I named my newest lesion Gruber. Alan Rickman had passed away the day after I got my most recent MRI results. A week after Bowie had launched off. Cancer finished them both. I had not had an MRI in about 3 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 this non-consensual coupling with my betrayed immune system and rend asunder. Both the pace and severity at which this would continue to happen was nothing more than dumb luck. 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.
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 cortido. And then the neurologist 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.
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 3 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 50. 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.
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 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 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 said. Don’t we all they would shoot back.With MS, 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 my wife and 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 brain space, juggling both the kind and the grave at one moment, forgetting for a long fraction that others are waiting to make that same left turn at Sunflower Avenue and Bristol Street. I have no doubt this is a familiar yet frustrating chorus. Reinvent. Reinvest. Re-become.
Everybody means well of course. You’re a fighter they say. That’s real nice…but did they mean perhaps to say ‘we’ are fighters because ‘we’ are women and men and children of the same species? Or am ‘I’ just reading too much into the well-meaning commentary and ascribing an associative relationship to what is, essentially, a locally developed code vocabulary? And while I realize that, as part of this exclusive club, I can substitute ‘we’ for ‘I’, I often choose not to for fear that any piece of poetry or essay dances back and forth over the line between preachy polemic and strict solitary reportage. When one disabled person speaks in tongues does the body of water tremor only for the disabled body politic?
Apologies – I believe I am leaking into my semantics diaper.
Lidwina of Schiedam is often considered the first documented case of MS and her story dates back to the 14th
century. Lidwina was canonized in 1890 and is, oddly, the patron saint of ice skaters as well as the chronically
ill. It has been documented that parts of her body simply fell off. Yet she survived to the age of 53 despite this
and 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 4.14. Date of my diagnosis? 4.4.
Disability as entertainment. For entertainment purposes only. For compelling narratives. We give to telethons and walkathons to keep the disease away…like throwing virgins or dogs, sometimes entire cities, into or under volcanoes to appease the gods. Perry Mason. Hilary and Jackie. The West Wing. Geordi La Forge. We don’t tend to mind seeing disability from great distances or on celluloid, preferably fictionalized and neat. With the snuff-ability of a remote nearby or brisk feet to leave that theater with or the sure clap of hands closing the book…that interface allows for the thrill, the misadventures, the diluted pathos. Separation is a smooth blue pill; distance a myopic addiction.
Nothing about us without us. Is it really so much to ask?
Pick-up basketball. Tequila. Theme parks. Crowds. Mountain biking. Night carnivals. Sexuality. 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 anytime 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 10x the energy to send that simple signal, and imagine a portion of the signal being reinterpreted so that your right foot swings wide by .00001 degrees and your bodily alignment is skewed by a 1/16 of a millimeter. 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 and struggles just to get out the damn door, get out to the damn car idling 20 feet away, past the puzzled onlookers, just to be riding shotgun within the vast damnable spectrum of disability. Does that go down easily? Would you like something strong to wash it down with?
Tidepooling, right…So we had 4 families down in Baja, Mexico in late July / early August of Summer 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 brother and I could sleuth around the rocks almost as well as his children: crabs, small darting fish, a Chiton. But if it weren’t for him serving as my walking aid, steadying me not only physically but with stepping stone directions, a few jokes about how lame my lameness was…my big little brother – on the rocks docent - finding himself unexpectedly with a 3rd child to guide.
I loathe 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, narrow 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 blame the system, the incentives, or the 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 by it, or within it.
I would much rather not entertain the coming struggles 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. Like their degrees should depend upon their capacity for empathy. I would hate for anybody to have to stand in my shoes. There is nothing textbook about being disabled.
Perhaps the general public as well…philistines…
We people, as a manner of beings, discard our humanity, our skin-to-skin similar systems. We cast out aspersion
hoping for hits on the line. Trolling. Baiting. Or promoting. There are so many of us with so little. We are, in
many respects, the new lepers. The disabled are the unseen dirty fingers of globalization. We rally for the plight of
underpaid and abused sweat shop workers for example but not for the disabled who work those same sweat shop jobs and
are paid less than whatever meager is and in conditions that even squalor would loathe; threadbare and shop-worn.
Limping and/or immune to the horn ending the shift for it could not be heard. And then there are the naggings about
the costs associated with the hiring of white collar disabled workers, the juvenile behaviors ‘those’ people bring
into the workplace, and the antiquated labor laws supporting such tacit discriminations. We people…the new
lepers. Not quiet though.
Yes ‘We’ have so little regard for ‘the People’. Maxim that ‘that’s just the way things are’ has had its way for far too long. We can agree on that can’t we?
I have a disease … a disability slowly, but irrevocably, in the making. And I have begun to fashion an identity around and extending far from my MS. With other disabled writers and artists. A community growing, galvanizing. With non-disabled allies as well. Wanting to be seen not for what we are now or what we are in the process of becoming, but to be embraced by those who simply are “abled” for our mutual similarities. Sounds like I’ve got an angle right? Associative relationships again right?
So using the pupusa as a construct am I the thick corn tortilla and MS the filling or is it the other way around? It seems to work both ways right? A reflexive model. Can’t I be both the corn and the fill and MS be the cortido piled atop?
I get it. These are not especially pretty processes. The first time I attended an MS symposium for the newly diagnosed I almost fell in with utter despair – lots of people in wheelchairs or with walking aids. I say ‘almost’ as I did not fall or collapse. I did not rail or rant. I instead got my Glam on. I listened to stories and spells for Defense Against the Dark Arts. I felt sorry for nobody, least of all myself. Personally, I re-become by the minute…and not by choice. I hunger for a dish that, for the time being at least, doesn’t exist. But perhaps the ingredients do. I re-become. And is that such a bad thing? True to disease form. Plastic soul rolling with it as it were: self-porn, prettiest star, loving the alien changeling…