[Image of white and orange pills, green and white capsules, and a syringe.]
Are you better yet? Get well soon. Race for a cure. Pray for a cure.
There is a persistent belief amongst able people that a cure is what disabled people should want. To abandon our disabled selves and bodies and assimilate into a perhaps unachievable abled skin.
Pushback to this idea often comes in the form of the social model of disability, which states that we are disabled by society and lack of access rather than our bodies. For many, the social model can be liberating : by locating the cause of our problems outside our bodies, we can begin to love ourselves again. Tackling systemic ableism may feel like tilting at windmills, but it is still easier to address than some kind of failing within ourselves.
There is a criticism of the social model of disability, located in the idea that some disabled people may want a cure. Particularly with things like chronic pain/chronic illness, a cure is seen as something that can itself be liberating: a way to simply be in one’s body without feeling pain, for example.
There is a danger in the cure mentality, as it can be a slippery slope towards eugenics when it is applied by abled people. Many in the Deaf and Autistic communities do not want a cure, and feel that those who advocate a cure are advocating that they not exist anymore.
Sometimes it comes down to how we see our individual disabilities: are they an intrinsic part of who we are? Or are they an identity that comes with a side of agony which we would gladly give up? How do we feel when abled people start advocating for “cures” – which may come in the form of eliminating our people entirely – rather than when the desire for a cure comes from disabled advocates?
This essay is both about this community tension over cures, but also about the internal tension that comes from chasing cures. To be clear: I have chronic pain, and I would gladly wish it gone, cured, away. Yet I also cannot spend all my time pursuing cures, because I would never have a life.
I have had a fibromyalgia diagnosis for five years, but I am deep in my religious phase. Specifically, I am neo-pagan and am somewhat less skeptical of crystal cures and reiki. I am tired of doctors who do not listen and blame my fatness for my disability. I want to feel a modicum of control over my life again, and this is what neopaganism offers: the belief that I can somehow control my own pain, if only. If only I have “positive energy.” If only I use the right combination of crystals. If only I avoid gluten.
I am desperate for a cure, to regain the life I used to have when I hiked and camped and could take a full courseload of classes and reading was easy. Back when I didn’t have to remember to take medications, or worse yet, refill the pill boxes.
My friends at this time are what I would now call deeply ableist. One of them saw my shower chair and laughed and called me an old lady. The leader of our little group is a chiropractor who told me that his patients do better when they don’t think of themselves as having fibromyalgia, but instead think that they have pain to overcome. I am at first repulsed by this, but soon I internalize that I should not say I have fibromyalgia. It is as though saying the word is some kind of summoning charm, a curse that will birth my problems into reality.
If only I don’t say I have fibromyalgia, perhaps I won’t have it.
My therapist doesn’t help. He is supposed to be experienced with working with chronically ill people, but he doesn’t seem to understand things like “not having the same amount of energy every day.” Once I confess to him that I want to volunteer but simply don’t have the energy; that the schedules for volunteering rely on the idea that I can come in at the same time every week; that there aren’t enough opportunities to work remotely. I say that I feel deeply guilty for not volunteering, because helping others has always been a core part of my identity.
Instead of sympathizing or offering concrete problem solving advice – things that would have been helpful – he said in a disparaging tone, “Well, when was the last time you helped someone else?” I felt such a deep sense of shame that there were so many barriers to something as simple as volunteering. More than that, I felt that I should simply be able to overcome them if I tried hard enough.
If only I tried hard enough, disability would not be a problem.
Back to the pagans. I am at a Healing Drum Circle. We take turns laying in the middle of the circle while people drum around us. We are white and off beat but trying our hardest. The rhythm and vibrations from the drumming is supposed to offer healing energy. We are told to state our intention upon entering the circle.
I have resolved that what would heal me the most is to make peace with my disability, to stop warring with my body. I want acceptance.
I am drumming next to the chiropractor. He turns to me. “Are you going to wish for a cure?”
All at once I feel that I should. If only I wish for a cure, maybe I will have one? Certainly I won’t have one without wishing. What is the harm?
I spend many more years hating myself for not being able to overcome my disability. I regret my choice, but don’t know how to find acceptance for my disabled body.
I am in remission. This is a thing that doesn’t happen. I am on antibiotics for Lyme disease, and my symptoms are in complete remission. I go to my primary care doctor. She pushes on the fibromyalgia tender points, the ones that are diagnostic. None of them hurt. We both marvel at this. Am I cured? Was it really Lyme all along?
I go hiking. I take a video of the hike so I can remember what it feels like to be out here, walking, without pain. It is some kind of miracle, I think. I am afraid to hope.
The prescription for antibiotics expires. The symptoms come back. If it were Lyme, wouldn’t it be cured? There is a controversy here, a big one. Some people believe that one can have chronic Lyme disease and need a longer course of treatment for antibiotics; other people think that is bunk.
I am not here for a referendum on whether chronic Lyme disease exists; I believe that it does for some people and I support them in their quest for relief from their symptoms.
It is enough that I believe I must have chronic Lyme, based on my own experiences. I read the studies that indicate that the relief from doxycyclene are due to its anti-inflammatory properties. I take non-steroidal anti-inflammatories, but I am no longer in remission. The pain is back and somehow it is worse than it was before because I know what remission feels like. I had started to forget what it felt like to be without pain.
I take more antibiotics, against the advice of my general practitioner. I have found a specialist in chronic Lyme and he prescribes them, along with a number of expensive supplements and a special diet. My symptoms get worse and I feel I am forever chasing the feeling I had on that hike in the woods. Shouldn’t I be getting better?
I am in the hospital for bipolar depression, another of my chronic illnesses. I am off the chronic Lyme treatment. I have a Z-pack of antibiotics for a cold, and the hospital has no probiotics. I get an infection of C difficile, an overgrowth of deadly gut bacteria more common in those who have used long-term antibiotics. I take medication for it that makes my mouth taste like iron, and I am nauseous for weeks. I get better, then that winter I get C difficile again. None of the medications work. I could have died, if not for an experimental fecal transplant.
I abandon pursuit of chronic Lyme treatment because I fear it will kill me.
I still want to feel like I did on that hike in the woods, but I begin to wonder if that is impossible. I am afraid to hope. I am battered by hoping. I am depressed.
I have come a long way since I chased every cure. I am connected to the disability community, versed in disability theory. Yet I wake on my birthday to a skull-splitting headache, and it does not go away. For months, I have this headache.
I consult numerous doctors. First the emergency room, then my GP, then local specialists. Eventually I travel to other states to consult more specialists. No one knows what is causing my headache.
I begin to fear that I will never get over it. I have a friend who’s had a headache since she was thirteen. Maybe this is my normal now.
I remember the moment I realized the pain had become chronic. That I couldn’t concentrate because so much of my mental energy was relegated to ignoring the pain. I couldn’t read, I couldn’t cook, I could barely dress myself. Everything was agony. Was this my new baseline? I sobbed, and it hurt, but I couldn’t stop the tears.
I have so many tests. Numerous MRIs from different angles and of different body parts. An EEG, to test for seizures. An EMG, where the doctor sticks needles in my arms and legs, to test for nerve damage. Anything, to find out what is causing my mystery headache.
I now know I have a connective tissue disorder, and I research mystery headaches in connective tissue disorders. There are only a few doctors who treat this on the East coast. Some of them do not take any insurance.
Before I can see them, the headache goes. I had finally gotten a prescription for physical therapy, and the therapist manages to manipulate my neck and head so that the headache disappears.
I weep with relief. There is something I can do, if this comes back. This is not my new normal. In a way, I have had a cure for something, even if it’s not my widespread body pain.
But at what cost? I mean, don’t get me wrong: I would have given almost anything to be rid of that pain. Yet I have spent my year alternately living on a heating pad or getting tests. I have accomplished survival.
I still have so many things “wrong” with my body, and I am tired of being poked and prodded.
Perhaps none of this makes sense. Or perhaps it only makes sense if you live through it: the hope, the barrage of tests, the blaming yourself when your body still refuses to cooperate and just get better.
There is a cost to pursuing miracle cures. It is a high cost.
People ask me, “have you tried yoga? Kombucha? This special water?” And I don’t have the energy to explain that yes, I’ve tried, I’ve tried crystals and healing drum circles and prayer and everything.
What I want to try is acceptance. I want to see what happens if I can simply accept myself for who I am: battered, broken, hoping for relief, still enduring somehow.
I will still take a cure if it’s presented to me, but I am so tired of trying to bargain with the universe for some kind of cure. The price is simply too high to live chasing cures, because in doing so I’m missing living my life.
I only know that in chasing to achieve the person I once was, I will miss the person I have become.