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?

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 fiancé 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 fiancé 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.

Meg

So, I am on disability and you would think that I would have ample time to sit down, fight with my dictation software and write a freaking blog. In my defense, I have managed to be insanely busy for someone with no job. Mostly boring disease-related appointments, but I am also getting lessons once a week from a grad student in the speech and pathology lab at Ithaca College in hopes that I might eventually master this software. (It is my hopefully not futile attempt to train the dragon, which in my opinion is a pretty stupid name for this voice dictation software.) Excuses aside, I desperately need to write more often. Which is why I would like to publish a goal for myself: I would like to write a blog, long or short, profound or not, at least twice a month. I'd like to say once a week, but I'm being realistic. In my first effort at achieving said goal, I am going to narrow down my previous ambition to write about all of my caregivers, and write about just one for starters: Meg.

I should further preface this blog by saying that the realization that I would need to pay someone in order to survive on my own was not one I reached easily.

It was not shocking to realize that I needed some sort of help. After all, it was very shortly after I was diagnosed that I designated someone to "link" with me if I ever consumed any alcohol or walked far enough to elicit fatigue. And though I found my need to link exceptionally embarrassing at the time, it really was not that big of a deal.  (Especially because, at 19, I was blessed enough to be diagnosed while living with my college roommate—one of my closest friends in the entire world.) However, explaining that I could not walk without holding on to someone is at least somewhat embarrassing, especially because at the time I had no idea how many embarrassing things I would eventually have to request of others.

So the need for a certain amount of caregiving came with the disease, neither of which I much appreciated. At least initially though, the minimal care that I required was the type of care that came built-in with close friendships, and fortunately for me I had a surplus of those.

Fast forward to 2008. I lived alone in a two-bedroom apartment in downtown Baltimore, and although Izzy was an incredibly loyal roommate, she was not much of a therapy dog. Thus, after one too many falls while living alone, I gave up and advertised on craigslist for a roommate. Mine was a tricky craigslist ad because I knew I had the potential to become a complicated roommate. At that time, I was still fully independent but struggling; I could get my wheelchair in and out of my own car, cook my own relatively pathetic dinners, shower without assistance, etc.   Consequently, I settled on a craigslist ad that explained that I had progressive MS, used a wheelchair and would consider a reduction in rent in exchange for help around the apartment and for help with my 65 pound dog. I wrote the ad sometime in early August, posted it and went to the gym. Two hours later I returned home to an email from Meg. The following day she came to see the apartment, liked it, and the rest is history. Little did either of us know that we were about to forge a roommate friendship that neither of us could ever have anticipated. The two of us lived together for three years, and within that time I went from my aforementioned pseudo-independent self to utter and complete dependence on someone else. I suppose, like most things MS related, it progressed somewhat slowly: first I needed help with small things like getting my wheelchair in and out of my car. Then I needed help in the kitchen – especially after swimming. Three years later, however, I could not even shave my own armpits without help. Suffice to say, during this time Meg morphed from a stranger and roommate to a roommate/gourmet chef/caregiver/housekeeper and, above all, a friend.

I had been living with Meg for approximately 4 months when I enjoyed my first somewhat extended stay at Johns Hopkins Hospital. I don't even remember what was wrong with me at the time. What I do remember was Meg visiting me every single day; in fact, there were days that she visited me more than once. And though she was a grad student at Hopkins at the time, her classes were not inside the hospital. Nor was she under any obligation to visit me, bring me home made food and magazines, or graciously share our apartment with my mom and take care of my dog while I was in the hospital.

As one year turned into two years, my friendship with Meg had strengthened, but unfortunately my body had not. The trajectory of my disability had become increasingly steep. And at the risk of divulging entirely too much information, my bladder had quickly usurped my legs as a central stressor in my life. I don't know if this is common to all MS patients, but I had (and still have) what is known as a neurogenic bladder. It seems to me that neurogenic is just a fancy word for fucked up: you have to pee more often then you should, your bladder does not empty itself properly, you have extreme urgency, occasional bladder spasms and you get a higher than average number of urinary tract infections. My bladder was a pain in the ass throughout the entirety of my life with MS, but as my mobility declined, the bladder problems were magnified exponentially. It's hard to have an urgent and spastic bladder when you cannot run to the bathroom. Hopefully you get what I'm saying without further details. Long story short, I consulted with two different urologists in Baltimore and made the difficult decision to go through with a fancy and relatively complex surgery that would enable me to pee out of my belly button.

Shockingly, the surgery did not go 100 percent according to plan. Once again though, Meg was with me throughout. Two days after the surgery, I developed an infection beneath one of the staples. When they removed the staples to treat the infection, the small laceration turned in to a wound that was seriously the most disgusting thing I had ever seen on my own body. When the staple was removed, nothing held my skin together and a small laceration grew first into a dime sized wound and then ultimately into a wound the size of an avocado. And so began the beginning of an entirely new caregiving expectation: wound treatment. (At this point, maybe I should point out that Meg was not in grad school to be a nurse, she wanted to be an epidemiologist – not someone who packed wounds.)

Am I the only person who had no idea what wound care required? I was in the hospital (or one of three hospitals and one nursing home) for more than four weeks and when I got out, the wound was not even close to healed. It needed to be packed with this weird foam material and eventually attached to a wound vac which would suck the gunk out of my wound as I went about my daily business. Add to that, while I waited for my belly button to heal in order to catheterize, I had a suprapubic tube draining my bladder into a large plastic bag. I was quite a vision to behold: a bag of urine attached to the bottom of my wheelchair, a weird metal wound vac attached to the back of my wheelchair, piles of bandages on my stomach and my general sickly appearance (I had lost close to 20 pounds and was disgustingly pale after a month in the hospital). To get back to my point, Meg dealt with all of this on a daily basis: cleaning out my wound, emptying bags of pee, helping me cover the wound in order to shower and all the while cooking dinner, cleaning the apartment, taking care of my dog, and being just generally awesome enough that somehow, despite the fact that I was in a bad, bad place emotionally and physically, I did not wheel myself into the inner harbor.

I actually have no idea how to adequately express my gratitude to this stranger turned friend who I met on craigslist. I have asked myself many times if I would have done what she did. And I honestly cannot answer the question. She drove to Annapolis with her boyfriend to visit me in a nursing home, she spent her labor day night in the Johns Hopkins emergency room with me, she learned how to flush my central line, she cleaned my bathroom, did my laundry, and took my car for oil changes more times than I can even count. Really, were I completely healthy, had I never experienced any of these things firsthand, I do not know if I could have done it.

It was not all rainbows and butterflies I suppose. Meg grew to hate her job in Baltimore, and was never a huge fan of the city itself. Add to that, she met her now fiancé in New York City and was desperate to find a job there. Throughout her almost two-year long-distance relationship, there were months when she was away from Baltimore more often than she was around, which left me in a tricky caregiving predicament. The larger problem, though, was that I could not even conceive that her frustration with Baltimore and her absence on the weekends was not inextricably tied to me (nevermind the fact that she had an adoring boyfriend who lived three hours away). Consequently, I attributed every bad mood, every weekend away and every fit of rage to myself and to my disease.

Meg moved out in July 2011. Luckily, in spite of our nontraditional tenure as roommates, we are somehow still friends. At this point, I am pretty sure that her fits of rage have less to do with me than with her fiery, Irish personality. And, though frustrating to figure out at the time, her frequent absences led me to hire Kristen. And Kristen, who I intend to write about next, was well worth any and all of my frustrations. Two years later, I still need a much more productive way to deal with the sense of guilt that this disease elicits. Overall, however, I cannot fathom a better outcome from a three-sentence craigslist ad.