Sunday, June 28, 2015

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.

Monday, June 01, 2015

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.


Monday, March 30, 2015

Why I never made it to the last Cornell hockey game

I have contemplated what the "best case scenario" might look like from the vantage point of someone in a motorized wheelchair, and though there are days when things are far from perfect, I do realize that I am incredibly lucky. I have a better emotional support system than I probably deserve, I live in a beautiful and accessible house with two supportive parents, I own an accessible van, and I have found a number of excellent caregivers. What I do not have however, is a dog–friendly dog. And what makes my dog even trickier is that she is completely inconsistent. She is angelic with my mom's two little dogs, she is great with my brother's goldendoodle, she adored my old dog walker's little Chihuahua, and despite a minor snafu (which resulted in a small amount of bloodshed), she was best friends with my old roommate's pit bull mix, Sadie. However, despite her occasionally saintly behavior, she also has sent more than one dog to the vet's office, has been kicked out of more than one dog park and will never, ever, even on her best day, be considered trustworthy.

So what to do about the fact that my girlfriend owns Truman, the most precious Boston Terrier in the history of Boston Terriers? It took months, but Kelly and I thought we had a solution: get the two used to each other while Izzy wears a muzzle, keep them separated, and always keep a sharp eye on both of them. After a few weeks, Izzy graduated from a muzzle to a snoot loop and shortly thereafter from a snoot loop to just a collar and leash and eventually to well supervised freedom. Kelly and I were cautious, but it seemed that my dog respected Kelly enough that she was remarkably tolerant of Truman. Fast forward to the last weekend in February. Izzy and I had just arrived at Kelly's house and Izzy was quietly chewing a stuffed snake. Truman walked over, sniffed the snake and unknowingly incited chaos. Before Kelly or I could even say stop (or no, or leave it, or any type of command), Izzy's teeth attempted to pulverize 15 pound Truman. Kelly descended upon the two dogs with the speed and direction of a superhero and managed miraculously to protect Truman from any serious harm. I cannot provide any sort of detailed account of what happened from that point forward, because I think I went into a semi-conscious state of shock, anger and fear. All I know is that at the end of the attack, Truman was fully traumatized yet miraculously uninjured, Kelly was bleeding and Izzy, completely unfazed, returned to peacefully chewing the stuffed snake (I am pretty sure such behavior qualifies her as a legitimate sociopath).

Things I never again want to hear out of my partner's mouth include: "Look Kate, you can see my muscles moving under the skin" or  "Wow, I think that is a tendon". How would able–bodied Kate have responded? Hopefully I would have gone into triage mode and put Izzy in the crate downstairs, checked Truman for any puncture wounds and drove Kelly to the hospital. As it was however, all I could do was stare in shock and disbelief, tell Kelly that we had to get to the hospital and try to stay as calm and still and un-needy as possible.

This was completely new territory for me. I am unfortunately used to dealing with the limitations of my disease and its effects on family, friends and caregivers. I am not, however, used to seeing its effects on my partner. I have no idea how to reconcile my vision of the partner I want to be with the partner I am. I want so thoroughly to be helpful: to do the dishes after she cooks, to vacuum after one of the dogs pulls all of the stuffing out of a toy, to help her fold the sheets or do the laundry or clean the toilets. And above all the routine duties I wish I could help with, I want desperately to take care of her when she is sick or, in this particular case, when she is suffering a ligament–exposing bite wound imposed by my dog.

But, I cannot. Instead I remained quietly in the wheelchair, and watched as she took Izzy to the crate downstairs. She checked Truman over for bite marks and eventually, once convinced that he was okay, we headed slowly to my van. En route, I tried carefully to stay on the ramp despite a treacherous coating of ice. Right before reaching my van's slightly less slippery metal ramp however, I felt my back wheels start to spin out and slide, in slow-motion into the snow. So much for my attempt to be unneedy, I thought as Kelly struggled to push my almost 400 pound wheelchair out of the snow and onto the sidewalk with one hand (her second superhuman feat in a 10 minute span). Once safely in the car we proceeded to the hospital's emergency room to begin our Friday evening of waiting. Hopefully, I suggested, we might still make it to the Cornell hockey game at 7:30.

Sitting in the waiting room I felt the subtle but insistent need to pee. As I'm sure I once mentioned in an earlier blog, I do not pee like a normal person. I had a fancy surgery in 2010 that used my appendix as a conduit between my bladder and my belly button and now I can catheterize through my belly button whenever I have to pee (Information here: Mitrofanoff_appendicovesicostomy). Unfortunately though, without functioning hands, someone else needs to set everything up and with Kelly's hand still bleeding profusely I did not want that someone to be Kelly. So I pushed the urge to the back of my head and decided to wait until we were finally out of the hospital's lobby and in an actual treatment room. Of course, once that happened I was more focused on whether or not Kelly needed stitches or had any broken hand bones and completely forgot about my need to pee. As it turned out, ignoring the urge was easy to do because unbeknownst to me, my belly button had taken matters into its own hands and leaked all over the waistband of my jeans, my tank top, my sweater and even my scarf. My entire torso was soaked in urine.

I cannot emphasize enough how angry I was with myself (I should have known by now not to hold it) and with my body (my belly button is supposed to function as a continent stoma, not as an incontinent stoma).  Despite my protests, Kelly insisted on changing me out of my saturated sweater in the small treatment room while we waited for a radiology technician. Her intentions were good, she wanted me out of my urine soaked clothes, but pulling the sweater over my head while I was holding a rapidly filling urinal proved disastrous. When she leaned me forward I proceeded to dump the entire half full urinal all over the floor of the hospital room. At precisely that moment, as I sat in a pool of my own pee, wearing only a bra and urine soaked jeans, the male radiology technician entered the room to escort Kelly to her x-ray. Awkwardly, he glanced between Kelly and me, nervously checked his clipboard and mumbled, "Umm, let me give you guys a minute." My brain was somehow able to bypass embarrassment and go straight to guilt.

I felt like typhoid Mary. Unknowingly destroying everything in my wake – first with my dog, then with my wheelchair and finally with my bladder.
Clearly we never made the hockey game.

Thankfully Kelly suffered no broken bones and avoided an infection.

Izzy was quarantined for 10 days by the Ithaca health department. Rabies–free, it was unofficially concluded that she is a psychopath.

Izzy will likely never again spend time with her little brother unmuzzled.

Truman will likely never again be able to relax or enjoy his life with Izzy in the vicinity.  Muzzled or not.

Considering the size of my dog, I realize that things could have been much worse. But I am left with one vital question: how can I properly protect and take care of the person I love? Thinking back to the blog I wrote months before embarking on my first serious relationship in over a decade, I wonder if my decision to be someone's partner was fair. Kelly once told me that people make decisions out of fear or out of love and that I should always choose love. I did. And I would do it again. But when Kelly is heaving my wheelchair out of a snow bank with one hand I cannot help but wonder once again, is my love really enough?



Saturday, March 28, 2015

The first week of spring. Some thoughts.

Even in the absolute best of circumstances, life with this disease would still be incredibly challenging. Let me imagine just for one second what the best of all circumstances might look like: limitless supplies of money, enough caregivers to ensure that no one person ever gets sick of me, a personal chef to deal with the challenges of the Wahl's diet I am on, a housecleaner and a personal assistant. My personal assistant would have one of the worst jobs ever: he or she would manage my finances, schedule my appointments, deal with health insurance and Medicare snafus, run errands, file my paperwork and organize my life in full. Above all, the best of circumstances requires a rock solid emotional support system. Additional perks should include, a fully accessible house (bathroom included), an accessible vehicle and a dog friendly dog. Even then, even if I somehow found myself in a disabled persons utopia, I would still feel like a prisoner in my own body, I would still watch strangers move with a seething and suffocating jealousy and I would still feel a noose tightening around my heart every time I passed the high school track.

And though I have said it before I will say it again: the notion that time heals all wounds is a fallacy. With a progressive disease like mine, time is not a friend. Time enables nothing more than the lesions that currently exist in my brain to cause further, irreparable damage to my nervous system. Time actually depletes my hope because as my level of disability increases I know the chance to reverse the damage decreases. For the past almost 18 years my doctors fought aggressively to stop the progression so that one day, if there ever were a cure, my body would not be too far gone to reap the rewards. Unfortunately though, despite everyone's greatest efforts, no one has ever been able to push a pause button on my progression: not the multitudinous immunomodulating drugs, not the immunosuppressive drugs, not the human immunoglobulin, not the experimental treatments and most definitely not the chemotherapy. My disease is stronger than the strongest of medical treatments, the smartest of doctors, the savviest of acupuncturists and the most stubborn and determined of patients. It is even apparently stronger than God because more people than I can count have been praying for me since the day I was diagnosed.

I have never accepted this disease lying down, I have done every single physical activity that I could with as much vigor as possible from the confines of this body; I taught myself to swim and once I could swim more than 50 meters without fearing I might drown, I taught myself to love it. And now from the uncomfortable seat of my motorized wheelchair, I question almost every single thing that I have done or haven't done along the way: did I drink too much alcohol in college? Did I overdo it in the pool over the years and overheat my body too much? Were my first several years of teaching so stressful that I contributed to my own demise? Did I anger God along the way? Did my body need more sleep than I gave it? Is my faith not strong enough? Did I wait too long to try this crazy diet? Did I give up on one of the experimental drugs too soon? Do I need more human immunoglobulin? Why did I ever try chemo? Should I have stayed on chemo longer? What about physical therapy? I did super intense physical therapy in Baltimore, should I have started that sooner? Should I have fought harder? Did I fight too hard?

I can literally drive myself insane with all of these questions. Especially knowing that I ignored some pretty serious gut feelings along the way. What I've learned however is that a negative gut feeling feels remarkably similar to nerves and what sane person would not fear chemotherapy? Regardless, I had something that I can retrospectively identify as a clear "bad feeling" before I started the chemotherapy, and what did I do? Ignore it. Of course there is no guarantee, I could be worse off right now had I not gotten the chemo or tried the cocktail of pharmaceuticals that my doctor offered me. I might have progressed faster had I not swam a mile a day for years, and who knows what could've happened to me if I worked at a soul sucking desk job instead of as a stressed out but 100% fulfilled teacher. The questioning, the second–guessing and the self blame never end. They. Never. End.

So why did I bring this up? I guess because I just want someone to understand that sometimes it just sucks and there is nothing anyone can do to make it better. Please do not remind me of everything I should be grateful for; please do not tell me that I am loved; do not try to convince me it will be okay; and please, please do not remind me that things could be much worse. I already fear that on a daily basis. Every once in a while I am just sad and I need a little bit of patience. I absolutely appreciate my friends and my support system and my family and the beautiful accessible house I live in. I appreciate my girlfriend and the fact that she has single-handedly infused more hope into my life than I have felt in over a decade. I love the fact that I truly do not feel alone in the struggles against this disease and that I have people on my team willing to help, willing to figure things out, and willing to support me when I am at my worst. Unfortunately however, despite all of this, sometimes I am still sad. Especially when it is beautiful outside and all I want to do is go for a run.


Wednesday, April 30, 2014

Marley and Me

I saw a pulmonologist recently who concluded that my lungs are under inflated. Apparently this is yet another unexpected result of my nervous system forsaking me; I either have a poorly functioning diaphragm or poorly functioning auxiliary muscles that are necessary for respiration. Regardless, it means that I am supposed to reinflate my lungs at least once a day using a fancy version of a BiPAP machine. As there seems to be no convenient time to wear a mask on my face during the day, I try to wear it at night. This is inconvenient on several levels: a) I am a classy wide open mouth breather, so the mask that I am best suited for looks pretty much like a snorkel.  I do not know if you have ever slept with a snorkel on your face, but it is far from what I consider comfortable. b) In order to prevent the air from leaking, the mask needs to be strapped on tightly. Consequently, in addition to causing abrasions and bruising on the bridge of my nose, I am also predisposed to clogged pores resulting in a variety of aesthetically unfortunate blemishes. c) There is no possible way to read while wearing a mask. Although I originally hoped this would not be a problem, as it turns out, it is.

An awful thing happens to me in the middle of the night.  Inevitably I wake up at some point because I cannot move and my legs have spasmed into a position that is causing one or both legs a considerable amount of pain. I generally attempt to activate some sort of intentional movement that might resolve the pain, but more often than not I am forced to wake up my mom. Then, once my mom's sleep has been interrupted and I am fixed, I try to get back to sleep. This is where things get dicey, because if I cannot fall back to sleep within about five minutes I start to think. Generally, when not wearing the mask, I mitigate my thoughts by forcing myself to read. Without this possibility, however, I am left alone with my brain. And at night my brain is a surprisingly in-hospitable place to be.

Let me see, where did my thoughts start the other night? I think it was something along the lines of I will never have the chance to have a crush on anyone or for anyone to have a crush on me ever again. Then I remember how much fun it is to like someone or to feel liked by someone. Then I imagine the idea of living the rest of my life without feeling that type of emotion again.  I end up with such an acute sense of loneliness that breathing, even with my fancy BiPAP machine, gets hard. I reach the conclusion that I can handle one of two things: living the rest of my life with this disease, or living the rest of my life alone. But not both, both is where I draw my metaphorical line.

Then there follows a cascade of thoughts that go downhill from there. I hesitate to articulate how sad it can become. While I once was confident enough to make the first move or even to flirt shamelessly, I am now a bit of an internal disaster. I understand that relationships always necessitate a certain level of risk, but if I venture to admit that I like another person, imagine all the potentially disastrous consequences: the person could rebuff my feelings and I would feel embarrassed and rejected and ridiculous, or even more frightening, the person could reciprocate my feelings. What then? Is it even possible to be someone's partner with essentially zero mobility? I cannot help with yard work, or do the dishes or the laundry. And even more distressingly, I want to be with someone who feels the same level of passion towards life as I once did; as I still do. I wonder though, what good is that passion when I cannot hike or run or do any of the innumerable things that I took completely for granted until I turned 19? I would want my imaginary partner to enjoy these things without me. Is that fair? Is it fair to offer someone long-term companionship without any guarantee of long-term accompaniment? I am 100% confident in my ability to love unconditionally, but at the end of the day is it possible that just my love could actually be enough?

There are an infinite number of thoughts that follow but the gist is that I do not want to be alone. Simultaneously though, how can I imagine someone else being happy with me when I am so, so deeply and profoundly unhappy with myself (or at least the body my self is stuck in)? Add to that the predictable uncertainty of my own future with this disease. I know life does not come with a guarantee and that when someone says, "I do" to his or her partner's better or worse, there is no way to see into the future. Unfortunately though, at this point in my post MS life, I am far too able to imagine what my "worse" might entail. And it frightens me more than anything I can even express. Is it fair then that I ask another person to share this fear with me; that I allow another person to experience a forever after with someone whose forever is so scary?

Amidst all of this pointless worry that bordered on panic, I was able to miraculously fall back to sleep at around 6 AM. Grumpy and overtired I woke up a few hours later with a dried out mouth and a sore nose from my restless night of sleep with the mask. I also had what I would like to characterize as an emotional hangover from binge thinking for so many hours. As with all hangovers, I was significantly unmotivated to get out of bed. Luckily Shelly was with me though, and after I filled her in on my evening of non-slumber, she went into triage mode. We rushed through the dreaded morning duties and headed to the Ithaca Coffee Company for a mint chocolate mocha. Once caffeinated, we followed that up with a trip to the Tompkins County SPCA.

I was hopeful that the cats and dogs would provide an adequate distraction from my mood or, at best, offer some type of mental catharsis.  However, it too had the potential to frustrate me. I enjoy looking at the dogs and cats, but I yearn to pet them and hold them and squat down onto the floor to let them climb all over me. I feared that based on my mood no matter what we planned to do, it would not be tremendously fun. Unfortunately my ideas for fun are rarely in line with my body's abilities.

What happened next was a combination of heartbreaking and divine.  We went to the SPCA and found Marley, a 3 1/2 month old mutt who I immediately fell madly in love with. And rather than shun me or avoid me because of the six scary wheels on my wheelchair, as dogs sometimes do, Marley repeatedly jumped with all four of her gangly puppy legs onto my lap where she would kiss my nose and allow me to – for the first time in longer that I can remember – pet her with my cheek. I never thought I would be in a position to miss something as simple as petting a dog, but I do.  Every single day.  One thing about Izzy that I find strangely comforting is that she doesn't really enjoy being scratched or fawned over. She seems completely content to curl up against my legs at night and to occasionally violently attack me with kisses. I used to wish she was slightly more cuddly, but now it is almost a relief that at least I know I am not missing out on anything my dog particularly enjoys. Still however, I miss the feeling of a dog's soft fur in between my fingers and their silky ears under the palms of my hands.

On a day where it felt like everything I have ever lost was working in unison to chew holes in my heart, Marley reminded me that every once in a while love still trumps pain. It might not take the pain away, but it exists in the face of a type of sadness that every once in a while threatens to swallow me whole. I don't know where I stand on the rest of my life right now, and when I think about the future I am definitely more scared than I am hopeful. But if I can focus on one moment at a time and everything that I have right now, even if everything in that moment is just a dog's fur on my cheek, that might just be enough. Today.

Friday, March 28, 2014

Flying with a Power Chair. Not First-Class.



I recently completed my first intercontinental trip with my power chair, Steven. I was nervous about the trip in the weeks prior and made several phone calls to United Airlines to make sure that all legs of the journey would run smoothly. Before I left I even googled "air travel with a power chair" to see if there were any helpful tips. One of the first tips I found stated this piece of helpful advice: if possible, fly first-class. As that was probably the least helpful tidbit of information I stumbled across, I thought I would document my own experiences so that someone in my same position (unable to afford a first-class ticket) might have more success than I did.

I flew out of Elmira, New York on a plane roughly two times the size of my parents driveway. Despite the size of the plane however, everything went smoothly. We flew from Elmira to Detroit and then eventually (on a significantly larger plane) from Detroit to Sacramento. The trip went so seamlessly in fact that I let my apprehensions about the flights home completely dissipate. That was a mistake.

Flight number one departing Sacramento was on a relatively small jet approximately the size of the school bus. As Shelly and Kelly and I had arrived at the airport three hours prior to our flight we were confident that the United staff knew that we were coming. In no great rush we made our way to the gate, stopping to buy uncomfortable, overpriced neck pillows on the way. Once safely at the gate we waited to pre-board the plane without any concerns. Indeed it was not until the boarding began and we got to the end of the jetway during the boarding process that someone approached me and said: "I am sorry ma'am, but we don't think this plane can accommodate your wheelchair." They asked me to reiterate the specifications of my chair (50 inches tall, 27 inches wide, 360 pounds) and reacted to these numbers with surprise and concern before saying, "There is no way your chair will fit on this plane."

I am well aware that employees of airlines are the recipients of hundreds of people's frustrations and disappointments on a daily basis, so I tried to maintain my composure but found myself a) frustrated, b) embarrassed, c) disgusted and d) annoyed (I know that at least three of those alphabetically listed emotions are redundant).  I calmly explained to the attendant that I had spent probably an hour and a half on the phone with United prior to our trip, and the airline ensured me that Steven could be accommodated on every plane I was ticketed for. (In fact, one woman spoke to me condescendingly saying something along the lines of: "your chair has to fit, it's the law.")  Nonetheless, the attendant helping us expressed her sympathy and politely directed the three of us back through security and to the ticketing counter.

There, the three of us stood around for another hour while a ticketing agent expressed her frustration that there were no other redeye options on United from Sacramento to either Elmira or Syracuse that night. She eventually gave up and turned us over to the US Air people to try to figure out how to get us home.   Finally the US Air attendant found a flight that would get us into Syracuse the following morning at 9:30 AM, a full hour earlier than we were supposed to arrive with our originally booked tickets. It was an incredibly indirect flight, but they at least upgraded our tickets from Sacramento to Phoenix Arizona. I was sad that the flight lasted only two hours because our first-class seats seemed so luxurious (traveling with a disability actually is easier in first-class!) Especially when compared with the seats we ended up in for the second leg of our journey (the longest leg) which took us from Phoenix to Philadelphia.

The most noteworthy part of the second flight took place before the other passengers had even boarded the plane.  The three of us were already snugly and uncomfortably in our seats after pre-boarding, when the airline attendant halted the boarding process so one of us could exit the plane to help move Steven from the jetway into the underbelly of the airplane. Politely, Kelly got up and offered her assistance. Once off the plane, she was greeted by a borderline irate, unkempt looking man with a pseudo-official looking US Air vest. That is when the fight ensued:

Long-haired, pseudo-official looking US Air man: I can't figure out how to get this thing to go.

Kelly: It is in neutral. You will need to push it.

US Air man: What do you mean I have to push it? Do you have any idea how far I need to go?

Kelly: Yes. I am sorry but it needs to be in neutral so you can lock it into place once it is on the plane.  Plus it is challenging to maneuver if you aren't used to it.

US Air man: You don't need to tell me how to do my job.  I spend at least five hours a day playing video games.  I know what I am doing.  I will be fine driving it.

Kelly: I am not trying to tell you how to do your job.  This is a $32,000 wheelchair and my friend's life depends on it, so it needs to be kept in neutral.  I am happy to help you push it up the jetway.

The man seemed to have no problem treating a ticketed passenger with complete disregard.  As Kelly helped the US Air man push the chair up the passenger lined jetway, the snarky interchange continued.

US Air man (redundantly):  This is ridiculous, I don't appreciate you telling me how to do my job.

Kelly (having stopped pushing, looked at the now fully irate man): Listen, we have had a really long day, I am trying to help you and I would appreciate it if you could show us just the smallest bit of kindness.

One of the 700 reasons I love Kelly is because she has a unique ability to maintain patience, decorum and maturity in even the most stressful of circumstances.  Ultimately, these qualities weren't lost on the irate man after all.  Before our flight departed, he sought us out to apologetically inform us that Steven was safely on board.


Suffice to say we departed on time and arrived in Philadelphia five interminable hours later. Our flight from Philadelphia to Syracuse involved a plane roughly the size of a school bus. In fact, it might have been smaller than your average school bus. When we arrived at the gate and I glanced out the window at our next ride I laughed. If they could not accommodate us on the larger plane out of Sacramento, there was no way the little prop jet would suffice. I was certain. And at that point in the journey, I almost was too tired to care. Surprisingly, they proved me wrong. Somehow, someway these three endearingly determined employees got Steven, and even more impressively, me onto the plane. An hour and a half later we were finally back in the Syracuse.


That was a long story so let me clarify a few tips for people traveling in power wheelchairs:
  • Know absolutely everything about your wheelchair.  Know the height, the width, the depth, the weight. Know about your battery. Is it a dry or wet cell battery?  Know how to put your chair in neutral and know how to lock it in place. 

  • Bring a travel companion who is your advocate. I used to travel alone, and was obviously much more functional at that point. If you do have to travel alone, however, practice putting yourself in stressful and exasperating situations while still maintaining your composure and your ability to self advocate. The above is not my strong suit, that is why I no longer travel alone. (Also, I am unable to feed myself, drink or otherwise survive without the help of others.)
  • Call the airline prior to your trip and insist that the specifications of your chair are double checked with every single leg of the upcoming journey. Get the names of the people you talk to. Make sure that the people you talk to document every thing in the computer next to your name so that all the airline personnel know you are coming well before you are scheduled to board.
  • Oh yes, and how could I forget – if possible fly first-class. It is a hell of a lot easier.






Monday, March 24, 2014

No Racing, Plenty of Pain

Imagine my dismay when against all examples of common sense, not just one but multiple people sent me copies of an article in the New York Times last week that profiled an 18-year-old athlete with MS. Apparently, against all odds, the girl was able to continue performing as an elite track runner despite being diagnosed with MS. As anyone who knows me well probably knows, I was once a runner too – albeit not quite so elite. And when I was diagnosed with MS in September 1997 I never ran another step.


The article frustrated me on multiple levels.

1. I feel as though the article lead readers to believe that with hard work and determination MS symptoms can be controlled or overcome. There is no truth to that sentiment whatsoever.

2. The girl in the article is remarkably talented, hard-working and obviously determined. However, she is not suffering from MS. She lives with the diagnosis, and will always carry the fear associated with the disease, but God willing she will continue to avoid suffering the effects of the disease that has the potential to ravage her 18-year-old body.

3. Healthy individuals reading that article are led, in my opinion, to believe that multiple sclerosis is not a disease that warrants donations for research. If I were looking to make a tax –deductible donation to a worthy cause, I would likely not send my money to the MS society (or to even the more worthy MS related causes) because nothing about that article made the disease seem problematic. In fact, there was a time in my running career that I might have read that article and been jealous of the girl because it seemed as though the effects of the disease helped her to run faster.

4. In addition to blatantly misrepresenting the disease, the article left me with what I like to characterize as ugly emotions: anger, jealousy, self-pity and more anger. As I read the hundreds of comments at the end of the article, I was confronted with additional cause for indignation. It seemed that every comment was another MS patient telling another story of athletic triumph. Let me clarify: I want no one to suffer the same disease course as I have. No one. Least of all an 18-year-old track runner. However, as someone who has slowly lost every working appendage to this disease, I was not left with one positive emotion after reading the article.

5. Anger, for me, is probably the least productive emotion I experience. Immediately after reading the 178th comment, I composed a borderline irate email to my doctor communicating a high level of frustration. He is a great doctor, and despite the fact that I have what my friend calls "MS on crack", I genuinely do not question either his level of expertise, his professionalism or his desire to help me. Still, however, who do I blame for the fact that this disease has robbed me of things I never even imagined I would miss? So I asked him, do I even have MS? Why can't anyone stop the progression? Why can't you fix me? Why, why, why!! I also direct quite a bit of anger at a God that I no longer believe has any interest in my health. And jealousy. Man the jealousy… Isn't envy one of the seven deadly sins? How though, how can I not envy those who have the same disease as I do and who, 20 years after being diagnosed, still participate in bike races or run half marathons? How can I not envy people around me who run and walk and stand without so much as a conscious thought? How can I not envy my friends and family members who can scratch their own faces, get on and off toilets without help, get on the floor and play games with adorable small children? I don't know. And sometimes I feel like my anger and jealousy are going to strangle me from within.

I have so, so much to be grateful for. And I am usually able to keep my ugly emotions at bay and maintain my perspective. I am not going to lie though, there remains a general level of sadness in my life that rises to the surface with a much higher frequency than I would prefer, a sadness that I try desperately to ignore. I have so many things to be grateful for in my life: for my friends, for my beyond awesome caregivers, for the beautiful house my parents were able to make completely accessible for me, for my almost perfect dog, and for a self that I genuinely like in spite of the body that I hate. But seriously? If my arm strength ever returns, and I ever put my eyes on the author of that article, she had better duck if she sees me coming.