#over the last few years I've started developing some pretty bad chronic pain but I've also had an anxiety disorder since forever
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Honey, there's isolation and then there's isolation.
I've seen many chronically ill, neurodivergent, poor and disabled people discussing their bemusement at the cries of lament from the well-off able-bodied people who now have to self-isolate, cancel their plans, postpone holidays and miss out on fun events. It's quite something to behold. It’s fascinating (in a horrible way) to witness these people who are used to getting what they want now finding that they can't have it; that that instant gratification has been removed for them. Now they're staring down the prospect of being lonely for a few months, unable to see friends, sometimes even family, unable to go out to the movies or the festivals. And we're sitting here like, yo - welcome to our world.
It's hard to put into words how frustrating it is to see governments putting in measures for tele-health services, working from home practices and teaching through Skype to students et cetera. For decades, disabled/sick/neurodivergent folks were told that these accommodations couldn’t be made for us, but now suddenly they can. Now suddenly there's money for it. Funny that.
When we've talked about how lonely and isolated we feel as people with disabilities, we've been dismissed, victim-blamed or infantilized. But now the ableds are feeling it, a flood of “community compassion” initiatives and “mental health advice for dealing with isolation” is being made freely available to them.
And yet previously, we used to hear things like: “You're so lucky you get to stay at home: I wish I could just be on Netflix all day!” Or, “You don't have to deal with people. That sounds like utopia to me!”
Not so much fun in reality, is it?
The latest banger I heard was from my sibling. I told her that after a long winter, months of bushfires, unprecedented floods and now this virus, I had essentially been self-isolating for six months and another six months was going to make me lose my mind. Her response was, “well, at least you've had practice. This is all so new for the rest of us!”
Yes, I have had practice. I have developed strategies for dealing with crippling loneliness. I have had to find ways to entertain myself whilst experiencing horrific symptoms of pain, nausea, digestive issues and more. I've had to learn not to take it too personally when friends cancel on seeing me or sensing their disappointment/bemusement when I cancel on seeing them. Yes, I have had lots of practice. It doesn't make it any less awful though.
Australia has had a particularly bad run. The bushfires broke out in spring and for almost all of November and December we literally could not go outside because the air was toxic. The smoke blocked out the sun, rained apocalyptic ash and embers on us which sparked more fires. I have a compromised immune system and so I really felt the effects of the smoke. Red eyes, runny nose, sore throat - the works. That crushing, extended period of terror took a huge toll on me mentally, as well. Then, just as the smoke started to clear a little, the heat waves came. I'm talking about 48°C (113°F) days. You cannot go out in that. More people die from heat waves than most other natural disasters combined, and people were dying in Australia. People died from the smoke and the heat and that doesn't even include deaths from the fires themselves. Then the fires were put out not just by some heavy rain but by actual torrential flooding. So for a few weeks in February we were cooped up indoors unable to go out because the train lines had literally washed away and it was too dangerous to drive.
And then the coronavirus hit Australia.
Now everyone is being told to lock themselves in their homes. For many of us, particularly the chronically ill and most vulnerable, we've already had months and months of that. And bear in mind: I had to pretty much self-isolate all winter. Because such cretins like anti-vaxxers exist, it's really difficult for those with compromised immune systems to go out in winter and not get sick with the flu, which can be crippling or even deadly for us. Secondly, winter is extremely hard on my body. My pain gets infinitely worse in the cold weather. Last year I spent most of winter inside. I barely saw the sun. The only way I can get through those 3 to 5 months of cold is keeping in mind the prospect of spring and summer, when I can go out more often. But I couldn't go out in the spring and summer of 2019. My long stretch of being stuck indoors went on and on and on, and now I'm being told it could be another six months before I can go out again - just in time for the start of the next bushfire season.
After all the hardships we endured last year and after finally giving up running my not-for-profit due to worsening health, we really needed something to look forward to in 2020. I had no less than 14 medical appointments in the first eight weeks of this year. We spent thousands of dollars on seeing specialists and therapists to try to fix my broken body. The only time I would be out of the house was to see another medical professional. And then I broke up with my friend of 14 years (and his family), which led to me feeling more alone and more depressed. And then my elderly friend died at the end of February. Everything looked bleak.
Strapped for cash, my partner tried to think of affordable ways we could still have fun this year. We finally had our own home, so maybe we could invite people over. Our social lives really suffered while running the non-profit, especially with all the drama of last year, so this year we pledged would be different.
We spent half a day in February in front of our wall planner and planned boardgame nights, our birthday parties, dinners with friends and excursions at local festivals and markets. I felt my spirits pick up a little and hope stir in my heart.
All that has been cancelled now.
For someone who is chronically ill and alone most of the time, we live for these outings. We live for the moments of socialization and human bonding that we are otherwise deprived of so much of the time. These things are the light at the end of the tunnel of pain and nausea and sickness. So to have that taken away from us? There are no words to describe how eviscerating that emotional pain is.
To add insult to injury, we’re currently watching able-bodied people behaving even more despicably than usual. They descend like locusts on stores and rob the vulnerable, including our poorest regional communities (STILL RECOVERING FROM BUSHFIRES), of their food and resources. We’re witnessing them stepping over the disabled, sick and impoverished to panic buy all basic necessities. We hear them complaining about how hard it's going to be to give up seeing the football and to stay home with the kids these next few months. It's fucking galling. Now they are starting to taste what we have to experience, and yet there is still no consideration for what we’re going through.
Instead, we hear shit like: "The self-isolation thing is so annoying. I mean, it's only the sick and elderly who will die from it so I don't see why I can't go out to a concert!"
Only the sick and the elderly: this implies our lives have no inherent value. But I guess, under a capitalist system, that's how people see things.
I am just so goddamn tired. I’m tired of trying to be positive all the time when things are just terrible right now. I’m tired of being dismissed, ignored, or made to feel like a whiny burden. I’m tired of the hypocrisy. I am tired of the fear and selfishness and ugliness all around me. I’m tired of being sick and I’m tired of being punished for it.
This coronavirus has highlighted so many deep flaws with our culture and our economic system. It’s shown up humans for the self-centered, individualistic bigots we are. It’s illuminated how pathetic our treatment is of the world’s most vulnerable. It’s really underscored how incompetent our leaders are. Not that this will motivate anyone to change anything. Keep selfish, carry on.
And so it goes. Tomorrow and tomorrow and tomorrow…
#spoonie rants#chronic illness#chronic pain#the ableds are at it again#abledsareweird#fuck ableism#coronavirus#covid19#Fibromyalgia#seriously Australia#get a grip#disability and isolation
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