Tuesday, September 13, 2016

On "Good Enough"

For as long as I can remember I have been a perfectionist. I was the type of student that drove me insane as a teacher, because rather than cross out a messy or misspelled word, I would elect instead to start the entire composition again. I came out of the womb with high expectations for myself and for the life ahead of me.

It is ironic how imperfectly – as judged by my former self – things turned out.

One of the only independent things I do currently is use my computer. Specifically, my mom's computer. Although someone needs to put the computer in a proper place and attach the headphones to my head, once the Dragon Dictation is open and running I am able to independently access the outside world without anyone's help. Which – given the fact that I have literally no autonomy over any aspect of my life – is a miracle. Never mind the fact that after struggling with the Dragon's inconsistencies on my beloved MacBook Pro for four years, I had to appropriate my mother's PC and acquire a different version of Dragon, or the fact that writing one paragraph using the dictation takes me about 10 times as long as it ever would have when using my fingers, or the fact that rather than use the mouse pad to click on something I need to use the infinitely annoying "mouse grid" command, the Dragon – and all of the frustrations that come with it – simply has to be "good enough. "

I currently drive my motorized wheelchair with a head array which has, to date, led to two different 15 inch gashes in two different walls in my parents house, has led to the near mangling of my left leg underneath my bathroom sink, multiple near disasters on the way into and out of my van, an array of publicly embarrassing mishaps in clothing stores, grocery stores and restaurants and which, on a good day, catalyzes a cacophony of swearwords from my mouth that cause mothers to cover their children's ears in my presence. All of that said, the head array, in its current state is functioning as well as it ever will. So despite the fact that every time my chair runs over a crack in the pavement or a doorjamb and my head jostles just enough to randomly turn up the speed or cause the chair to veer violently to the left or right, I suppose it has to be "good enough."

Due to the need for my aforementioned motorized wheelchair, I need a converted van to leave my house. After dealing with the chronically malfunctioning power ramp equipped in my previous Honda Odyssey, I downgraded to a Dodge Caravan with a manual pull out ramp. The pros of the van: the ramp works even when it is cold out (the Honda' s ramp would freeze and refuse to function) and does not automatically refuse to work if it senses a curb (also a chronic problem in the Honda). The cons: literally everything else. It is loud, it drives like a school bus, the seats are uncomfortable for the driver/passengers, the ramp – on one occasion – actually fell out of the car, every visible (and presumably invisible) part of the van (including the interior floor) is already rusting after not even two years, it gets crappy gas mileage and – this is the kicker – it still cost more than my parent's first house. Still though, I need an accessible van, I distrust the reliability of the ramp in the Honda, and I don't have an extra $75,000 to spend on a new (questionably better) van. So I am stuck. Stuck with the Dodge that will have to be "good enough".

This will be the last of my rant and it is, admittedly, of minimal importance in the grand scheme of things, but I so miss having control over my hair and makeup. Thinking it would make things easier, I let my hairdresser (also an old caregiver and good friend) cut my hair off a few years ago. My long hair was constantly in my face and without working arms and hands, pushing it out of my eyes/nose/mouth was an impossibility. I mistakenly thought short hair would simplify my life, and with certain caregivers it actually did. But for my poor Ithaca College students who worked on the weekends, my short hair was a bit of a nightmare. A nightmare in part because all of my gorgeous long-haired college students were woefully inadequate and inexperienced at dealing with short hair, and also in part because I was a woefully inadequate teacher:

Me: okay, first you need to towel it dry and part it on the right side.
(Student follows directions verbatim)
Me: um, not quite that far to the right and it's a little bit crooked.
(Student attempts to fix problem)
Me: better (even if it is secretly not), now just try to smooth down the right side a little bit and shake your fingers through the left side so it looks a little bit more textured.
Student: not exactly sure what you mean by textured, like this?
Me: not exactly, hold your fingers like you are playing the piano and just shake them back and forth through my hair…
Student: like this? Is this good?
Me: (trying to sound genuine even though I want to throw a temper tantrum) absolutely. It is absolutely "good enough".

Makeup, though thankfully more self-explanatory, frequently yields a similar level of frustration. Not just with the college students however, but with everyone. Nobody does it the way I want to do it – it's not blended perfectly, the mascara is clumpy, the blush is too dark, etc. At this point I wear makeup on very rare occasions, and when I do, you can rest assured, it is most definitely just "good enough".

There are thousands of things I wish I could do in a day, and there are thousands of things I imagine I would do "perfectly" were I able. I also know however, that I would never be as patient or as kind to myself as my caregivers are. Even when I am staring in the mirror complaining about my hair and my mom peeks her head in to the bathroom and says, "your hair looks exactly the same as it did yesterday", my caregivers will painstakingly part and re-part my hair over and over again until my "good enough" sounds convincing.

So while my Dragon, my wheelchair and my Dodge minivan are not – as it turns out – as "good enough" as I wish they were, I want to acknowledge how lucky I am to live in a place and time where these things exist. All three of those things allow me to interact with the outside world and there is no way to overstate their importance. Additionally, it is entirely possible that, had I not spent the first 19 years of my life able-bodied, I would not even know that things could be better than "good enough". I would not have driven my own cars, or used my own fingers to type and navigate the computer, or seen how seamlessly I could walk through hallways and open doors without damaging walls or yielding personal mortification. I know that I am incredibly lucky – given my unique set of unlucky circumstances – to be sitting in this wheelchair, slowly dictating this blog, after taking my dog to the creek in my rusty minivan. But sometimes, memories of an easier time in my life creep up on me like a masked man with a gun at my back and I cannot help but think, things sure could be just a little bit better.

Monday, February 15, 2016

The Danish Girl

Kelly and I watched The Danish Girl this weekend, and for countless reasons it impacted me more than I expected. I have always considered myself a staunch liberal on social issues, I have a strong desire to give a voice to the voiceless and to fight against the injustices of educational inequity and economic disparity. Social promotion, under resourced schools and racial inequalities raise the metaphorical hackles on the back of my neck. Here is what is strange, though: when it comes to disability rights and issues of gender and sexuality, I feel pretty – I can't even think of the word – detached.  Detached is not entirely true, I care deeply for these causes (obviously), and I am moved by the ambitions and the work of those around me who have fought to allow me to navigate this country in my wheelchair with my girlfriend at my side. Further, I understand how much work remains in front of us to make this country truly accessible and to make society truly just for the LGBT community. So please, please do not think I am undermining the importance of either of these causes, but it is not something I feel passionately drawn to fight for (the irony of this feeling is not lost on me).

All of that is to say, when I watched the movie I was prepared to feel moved and I was prepared to feel inspired. I was not, however, prepared to feel such a strong personal connection to Einar, the young man in the movie (brilliantly portrayed by Eddie Redmayne) who identifies as a woman. It is a testament to Redmayne's acting that suddenly I felt better able to understand what gender identity issues feel like. Never before have I had the desire to be a man (though I always thought it would be much easier to pee), but when I saw Einar's visceral pain and yearning when he looked in a mirror, I thought, oh my God, I totally get it.

To see a trailer for the movie, press here

"He" was never truly a he, she was just trapped in a body that earned her a male pronoun. This has always seemed so foreign to me, until I saw the anguish that Einar was living with. I watched the desperation in her eyes, her fear, her resentment, and her willingness to risk her own life to relieve her cognitive dissonance. Halfway into the movie I felt like Eddie Redmayne himself reached through the screen, shook his fist at me and said, "how can you not get this? You have spent every day of the last 18 1/2 years unable to make peace with the body you are living in. Unable to reconcile the fact that the person you are is stuck inside of the body you aren't."

When Einar, who identifies as Lili, looks in the mirror and feels able to identify with her feminine self, I am reminded of looking through pictures of my freshman year at college. When I was a runner. When I was tall and strong and confident and hopeful. That is still who I am. In contrast, when Lili looks in the mirror and sees her body's masculinity, she feels detached, resentful, scared and defeated. I again am reminded of myself. How I feel when I see my reflection when sitting in my wheelchair. I am no longer able to maintain good posture; no longer able to hold myself erect; no longer myself. I am staring at a stranger in the mirror that has been ravaged by the effects of multiple sclerosis.

I've said before, my mom frequently reminds me that I am not my body. This is true I suppose. But the unfortunate corollary to that belief is that I am – and forever will be – stuck in this body. And that is an incredibly bitter pill to swallow because I feel destined to exist in a body that will never represent nor collide with my authentic self. The Oxford online dictionary offers the following synonyms for the word disabled: handicapped, debilitated, infirm, out of action, bedridden, crippled and lame. Additional synonyms in the online thesaurus continue along those lines: weakened, confined, lame and powerless. The person I am is strong, driven, compassionate, warm and motivated, but when I see my body those words evaporate from my consciousness. How can they not? Strong is an antonym for disabled just as I am an antonym to my body. What do I have to do then, now that I am in a power chair that I will soon drive with my head, to prevent people – including myself – from looking at me and thinking any one of those pernicious synonyms?

As far as society goes, I have no idea what it would feel like to navigate life as a transgendered person. Nor do I have any idea what it truly feels like to be unable to identify with my own gender. I do know though, that at the end of the movie Einar risked his life to merge her identity with her body and it is clear that she never regrets taking the risk. She never regrets fighting for the chance to live as her true self. How much I wish to have that opportunity.

On good days, or rather during good moments, I can somehow forget about my body. I can be so entirely engaged in something that it is almost as if I am functioning outside of myself. Or maybe more accurately, I am functioning entirely within myself and outside of my body. These moments are miracles and I never take them for granted. When I taught, these moments could last for entire class periods – 47 full minutes. For 47 full minutes nothing would infiltrate my thoughts other than whatever subject I was teaching or whichever student I particularly adored or particularly abhorred that day. Moments like these are increasingly fleeting these days. These days more and more of my daily routine is MS-centric, so I spend more time detached from who I am than embracing who I am. When it takes three hours every morning to "get ready" for the rest of the day, and when the rest of the day frequently entails MS-related appointments, physical therapy exercises and a few hours connecting with the outside world via my dreaded voice dictation software, I don't have much time for my authentic self.

There is another side to this coin however. That is the fact that the Danish Girl presented one of the – if not the – most profound love stories I have ever seen. Because as Einar struggles, and as Einar quite literally disappears, his wife's love never falters. It is the type of love I've yearned for throughout my entire life, the kind of love whose existence I had come to doubt. Gerda's love for Einar knew no boundaries. We see in the film that unconditional love is not always pretty, and is almost never easy, but it does indeed exist. I think I have found that kind of love with Kelly. Gerda's love for Einar transcends his body and transcends his gender. I have no idea how Kelly would react if – in addition to a neurological disease – I also was unable to identify as a woman, but I do know that Kelly is miraculously able to see who I truly am despite the body I am stuck in. That is not to say that my body is always a welcome addition to our relationship – in fact, I think Kelly probably feels disappointment and anger towards my body almost as frequently as I do. We actually named my disease so that when frustrations run especially high we can both direct our anger at "Gary" rather than at me. Which is to say that there is a lot of frustration in our lives. How Kelly was ever able to see who I am, much less love me in spite of Gary's omnipresence, I have no idea. It is even more of a miracle than the moments I have where I forget about my body.

What I most deeply appreciated about Gerda during the movie, was her heartbreaking honesty. She was raw (For example). Nothing about her relationship with her husband was easy, but she never ran away from the challenges their relationship presented. My relationship with Kelly does not come with a guarantee, and even she has said it might, at some point down the road, be too difficult for her to handle. She makes no false promises about a "forever after", but for now we are both 100% committed to figuring out our lives together. We are each other's best friend and I feel incredibly blessed that – at least for now – neither one of us will have to navigate this unpredictable life alone.

The Danish Girl did not heighten my resolve to fight for the rights of the transgendered. I apparently am too selfish for that. It did, however, remind me that my occasional (who am I kidding, my constant) frustration makes sense. It reminded me too, that it is when I am working with (occasionally obnoxious) high school students that I am still able to identify with my true self. I need to figure out a way to regain or to replace this connection. Writing always helps. As frustrating as voice dictation is, I always feel immensely better after writing. Maybe I need to renew my commitment to a journal, words that don't require editing or publishing, but that nonetheless yield catharsis. Above all, though, The Danish Girl reminded me of how lucky I am to have a partner who knows and loves me. I know that Gary sometimes runs the show, and I know his presence is beyond imposing, but somehow Kelly manages to love me more than she hates Gary. If only I could do the same. If I could find a way to accept that Gary has turned a beautiful partnership into a complicated triad; if I could find a way to remember that love is stronger than this disease, and just accept my constant cognitive dissonance, then maybe, just maybe I could find some peace.

Friday, January 08, 2016

On memories. And sandwiches.

Apparently I was feeling a tad masochistic last week, because I decided to watch the documentary that a group of talented Poly students produced during my last year of teaching (the 2011 – 2012 school year). That a group of senior high school students wanted to make a documentary about me was at once flattering and deeply embarrassing; I was touched that these students (the majority of whom I had never taught) were aware of the hardship associated with my commitment to teach in spite of this disease, but I was by no means enthralled with the idea of capturing any of this hardship on film. Regardless, when they approached me with the idea in September 2011, I immediately said yes – how could I say no to a group of aspiring teenage filmmakers? (Although in the spirit of honesty, I was secretly hopeful they would change their minds.)

So amidst an emotionally and physically tumultuous final year of teaching – a year punctuated by monthly infusions of chemotherapy, extended periods of sick leave, and the constant frustrations associated with sharing my classes with a "co-teacher" – my struggles were intermittently captured on film. That said, I suppose it should be obvious that re-watching the documentary would not result in a happy stroll down memory lane. Quite the contrary, it stopped me in my tracks, but for reasons I did not expect.

If you are interested, the link to the documentary is attached. I somehow doubt it will have as profound an effect on you as it did on me. (Health Interrupted) The kids named the documentary after my blog, and they did an amazing job. They even won an award for excellence in documentary making, received $200 and donated the money to my caregiving needs. You wonder why I miss my job!

I remember so clearly, lying in my hospital bed at Johns Hopkins Hospital in April 2012 and reaching the conclusion that I could no longer teach. All of my resources, every last one – my money, my emotional fortitude, my determination and any remaining physical strength – they all went into my career. At that particular point of the school year, I had already hired four different live-in caregivers, I paid someone to escort me to and from school, I still paid Kristen  (my first and best caregiver) to accompany me twice a week to Kennedy Krieger for physical therapy in their open gym, I depleted 100% of my sick days within my first few months on chemotherapy and relied upon "the sick bank" to pay my partial salary when I was unable to attend school, and I was a veritable physical and emotional train wreck. Lying in the Hopkins hospital bed, I mulled through all of these factors and concluded it was time to raise the white flag. Although reaching that conclusion immediately lifted an elephant sized weight off of my shoulders, it resulted in an elephant sized hole in my heart. Everything that raced through my mind in the hospital during those 10 days is now firmly associated with the memory of the dark hospital room eerily illuminated by the green lights of my IV pump. There have been significant hardships in my life with this disease, but the 10 nights I spent in the hospital wrestling with the knowledge that I needed to retire, were the darkest and most hopeless I can remember.

So why would I choose to watch a documentary that spanned nine months of my life that I'd rather not remember? I wanted to see my old students. I wanted to see my old classroom. I wanted to see if I still missed it as badly as I think I do. I do. But even that is not what catalyzed my funk. My funk was caused by something seemingly insignificant – eating a sandwich. Seriously. About halfway through the documentary someone filmed me eating my lunch and I was astounded, I could feed myself. You could tell it was not easy, but the sandwich made it into my mouth, which seemed, to me, miraculous. I actually thought, holy shit, if I could still feed myself why the heck did I need to retire? Given how much I couldn't do at that point, I knew that thought was sort of ridiculous, but it definitely ran through my head. My next thoughts turned ugly, if I have progressed so significantly within the last 3 1/2 years, what is next?

I thereby entered into a funk. It occurred to me that I very naïvely believed that when I retired in April 2012, the progression would stop. I had raised the white flag yet the assault continued. Isn't that considered a war crime? That this disease continues to ravage my body in spite of my complete surrender, seems plainly unjust.

Fast-forward to my latest disease-inspired concern: driving my wheelchair. I currently rely on my left hand to operate the joystick, and increasingly my left hand has become completely unreliable. I have a number of examples that highlight its unreliability, and many of them are actually comical in retrospect. Basically the tone (extreme and involuntary muscle contractions) in my body has become widespread and unrelenting. The tone used to be confined to my legs, but as the ravages of this disease have spread upward, so too has the tone. Certain things are catalysts for an impending muscle spasm, these things include, but are not limited to: any type of physical sensation, cold weather, wet weather, yawning, sneezing, laughing, feeling tense, stressed, excited, frustrated, happy or angry. The risk when I am driving my wheelchair is that the spasm will occur on my left arm, thereby causing my arm to straighten and push on the joystick. The straight-arm spasms have led me into more than my fair share of pickles, many of which were incredibly dangerous. Worse still, once I lose control of my arm it catalyzes a number of the aforementioned emotions that make my arm virtually unbendable rendering my pickles very difficult to resolve.

A number of these "pickles" occur on the ramp outside of Kelly's house. For whatever reason the threshold of her doorway causes enough of a physical sensation to cause my arm muscles to tense, the tension elicits panic and the panic elicits a straight-arm spasm that frequently lands me off the ramp and in the lawn (or, depending on the weather, in the mud or the snow). A few months ago we reached a breaking point and Kelly, as she attempted to extricate my 400-pound chair from the mud, said something along the lines of, "enough is enough, you need a new way to drive your chair." There was absolutely no ill intent behind her words, but they hit me like a cattle prod to the heart. Kelly's point was simple: I need a way to drive my chair that doesn't elicit 600 negative emotions on top of an ever increasing number of perilous pickles. So why, one might wonder, did her words hurt so badly?

Her words stated the obvious. I have gotten worse. Again. This was not a surprise. This was as predictable as Ithaca's interminable winters. And once again I will need to make yet another modification to the way I navigate the world. The progression didn't stop when I moved home, and it's making no promise to do so anytime soon. I cannot digest this truth, I cannot even so much as accept this truth and sometimes it literally robs me of my ability to breathe.

Nevertheless, the following Monday I called my wheelchair vendor, and the week before Christmas he and two other wheelchair guys came to my house to teach me how to drive with my head (they were remarkably poor teachers and I ended up putting a foot-long hole in the kitchen wall). Nonetheless, I am grateful, truly grateful, that alternative options exist and I will still be able to drive myself without the constant assistance of others. I am grateful that Medicare will cover yet another expensive piece of equipment that I do not want but absolutely need. I am grateful that – once I get used to the new contraption – I will not find myself in pickles that inspire negative emotions, put me in danger or necessitate my girlfriend to lift a 400-pound chair out of the mud. But, to put it bluntly, it still sucks.

And all the while I am stuck on this: just 3 1/2 short years ago I could feed myself a sandwich.