A double-edged sword

I am struggling to make peace with progression. For me it is like trying to find stillness in the eye of a storm, or trying to hold something small, squirmy, and slippery between my fingers – it seems impossible. I take a lot of pride in the way I have handled the last (almost) 18 years of my life, because I worked with such determination to keep moving forward. When I could no longer run with the cross-country team, I started biking. When my legs were too weak to bike, I started swimming. My unofficial motto became: do what you can with what you have. And since my diagnosis in 1998 I discovered that I could do a surprising amount of things; things I never even thought of doing when I was healthy; things that, incredibly, I learned to love.

Case in point: frequently I was unable to find peace on a bike ride. So, rather than allow the MS-related cycle of negativity to run rampant in my mind, I would finish my reading for the next day, grab my piano books and shut myself in one of the practice rooms down the hill from my dorm at Colgate. I hadn't touched the piano between my freshman year in high school and my sophomore year in college, but as the little losses in my life began to accumulate, I noticed that music started to feel different. It took a few weeks, but gradually I remembered how to read music and with practice started playing songs that I had never before attempted: Chopin's Preludes, Pachelbel's Canon and the Moonlight Sonata. As my fingers danced over the keys, sometimes clumsily, I let fear and resentment and anger drain out through my fingertips, and I let the minor chords feed the sadness inside of me that no one's words could touch.

I started drawing again too, mainly just copies of other artist's landscapes or impressionistic exaggerations of beautiful sunsets I had photographed. I worked with oil pastels while sprawled out on the floor of my bedroom. I would work until my eyes burned and my fingertips were covered with an oily, waxy coating of every color imaginable mixed into an unsightly greenish brown. There was no such thing as a mistake with such a forgiving medium; errors were easily covered and layers easy to remove with a light scratch of my fingernail. Many of these pictures currently adorn the walls of my parent's house reminding me that beauty is everywhere even if sometimes it seems so far away.

And then there was swimming – oh how I once resented swimming. I remember being in the gym watching other women get changed into running clothes and feeling so defeated. I would sit in the locker room silently seething, trying to summon the energy to start the process: transfer from chair to bench, peel off teaching clothes, locate swimsuit in gym bag, guide legs, one at a time into the holes, find an open locker to grab onto, pull myself into a shaky stand, hold on to locker with one hand, yank my bathing suit up with my other hand, lower myself slowly into the wheelchair, grab the towels, my goggles, my bathing cap, my pool buoy and my flippers, wheel out to the pool, swim for an hour and a half and then begin the dreaded process of showering, getting dressed and driving home. I always had to take into account the diminished function of my muscles post workout; there was a pretty miniscule window of opportunity during which I could shower and get changed without collapsing, and once I exceeded that window of time my body was completely done. After driving home and making my final transfer from car to wheelchair, I was lucky if my body would even cooperate to assemble a bowl of cereal for dinner.

Even in retrospect, swimming was a phenomenal hassle. But it was also my saving grace. I started swimming in 1998, less than a year after I was diagnosed, and I stopped in 2010 after my surgery. 12 years. Although I never swam competitively, I spent more time in a pool than I ever spent on the track. Swimming completely changed my physique, my shoulders broadened, muscles in my back I had never before noticed emerged with great prominence and during the summers, after countless hours of freestyle swimming in an outdoor pool, my swimsuit tan lines were so drastic that when naked I appeared to be wearing a white speedo. Most importantly however, swimming gave me the same sense of peace that I had once achieved while running. Staring at that stupid black line on the bottom of the pool, concentrating on nothing but my stroke and my breath, I found that it was possible – at least on some days – to swim myself happy.

It has been five years since I last swam. Five years since I begrudgingly drove to the gym in Baltimore. It has been five years since I kicked the door open between the locker room and the pool and wheeled myself next to the ladder where I would park my chair. Five years since I grasped the titanium metal bars that connected my wheelchair seat with my foot-plate and slowly lowered my body to the pool deck where I would place my legs, one at a time, into the cool water. Five years since I awkwardly lowered myself into the water, walked tentatively to the end of the lane and pulled on my goggles. Five years since I took a deep breath, submerged myself in the water, and pushed off against the wall.

And then, within the first 30 seconds of my very first lap I exhaled all of my resentment and frustration, and used my anger to power my flip turns. 500 m into my workout my magical memories of running were superseded by an almost meditative concentration inspired by the black line on the bottom of the pool. Under the water, no one besides the lifeguard knew it was my wheelchair on the pool deck. And although I never "forgot" that I had MS while swimming, under the water I felt light and strong; unencumbered. Even though I could not walk even one step without holding onto something, when the water was cold enough I could use my legs to kick for up to a half a mile. I could flip turn – I could do a half somersault, plant the bottoms of my feet against the cement side of the pool and push off. I did silly drills to work on my stroke and timed myself through all sorts of modified track workouts in the water. When my legs fatigued from kicking I would slip the pool buoy between my legs and continue on. I was never very fast but it didn't even matter, no matter how slowly I swam, I always felt like a better version of myself when I was finished.

That might be the crux of progression: rather than purge my frustrations, anger and fears on a canvas or on the keys of a piano or underneath the chlorinated water of the pool, I try to keep it all at bay somewhere deep inside of me. It makes for a version of myself I struggle to find tolerable, a version of myself that on some days I could frankly do without. I am so sick of loss. And it is this loss that fuels my frustration, this loss that fuels my resentment and my anger and my sadness. It is this loss that yields memories that elicit a pain that narcotics can't touch. From where I sit now it is hard for me to embrace the motto that yielded so much post-MS satisfaction, because that same motto has yielded so much post-MS grief. Do what you can with what you have. Until.