I had an interesting…no let’s call it revealing…a revealing experience a few years ago and again a few months ago about two weeks after my wife Dianne and I returned from Spain. Let us now splice baby, splice.
Most of us are aware that fitness, and the visual allure of something resembling perfection, morphed into its own brand of porn maybe a decade ago: see me, feel me, touch me…sans the ‘heal me’ lyrical component as that particular phrase is synonymous with snowflakes and cucks holding hands wishing the world could simply better itself or go away altogether.
Dianne had a coupon for a 1-week free at the local 24-Hour Fitness center. She wanted to swim. She wanted me to go with her.
I didn’t feel like getting in the water but agreed to go. I would read while she made waves. And let me state before we get much further along that I do go to the gym. But my approach is grounded in the ‘Use it or Lose it’ camp rather than the ‘Bustin’ Ass and Building Mass’ sweatshop.
I essentially possess the same body I rolled with 30 years ago. Still very much within my safe weight window. More muscle mass, yes it is true, but that is owed more to necessity than anything else; toning, tightening, trimming. Tenacity…as much as a “crip” can muster.
We got there and went in. She had to fill out some paperwork and the guy processing her up and asked me if I was going to use the weights or swim.
“Neither – I’m just here to read.” He smiled, perplexed a bit I suppose, but continued on with the ‘pitch’ about the facility. He brought up the basketball courts – perhaps because I’m tall and somewhat lanky. “Got intra-league play tonight. Some kids of NBA players and a couple of former NFL guys. They run full-court games.”
Great. I played basketball frequently and with much enthusiastic gusto for most of my life. I can’t anymore; run like the game demands or even very well anymore in general.
I could play H.O.R.S.E. Or participate in free throw shooting contests. But no running.
Though that wasn’t the moment I truly felt out of place. That happened later while waiting for Dianne to re-emerge from the lockers and I was sitting in the main thruway between reception and the lockers (really nice and modern facility, btw). People coming and going. Lots of chit-chat and enthusiastic banter: You workin’ out? You swimming? You lifting? Spinning tonight? Lookin’ good. Nice pecs.
And so on. There I am reading work by poets with disabilities, reflecting on how the large world more often than not defines them/us by a visual representation of defects or by an array of kinky breakdowns that we, the disabled, have absolutely no control over (and food for thought: if one is male and disabled is one then doubly rebuked by the normal fit world for being less than the idealized, prototypical male? Just askin’.).
I am in my work clothes: shorts, shirt, hiking boots (geophysics – outdoors primarily). Looking totally normal on…the…outside. I am awed every few weeks, still, almost 7 years after Dx, by this peculiar situation that I find myself in.
The MS hasn’t ravaged me yet. And it may never fully smote me. It’s like I am stuck inside the membrane that separates unimpaired and impaired.
I’m a ‘tweener. And I’m reading poetry and taking notes inside a state of the art fitness center where I am not participating in the ritualistic honing of my body.
I didn’t feel mystified but more jarred by the juxtaposition of me and them. We’ve all had similar experiences….the feeling that one is stuck in a Jacques Tati moment; fish fountain on, fish fountain off. Over and over again. Haven’t we all been here? I’m just curious. Bet you dollars to doughnuts that yes, most of us have in one way or another.
I wrote many letters back in 2014 as me and a group of MS peeps were prepping for another anthology release. I wrote to JK Rowling whose mother died from MS. Teri Garr has it. Neil Cavuto has it. Michelle Obama’s father had it.
Yes, I went after big names. I sent copies of Vol. 2 of the Something On Our Minds (SOOM) anthology along with my letter in hopes that if these folks could not write with us they could at least send in a snapshot of them with the book to help hype our project.
I got nothing back except for a package from Pennsylvania Avenue. It was the book I had sent along with a letter that appeared to be a form letter albeit one very focused in its discussion of and appreciation regarding disability. The letter concluded with a wet signature. I never told the other editors. And I admit to being more than a bit awed.
And I realize in the refracted light of the former First Lady that Dianne and I should have ‘those’ talks a lot more often, those talks that involve our future together coupled alongside the spectre of very disagreeable disability. She and I should have ‘those’ talks at least once a month complete with stick figure diagrams and the full array of possible outcomes for Sean and the MS. We could cultivate and engender a vegetable love if there indeed were world enough and time.
The awful truth is that there are moments I get f*^king scared and moments where I feel as though I am making various compromises for the benefit of, or due to, my increasingly alien body as the damn thing just cannot be wholeheartedly and unequivocally trusted anymore. I mean I trust this body not to intentionally hurt me but if my life depended upon a daily 5-mile walk to the water well…well…those birds of prey, amorous or not, would most certainly follow and circle.
…What has happened over the course of 2018 makes the urgency of ‘those’ talks all the more pressing. I experienced my first relapse. Which means that my initial diagnosis of PPMS was off the mark.
Which means I have a buffet of disease-modifying therapies (DMTs) suddenly open to me. And I admit to feeling somewhat ambivalent about and abrasive towards that new fact. Because I am no longer 20 and open to taking whatever drug is offered.
These DMTs are not cures. They all are, in effect, impeding agents or miring bogs in that they slow disease progress. But not cure.
They don’t restore functionality nor do they regenerate myelin. I also experienced a go-round with ED, at first blaming the disease itself but then directing my surprise and disdain towards the Copaxone I had to inject in order to be part of a clinical trial conducted at UC Irvine probing the efficacy of N-Acetyl Glucosamine on MS and MS symptoms. The NAG also became a lightning rod for my ire.
And I did feel helpless – even sorry for myself – for a few months. As in I’m too young for this to be happening. Like do I need to feed my libido more frequently with strange delights and foreign desserts? Like should I invite Dianne to fill her sexual needs elsewhere since I am but a fragment of what I once was?
But ultimately I chose action over despondency. I addressed my testosterone directly. I did not give in to what one of the neurologists at UCI told me about this just being that time of my life where age begins systematically deleting certain functionalities; he certainly was unprepared for any conversation involving a penis: Oh I’m sorry Mr. Professional Doctor person does talking about my junk, one male to another, make you uncomfortable? I experimented and supplemented myself back into being a sexually responsive creature…back to how and what I was before Copaxone, NAG, and a relapse.
Apologies for the sidetrack/hijack. So does the self-directed query then become a somewhat accusatory ‘am I better off having more time to ponder what I have lost, and am in the process of losing’? Ask me in another 10 years.
In the meantime, I took my first infusion of Tysabri in the first week of March 2018 before flying off to Tampa for the annual Association of Writers and Writing Programs (AWP) book fair love-a-thon. A humanized monoclonal antibody; better than rat genes I suppose. It is supposed to act like a secondary layer of protection around the blood-brain barrier and intestines (gut biome you know) preventing those miscreant and inflamed immune cells from passing through, pitching their tents and causing further damage.
At the moment, this right here and right now time of day, my love power naps and takes a break from the books. I will wake her at the pre-requested time, greeting her as though this day, and even tomorrow, depending upon her return to the horribly confused and wildly indifferent world.
Note: Victoria Williams and Exene Cervanka have it. Clay Walker and Jack Osbourne have it. Judy and Tracy have it. Travis and Sleepy and Doc have it. I suspect many more than the actual numbers paint. There are children under the age of 10 out there – out there in the wide, wide gray of angst and ridicule and almost free for all bloodshed – that have it…yet cannot get to a neurologist specializing in it or even afford to have it be diagnosed correctly.
There is stigma. There is shame. There is loss.
An individual reduced. And Dianne, being an RN, understands this almost as well as the duly afflicted themselves.
***
At AWP18 I wanted to attend a particular reading one afternoon. I was unable to find the room in the convention center. I walked to the information counter. I asked the guy where such and such particular reading was taking place.
He looked at my schedule of events and then pointed out the 3rd story floor glass doors leading to the somewhat odd and meandering set of stairs (with ample rails, mind you) leading down to floor/street level and then I could just walk over. I asked if there were any shuttles. He literally said I could take a boat.
Which excited me…I said, really? Where? He said there are no boats…the Marriott is right over there.
So much for AWP’s disability consultant…someone please assure me that this information desk guy’s demeanor was not an example of focused empathy training and exemplary customer service. This consultant, by the way, had the audacity to appear at the Disability Caucus meeting to address our questions and concerns. That did not go well, nor did her appearance result in any sort of positive construction of the long, long sought after bridge between AWP and the disabled community. Things are still very much like all hyper-estranged family members seated round the Thanksgiving table.
And I was just…freaking stunned. As my brother and I left the counter and headed out the doors to the nagging stairs and those geodesic planters, a discordant yet far too familiar echo began stomping its boots on the grounds around in my headspace and a wee tempest started turning purposefully. Some rightly directed anger: moving from straight up personal insults to violent vignettes. He deserved to get it: a sock in the eye or the fiercest wedgie ever known in Tampa, or a fresh f#@king steamy load in his lunch box…damn twit.
Am I supposed to wear a damn t-shirt explaining myself every day? A t-shirt with my lesions mapped out and named based upon locale – like the most recent one on my thalamus, which I christened Cassandra. Well, obviously.
***
So we walked over in the crowded streets. Once inside the Marriott, and wandering for 10 minutes still awash in purpled tank and plum we find the information desk and are informed the reading had been the day before.
Not a disability moment. But a human one. And maybe that is a story I can tell people.
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