, though? There’s still the patch of grass that’s discoloured after Jimin spilled beer on it!’ Namjoon exclaims, holding blankets in his arms, Yoongi following behind with a tray in his hands, paper plates atop the tray. ‘How many times do I have to apologise for ruining your grass before you forget?’ Jimin asks tiredly as Namjoon and Yoongi take their seats, and Namjoon gives him a hard look. ‘As many times as it takes for the grass to return to its proper colour,’ Namjoon says, and I can feel an argument brewing so I quickly change the subject.

‘Shall we get a picture?’ I ask, not realising that another argument is about to start, over who’s going to take the picture. ‘Oh, my God, we’ve been arguing for five minutes! Just let me take the picture!’ Yoongi exclaims (after five minutes of arguing), his annoyance only half-hearted, and I pout. ‘No, Yoongi, I want you in the picture. I want us all in the picture,’ I say, Jin sighing and grabbing his temples before sending Namjoon to ask their nice neighbour, Mr Lee. I feel bad for disturbing him at 9.09pm on a Wednesday, but they insist. It’s more than a little awkward when he starts asking questions and Jimin says with a grin, ‘we’re ticking off y/n’s summer bucket list because she’s got a brain tumour and she’s going to die in a week.’ It’s like he can’t take the pictures quick enough after that, practically sprinting out of the garden once he’s done.

Yoongi gives us all our plates, Jungkook balancing his on one knee whilst he eats his Chinese food, and I feel pretty stupid when all of them instantly know how to put their s’mores together. ‘Have you never had s’mores before?’ Jimin asks, and I shake my head sheepishly. ‘Here, let me show you. You gotta just put a marshmallow on a stick,’ he says, and I copy the way he spears it on the stick. ‘Then you hold it over the fire for a little while, until it goes a bit brown, and then turn it over the other way,’ he says, holding his stick over the fire, and I do the same, turning it the other way once it’s browned a little. ‘And then you get a piece of chocolate and put it on top of a biscuit. And then you put the marshmallow on top of that. And then you put a piece of chocolate on top of the marshmallow, and another biscuit on top of the chocolate. Then you take it off the stick and… you got your s’more!’ he says, holding his s’more up with a flourish. It looks a lot neater than mine, but I’m still proud of myself for managing to not set fire to anything. ‘Just wait a little for it to cool down. Kook learned that the hard way,’ Jimin says pointedly, the other boy pursing his lips embarrassedly as we all laugh.

The sky is still high and light with clouds, though the sun has disappeared over the horizon, the moon a pale white circle against the soft blue. The air is still warm, but not with the humidity of earlier today, a cool tinge to the breeze that glides across my skin. It’s the perfect summer evening, made even better by the light conversations we have and the alcohol that Taehyung brings out for us – Jimin, Yoongi and Jin drink their soju like it’s going out of fashion, Jungkook, Namjoon and Hobi nursing beers instead whilst Tae and I sip on our Malibu and coke (very little Malibu actually in it). The s’mores are amazing, the warm gooey marshmallow, rich melty chocolate and crunchy sweet biscuits a perfect combination – whoever came up with s’mores is an actual genius.

‘Do you want some more s’mores, y/n?’ Hobi asks once my plate is empty, and I groan, the boys all laughing. ‘I think I’ll explode if I have another. I’ve eaten more today than I have in the last week,’ I say, clutching my stomach. ‘I’ll have one, Hobi,’ Jungkook says with a cheeky grin, and Hobi shoots him a glare, no real venom in it. ‘Get yourself one.’ ‘You offered to y/n!’ ‘You’re not dying in a week,’ Hobi says, eyes instantly flitting to me to see if I mind, but I’m already bursting into laughter, my head falling onto Jin’s shoulder which is shaking from his laughter too.

‘Are we terrible for joking about death?’ Jungkook says once we’ve all calmed down, and I sigh. A cold breeze rushes past us, biting at my skin, and I shiver, pulling my blanket closer around me and shuffling forward in my seat so I sit closer to the bonfire. It’s gotten so much cooler so quickly, all of us wrapped up in blankets. ‘What can we do but joke about it? I think I’d cry if we didn’t,’ I say into the silence, the boys all just listening as I stare into the flickering flames, deeply inhaling the smoky scent in the air.

‘It still doesn’t feel real. How do you prepare yourself for death?’ I ask, voice a little shaky, and Jin puts a hand on my shoulder gently. ‘I wish we could tell you, y/n, and make it easier for you, but it will never be easy to see someone of your age die. Old people, who have lived their lives, they can prepare for death. I don’t think you can. And I’m sorry for that, I really am. We all are,’ he says softly, his kind words bringing a sad smile to my face. ‘Thank you. Thank you all, for doing all this today, and Namjoon and Taehyung, for opening your home to me,’ I say, all of them reflecting my sad smile back at me.

‘We’d have done it even if you weren’t dying, y/n. Please, don’t think we’re only doing this because you’re dying. We’ve all known each other since we were kids. And look at all you did for us. We’d have done all of this for you regardless of your health if you asked us to,’ Namjoon says, and I look at him in confusion, wondering what he means. ‘What did I do for all of you?’ ‘We were talking about this whilst you were asleep. Remember when I was riding my bike past your house, and I fell off it?’ Namjoon asks, the others laughing at the mention, and all of a sudden, a memory I didn’t even know I had appears in my mind.

We must’ve been around 7; I don’t remember what I was doing, but I saw Namjoon on the floor outside of my house through the window, clutching onto his knee with his bike beside him. I ran and got the plasters from where they were in one of the kitchen cupboards, and practically sprinted outside. I sat down on the floor beside Namjoon, and there were tears in his eyes, and his knee was bloody. Not knowing that you’re supposed to clean a cut and disinfect it, I’d just put a plaster on for him, and then my parents saw what was going on, and took Namjoon inside to properly clean the cut, me following them in with his bike in my arms, and then they phoned his mum to let her know what had happened. Our school was a tight knit community and all the parents were friends with each other – they all had each other’s phone numbers.

‘How do you remember that?’ I ask, smiling at the memory, and he grins. ‘It’s the first act of kindness I remember experiencing. And it might have been simple, but it taught me to be kind, and do things for people when I didn’t have to, because that’s what you did for me,’ he says, and then all of the boys share the stories of things I did for them over the years we went to school together.

For Jin, I’d lost one of his crayons and then I’d brought in a whole new pack for him. When his mum mentioned it to my parents and thanked them for buying Jin a new pack, they’d had been confused; they hadn’t bought a new set of crayons. I’d taken in one of my own sets for him without telling them. Jin brought it into school every day and shared it with me and only me, and wrote both of our names on the packaging so that everyone would know that they belonged to the both of us.

For Yoongi, I’d recorded his piano performance at the awards’ evening because I’d overheard his mum saying she’d forgotten her video camera at home and didn’t have a smart phone to record it on. I’d sent it to him that night, letting him know why I’d recorded it, and he’d thanked me before showing his mum. I never knew this at the time, but apparently she was so happy that she cried, and made Yoongi give me a present to thank me. I didn’t know that Yoongi was the one who put the thank you card in my locker with a necklace in it a couple weeks later – he’d been too shy to give it to me face to face (I’d been so confused, wondering who was thanking me and for what). I still wear the necklace sometimes – it’s a silver chain with a little butterfly pendant that rests between my collarbones.

For Hobi, I’d spotted a random bag in the school car park, and checked the belongings to see that it was Hobi’s – his wallet had been in there, along with a load of money and some dance clothes. I’d brought it in the next day and gave it to him, and he’d thanked me profusely. What I didn’t know at the time was that his mum had worked multiple jobs in order to fund his dancing, including buying him all that dance gear, and that he’d thought that someone would’ve stolen it all because they were worth a lot, as well as stealing his wallet. But instead, it’d been returned back to him, with everything still in there.

For Taehyung, I’d been the only one to say I liked his drawing, back when we were little kids. It was of a little alien cartoon character, with a heart shaped head (the same thing he’d been drawing in chalk on the driveway earlier), and everyone else laughed at him and called it silly and said it looked nothing like the real cartoon. But when I told him it was nice and that I thought it was really good, it made him want to draw it more, before he started drawing other things too, and his passion for art had been sparked, all because of a little compliment from me when we could barely write our names.

For Jungkook, I’d been helping clean Dahyun’s house after her house party, and I found him passed out in the upstairs bathroom. I got Dahyun to help me get him into my car, drove him home (I knew his address from a party he’d had once), used his house keys to get him in his house, helped him lie down on the sofa, forced him to drink some water and then left a note beside a full bottle of water to letting him know who’d dropped him off at home. And then I’d locked up after myself and posted the keys through the letterbox. His mum had phoned my parents the next day to thank me profusely, and brought over some cupcakes – they were amazing, by the way.

And for Jimin, maybe the most important of them all – I’d done my end-of-year presentation on eating disorders. We had to do the presentations for our language grade, to show that we could speak with fluency and precision and accuracy, and we were told to do it on an interesting topic so that we would be motivated to write an engaging presentation. Almost everyone else did theirs on superficial things, like their hobby or their favourite celebrity. Mine was one of the only serious ones. Everyone had praised mine – I always was good at language – and I got one of the highest two grades (Namjoon and I competed for the top of the class in every lesson we had together). But what I didn’t know was that, thanks to my presentation, Jimin realised he had an eating disorder. He was virtually starving himself, not eating for days at a time, whilst over exercising, because he hated the way his body looked. And because of the helplines and websites I put at the end of the presentation, he sought help, and spoke to his parents about it. He went to the doctor with his mother, and they put him on a diet plan to get him back to being healthy. I helped him to be healthy again.

My eyes are teary when Jimin finishes speaking. I’m so touched that he remembers, that they all remember the acts of kindness I did for them. And whilst Jimin’s was unintentional, it was still so important, and I’m proud of young me for deciding to do her presentation on a serious topic. I’m proud of her for being such a kind person all the time. This truly is karma – I did these nice things for them back then and they’re repaying that kindness back to me when I need it most. And then I realise why Jimin was so desperate to help me – he just wants to help me like I helped him.

‘So, really, y/n, don’t thank us. We owe you,’ Namjoon says, all of them nodding in agreement, and I beam at them, tears beginning to spill down my face. ‘Don’t cry, because you’ll make me cry!’ Jungkook shrieks, all of us laughing as Jin hands me a tissue, and I dab the tears away. ‘God, what’s wrong with me? I never cry this much usually,’ I say embarrassedly, and Jimin grins. ‘Don’t be embarrassed about crying. I think I’d have cried out all of the water in my body if I were you,’ Jimin says, coaxing a laugh from me. ‘Me, too,’ Jungkook says, sniffling a little, and we all burst into laughter when we see that his eyes are full of tears. ‘My God,’ Jin says, his lip curled up in mock disgust, ‘you really are a cry baby.’ ‘Can you blame me?’ Jungkook asks defensively, wiping his eyes, and Jin’s eyes widen. ‘Yes! You’re not the one dying!’ he exclaims, setting the rest of us off again, our laughter carrying in the cool summer air.

Hard Enough Left Modern AU

Because I miss Ruth

There hadn't been activity on that particular channel in weeks. Every few days Emily would log on, only to be dissapointed to see that nothing had changed. The only activity being comments from other viewers asking when to expect another video.

It had gotten to the point where she had checked to make sure she was still subscribed, and she edited her settings to make sure she'd get a notification the next time there was anything uploaded. It was another three weeks after that, that she had checked the time on her phone to see the banner across the screen.

Rushing through the last of her course work, she threw her backpack on the floor and reached for her tablet. She tapped a fingernail against the screen impatiently as YouTube finally loaded, hitting pause quickly so she could dig her headphones out of the nightstand drawer.

She'd binged Ruth's videos in the span of a few days. She didn't know how girls on YouTube did it, especially with a DIY channel. Starting back from the first videos posted a few years before, the video quality had improved, the girl's editing had improved, and she'd become more comfortable in front of a camera. From cooking, and baking, to personal desk size succulent gardens, or organizing and purging a closet, somehow the girl had made a name for herself on the internet and the most mundane of tasks seemed more interesting when discussed and explained on this girl's channel.

Comfortable in her bed, she finally pressed play and tilted her head as the personalized graphic of a constellation came on screen, which the girl had done a tutorial on also....

When did she have the time to do all this?

She was pulled from her thoughts, and rather startled, to see an exhausted looking version of the girl who ran the channel. Ruth's dark hair was pulled in to a messy bun, circles under her eyes and she looked like she hadn't taken the time to get out of her pajamas. What was most startling, was what looked like a medical oxygen tube beneath her nose.

Looking up into the camera, she waved vaguely with her usual greeting before continuing.

"I've never really shared this, because I never had any reason to-" She held up the small tank of oxygen sitting beside her and grinned flatly. "-but now I do.....so today's video is a bit of a PSA."

Her expression dulled and she stared at the screen a moment. "Get out of the shot."

"I'm not in the shot," came a low response from the corner.

Ruth addressed the camera again. "I have help today."

A few clips were edited in of Ruth and....was that Jesse Hudson?

The Piston Cup driver?

The two were figuring out where to stage Ruth's things, and Ruth watched in exasperation before telling him to leave her stuff alone and let her do it.

"I'm just trying to help."

"This isn't my first video or anything-....no, leave the tank there-"

"Wh-"

"Because that's where I keep it when I'm working here-"

The clip cut back to Ruth's slightly more professional expression and she reached for the camera. "For those of you who keep up, yes, that was Jesse Hudson. Jesse, say hello."

"Hey." He muttered with a glance up from his phone.

"We're twins. Before you flood my inbox, I'm older, it's not that exciting to have a celebrity sibling and-....." Ruth paused and stared at the screen again. "Did you just kick the footboard of my bed?"

Just barely in the frame, Jesse's Nikes could be seen as he kicked off from the bed again, spinning the chair slowly. "Yeah, cause you lie."

"I do not lie. You're- you know what, this is my video, and I'm not spending ages editing it so now the world can see how sulky you are."

The chair rolled further in to frame and Jesse only shrugged a shoulder before going back to his phone.

Ruth took a slow breath, for effect or because she needed it, it was hard to tell, before launching in to a lengthy explanation of why she had been absent for so long.

"I don't have an actual diagnosis, no one can give me a specific name for it-"

The more she spoke, the more emotional the video became. The natural lighting of her bedroom made the video a little surreal, the way it picked up the threatening shine in the girl's eyes wasn't staged, or planned, or even wanted. It was apparent that a portion had been cut. She looked like she had been crying, and instead of lazing in the background, Jesse was sitting beside her at her desk, chin rested on his hand as he looked between her and the screen silently.

"Some of you wonder how I have time to do any of this, some of you are very rude in your questioning of how I have time-"

The clip had been edited again and a more composed looking Ruth stared at the camera before speaking and glancing over her shoulder. "Our older brother thought there was a problem and I'm sure Jesse is getting lectured for something...."

She'd edited captions in, and color coded them for each brother. They appeared at the bottom of the screen while she made a show of her impatience on camera.

"Can you for once in your life-"

"She asked me to help-"

Ruth made eye contact with the camera a moment before continuing, explaining that her illness started back in the early 2000s. Doctors had originally treated her for bronchitis, then walking pneumonia. X-rays, blood tests, screenings and different antibiotics had all been tried with only mininal results. There was the possibility of an autoimmune disorder but they hadn't started that round of tests yet.

"I don't always have an oxygen tank, this is a bit of a new development...." She eyed the small cylinder beside her and it was obvious to see that she was still trying to wrap her head around it. With a shaky and watery smile she looked back at the camera.

"It's extremely hard to be looked at the way people do when you have something like this basically tied to your side."

She ignored her twins' return to his chair beside her.

"For some it's an insulin pump, for me it's an oxygen tank, for others it's chronic pain. We know we have it, while the general public tends to look at us like we're looking for sympathy or leaching the system. Just because it's an invisible disease doesn't mean it isn't there."

She looked at her brother before leaning back in her computer chair. Drawing her knee up, she wrapped an arm around it.

"Where had we gone the other day? Was it the grocery store-"

"Doctor appointment."

"Oh, yeah. It was." Ruth frowned. "I've been issued a handicap sign for the mirror of my car....they haven't sent the new license plate yet. I didn't even want to use it but it was a really bad day for me. My family convinced me to use it to park as close as possible, and then wanted to get me a wheel chair."

She pursed her lips, taking a moment to gather her thoughts and looked in to the camera.

"Some middle aged woman came right up to me and told me she thought it was horrible that I would do such a thing for a closer space. That as a young woman in my twenties, I was more than capable of walking the extra hundred feet and had no right to be using my grandparents' issued sign like that."

She looked away from the camera and swiped a tear from her eye. Barely seen on camera, it looked like Jesse might have nudged her chair with his foot.

"I was so upset I showed her my signature on the back, and then my driver's license. Just because I'm in my twenties doesn't mean-"

She shook her head and sighed while rubbing her forehead.

"It's hard enough for people like myself to be so restricted when we're supposed to be 'enjoying our youth'...don't be that person. Just.....take a moment to realize that we're not always how we appear. It's a smack of pride to even have to use that handicap sign. I just stared at it hanging from the rearview mirror, convincing myself not to take it back down for some complete stranger to then treat me that way?"

"That was the appointment they gave you the tank." Jesse muttered lowly.

"It was." She agreed. "Like that wasn't a hard pill to swallow already...."

There was a brief pause, and it was obvious she was mentally shaking herself. She diverted the topic somewhat, sitting up straighter and getting composed.

"So that's where all my time comes from. This started as a hobby a few years ago and because of you-" she gestured to the screen. "-faithfull viewers and subscribers, I've networked with a few different small businesses, I work from home. I have my Etsy shop, I've been able to review different products and be sponsored by those companies. If you haven't visited, be sure to check the links in the description. There's my Etsy shop, Instagram, Twitter, and links to my favourite channels."

As an afterthought, she added. "Maybe I'll do more videos on this, I'm not really sure. Leave your thoughts in the comments."

It was her usual send off, but for some reason it meant so much more after a fifteen minute video explaining something so personal.

"Remember guys, there's always a reason to smile. Until next time."

The personalized LittleDipperCo. appeared on screen alongside the subscribe button and list of links before the next video in the playlist began to buffer.

She hit cancel and set the tablet aside, trying to digest the last fifteen minutes. She'd ordered from the Etsy shop, LittleDipperCo. before and had recieved a little handwritten note alongside all the little items she'd ordered.

Stickers, bookmarks, a personalized mug for her dad, the earrings she was currently wearing....because she'd ordered so much and had been so patient, Ruth had added a few small items and a personal thank you card.

She was her favorite shop, there was something unique about LittleDipperCo.-creations by RuthAnne- that had always stood out to her.

Grabbing her tablet, she went back to find the link and glanced up at her open doorway in surprise when her brother appeared.

"Did you see what he's saying about me?"

"What who is saying-"

"Hudson thinks he's being funny-"

"Get off of Twitter, Alexander."

Alex held his phone up and read the time stamp. "An hour and a half ago-"

Emily glanced back at the upload time of Ruth's video. It was only about half an hour old.

Jesse Hudson was apparently roasting her brother in that video.

She blinked a few times and hid a smirk, busying herself with reaching for a hair tie. "Don't you have some kind of conference to get ready for?"

Another alert popped up as he made a show of leaving her doorway and Emily shook her head while clicking the link.

Let's lighten the mood! PSA- BLOOPERS AND REAL TALK.

 sick!dick au. part five. 

read part one here. read part two here. read part three here.  read part four here. 

Wally isn’t sure where to begin. The Graysons had been in the circus for generations, and although not everyone born into the family had stayed, those that scattered to the wind had married, remarried, moved, and all but vanished into thin air. Even those that hadn’t pursued the family tradition of acrobatics had mostly passed away at that point. Dick has few living relatives, and none that had been close or well enough to take him in. Orphan’s lot.

So he starts at the beginning, or at least the only logical beginning he can think of. He gets his hands on Dick’s birth certificate. Through that, he starts to build a family tree. He knows all too well what had happened to his parents, Aunt, and Uncles, so he doesn’t bother with their Death Certificates. However, through each Birth Certificate he can find on record on (illegally hacked but no one has to no that) online databases, he can start to piece together a picture of each branch of the family before the murder. He finds Dick’s Grandparents on his mother’s side, but his paternal line is a dead end. He knows that Dick has a living Uncle, paralyzed in the fall at Haly’s, so at least there isn’t total loss of hope.

Wally does most of this research at the Library just down the street from the hospital, so he can get on public databases without so many walls to work through. If he’s not at the library, he’s in Dick’s room, working from his computer. He only goes home to sleep when visiting hours are over, always with a bitter taste in his mouth as he walks out knowing that he shouldn’t wish too hard that he could stay the night – he knows that they’ll only let visitors stay after hours when they know a patient is about to pass. He calls in to work and takes a leave of absence, met with no resistance from his Boss given the circumstances – it’s all over the news at this point.

Billionaire Bruce Wayne’s Adopted Son Admitted to Intensive Care.

Dick Grasyon Eloped In Secret Wedding To Gay Lover.

Drugs To Blame For Leaving Wayne’s Son In Coma?

Insider Tells All In Dick Grayson Case – You Won’t Believe What Really Happened!

Wally ignores it, or tries his best to anyway. The Media mostly ignores him, and the few times bullshit paparazzi have tried to hound him for pictures and questions, he’s shouldered his way through. He’d love nothing more than to break their fucking cameras and their noses, but he’s in a race against him and can’t be bothered to spare a moment for them. That sentiment isn’t entirely shared by the whole Wayne Clan, though – Cass kicked a journalist following her and Tim home from school in the face after he made some comment on Dick having it coming with his immortal lifestyle. Bruce was already gladly handling the Lawsuit without batting an eye. His only public comment was that he was proud of his daughter for her strong conviction to defend her family. No questions.

Dick is – well, he is awake. Sometimes. It was a little hard to tell. He’d been in a coma for several days before finally coming out of it. He slept a lot, but even when he was awake he wasn’t quite there. Seizures were becoming more frequent. When Wally was there, he was a little better, holding onto his husband’s hand and just listening as Wally whispered to him. Still, there were no disillusions – he was going downhill fast.

Dick’s mother’s side had been a little easier to track down, but no Death Certificates showed any clues through the cause of death – no related illnesses. And the fact that Wally has been focusing on Death Certificates was an irony that ‘snot lost on him – he knows that’s where Dick was headed if something doesn’t change. He gets to a point that he can somewhat safely rule out the maternal side. So, that leaves the paternal side. It really is the Graysons, so far as he can tell anyway. It could branch off somewhere, but that’s beside the point. Dick’s Uncle, Richard Grayson, has finally responded to his attempts to contact him.

It fucking kills him to do it, but Wally leaves town. He gives Dick a kiss goodbye when he’s still asleep, tells the family to call him if anything changes, and heads out across the country to find him. He’s been living in Oregon since the Fall. He explains, when Wally first arrives, that he’d been hesitant to reply at first because he knew Wally’s connection to Dick. He’d always felt guilty that he had been unable to take Dick in after their family’s deaths, and his own trauma coupled with that had lead him to avoiding the matter entirely, something he deeply regrets. However, when he’d finally opened the message and actually read what was happening, he’d contacted Wally immediately. Wally assures Richard that he has no grudge against the man, that he understands, and just wants to find help for Dick.

Richard informs him that he recalls his father telling him about a few family members that had passed away either suddenly or very slowly, depending on the circumstances. It’s a painful reminder of what could have happened to Dick so many times if he hadn’t been there for his seizures. Richard gives everything he has on the family, all physical copies of death records and the like. Wally pours over them for days. They’re not specific, and its clear that often times there wasn’t the technology present at the time to accurately diagnose each person’s death. However, a sort of pattern emerges; sudden fits, loss of consciousness, chronic migraines, and some gruesome head injuries from falls. The cases in the family are few, but they’re present, and it’s enough for Wally to be able to paint a picture of what has happened to Dick and where it could lead – ie, nowhere good.

Finally, Wally has a break through. He’s been calling every hospital and town record office he could get a hold of trying to get more information, and it’s mostly been dead ends. Half the time, the only reason he gets any information at all is because he’ll email them his marriage certificate to prove that he’s Dick’s husband – and once again the bitter irony hits him that this is the only way he’s making progress and he’d been the one that was so selfishly against it at first. In any case, one hospital claims that they can’t give out patient information without consent, and the patient in question is very private.

Wally doesn’t even care. They’re a current patient. Which means they’re alive.

As soon as he can, he books a flight out to Singapore, where Thomas Grayson is living as an expat at an In-Patient care facility. He’s a distant cousin of Dick’s – or uncle. To be honest, Wally’s not entirely sure, didn’t really have the time to count out the distant of the relation, but it doesn’t matter. It’s enough. He’d Zeta out there if he could, hell he’d run if it was faster, but he knows he has to leave a paper trail if he’s going to come back with any sort of diagnosis. So, he takes a plane.

He’s on the plane, sitting on the runway after a long layover in Tokyo when his phone starts ringing – it’s Tim. Wally’s heart fucking stops cold, and it’s all he can do to keep his hands from shaking when he answers the phone and raises it to his ear. The poor woman sitting next to him looks a bit alarmed, but Wally pays her no mind as he forces himself to speak without his voice breaking. “Hello? Tim? What is it, what’s going on? Is everything okay?”

Tim responds with a bit of a tremor in his voice, taking Wally’s rushed questions in stride. “It’s fine, nothing’s wrong – well, I mean… I mean Dick’s okay, nothing’s really changed, he’s just…”  There’s a bit of a commotion in the background, and Wally can just make out Dick’s voice underneath the stronger tones of Bruce, Barbara, and surprisingly enough, Selena. “He’s having a hard time. The Doctor’s say he’s not coming back to baseline after his last seizure… sort of like he’s half asleep. He’s got a migraine, so he’s having trouble calming down. He, uh… he keeps calling for you. Do you think maybe you could try talking to him?”

“Yeah,” Wally replies without hesitation. “Yeah, of course. Just hold the phone up for him.”

There’s rustling and movement on the end of the line, and the voices growing a bit louder as Tim seems to get closer to the bed. After some more movement and murmuring that Wally can’t quiet pick out, the line goes silent for a moment, and then all he hears is Dick’s breathing, broken by whimpers and hitched sobs, sounding so unlike Dick that Wally feels something inside him shatter. Surely enough, just as Tim said, between incoherent moans, Wally catches hints of his name.

“Dick?” he breathes.

There’s a long pause before a response. “Wall…”

Wally swallows past a thick lump in his throat. He leans against the cool glass of the airplane window, looking out at the lights of the runway, tears already blurring his vision. “Hey, babe,” he tries to smile, hoping Dick can hear it in his voice. “Tim told me you’ve been having a rough time, huh?”

“Wall… where…? I n-need… here…”

Fuck. Wally closes his eyes, pinches the bridge of his nose, and just takes in a slow breath to keep from falling apart. “I know, baby, I’m sorry. I’m so sorry I can’t be there right now, but I’m going to come back real soon okay? I’m trying to find you some help, and then I’ll come back, and you’ll be okay. You’re going to be just fine, alright?”

“Wall…” Dick’s voice cracks horribly. “I-I… Wall…”

A hitch rises up in Wally’s chest, and he has to clench his teeth just to keep from sobbing. He’s never heard Dick like this. “Listen to me, baby. You’re gonna be okay. You don’t have to talk, just listen to my voice. I’m right here. I’m right here with you. I love you so much, Dick. I’ll be back soon, and you’ll get better, and we can pretend none of this ever happened. How’s that sound? But for now, you’ve got to calm down. Just take deep breaths, okay? I’m right here.” His voice is a low, soothing whisper as he talks sweet nothings with tears running down his cheeks

“W-Wally…” It’s just a bare breath of his name before suddenly the line erupts into chaos. There’s rapid movement, blaring monitor alarms, and an uproar of voices. Bruce’s voice is a deep thunder rolling over the others, calling Dick’s name, demanding help, trying to keep everyone under control. Wally listens in complete fucking horror, as the phone is dropped and the call abruptly ends.

People are staring at him. Wally doesn’t care. In that moment, it’s all he can do not to jump out of his seat and run back out into the airport, to book a flight back to America as soon as possible. But the doors are already closed and the plane is taxiing out onto the runway for take-off.

There are tears streaming down his cheeks as he slowly lowers his phone. He holds it between his hands, folded as if in prayer and presses against his forehead, elbows on the tray table. He stays like that for the next seven hours, with no reception and no chance of finding out if his husband is already dead until the plane lands.

Im not lazy just sleepy.

All about Idiopathic Hypersomnia Idiopathic hypersomnia (IH) is a sleep disorder in which a person is excessively sleepy (hypersomnia) during the day and has great difficulty being awakened from sleep. Idiopathic means there is not a clear cause. Idiopathic hypersomnia (IH) is a chronic neurological disorder marked by an insatiable need to sleep that is not eased by a full night’s slumber. People with idiopathic hypersomnia sleep normal or long amounts of time each night but still feel excessively sleepy during the day. They may take long naps, but wake up feeling no better or worse than when they fell asleep. IH is similar to narcolepsy in that you are extremely sleepy. It is different from narcolepsy because IH doesn’t usually involve suddenly falling asleep (sleep attacks) or losing muscle control due to strong emotions (cataplexy). Unlike in narcolepsy, in which scheduled naps may help, daytime naps in people with IH are often long(hours) yet unrefreshing. People with IH may experience improvement with medication; however, medications do not work well for all people or may stop working over time.(it’s like a band-aid works for a little while but falls off and stops working) __________________________________________________________________________________ “SO To Whom It May Concern: I am writing this because I wanted to help you better understand some of the issues I face on a daily basis because of idiopathic hypersomnia (IH) or narcolepsy. The first thing I can promise you is that I hide as much of my suffering as possible because showing it would drag everyone else down. This is commonly referred to as our “game face.” If you ask “How are you?” the response you get is relative to how I feel all the time, so it doesn’t mean the same as when you use the same words. If the response is “Good!” it probably means I am really tired but dealing with it well enough to almost function like any other person. There is also a pretty good chance that it is a flat-out lie. If the response is something like “OK” or “fine” I am struggling and needs your help. If the answer is “tired” I am on my last leg. Something more like “crappy” is an indicator that, if you really care, you need to send me to bed and keep the kids or people quiet or take them outside or somewhere else so I can sleep. When you have IH/narcolepsy, your body usually gets plenty of sleep, but your brain is in a constant state of sleep deprivation. People with IH/narcolepsy carry a significant amount of sleep deprivation which only gets worse over time because sleep doesn’t provide relief. The most common symptoms of sleep deprivation are forgetfulness, memory issues in general, difficulties with concentration, decision making, and overall ability to think clearly. The extra effort required to focus on the issue at hand makes it very easy to forget about things that are out of your field of vision, causing problems with anything that resembles multitasking. The emotional results of sleep deprivation are probably the easiest to see, though. I am sure you are familiar with how easy it is to get cranky when you are tired? Now imagine fighting off this crankiness every minute that you are awake and trying not to cry from exhaustion. When you have IH/narcolepsy, your head is often a blur of thoughts and instead of mentally lining steps up in chronological order, everything just blurs together, so nothing goes as planned and you wind up being late for things regardless of how important they are to you, making time management difficult.(even though i can wake up on my own when i have my alarm set i fall asleep during or right after what i had to need to or am currently doing) People with IH/narcolepsy may get medications to help them with energy, mental clarity, etc., but there is no replacement for restorative sleep. Healthy people can’t stop sleeping at night and take a pill in its place, and people with IH/narcolepsy are no different. These meds may help some people gain mental clarity, but they still may be struggling to stay awake most of the time. Or they help some people stay awake, but may do nothing to help with clarity and can actually make it worse. A very good friend of mine says: “My meds just help me do stupid stuff faster.” They may provide the energy to do things, but they can take away a person’s ability to channel that energy properly. Have you ever pulled an all-nighter and relied on high doses of caffeine to get you through the next day? Yes, you made it through the day and you accomplished some stuff, but do you remember how you felt all day? How many days in a row do you think you could do that? That is just about exactly how I feel when my meds are working their best. On top of all of the internal difficulties people with IH/narcolepsy face, other people sometimes just don’t get it. As a disabled workaholic, the thing that really gets to me is the way people tend to think I am lazy. I become accustomed to being criticized for not trying hard enough by people who aren’t putting forth nearly the effort she is.  Like almost every one of the thousands of people with IH/narcolepsy I have talked to or read about in the past couple years, I am constantly beating myself up for what feels like constant failure. I have often been told that I just need learn to cope like other people with other diseases do so I can function like a normal adult.  The problem is that IH/narcolepsy lies right where a person’s ability to cope is supposed to come from, so getting irritated with them for not functioning right is like getting irritated someone with emphysema for not being able to breath right.” __________________________________________________________________________________

One of the first questions people ask me when I talk about idiopathic hypersomnia is, “what’s it like?”  The first way I answer is, imagine sleeping for an entire night and feeling like you’ve gotten no rest at all and that you been up for days without coffee. That’s the first “feeling” I experience when I wake in the morning. Inside my body, I feel like I’m running a marathon while I’m standing still. I don’t know how else to explain the exhaustion and pain. What I’ve found most interesting is that, when I talk about idiopathic hypersomnia, few people realize it has anything to do with pain. However, when your body is always fighting to stay awake, it’s painful. Every muscle in your body is struggling to help keep you awake. It starts in your back (feels a lot like tension), and then creeps into your arms, legs, and everything else. Living with hypersomnia has taught me many things — even before I received my diagnosis. I used to hear a lot of negative talk throughout the years, like this for example: “There’s no reason for you to be as tired as you are — you don’t actually do anything.” I heard that from my own family. Hearing things like that not only hurt, but it confused me. Like why would you say that when you know what i am going through… There were so many days when I’d just come home and cry because I knew I had so much stuff to get done that day, and I knew that if I napped I wouldn’t feel any better, but I just couldn’t do anything else but sleep. _________________________________________________________________________________ Dating someone with IH just learn about it and talk to them about it!

By Jill U. Adams January 2, 2017 (The Washington Post) Why does it take so long to recover from pneumonia?

I was diagnosed with pneumonia in October. The doctor told me to rest, really rest. She told me to expect to feel better after a couple of days of antibiotics, but that I still must rest. She told me I would have good days, but they would be followed by bad days.  After a week of antibiotics, the bacteria causing my illness — presumably Streptococcus pneumonia — should have been dead. Also called pneumococcus, this pathogen is the most common perpetrator of community-acquired pneumonia, which is pneumonia that people get outside hospitals and nursing homes. The antibiotic I received, a common first-line treatment, covers pneumococcus as well as other bacterial invaders.  Yet my doctor told me to expect weeks to months of recovery. Friends with recent pneumonia experience confirmed this rather depressing outlook. Pneumonia can vary in severity so not everyone will need months to recover.  The scientific literature concurs with the anecdotal evidence I collected. One study followed 576 adult patients with community-acquired pneumonia. Thirty days after diagnosis, 65 percent of them reported fatigue, nearly half of whom said their fatigue was moderate to severe; 53 percent reported cough and 36 percent reported shortness of breath. Ninety days after diagnosis, 51 percent reported fatigue, 32 percent cough, and 28 percent shortness of breath. Another study surveyed 500 pneumonia patients age 50 and older and found that tiredness, weakness and shortness of breath lasted more than three weeks, on average.  In addition to the burden of illness on patients, researchers noted burden on family members-turned-caregivers and on the health-care system, including multiple visits to doctor’s offices if not the emergency room or the hospital, says study co-author John Powers, an internist and infectious-disease specialist at George Washington University.  Pneumonia is a serious and potentially fatal disease. In Powers’s study, about 40 percent of people with community-acquired pneumonia ended up in the hospital. Pneumonia and flu together are on the top 10 list of causes of death, according to the Centers for Disease Control and Prevention.  A 2011 study of health-care records estimated that 866,000 cases of pneumonia occurred in the United States in 2004; in patients age 65 or older, pneumonia caused 242,000 hospitalizations and 16,000 deaths.  I went back to the doctor after two weeks because of intensely uncomfortable shortness of breath. She prescribed oral steroids in addition to a rescue inhaler to calm my overactive airways, which helped. By Day 30, I felt reasonably well most of the time, but I still needed daily naps.

Why does it take so long to recover from pneumonia? One reason is that the detritus from an infection of the lung is hard to clear. Antibiotics kill the bacteria, but all the weaponry your body produced to fight the bacteria — mucus, essentially, or sputum, as it’s called once you cough it up — is left behind.  Your clearance mechanisms have to take all that stuff out,” says Steven Simpson, acting director of the division of pulmonary disease and critical care medicine at the University of Kansas. Your airways are lined with hair-like cilia that consolidate microbes and mucus and help move it toward the exit. “It literally takes a lot of energy to keep yourself going with all that stuff in your lungs,” Simpson says. Cough is a primary way to clear the gunk. That’s why doctors advise pneumonia patients not to take cough suppressants. You want to get that stuff out. It’s harder to explain the lingering of symptoms such as fatigue and weakness. “We really don’t understand the biology of this,” says Norman Edelman, senior scientific adviser for the American Lung Association, who practices medicine at the State University of New York at Stony Brook. “Most people think that illness is related to the organism. That’s only one part of the story,” Powers says. “Some symptoms, such as cough and chest pain, clear up relatively quickly. Fatigue, however, takes much longer. That’s because your immune system is still revved up.”  The infection sets off a cascade of events that ramps up inflammatory and immune response, Powers says. “You have the bug, and you have the host response to the bug.”  A revved-up immune response requires a lot energy. “Your body goes into a mode where it’s diverting energy to the immune system,” Powers says. Simpson says the energy drain burns calories and proteins. When illness dampens appetite, that can exacerbate fatigue and weakness. He advises: “Eat good protein and take plenty of calories.” And don’t forget to rest — really rest. “There’s no reason to confine yourself to your bed, but don’t push it,” Edelman says. “Don’t make yourself exhausted.” What about shortness of breath? This was the most bothersome of my lingering symptoms. Air would suddenly feel thick in my lungs, and my upper back would start to ache — the stress of labored breathing, my doctor said.  “Pneumonia can trigger a syndrome that is asthma like,” says Powers, who has experienced it. “It’s not asthma. It’s a hyper-responsiveness of the airways.” Triggers such as exercise or cold air can lead to that very tight feeling in the chest and labored breathing.  I felt as if I had a good idea of the scope of this illness — both from my doctor and from a handful of friends with experience. My case was not severe by any measure — I was never considered for hospitalization — and I don’t have preexisting conditions affecting my lung function, such as asthma or chronic obstructive pulmonary disease. I can work from home and steal naps during the day. Yet I was still unprepared to deal with the worst bad days and sought medical care three times in that first 30 days. This, too, is not unusual, Edelman says. “As physicians, our main job is to reassure patients.” Vaccines reduce risk: To reduce the risk of pneumonia, two vaccines are recommended for people age 65 and older: Prevnar 13 first, followed by Pneumovax a year later. That series sets you up for life, although you should continue to get annual flu shots. The Centers for Disease Control and Prevention also recommends vaccinating babies and children younger than 2, and people age 2 to 64 who have high-risk conditions such as a compromised immune system. (Recommended vaccines for children include Prevnar 13 in a series of booster shots in the first two years of life.)

Chronic Fatigue Syndrome

Even though I’m not sure if it’s going to do any good, I’m thinking of going back to my PCP and seeing if they’ll be open to exploring a diagnosis of chronic fatigue syndrome for me. I’ve been dealing with vague aches and pains and lack of energy on and off for years now, and it’s always been explained away by some other condition. At one point it was related to my allergies, and dosing on Flonase helped a lot. At another time it seemed to be a Vitamin D deficiency, and I was given vitamins that seemed to help me for a while. I’ve been checked for anemia and thyroid problems, and all tests have come back normal. I don’t have high blood pressure. I even thought it might be PCOS, and I had an ultrasound done on my ovaries and all the results- thankfully- came back normal.

So, what’s wrong with me? I’ll feel like I’m coming down with a cold, replete with mild sinus/head congestion, aches and pains, and an overwhelming desire to sleep. Sometimes I feel like it might be all in my head, a side effect of my depression and anxiety. When I look closely, however, there has been some physical exertion beforehand. The main marker of chronic fatigue syndrome is that you’ll be profoundly fatigued from what should be considered normal activity.

Case and point, driving to my mom’s house. It’s only a two-hour drive there and a two-hour drive back, but just getting there seems to take so much effort sometimes. So much so, that I rarely travel there and go back on the same day; I stay overnight. Also, when I went there and did the birthday party for my niece- which, was extremely enjoyable for me- I felt tired for days. The trigger of my current fatigue was an 8-hour shift at my job on Saturday, followed by a trip to the laundry mat on Sunday. After the 8-hour shift I slept for 14 hours, and last night I slept more than 10 hours, followed by a 3.5-hour nap today.

The kicker? I still feel tired.

An additional sign of CFS is not feeling rested…after resting. They are required to do tests to make sure it isn’t caused by a virus or some other underlying condition, including depression. CFS can cause depression, though, so this makes it extremely difficult to diagnose. The doctors must figure out whether the symptoms of CFS are really caused by the depression, or whether the chronic fatigue makes people depressed. Not being able to work or do other activities for as vague and undefinable a reason as just “being too tired” can be extremely stressful and frustrating, but at the same time depression by itself can be so discouraging that you can easily become too tired to function.

One marker that can help with diagnosis is that many other conditions that cause chronic fatigue can be improved by vigorous exercise a few days a week, whereas vigorous exercise makes chronic fatigue syndrome worse. People with CFS will exercise and instead of getting that “runner’s high” and all the good endorphins, will simply feel exhausted for days. I’ve experienced this to a certain extent, but not consistently. Sometimes exercise does pep me up, other times it just makes the other tasks I need to do even harder (note: mild exercise does seem to help when I can manage it).

That’s another fact about CFS- it can come and go, but generally it should last for 6 months or more before it can be diagnosed. I haven’t tracked it enough to see exactly when the symptoms began and ended. Sometimes my mood can increase without a corresponding increase in energy, but of course if you’re happy you tend to have a little more energy, so I don’t know for sure. I figure that these are things that I can discuss when I go to the doctor.

Ideally, I’ll be able to get up in time to make my appointment, but with the way I’ve been feeling I really don’t know. A huge part of getting a diagnosis for me is having legal standing if I need to ever defend myself regarding my missed work/activities. I guess just having schizoaffective disorder and taking psych meds could explain the fatigue to some extent but having a formal diagnosis of CFS could help me to get more treatment covered by insurance, although there is no specific treatment for CFS.

My boyfriend told me today “You are worth more than the labor you can put out, more to me than words can even describe” and that meant so much to me. I do my best to show up and work hard, and sometimes because of the nature of this illness I feel like I’m weak for not being able to just “suck it up” and “push through.” I would be so happy if this were just something that I could treat with a specific diet or treatment plan, but like I said, there is no specific treatment for CFS- assuming that is even the cause of these mysterious illnesses. We did have some weather changes, which typically do make it much worse for me, but that still doesn’t explain the underlying cause.

I don’t know if anyone will see this and respond, but if you do, please tell me about your experiences. This is unexplored territory for me and I would love to have some input.

November Health Update

Friends and Family,

I have been thinking about whether I would share a recent health update on Facebook/social media and I have decided I would because I feel it is so important to educate and spread awareness. I have always shared updates about my chronic illnesses here to keep my family posted, but also to educate as many people as possible since so many people don’t understand anything about chronic illness and how it impacts someone’s life. I’ve always known people may pass judgement as a result of these posts, but I feel a deep responsibility to speak out since I am one of the lucky ones.

There was a time, about five years ago or so, when the doctors were telling me I would never lead a normal life and I should apply for disability. They were prescribing invasive medication and recommending surgeries left and right, making it obvious they really had no idea what was going on or how to “fix” me. I was 19 years old. I had big goals for my life and I wasn’t willing to give up. Thankfully, I had great medical insurance and support from my family and I was able to look into alternate, more natural methods to cope with these illnesses. These natural methods are why I am able to function so well today and live life fully. Again, I am one of the lucky ones. Most people dealing with chronic illnesses don’t have access to the resources I did and I am grateful every day.

As most of you know, today I live in Jersey City and I work in Manhattan. I found a job with a company I really love this year and a role that makes me excited to go to work. I do life with the love of my life and the best person I know, Devin, and I have the cutest cat in the world. I have met amazing people since I moved to this area and I am sure many will be lifetime friends. I truly have a blessed life and I wouldn’t trade it for the world.

This year, however, I was also diagnosed with a new condition, Intracranial Hypertension. I had been having the symptoms for years and yet again, doctors could not figure it out and were throwing pills at me. My pain levels became excruciating daily at the end of 2017 and through most of 2018 and I became determined to get answers. All of this led to a weekend in the ICU with a fantastic neurologist who was also determined to find the answer, and he did.

I am getting to my point...

Following this diagnosis, I have had to make several adjustments. I have to take medicine every 12 hours, almost exactly, to manage the pressure and pain. This medicine is hard on my stomach, so I have had to go back to a more limited diet. The medicine also makes me even more tired than I was before, so I prioritize eight hours of sleep a night and rarely make exceptions. I have good days and bad days, but there are more good than bad days now. Finally, and most importantly to this post, I am unable to take birth control pills because they exacerbate my condition.

Most people who are close to me know that I was diagnosed with a genetic condition, Ehlers Danlos Syndrome, at 12 years old and very soon after that decided I would not be having biological kids. When I was this young, my thought process was simple. If the condition is genetic, I don’t want to pass it along. I hadn’t even gone through the worst of my health issues at this time, but I still didn’t think it would be fair to pass it down to a child.

Fast forward 5-10 years later, and I had never had the desire to have biological children, and my health was always a major concern. Looking back, I made the decision not to have children very early on and was at peace with it, but when I was 19, the decision was really cemented. I was a freshman in college and I had to drop out because I was so ill. I was in and out of the hospital for a year or so and had a few near-death experiences. I knew that I would never, in a million years, wish this on my worst enemy, let alone an innocent child. If there was any chance my child would be sick like I was, I wasn’t taking the risk. Not to mention, my life would be in danger during a pregnancy because of my health issues. Intracranial hypertension was just one more diagnosis, one more reason I knew I had made the right decision early on.

On November 29th, 2018, I will be having my Fallopian tubes removed (permanent sterilization) in Richmond, VA. It has been a challenging journey over the years to explain my reasoning for this surgery to doctors and friends and family and receive reactions like, “You are too young to make that decision”. I kept asking every year at the gynecologist, but I knew this surgery likely wouldn’t happen until I was closer to 30 and I was okay with that because I could take birth control. In light of my new diagnosis and the fact I could no longer use birth control, I knew I had to find a doctor who would listen to me, listen to my story, and trust that I knew what was best for myself and my body, even if I am young. I am so grateful to have found this doctor at Virginia Women’s Center.

There are a few people who have been instrumental in this process and I could not have done it without their support. Fighting health battles is exhausting and these people kept me going. My mother has been my biggest advocate since Day 1, and she fought to find answers when I was young which led to my Ehlers Danlos diagnosis. My mom has been by my side through every sick day, new diagnosis, everything, whether she is right next to me or we are hours away from each other. My mom came to the doctor’s appointment in Richmond this fall to support me and provide background information that supported the fact I was 100% sure I wanted this surgery. I will also be staying with her after the surgery and through December as I have follow ups. My Papa, mom’s dad, has also been extremely supportive over the years and with this situation.

Devin is the most amazing man and has loved me so well and unconditionally over the past few years that we have known each other and dated. This situation has been no different. I told him about this when we first started dating and he has always been on board and in agreement. He has taken care of me almost as much as my mother at this point during flare ups at home or when I need to go to the hospital. Devin’s mom has also been one of my biggest supporters with this situation and in general as she understands chronic illness on a personal level.

I am posting this knowing that this is a controversial topic and there will be varying reactions. These reactions will range from full support to thinking that this is absolutely wrong and I shouldn’t be doing it. You probably have questions, like:

What does Devin really think?

What if you change your mind?

Why are you having your Fallopian tubes removed and not “tied”?

What are the side effects of the surgery?

I invite you to ask me these questions in a private message if you have them as I truly aim to educate. For the past few years, I have felt I am not in control of my body, future, or health because I am young and female. Doctors and people I don’t know very well have told me countless times that I will change my mind. It has been frustrating and depressing, but I continued to advocate for myself and my health and happiness anyway.

I want anyone who reads this far to come away with a few thoughts:

- Chronic illness is a daily fight and you do not understand unless you go through it or are around it constantly.

- Women have the right to decide what to do with our bodies and reproductive systems. Period.

- Don’t write someone off because they are young. Listen to them and their story, listen to their view of the world, and gain a new perspective.

- Be your own advocate with EVERYTHING- health, career, happiness. You know yourself better than any other human in the world. Trust yourself and find your happiness. It can be exhausting, and it usually seems so much easier to just give up and take no for an answer. Don’t give up. Keep fighting another day, then another, then another. Stand up for yourself even if others won’t. You will be amazed what can happen.

I hope this helps open minds and educate. I am always happy to chat about any questions you have regarding chronic illness or this specific surgery/decision. Thank you for reading.

Xoxo,

Marie

When the former NFL cheerleader Natalie Nirchi stopped menstruating at age 17, she was diagnosed with polycystic ovary syndrome (PCOS), a hormone disorder affecting up to 10 percent of women of reproductive age. She didn’t initially show any of the physical symptoms, like excess hair growth, cystic acne, or obesity, but a blood test revealed that she had high levels of testosterone and an ultrasound showed cysts on her ovaries.

“My doctor mentioned that one day I might have trouble getting pregnant, but didn’t offer any other information about the disorder,” Nirichi said. Other than the absence of her period, PCOS did not significantly impact her life until college, when she began experiencing shooting pains in her pelvis, mood swings, and rapid weight gain despite a rigorous exercise routine.

“It wasn’t like I turned 21 and started partying, it was like I turned 21 and all of a sudden, I was extremely depressed. No matter what I did, I just kept building this layer of extra weight around my midsection,” she said.

PCOS is genetic and presents differently in each woman of childbearing age. For some women, symptoms emerge shortly after they begin menstruating. Others may not show signs of the disorder until later in life, or after substantial weight gain, and many don’t receive a diagnosis until they are struggling to get pregnant. A community-based prevalence study published in 2010 found that approximately 70 percent of the 728 women in the cohort had PCOS, but had no pre-existing diagnosis.  

Contrary to the implication of “polycystic,” some women with the condition don’t have any cysts. A diagnosis requires only two of the following three criteria to be met: elevated levels of male sex hormones (which can cause excess hair growth, acne, and baldness), irregular or absent periods, and/or at least 12 follicular cysts on one or both ovaries.

“If a woman has fewer than eight menstrual periods a year on a chronic basis, she probably has a 50 to 80 percent chance of having polycystic ovary syndrome based on that single observation,” said John Nestler, the chair of the department of internal medicine at Virginia Commonwealth University. “But if she has infrequent menstruation and she has elevated levels of androgens such as testosterone in the blood, than she has a greater than 90 percent chance of having the condition.”

When the syndrome was first described in 1935 by American gynecologists Irving Stein, and Michael Leventhal, it was considered a rare disorder. Today as many as five million women in the United States may be affected, according to the Department of Health and Human Services, but researchers are still just beginning to uncover the disorder’s full impact.

“Classically, we thought of PCOS primarily as an infertility disorder or a cosmetic annoyance, but we now know that it’s also a metabolic disorder and a serious long-term health concern,” Nestler said.

According to a recent study published in the Endocrine Society’s March 2015 issue of Journal of Clinical Endocrinology & Metabolism, women diagnosed with PCOS are twice as likely to be hospitalized for heart disease, diabetes, mental-health conditions, reproductive disorders, and cancer of the uterine lining. The cost of evaluating and providing care to women with PCOS is approximately $4.36 billion per year.

The definitive cause of PCOS is unknown, but researchers have found a strong link to insulin resistance, a genetic condition often associated with diabetes, in which the muscle, fat, and liver cells do not respond properly to insulin and thus cannot easily absorb glucose (sugar) from the bloodstream. As a result, the body produces higher and higher levels of insulin to help glucose enter the cells.

“The excess insulin that's being produced stimulates the ovary to make testosterone, which can interfere with ovulation, rendering many women infertile,” said Nestler. PCOS is the most common cause of infertility in industrialized nations. “The exact cellular and molecular mechanisms are still being explored and are not completely understood.”

In one study, insulin resistance was found in 95 percent of overweight women with PCOS and 75 percent of lean women with PCOS. Perhaps relatedly, women with PCOS have a more than 50 percent risk of getting Type 2 diabetes or pre-diabetes before age 40.

“We are seeing an explosion in polycystic ovary syndrome in adolescent girls, and I think it’s due to the fact that we are also seeing an explosion in obesity in adolescent girls,” Nestler said. “It’s quite possible that if those girls had remained a healthy weight, that they would still carry the genes that predispose them, but they wouldn’t be expressing the disorder.”

Healthy diet and exercise is the first line of intervention most doctors recommend for overweight women with PCOS. Research shows that a 5 to 7 percent reductionof body weight over a six-month period can lower insulin and androgen levels, restoring ovulation and fertility in more than 75 percent of patients.

Angela Grassi, a registered dietitian who also has PCOS, says that because women who are overweight are likely to experience more insulin resistance than those who are not, they can get locked into a cycle of weight gain. “The more weight you gain, the more corresponding insulin your body produces, and the more you continue to gain weight,” she said.

But this underlying metabolic dysfunction is at work even in women of a healthy weight, according to Daniel Dumesic, a reproductive endocrinologist at Ronald Reagan UCLA Medical Center.

“Research shows that unlike most women, lean women with PCOS tend to burn protein instead of fat while they’re sleeping. This might explain one of the reasons why despite their best efforts, it’s much harder for women with PCOS to lose weight,” he said.

Many doctors prescribe the drug metformin to help regulate the amount of glucose in the blood. The medication is traditionally used to treat Type 2 diabetes, as it makes the body more sensitive to insulin, and decreases the amount of glucose the liver releases. A meta-analysis published online in June in the journal Human Reproductive Update demonstrated that when metformin is combined with lifestyle modifications such as diet and exercise, it has been shown to help women with PCOS lose more body fat, achieve lower blood sugar, and improve menstruation better than lifestyle modification alone.

Regular menstruation is important for the prevention of endometrial cancer. Women with PCOS are three times more likely to have endometrial cancer than women without. When a woman isn’t menstruating on a frequent basis, the lining of the uterus (endometrium) can begin to grow excessively and undergo atypical cell changes resulting in a precancerous condition called endometrial hyperplasia. If left untreated, this can develop into full endometrial cancer. Hormonal birth-control pills are often prescribed to help women with PCOS shed their endometrium more regularly, an important measure for preventing the overgrowth of cells in the uterus.

“If a woman knows from a young age that she may have a more difficult time than her peers maintaining a healthy body weight and reproductive system, than she can make sustainable lifestyle changes early on,” said Dumesic.

Unfortunately, awareness of the condition is not widespread and many physicians do not perform the necessary diagnostic tests or recognize that PCOS has broad and potentially devastating consequences. According to the non-profit support organization, PCOS Challenge, Inc., PCOS awareness and support organizations receive less than 0.1 percent of the government, corporate, foundation, and community funding that other health conditions receive.

Only a small number of researchers receive funding to study PCOS and most of the money goes toward studying the infertility side of the disorder. Nestler says women would benefit if more of the funding went toward researching the metabolic mechanisms of PCOS that underlie the development of diabetes and heart disease.

Dumesic believes the complex metabolic, hypothalamic, pituitary, ovarian, and adrenal interactions that characterize the condition may be to blame for the deficit in PCOS specialists and researchers.

“When any condition crosses disciplines and doesn’t have a full investment in [one of them], it often falls through the cracks. There are elements of reproduction in PCOS, but most reproductive endocrinologists mostly do in-vitro fertilization and are not necessarily interested in metabolism. Medical endocrinologists, who are mostly interested in metabolism, aren’t usually interested in reproduction and ovarian function,” Dumesic said.

For women who don’t receive timely, appropriate care for PCOS in early adolescence, the development of symptoms such as facial-hair growth can become more challenging to treat. Brandy Cramer, 33, a program officer at The Cameron Foundation, from Midlothian, Virginia says her doctors told her she just wasn’t trying hard enough to lose weight and dismissed her when she requested they run blood tests or suggest alternatives to the birth-control pills that gave her intense migraines. Cramer grew facial hair and has only been able to remove 50 percent of it, even after expensive laser hair-removal treatment.

“I had no support or resources to learn how to manage my PCOS. It wasn’t until I was able to connect with other women who had it that I started to feel less isolated and learned how to advocate for myself,” said Cramer.

Gretchen Kubacky, a health psychologist who also has PCOS, says the condition has a significant impact on the mental health of her clients on both a situational and chemical level.

“Often times the cosmetic issues are huge, depending on the severity. When you summarize the typical PCOS patient as someone who is fat, has acne, and male-pattern baldness, that is definitely depressing, but that in and of itself is not enough to cause depression,” she said. “It’s the hormonal imbalances that have a real neurobiological affect on the brain and we have evidence that the excess of androgens in women is definitely linked to depression.”

Sara Eaton, a 30-year-old ballroom dance teacher based in Augusta, Georgia, says PCOS has had a significant impact on her health, body image, and self-confidence since she was diagnosed at age 15.

“It’s a frustrating, difficult, and sometimes heartbreaking thing to deal with,” Eaton said. Eaton’s PCOS has given her male-pattern baldness, acne, obesity, and skin tags. In spite of her challenging symptoms, she dances and works out several times a week. “There aren't many women who look like me who can get on the floor and move like I do, who are comfortable enough in their skin to step into the spotlight and demand that people look at them,” she said.

Until PCOS is better-understood, Eaton says women need to look out for themselves and their fellow “cysters.”

“Don't just trust what the first doctor you see says without doing some research,” she says. “Find another woman with PCOS, go online to some of these support groups. Find a reproductive endocrinologist who knows what they're doing. Talk to other cysters, read the articles, look for doctor recommendations. We have a syndrome that is so complicated and confusing, one of the best ways we can help ourselves is to be proactive and make sure we find the best and most knowledgeable caregivers available to us.”

Genuinely i am actually losing it and I apologize to my buddies if I've seemed super absent and withdrawn lately

My health is really really not great and I'm having to come to terms with a lot of stuff that I really shouldn't have to at 26, and there's currently a lot of fear of the unknown. I'm in near constant pain, I can't walk like I used to, and I've begun getting winded and having fainting spells after only a few minutes on my feet. There's a lot going wrong, and my surgery I had in April severely exacerbated a lot of problems.

I don't even know where to start and I have had consistent trouble finding doctors who will listen, and this is where I've ended up now. Chronic pain and fatigue, malaise, weakness, joint pain, muscle spasms, difficulty walking and holding myself upright, light-headedness, nearly dying from malnutrition and having to discover I have pernicious anemia (still no diagnosis I have to get a doctor, but I found out my grandmother has it too) and have had it for my entire life on my own while doctors told me I wasn't at an unhealthy weight when I telling them I'd lost the ability to eat for a year. It didn't get better until I started taking b12 because I was developing jaundice and it was a last ditch effort before I went to the emergency room for help.

I've had to do research on my own to connect dots to my own conditions to try to find reasonable options for my state at the moment, reading medical papers as they are published...and there are so many things that are connected that make complete sense. I think the majority of my problems are pernicious anemia and potentially secondary adrenal failure due to my pseudotumor cerebri (which guess what guys.....it's been correlated to pernicious anemia. Particularly in infants. And guess who was born with the condition and has a grandmother diagnosed with pernicious anemia and a mother who has struggled with b12 in the past :) ) having put pressure on my pituitary gland for so long.

Along with sciatica, which could be due to the pressure in my spinal column, b12 deficiency causes nerve damage and though I've been taking it daily for the last 3 months, it can take 2 whole years before your deficiency is in good standing (and it can be silent for 20 years before you show symptoms. And 20 years old is when i started getting sicker and sicker.) I don't know how much of this will be permanent. And I'm so tired all the time, and the financial aspect stresses me out so much. And literally everything I keep getting diagnosed with is easily exacerbated by stress.

And disability is impossible for me to get on. We have insurance but the premiums are ridiculous and I'm just too fucking sick for it to be helpful.

I feel like ass and Im honestly just. Ashamed of where I'm at and what I'm going through, even though I know I shouldn't be. I feel weak and I feel like this is all my fault for being so consumed with anxiety until my adhd was treated. But genuinely, so much of this was undetected bc the symptoms can mimic adhd and other mental illness.

But I do know my slurring speech will probably never get better. It's been an issue for a long time now, and though Adderall improves my stutter a lot, it isn't cured and my slurring has shown no improvement.

I'm just exhausted. I'm tired of fighting for people in care professions to listen to what I'm saying. I'm tired of doctors seeing abnormalities on my chart and saying "it's probably fine. You're young" and then looking at my own charts from the last 13 years and seeing the same problems show up in my blood work time after time.

And having the cleft lift surgery only to find out months later from doing research that it's possible that I will have pain in that area for the rest of my life now, especially if I already have chronic pain and no one warning me. I needed the surgery. But I wish I'd known.

I'm just exhausted. Genuinely. And it's nothing personal to anyone. I don't even have the energy for myself at the moment. I just want to sleep all the time. Even when I'm awake, I spend the entire day trying to keep myself from thinking on all of this. And then I have people in my family who keep thinking they know my body and my pain better than me, telling me that my pain isn't that bad and that I'm okay.

But when I explained to my father I was showing signs of P.A. and S.A.I. he panicked. And said it made sense. After downplaying everything time and time again. And while im glad for the support, why didn't you show that same concern when I first told you I had started using the cane to help me stay balanced get around and that I needed a shower chair now because I kept collapsing in the shower due to exhaustion? Why was your first instinct to tell me I was overreacting? Being melodramatic? A hypochondriac?

Why do I have to actively show signs of serious, life-threatening illness before I'm shown compassion and care? Why can't you just believe me when I say I'm in pain? Why can't you understand that my agoraphobia is due to not wanting to answer questions about why I don't come out anymore and why I can't do certain things? To hating the way that people stare when I go to the grocery store and I'm out of breath after 5 minutes and having to take a break just to breathe?

I told Sam earlier I feel like everything is a performance and I'm being judged on it constantly. And there is no way to ever please the audience. And I'm done. I don't care anymore.