a disability post

a few words about illness

This morning I’m dizzy and lightheaded, the regular cycle of chronic illness and something else on top: I’m weaning off of the morphine prescribed to me twice daily for the past year. I can’t help but think of all my friends who have gone off of opiates in a harder way, cold turkey and pushing through the vomiting and chills, the feverish symptoms, the feeling like the worst flu you’ve had, the spins and the lying still just hoping it will stop. I’m lucky, for nearly ten years now, I’ve had health insurance. It may run out next month, depending on whether the insurance company decides I’m still disabled.

I’m weaning off of opiates not because my pain is cured, but because I may lose my insurance. But I’m lucky. With professional medical care, I only have a mild version of the symptoms my friends and beloveds have been through trying to save their own lives, sometimes going through it again and again, fighting the pull of the one thing that will cure all of those symptoms immediately. I know only a portion of what that feels like, and I get enraged by it. If I can have the appropriate care to be slowly weaned off of this drug, why can’t they? Why do we talk about the drug epidemic but refuse to treat it? There are multiple ways to help people kick, and yet my friends continue to do it alone, sometimes while parenting, while trying to keep a job, while trying to maintain a life. It’s complicated, but it’s also simple: everyone deserves care.

I think about my own luck all the time. I may be disabled by chronic illness, but I have a vast care network. I have a partner I love, who keeps us afloat in so many ways big and small. I have a pink room of my own and a collection of seedlings maturing on the windowsill. I have books and more books. I have door to door public transportation for the disabled. I have the library by mail. It is a different kind of life, disability, but it has become a rich one, once I learned to live it.

The hardest part is knowing the ways I can no longer contribute. I cannot organize the way I did for ten years before getting sick. I can no longer teach, a job I once loved.

On the other hand, I’ve learned so much. How to be slow and pay attention to each moment. How to persevere through pain and difficult emotions. How to take every pleasure as it comes, to allow the small joys of each day to penetrate me, to make me whole. To see that a smile from my partner, a game of cards, a dinner with friends is the stuff that life is made of. How to live a life of the mind, after years of doing all the things a body can do. I treasure these days now.

For the first years of my illness, I fell into depression. I discovered in 2020 that I had a congenital genetic condition called Ehlers Danlos Syndrome - it was only a matter of time before it made my body fragile. It had been happening for years in ways I shrugged off. Ways I made excuses for. The constancy of self-suppression, that is one of the hallmarks of disability. Then there is the constant catching up, the ways we push our needs aside again and again. The ways we cannot show up but show up anyway, making ourselves sicker in the process of pretending to be “normal,” which is to say - pretending not to sink in a race through water in which you actually can’t swim.

Eventually, I had to recognize what was happening, and I received the diagnosis just as everyone was living the kind of life I’d continue to live long after everyone else had gone back to interacting offline and unmasked. There were blessings in this timing - I had access to working from home when I truly needed it. My needs were strangely and suddenly normalized. But still the weight of the diagnosis (and the dozens of smaller diagnoses that go along with EDS - POTS, fibromyalgia, ME/CFS, an undifferentiated autoimmune condition, a bladder issue, the need for a five-inch stent to be placed in my left iliac vein, and more and more) all of it flattened me. Hit me with its permanence. Changed the very future I had imagined for myself.

I had to change with it. Had to recreate who I thought I was. The work of that recreation has been the most painful part of this process by far. Much harder than dealing with the constant surgeries and procedures. Four laparoscopies in as many years. The invasiveness of radio-frequency ablation and an appendectomy and pelvic floor botox and endometrial excisions. The constant weakness, two years of vertigo, the weeks when I was so sensitive to light and sound that I lay under a blanket in the dark wondering about the nature of suffering, wishing to give suffering some kind of meaning but knowing deeply and undeniably that suffering is too often meaningless.

I’ll say it again: I’m lucky. Mine is not a terminal condition. It may not even shorten my life - or it may, I don’t know. But the thing I’ve learned is that if we are honest, none of us knows the future. None of us knows how many days or hours we have of being active, of having whatever range of choices we have. None of us knows when those choices will narrow, perhaps further than they already have. None of us knows what we will be capable of tomorrow. All I know is that it is likely that what I’m capable of tomorrow will be less than what I was capable of in the past. But it might also be more than I’m capable of today. Today, I’m sick and spinning, but I’m writing. That in itself feels like a kind of luck.