We Are Not Disposable: Alejandra Spector
Written by Alejandra Spector LMSW, Licensed Therapist
For this month’s Equity Report, Colors of Austin Counseling’s Alejandra Spector speaks to her experience with chronic illness and disability justice. She is launching a Chronic Illness Process Group this fall which is currently recruiting new members. More information about the group and the registration form can be found here.
For most of 2019 I spiked a fever every afternoon. I was sent to all sorts of specialists who never could figure out exactly why. Something to do with my immune system. Three o’ clock would come around and the heat would leave me red faced and exhausted. Eventually they went away only to be replaced by a number of other bizarre symptoms.The year before that was spent in and out of hospitals and medical settings. The year before that as well. If I’m an expert in anything it’s being sick, but this isn’t a deep dive into my medical history. This is more of a reflection on stillness, acceptance, and decay.
If you haven’t spent much time being sick it might surprise you to hear that the worst part isn’t the physical pain or the co-pays. The worst part is the feeling of being left behind. Something about being sick seems to aggravate other people. It’s certainly inconvenient, and in a way it is incredibly transgressive. Why should you get to opt out of the grind when you are supposed to produce? “Healthy” people seem to get especially angry if you aren’t living in poverty or manage to have a full life. Like that’s proof that you must have the ability to take part in the performance that is capitalism. Of course, they have no idea until a cold or flu takes them out for a week. It’s hard to imagine what it would be like to always have to live like that. They got better. Can’t you just do more yoga?
I had a moment of hopefulness early on in the pandemic that people would finally understand what living with illness entails. The pace of life slowed down and working from home became an option. It’s what allowed me to finally be able to have work stability. But people soon began to complain about mask mandates and vaccines and the messaging from the government was something along the lines of, “The good news is that COVID is mostly killing those who are deemed high risk”. The immunocompromised have been told to further remove themselves from the world. If you can’t keep up then it doesn’t matter if you live or die.
I do know how to self-isolate. I’ve spent long stretches of time not being able to work or go to school and because of that I’ve spent more time than most alone with my thoughts. It can make you a little strange. I’ve started to anthropomorphize sinus infections. It also gives you the space to develop yourself without the expectation that it will turn into a profession or side-hustle. I’ve taken deep dives into botany, the history of science, bacteria and fungi, and all sorts of esoteric subjects that either make me a hit or huge bore at dinner parties. I’ve experimented with different art mediums, written short stories and poems and taught myself to sing pretty well. I’ve been able to sit still and get really bored. We’ve demonized boredom, but it sure makes everything seem much more interesting.
I think my desire to become a therapist stemmed from a place of deep interest and curiosity, and all the work I did as a client and patient. As I’ve grown more comfortable in my role as a therapist my thoughts on healing have shifted. Grad school could have never prepared me or anyone for the reality of being a therapist in our current political, social, and ecological climate. It’s been really tough and nothing has taught me to be able to sit with pain and uncertainty more than illness. There came a point where I had to stop fighting it. I eventually realized that pouring all of my energy into being “healthy” was actually worse for my quality of life. I’ll never be healthy. That’s not the goal anymore.
Our world is very sick right now. Ecologically speaking we have pretty much guaranteed that we will soon be at a point of no return. We got here because our leadership decided that if we could not make a dollar out of something it was disposable. We forgot that everything has intrinsic value and that the point of life is living. Coming to terms with illness is coming to terms with death. Maybe that’s why we hide our sick. That’s certainly why we’ve decided to pretend that after the last several years we can go back to “normal”. But pretending we’re not dying and pretending that our bodies won’t ultimately fail disconnects us from ourselves, each other and the natural world. We aren’t going to beat death and we’re not going to avoid suffering. Death is the great equalizer.
For a long time I was sold on the idea that to be sick was to be useless and miserable. That if you live with a lot of pain and it takes a great deal of effort to do just about anything then you might as well give up. Everyone with a chronic illness has heard, “I could never live like you do”. It’s simply not true. Yes, it’s hard and painful and it may always be hard and painful, but to give up would mean losing everything and fortunately there is a lot on the line. I can’t think of a better analogy for this moment in time and space. The world feels pretty broken right now and in spite of our best efforts it may only get marginally better, but we’ve got so much to lose. That’s the good news.
And at some point the fever breaks.
