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.

Money

"Money, get away/get a good job with good pay and you're okay"

– Pink Floyd, Money

I had a good job with good pay but I don't know that I qualify as "okay". If someone had asked me in college if I would be "okay" without a shred of independence by the age of 35, I am certain the answer would have been, no.

Recently a good friend sent me pictures of his new house. It is gorgeous. Breathtaking. And I am 100% happy for him. I swear. I am not at all jealous of his beautiful house or his in–ground pool in the back yard or even of his beautiful family. I am however just a smidgen resentful that as a result of this disease all of my hard earned savings will inevitably be used for caregiving costs. I am scared that after 12 years of teaching in Baltimore city public schools all I will have to show for it is a remarkably uncomfortable $33,000 power wheelchair, a $10,000 standing frame, a $14,000 RT bike and a car payment for an ungodly expensive accessible (and shockingly unreliable) Dodge minivan.

I suppose I am a tad bitter that rather than spend my money on things I want (a vacation to Australia, a house on the lake, an accessible bathroom for Kelly's house so we may one day live together), I'm worried about saving my money for things I will likely need (caregiving). I currently live rent-free with my parents in a beautiful accessible house, and I pay for a private caregiver who works between 9 AM and 3 PM Monday through Friday. Thanks to the physical therapy and occupational therapy programs at Ithaca College, I have a number of responsible and highly entertaining college girls who work with me every evening and over the weekends. All told my caregiving costs range from $550-$650 a week  (which is actually a steal considering how much it could be without my mom's help every afternoon and Kelly's help whenever she isn't working). In addition I pay hundreds of dollars out of pocket for supplements and biweekly acupuncture appointments. Add to that my copayments for prescription drugs/doctors appointments/durable medical equipment and I am lucky if any of my monthly pension check remains to pay my credit card bill.

When I think about the facts of my situation it results in a distressing combination of emotions that range from rage to misery. On good days I ignore the facts and temporarily convince myself that everything will be fine. I am, after all, one of the lucky ones. It's true: although I cannot voluntarily move three and a half of my four limbs, I am probably the luckiest immobile person you'll ever meet. As a teacher in Baltimore city I had great benefits, I qualified for a pension, I have both Medicare and a supplementary health insurance plan, a prescription drug plan, all of the physical therapy and mobility equipment I need, a family I love and a girlfriend whose support I can hardly fathom. What I do not have, however, is peace of mind.

So I made some phone calls regarding my aforementioned facts. I called the Department of Social Services concerning long-term care programs. I explained my situation and, after giving all of the background, asked: "Is there any financial assistance available for caregiving costs?"

"Do you qualify for Medicaid?"

"No I do not."

"Well I am sorry, there is nothing we can offer you at this time."

Not altogether surprised by that conversation, I called Medicare and my supplementary health insurance:  neither one provides any financial reimbursement for home care services or home health aides. Both conversations ended with similar sentiments: "I am sorry, there is nothing we can do for you."

The conclusion I am left with is this: there are no services available for people with disabilities who live above the poverty line. So what do I do? Continue spending the majority of my pension check on caregiving and healthcare and keep my meager savings intact until a rainy day? And the reality is, I don't necessarily want to live with my parents forever, my goal is to one day live with Kelly; a goal I can only reach if we can both come up with money to redo her bathroom, and add a small addition to her basement. Do I dare spend my savings on something so luxurious when, at the same time, I will need to pay additional caregivers on the days that she works?

I suppose I am just confused. 7.8 % of the adult population in the United States qualifies as severely functionally disabled (click here), but it seems that without Medicaid eligibility no support is available to these millions of people.  Further, if someone is Medicaid eligible, circumstances are still far from ideal – many private homecare agencies do not accept Medicaid eligible clients, which leaves a person with decidedly little control/choice over his own home care. So what do these millions of people do? How do they afford care? How do they live comfortable and productive lives in accessible environments with compassionate caregivers? Do not even get me started on a potential expense of full-time in-home caregiving services; one local agency here in Ithaca, New York charges $15,000 per month for 24–hour care, $180,000 a year.

I suppose for some people it is possible to rely on family members, but that is neither ideal nor an option for me. My father also uses a motorized wheelchair thanks to this disease and my mom is too small and too fragile to care for either one of us without ending up in a wheelchair herself. Further, my suspicion is that were my mother physically able to care for me it would destroy our relationship. As it is she runs this household while dodging the near constant requests from both her daughter and her husband (thankfully he, at least, still spends a good amount of time at the office). Despite the fact that I pay caregivers for between 30 and 40 hours a week, the number of things I cannot do on my own persist during the other 520 hours a week: mom, can I please have a sip of water? Mom, can you please scratch my nose? Mom, can you fix my phone please? Mom, can you straighten my arm? Mom, I'm sorry to wake you up but my legs have spasmed into a pretzel. Mom, I know you're about to burn something on the oven but I really need to pee when you get a second please.

You get the point. The list of things that I need help with is exhaustive and could likely try the patience of Job. There are times (more often than not in fact) when I can hardly understand why any able-bodied person would choose to spend time with me without getting paid, it's a thought that does wonders for my self-esteem. It's a thought that makes me realize how dehumanizing it can be to have a disability. Because no matter how many times I remind myself that, as my mom says, I am not this disease, sometimes I feel as though my needs are suffocating everyone around me and all I am left with is a sense of guilt and shame that threatens to strangle any sense of who I am.

And it breaks my heart to realize that I am not alone. It breaks my heart to think of millions of other people struggling to figure out how to afford caregiving services. It saddens me to think of how many family relationships have suffered as a result of family members transitioning into primary care providers. Above all I feel an overwhelming, almost smothering sense of empathy for anyone whose peace of mind has been replaced by near constant logistical and financial stresses that seem to go hand in hand with any type of chronic illness or disability in this country. Although it is convenient to ignore, financial and logistical concerns – though as real and constant as the illness itself – are nothing compared to the stress of living inside a body that has forsaken you. For me that is what stings the most, that while I spend so much time stressing about caregiving and fearing that I am a burden, at the end of the day the fact remains: I hate this disease. I hate what it has done to my body. I hate what it has done to my family. I hate what it has done to the career that I loved and to my professional goals. I hate what it has done to my friendships. I hate what it has done to my bank account. Most of all, however, I hate what it has done to who I am. It replaced my confidence with insecurity, my optimism with fear, and my goals with concerns about my long-term financial obligations.

I do not want to be a victim of my disease. Most days I do not think that I am. The reality is, however, that the catalog of my physical needs necessitates full-time care. And quality care is not cheap. I try to keep my head up and follow the alcoholic's Creed: one day at a time, but when I see beautiful pictures of newly purchased houses, it still makes me just a little bit sad.