I named my recent lesion Gruber. Alan Rickman had passed away the day after I got my most recent MRI results. A week after Bowie had launched off. I had not had an MRI in about three years precisely because I knew that the MS was going to do what the MS wanted to do regardless of what I injected or infused or swallowed or had ablated or had reintroduced. The mechanism of Multiple Sclerosis was going to persist in non-consensual betrayal of my immune system and render it asunder. The pace at which this would continue to happen was nothing more than a toss of the dice, a shot in the dark, white noise personified. My axons being stripped of their protective myelin sheath, having it ripped and frayed, stained, random axons brutalized and beaten, and by the very B cells born and bred to serve and protect… why I felt wrongly brutalized, strangely beaten, disobeyed even and I could not produce my worry balls, Queeg. Queeg, what happened to the worry balls… and the damn strawberries; where are the berries?
Sitting in the examination room, waiting for the neurologist, I find myself thinking about the dabblers we are: doctors, patients, pharma. Poking with our fingers and painting our respective brains out on digital film or sidewalks or into side dishes, transitioning from doctor and patient to a couple of strangers who may or may not pass each other at the store, sit in the same theater, exercise at the same gym, or walk the same beach. I begin fantasizing about pupusas filled with kale, black bean, and roasted pumpkin seeds buried under curtido. And then Dr. Neuro enters. Almost immediately the rituals begin: stand on one leg, hop up and down, walk on your heels, squeeze my fists, walk heel to toe. This is a small room with your standard table and chairs, counters and computer and wires and shiny things. Not much lateral space. Not much space for allotting for errors.
You have an enhancing lesion. You know what that means? she says. It means the MS is doing exactly what it is supposed to be doing, I say. That is the only lesion I have had in the three years since my last MRI, I say. We need to discuss disease modifying therapy options—you need to be on one, she says. Rituxan, she offers. It has shown some efficacy in slowing progression in PPMS subjects under the age of fifty. Isn’t the patent on Rituxan expiring soon? I say. We will transition you to Ocrelizumab at that point, she says. That’s not even approved yet, I say. It will be, she says. But isn’t a possible cancer one of the potential side effects?
MS is an invisible disability. Yes, the damage wrought is manifestly visible; sometimes sooner rather than later. And make no mistake, MS will explode all over your sheets: you will find MS residue in bed with you and on the adjacent walls every moment of every day. You will find it at work, while you shop or do daily chores. You will have bruises and fractures. Or it will find you while on vacation or when you are giving a lecture. Or while you are working a geophysical project—looking for the depth to bedrock or a lost oil well. There is so much walking in geophysics. I have had more than a few clients— since my diagnosis in 2012—ask me if I was OK as they noticed I had begun to walk funny, almost as if drunk or in pain, over the course of the day. Oh, I have some problems I would say. Don’t we all? they would shoot back. This happened before I retired from field work permanently. (Although, truth be told, I was in the field back in February of 2020 due to a scheduling mistake. And I was fine. Tired but fine.)
With MS, as with all chronic illness, there is no such thing as best laid plans. There are, instead, carpet lips and elevation changes, standard barrier curbs on far too many street corners, still cracked infrastructure making it more difficult to cross common thresholds for a slice of pie or a mug full of black coffee. When I told Dianne and my family, and eventually my employer and co-workers, I did hear more than once from my core support group, “Oh, I know someone with MS.” But unless you have MS, you don’t know what it is to have MS. You don’t know how measured one’s life becomes within this ridiculously capricious gravity; do I have the energy to mow the grass today, can I make it a mile or two on a hike with Dianne, will I lash out, again, at the next non-placard having car parking in the handicapped spot and get my ass kicked this time? I have no doubt this is a familiar chorus. We reinvent. Reinvest. Re-become.
Everybody means well of course. You’re a fighter, they say. That’s real nice…
Lidwina of Schiedam is often considered the first documented case of MS and dates back to the fourteenth century. Lidwina was canonized in 1890 and is, oddly, the patron saint of ice skaters as well as of the chronically ill. It has been documented that parts of her body simply fell off. Yet she survived to the age of fifty-three despite this. There are historic reports of pilgrims seeking her counsel and the local priest and/or soldiers abusing her sexually. Her feast day, at least within the Roman Catholic Church, is 04/14. Date of my diagnosis? 04/04.
End of conspiracy and/or coincidence section.
* * *
Disability as entertainment. For entertainment purposes only. For compelling narratives. We give to telethons and walkathons and passionate speechification to keep all disease away… like throwing virgins or dogs—sometimes entire cities—into or under volcanoes to appease the gods. Mutant X-Men. Hilary and Jackie is an MS sister story. Martin Sheen in The West Wing is a president with MS. Geordi La Forge, from Star Trek: The Next Generation, is blind since birth but tech now allows him to see. Etc., etc. We want to see it from great distance. And preferably fictionalized. I cannot help but think of Sontag’s Illness as Metaphor here and the line, “as a becoming frailty,” whereby disability is spiritually attractive like a maladroit talisman.
Nothing about us without us. Is it really so much to ask?
Pick-up basketball. Tequila. Theme parks. Crowds. Mountain biking. Night carnivals. Dirty sex. Cognitive processes. Dairy products. Function. Tidepooling. I can do all of these things. Some I choose not to entertain: no more drinking. No more dairy. No full court basketball or mountain biking. A dose of sexual spontaneity is gone as I can be exhausted, foggy, or mired in sciatic pain any time of day… hour to hour, moment to moment. Sciatic pain? While the debate continues as to whether MS is an autoimmune or neurodegenerative disease, some of its symptomatic truths remain steadfast. The Cliff Notes version is that my wiring is being compromised. Imagine the nerves sending the walking impulse requiring ten times the energy to send that simple signal and imagine a portion of that signal being reinterpreted so that your right foot swings wide by .00001 degrees and your bodily alignment is skewed by a few millimeters. Imagine just this one scenario compounding over the course of a few years. Chew on the fact that this is just one tiny iota of the bounty MS brings to the table. Digest, if you will, this sliver of an example of just one disease, and imagine the host of breakdowns and triggers riding shotgun within the vast spectrum of disability, and then imagine your body as it commences with your breakdowns and slips-trips-falls and the where did I put the dog…
Tidepooling, right… So, we had four families down in Baja, Mexico in late July / early August of 2016. Rented a large hacienda for the week— magnificent all the way around. But getting down and back up the slopes and breakers to the tidepools proved a minor challenge. My balance flat out sucks sometimes. My leg strength is fine. I just needed a guiding hand from my younger but bigger brother, and I could prance around the rocks almost as well as his children. But if it weren’t for him serving as my walking aid… keeping as keen an eye out for my safety as that of his darting children, looking for sure, solid footing before I even begin my move to the next rock, doing his Robert Shaw Jaws monologue, again, so that I force myself to stay focused by not laughing.
I revile the language of battle and disease—as if it is a contest. These matters are instead of complications and if there is no cure then, by the strictest, narrowest definition, there can be no battle. There is either correction or there is not. There is either restoration or there is not. Truthfully, there seems to be much, much more of “there is not” than “there is.” With one exception: there is a lot of money in MS. Research. Drugs. Trials. Fundraising. More money: they—those docs and pharma reps—blame the system, the incentives, or the profit-driven pressure. They get excited by a 34% reduction in lesion load or relapse rate for their control group, electively forgetting that MS is a Pandora’s Box for those lucky enough to be found underneath it. Sometimes I laugh at those people.
Though, I would much rather not entertain the coming and inevitable struggles, in whatever crippling form or magnitude of discomfort, while the option still exists for me.
I’ve been thinking lately that there should be a Virtual Reality device that allows for doctors to fully immerse in the disability experience. Their degrees and subsequent jobs, even private practice, should depend upon their capacity for empathy. There is nothing textbook about being disabled.
Perhaps the general public as well… Philistines…
We, as a manner of beings, discard our humanity, our skin-to-skin similar systems; we cast out aspersion hoping for hits on the line. Why this is even a habit or pastime, I just do not know. There are so many of us with so little. And I am referring here to more than just the largest minority group—the disabled—in the world. First, we were too ugly to be seen and loosely restricted to the shadows and the back rooms. And though we are far more visible today than we’ve ever been, we are still teased, overlooked, taken for granted, dismissed, walked around, talked around, ignored—threadbare and shop-worn and very readily used as fodder for trials and labs and drug promotion.
I have a disease—a disability—slowly, but irrevocably, in the making of making itself up. And I too have begun to fashion an identity around and extending outward far from my MS. With other disabled writers and artists. With non-disabled allies. Another community growing, galvanizing. Ready to be seen not for what we are and the entrenched fears we represent, but for how similar you all are to us. We feel angst and bleed when shot. We bruise beautifully when we fall and love deeply. We like dogs. And cats. Mostly dogs.
Oh, yeah—fuck. Dianne is an RN. She is crazy COVID-busy and I am more concerned for her, but my chances are higher, yes, I am aware. Months ago, there were Airbnbs and RV offers, and even hotels, for the Person Under Investigation (PUI) nurse population. A coffee at McDonalds. Duct tape, oh, yeah… that…
I must re-become by the minute. So many decisions to make. And is that such a bad thing? True to disease form; mutating, the screaming so-personal-interior in a country that cannot even get the surficial parts of all of us in accord, we, the crip community, ask that you rethink more than just your relationship to bodies of color; we all prettiest star, we all alien changeling…