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.






Sunday, June 02, 2013

On graduation, some thoughts

There are a multitude of bummers associated with this stupid disease. And I suppose, were they all stacked in a row, the one I am about to complain of isn't really in the top 10 but it is weighing heavily on me today: I missed Poly's graduation.  See when you can't do simple things like get yourself on or off a toilet it makes travel difficult; I can't jump in my car and drive down to Baltimore and stay with any of my friends because I don't have any friends in Baltimore whose houses are wheelchair accessible. Oh yeah, and I also can't drive. Add to that I don't have a plethora of people here in Ithaca that were dying to spend a weekend in 95° heat and humidity to watch a bunch of kids graduate on a football field. To be 100% honest, even I didn't really want to spend my Sunday evening in the Baltimore heat and humidity (and thunderstorms) watching kids graduate, but here's the thing: these are not just any kids. These are the kids who, if you have followed this blog, were featured in the story about me falling out of my wheelchair in front of an entire class. They are amazing people – they are smart, they are funny, they are unbelievably compassionate and today (hopefully) they are all high school graduates.

Bernie was in my first period class and in addition to helping me get up off the floor the day that I unceremoniously fell, he also offered me a brownie after I spilled my water on and immediately destroyed my old computer. Joshua had big plans to become a filthy rich entrepreneur. Rebecca helped me record grades and clean up my classroom for the last two years that I taught. She even spent one of her last summer days before her sophomore year helping me set up my classroom before the school year started (I should also note that she shared her animal crackers with me during her lunch periods, and animal crackers I've decided, are a highly undervalued food). Tran, my genius student who managed to score 100% on my world history final illustrated members of our first-period class participating in World War I on my blackboard.  Zhane, who I swear was the loudest 14-year-old I ever met (and that is saying a lot) used to sing songs before 8 o'clock in the morning about "gooses" and seemed impossible to deter despite my obvious irritation with both her decibel level and her inability to correctly pluralize the word goose. I have millions of memories of the class of 2013 and I wish I had time to write down every ridiculous interaction that I had with every student, but I don't. So let me just say that I really wish I could have been there. I miss you all and I hope that each one of you grows into a successful, happy and healthy adult. Keep in touch, and please, for the love of God, will one of you please cure this damn disease?

Saturday, May 11, 2013

Awesomeness. Times two.


Close to a decade ago, I randomly regained contact with Lesley, a college friend from Colgate. We started communicating via email for reasons I can't even remember and managed to become closer than we had probably ever been in college. She told me that she planned on visiting Baltimore during the spring–time with her fiancĂ© and we decided to meet up. Over that weekend, in addition to hanging out in Baltimore, we also ventured to DC to meet up with her best friend from high school, Elizabeth. Although I don't honestly remember a lot of the details from the weekend, I do remember staying in the Four Seasons Hotel with Lesley and her fiancĂ© and I do remember meeting Elizabeth. Immediately I got the sense that she was my kind of people, and after meeting for one evening in the bar of the hotel, we managed to strike up a lasting friendship.

For the next several years, I would occasionally visit her in DC, and once I could no longer drive she would come up to Baltimore. Elizabeth was someone I felt immediately close to, like I could confide in her without fear of judgment. When we first met, I was in the process of weaning off an anti-anxiety medication that I had taken (in my opinion unnecessarily) for two years, and I felt vaguely like I was coming unglued. Despite the fact that I shared the details of my personal mental crisis with essentially no one, I felt comfortable talking to Liz.

Five years later, I was finally off the drug and felt significantly less crazy but was – as is a theme in my life – significantly more disabled. She came up to Baltimore a few weeks after I had gotten out of the hospital post belly button surgery. At that point, Meg was still my roommate but spent many of her weekends in New York City. I remember confiding in Elizabeth that I did not know if I would be able to teach the upcoming school year without having someone around to get me out of pickles on the weekends. I was afraid it was time to retire from teaching, and I absolutely was not prepared for that. Liz seemed positive that all I needed to do was hire someone to help me out on the weekends. Her assertion that the solution was so simple blew my mind; I can honestly say that no matter how obvious it seemed I had never seriously considered paying someone explicitly to help me get in and out of bed, or in and out of the shower. In fact, I had never even considered that people existed who would want such a job. Liz told me about care.com and when I informed her that I had zero money for an additional expenditure, she convinced me to start fundraising. I had raised money for my neurologist's quest to cure this disease, but I couldn't quite wrap my head around the idea of fundraising for myself. It was Liz, in fact, who helped me put a donation button on my blog and helped me brainstorm ways to raise enough money to pay someone more than minimum wage for five, then 10 then upwards of 40 hours a week. (The fact that insurance contributes nothing towards personal caregiving costs still astounds me.)  So basically, it is all because of Liz that I was able to teach for my final two years while paying for essentially full time help. I need to remember things like that when I am entrenched in a cycle of negative thoughts: I have fabulous people in my life.

Fast-forward a week or two, the donation button was on my blog, I had written what I considered an embarrassing "plea for help", and I had posted an ad on care.com searching for a part time caregiver to help on the weekends. Almost immediately after posting the ad, I received an email from Kristen. In her email, she was honest to a fault, and told me she had no experience with adults with disabilities before, but something about my ad compelled her to write to me. She had a picture on her care.com profile that practically made me sick to my stomach: she was so pretty. And I thought she was way too skinny to be able to move me around or transfer me without injuring herself. Nonetheless, I invited her over to meet. If possible, she was even prettier in real life, but she also was so earnest and authentic and seemed so genuinely excited to work with me that I knew I needed to give her a chance. When I expressed doubt that she would be strong enough to transfer me, she held up her skinny little arms and said, don't let my size fool you, I am freakishly strong. Over the next 2+ years, she proved herself right.

Kristen, for as many hours as I saw her a week, is one of the few people who, to date, has never once disappointed me. She was never even late. Seriously, not once. And for an entire semester, she showed up to get me ready for school at 6 AM. She helped me get dressed, made me breakfast, packed my lunch for school and helped me get into my car. After school she met me at Kennedy Krieger twice a week for "open gym" – – Kennedy Krieger is Baltimore's International Center for Spinal Cord Injury, and for a pretty meager fee, during the months when I was not in active therapy, they let me use their equipment any time I was able. I was fortunate enough to get physical therapy at Kennedy Krieger for almost 5 years and there is not enough room in this story to explain how extraordinarily lucky I was to live in a city with access not only to great health care, but with access to a place like Kennedy Krieger. The therapists there, who I am certain could not possibly be paid well enough, literally changed my life (and I am sure the lives of countless other spinal cord injury/neurological disease patients who were lucky enough to get therapy there).  Every physical therapist who worked with me and my egregious disease, was able to not only push me to attempt countless numbers of exercises – many of which I failed to complete – but to keep me laughing at the same time. They treated me with enough patience and compassion that despite my urge to throw myself on the floor and elapse into a fit of uncontrollable tears, I was able instead to try again. Anyway, I digress. The point of this story is about Kristen. And for two hours after school twice a week, she attached me to an FES bicycle so that I could use my unresponsive muscles in a somewhat functional manner for almost an hour, and once I was finished she would throw me on one of the mats and stretch me until my stiff and spastic legs were temporarily calm and manageable.

In addition to helping me at 6 AM every morning, she also helped me on weekends when Meg was in New York City. At that point I was still independent enough that I could avoid overnight pickles as long as Kristen helped me get into bed in the evening, and out of bed in the mornings. In addition, she made my bed, cleaned my apartment, picked up my dog's poop, did my laundry and made me dinners. The laundry list of things that Kristen helped me with ranged from the most obvious of caregiving essentials to things that I could not even conceive of another person helping me with: shaving my legs and armpits, getting me on and off the toilet, the list seems endless… If civilization is measured by how it treats its weakest members, then I believe that a person's character should be measured the same way. Kristen saw me at my most vulnerable more times than I can count, but a year ago April, when I was headed back to Johns Hopkins for yet another extended visit, I felt perilously close to coming undone.

Kristen and I were scheduled to meet at my apartment after school to go to Kennedy Krieger together, but at some point during the school day I had reached the disheartening conclusion that I needed some type of acute MS treatment that neither Kennedy Krieger nor Baltimore Polytechnic could provide. I talked with my doctor and arranged a 10–day IV steroid treatment in combination with five days of plasmapheresis. Unbelievably, my doctor was able to find me a bed on the neuro floor of Johns Hopkins for that night. I explained this decision to Kristen after school, and she immediately changed gears from therapy Kristen to compassionate Kristen. She helped me pack a suitcase for what I presumed would be at least a 10–day stay in the hospital, helped me take a shower in preparation for my 10 day stint with no proper shower, and then – after feeding me dinner – she even agreed to drive me to the hospital.  Once at the hospital she brought me in to the waiting room and though I begged her to go home, she refused. I swore to her that I would be fine, and that someone would help me get my suitcase up to my hospital room, and that it was completely unnecessary for her to stay; especially because it was already after nine and she had class early the next morning. She would hear none of my reasoning, and replied that she would not leave me alone merely because had she been in the same circumstance she would not want to be left alone. No matter what I said, she would not abandon me.

I know that her line of reasoning was merely the Golden Rule: treat others as you wish to be treated.  But the golden rule is much easier to apply when circumstances are convenient, and essentially nothing regarding me is ever convenient. Plus, how can one really treat me as they would like to be treated when mine are an almost impossible pair of shoes to imagine being in? Kristen's most unique trait then was her uncanny ability to live empathy. She didn't just act empathetic, she lived it.

Kristen and I have remained in touch since I moved back to Ithaca, and has even come to visit me twice. But this past fall, when her potential employer called me for a job reference, it was literally impossible for me to express her awesomeness without tearing up on the phone. Meg used to talk about wishing we could have certain people in our pockets to either calm us down or keep us happy at all times. If I could have someone in my pocket it would be Kristen, but I suppose I would feel guilty keeping all that goodness just to myself.