Health, Interrupted

On graduation, some thoughts

2013-06-02T20:14:00.000-07:00

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.

2013-05-11T20:11:00.000-07:00

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

2013-04-27T19:19:00.002-07:00

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 paysomeone 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 notinextricably 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.

April

2012-11-15T15:02:00.002-08:00

It has been an inexcusably long time, but naturally I have what qualifies as an awesome excuse: my Dragon makes me want to kill myself. And though there is a slight amount of hyperbole in that last sentence, it is just that—slight. Of course, for the last 11 months I have had thoughts and stories and ideas running through my head just waiting for the opportunity to appear on a piece of paper. Now I'm finally sitting down, determined to persevere through whatever temper tantrums my Dragon might unleash, but my brain is sort of an amalgamation of all of these unwritten stories that now threaten to come out in a literary equivalent of diarrhea. Please be prepared.

I'm going to try as hard as humanly possible to focus the rest of this blog on last April. It was kind of a bummer of a month. That actually might be an understatement, but I suppose it led me to a sort of tipping point. And from the vantage point of where I’m sitting right now, I definitely think it deserves a little bit of attention.

I guess the entire month was not a bummer; after all it started with spring break. And despite the 500 million reasons why I should not have traveled, I did it anyway and am so glad I did. I decided to take my “little sister” out to Seattle to visit my friends who are very much her friends as well. People reading this blog might think to themselves: “wait, she has a sister?” The answer is yes. Her name is Shanika and she is pretty much the baddest ass little sister any girl could hope for. We trekked out to Seattle together and despite the fact that she is my “little sister”, she took care of me in the airport better than I ever could have imagined. See, I get really flustered when I fly, and not for typical “I’m scared of flying” reasons. It’s all health-related. Logistics like negotiating airports are sort of daunting to deal with when you have essentially 0 functioning limbs. So, my advice to you: if you happen to have 0 functioning limbs, invite Shanika; she is surprisingly adept at logistics. You know how in the airlines you have to have your ID and your boarding pass with you at 8 different checkpoints? Well, since I can't do simple things like unzip my purse anymore, I leave my ID and boarding pass on my lap. The problem with this is that when I’m wheeling around, things like an ID and boarding pass don't always remain in my lap. So, on this trip, I arrived at a new desk, someone asked me for my required information, and I couldn’t to find it. Just as I felt beads of sweat forming on my forehead, and felt the sense of panic move from my stomach towards my esophagus, Shanika held up my ID and boarding pass, showed it to the requisite people, and said something nonchalant like, “I got you dude.” It was like having my mom with me except Shanika is 13 years younger than I am and completely unflappable. She also did things like take off and put on my shoes as we went through security, help me eat (that too is now something I am unable to do on my own), and lug around my giant orange backpack. I told you, she is pretty badass. All of this is to say that Seattle was beautiful, and Shanika is beautiful, and the beginning of April was awesome.

Then I got back to Baltimore. The following weekend I had an appointment for a second opinion with a highly reputed neurologist in Manhattan. A second opinion was not to decide whether in fact I have M.S.; rather, to decide whether to keep taking chemo once a month or to throw in the towel. Shockingly, he agreed that the chemo was not helping and suggested I try something short term and acute. Unfortunately, I think I had already decided that on my own and probably could have avoided an expensive weekend in New York and a–no exaggeration–5 hour doctor’s appointment. Too late now, and it was a surprisingly fun weekend in spite of the circumstances. I returned from Manhattan late on Sunday and went to work on Monday as planned. Somehow during the day, though, I reached the somewhat sickening conclusion that my short term and acute treatment needed to happen sooner rather than later. I e-mailed my neurologist (rather, I asked my friend Bobby to type an e-mail to him for me) and said the following: “I have gotten a lot worse lately. I went to New York for my second opinion last Friday and the doctor suggested we treat my new symptoms quickly and aggressively. I agree. If this necessitates being admitted to Hopkins I am willing. Please let me know what you think.” Maybe it was just a sentence, “I am willing to be admitted,” or maybe it was the fact that another pair of eyes agreed that I was a neurological disaster, but suddenly there was a room available in the neurology wing at Hopkins and I was to be admitted later that evening. When I got the news, I only had two classes left for the day, so I explained to my remaining students that I would be in absentia for a few days and would most likely be back the following week. Little did I know that I would not be back for much, much longer than one week.

My hospital stay was–unsurprisingly–awful. Within 12 days I had a two-hour brain and spine MRI, 10 days of IV steroids, and five plasma exchanges. It was intense. And sometime in between my first dose of steroids and the placement of my central line, I reached another sickening conclusion: I would not be able to finish the school year. All of my sick days had been used up by October, meaning that every day I remained in the hospital was another day without pay. And as each day passed in the hospital, I became increasingly aware that nothing M.S.-related improved; in fact a number of things that were originally not a problem became problematic as the days in the hospital passed. It was time. Actually, it was way past time to apply for disability.

Although I honestly hope that no one who reads this blog is stricken with this godforsaken disease, I do hope that someone out there has experienced steroids. Steroids make me crazy, and I know I am not alone. I am trying to think of the best way to explain steroids to a healthy person… Imagine being stuck in a car with no air-conditioning in New York City traffic in mid July. Imagine that you are late. And you just remembered that you left your cell phone in your office 26 blocks back. You don’t have time to go back for your phone, but without your phone you don't have directions to where you are heading. Maybe your cat died earlier that morning and you haven't eaten since the previous day and you have a headache and you were reprimanded by your boss for being late to work. So all of this is happening at the same time and you want to scream, run yourself over with your car, karate kick your boss in the head, eat an entire bag of fun size Twix bars, and rear end the BMW in front of you. That's pretty much how I feel when I'm on IV steroids, except I can't move. And I can't eat Twix bars because the steroids elevate my blood sugar. So instead I imagine things like stabbing the phlebotomist with her needle, ripping out my IV catheter and shoving all of my shitty hospital breakfasts up the attending’s asshole. In retrospect, it's probably a good thing I can't move while on IV steroids.

So this is the state of mind I was in when I realized it was time to apply for disability. And I realize now in retrospect that I should have waited until the steroids were finished pulsing through my blood stream—or better yet I should have thought about this before I even started the steroids. But I didn't. So I spent a few nights in the hospital staring at my computer screen while using my left, somewhat functional thumb to browse the internet for instruction about how to apply for Social Security disability and how it relates to potential entitlements under my Baltimore City Schools contract. And here is what I do not understand: I am a smart person—I graduated Phi Beta freaking Kappa, and got my Masters from Hopkins—but I could not for the life of me figure out how to file for disability. It is almost embarrassing. First I had to figure out how to retire from the school system, and just thinking about leaving my school and my kids literally made me sick to my stomach. This was not just quitting a regular job, people; this was quitting something I had allowed to usurp my identity. Without a job I would never be able to afford Baltimore and would just have to move home with my parents. What would I do about my furniture? Who would help me move? Would I be allowed to break my lease early? Where would I find new caregivers? How could I afford new caregivers? The more I thought, the more questions I stumbled upon. And the more questions I stumbled upon, the more I wanted to find a way to get into my hospital room’s bathroom and flush myself down the toilet. But as I explained before, I couldn't move.

Probably the most significant thing that happened the more I thought was that I became insanely angry. And no one in the immediate vicinity was immune to this anger—not the doctors, not the phlebotomists, and most definitely not my poor mother.

Fast forward 12 days. I was finally out of the hospital, and though I had partially completed my online application for federal disability, the next step was even more depressing: I had to tell my department head that I would most likely not be back for the remainder of the year. Shockingly, he did not care. We were off the phone within five minutes and never once did he inquire as to how I was. Two weeks later he called me back while I was in Mercy hospital picking up another prescription. The phone call went like this (and though everyone knows I am a fan of hyperbole, the following conversation took place verbatim. No exaggeration.):

Me: Hello Joel. (His name is not Joel, but I think you are supposed to protect the identity of complete assholes on the Internet.)

Joel: Kate, I am going to need to get your letter of resignation as soon as possible so that I can move forward with the hiring procedure for your replacement.

Me: (did those words seriously just come out of his mouth?) I am in the hospital right now, but will come in and talk to Ms. Holley early next week. (I have not changed Ms. Holley’s name, as she, unlike “Joel,” is not an asshole.)

Joel: Sounds good.

I hung up. There is clearly no love lost between us since I have been gone. And the way I understood it, he had my replacement hired before the end of the school year. To clarify something, before you rush to judgment about “Joel”, I honestly don't think he hated me per se; I just think he saw me as the weak link in our department. And not for any professional or academic reason, but because I was in a wheelchair, had an incurable progressive disease, and did not have a penis.

From the position of where I sit right now, “Joel” is the only thing I do not miss about my job.

I did go in the following week and begrudgingly hand Ms. Holley my letter of resignation. I also went in every day that I wasn't feeling awful to see my kids and to help them review for their final exam. My kids definitely got the fuzzy end of the lollipop this school year, which is the sole reason I feel even a twinge of guilt for attempting to remain in the classroom these past semesters. But I think, I honestly think, they knew I loved them. And in between chemo treatments I also think I taught them how to write.

So that was April. It started on a high note, and ended on a low. I obviously figured out all the disability/resignation/moving home questions. And though there are still many stories cluttering my brain space, I think I will save them for another day. To end this blog, here is the goodbye letter that I wrote to my students. I meant every word.

Dear Poly family:

The day before I was diagnosed with multiple sclerosis I wrote myself a letter that essentially said, no matter what happens in the doctors office tomorrow you must never give up on yourself. If you cannot run anymore, you will bike, and if you cannot bike anymore you will learn to swim, and if––Lord forbid--you cannot swim anymore, you will find another way to keep your heart full. And though on that particular day in 1997 I could not have possibly imagined all of the things I would lose, I could also not have imagined all the ways I would still manage to keep my heart full. Never has my heart felt as good as it did while I was teaching. There have been several ups and downs, but overall I think it is impossible for someone to love a job more than I have loved teaching at Poly.

So without getting too preachy, here is a list of things I have learned from y'all, and things I hope you remember.

1. As quoted in the documentary Ghosts of Rwanda, within each person there is an immense capacity for goodness and for evil. We all have a responsibility to choose goodness.

2. Always do what you can with what you have. It is more than you realize.

3. Something happens between the ages of 18 and real world adulthood. Kids have a really bad reputation these days, but what I have seen at this school proves otherwise. When I was still able to drive and I would park in the handicapped spot in the parking lot, with the exception of one staff member, no adult ever offered me help getting into the building. Without fail, every single morning one or more students offered me assistance. Now it is possible that students were looking for a legitimate excuse to be late whereas the staff members were more scared of being late, but I still think it's reflective of the selflessness and overall goodness of the students in this building. Do not ever let your spirit of generosity be eaten away by adult responsibility. Seriously.

4. Please remember that there is more to learning than what is in your textbooks. Textbooks are a compilation of information that people – mostly old white people – have decided you should know. Such information must be learned, and often times must be challenged, and you have an obvious responsibility to actually read your textbooks, but please remember there are always 2 sides to every story. It is your responsibility as a student and as a member of this occasionally biased society to find the truth.

5. Please remember to take yourselves less seriously. The only flaw I have seen in the students in this school is that y'all are too quick to anger. Granted it has been years since I had a fight in my classroom, but I have literally had two students suspended over a game of Pictionary. I also had a student suspended for failure to move her seat. This is ridiculous. Can anything really be that big of a deal? When you are old as dirt (like myself), I guarantee you that you will never be able to remember any of the things that make you lose your mind right now. Learn to let it go.

6. Please find a way to keep your hearts full. And to believe in yourselves. These are 2 things that only you can do.

Please understand that my decision to leave teaching has nothing, nothing to do with my desire to leave teaching. Or my desire to leave Poly. And I invite any or all of you to friend me on Facebook (Kate Hooks) or to follow my blog at www.katehooks.blogspot.com. Thank you all for keeping my heart full for 6 awesome years. There are no words for how much you will all be missed.

With love,

Ms. Hooks

From right to left: Shanika (my badass sister), Taylor (being attacked by a grizzly) and me, April 2012

An Update...

2011-12-25T21:06:00.000-08:00

At the fundraiser

Trying hard to function in spite of my foul mood, I took Izzy to Whole Foods this morning. I was hungry and she needed a walk. The place, when I finally arrived, was teeming with people, and it was literally impossible for me to keep myself, and my new mechanical wheelchair out of the way. I unsuccessfully dodged people, and finally ordered my dark chocolate mocha and selected a blueberry scone; a treat for surviving the week. I checked out and brought my food and my coffee outside into the cold December air to eat with my dog. As I shared my scone, strangers walked by and commented on how well behaved she was, as if she had not eaten a cardboard box containing garbage bags just hours earlier. Once the scone was gone (save for the impressive array of crumbs all over my scarf), I returned to the store, threw the garbage out and put my mittens back on. Unfortunately, the latter was easier said than done. My fingers were so immobilized by the cold that they would not cooperate and a task that should have taken one minute took ten. It was then that all of the emotions I had successfully repressed during the week suddenly resurged. I grabbed ahold of my mitten cuff between my teeth and gave one final tug to pull it over my wrist and then discovered a significant number of woolen fuzzies in my mouth. So as I sat there trying to decide between removing my mitten to extract the fuzzies and just dealing with a mouth full of fuzzies, an embarrassing amount of tears squeezed out of my eyes and down my cheeks. I felt on the verge of a proper two-year-old temper tantrum, I CANNOT PUT MY OWN (EXPLETIVE) GLOVES ON! What the hell am I doing here? Feeling my face get hotter and hotter I left the fuzzies in my mouth and returned outside to get my dog.

Once Iz and I were on our way, I tried really hard to categorize the myriad of frustrations behind my tears. They were as follows:

My friend Lena organized a beautiful fundraiser for me on Wednesday of this past week. It was amazing. Within one week she managed to book a venue, find two bands to donate their time, convince the bar to donate 15% of their proceeds from the night to me, and invite over 100 people to the benefit. The turnout was particularly impressive, because my caregiving fund is not an official 501(c3), and as such donations are not tax deductible. The fund is a privately managed account that—thus far—has allowed me to maintain my independence, even as my physical needs are ever increasing. The benefit was flawless and Bistro Rx was filled with people who came for no other reason than to support my stubborn refusal to quit my job.
As Iz and I scooted along I realized why, despite the heart-warming amount of people who filled the bar, I still felt defeated. Because even though the place was filled with members of the staff from City College, a school I taught at over six years ago, I was pretty disappointed that only seven people from my current school were in attendance. Seven. It was actually embarrassing. Even worse: not one of those seven people was from my own department. And though an additional five people donated to me in spite of their absence, none of those people were from my department either. I felt, once again, like nothing more than a hassle to my department. It’s frustrating too, because I know that I'm good at what I do. More importantly, I know that it is valuable for my students to see my dedication to them. It’s without question that my work requires a ridiculous amount of effort – and I think they get that. But don't misunderstand me, I don't teach because I want to be some sort of great white hope in a wheelchair, I teach because I love history, I love my students, and I seem to have a gift of making the mundane slightly less boring than your average history teacher. I also firmly believe that education is the key to success in a relatively cruel world; maybe not ultimate success, but the key to the option for success. Lest I bore you as I wax philosophical about education, my confidence in my job makes me even more hurt by my department.
I thought back to our department meeting earlier that week. It started off on the wrong foot, because my department head decided to start the meeting fifteen minutes earlier than his email had stated, but no one bothered to tell me. I teach on the first floor, and the rest of the department is located on the third. You would think that I taught in a different school entirely based on the lack of communication between us. It’s almost as though they are not all able-bodied enough to walk down the two flights of stairs to keep me in the loop. In fact I thought about reminding everyone at the meeting about the fundraiser later that night, but I didn’t feel like dealing with disappointment if they weren’t interested. Besides, everyone had already been invited. So I kept my mouth shut at the meeting and seethed silently when no one showed up.
Another painful memory resurged as Iz and I trekked past the Science Center and passed what seemed like 600 runners. I guess if you have read my previous blogs you understand why passing runners is not my cup of tea to begin with, but on this particular afternoon the runners reminded me of another part of the fundraiser. One of my old City colleagues told me about her neighbor. Apparently the neighbor is in her early 30s and also has MS. She wanted to know if I would be comfortable talking to the girl. I am always a little bit skeptical about plans like this, mainly because I assume that another person with MS who sees me will be scared shitless. I have had a particularly aggressive case of this disease, and am worried that anyone diagnosed with MS will immediately visualize their life in my shoes – and they are not fun shoes to live in. I expressed this fear to my old colleague, and she assured me that her neighbor would not do that. As my colleague explained, the girl was apparently diagnosed in her teens and thus started treatment immediately. Consequently, she is still able to run and do yoga. My colleague never even knew that her neighbor had MS until a recent conversation. I tried really hard to maintain my composure at this point, and said: “Interesting, because I too was diagnosed at 19 and started treatment immediately, but clearly I am not running or doing yoga." Instead I am sitting at my own fundraiser so I can afford to pay people to help me shower in a ridiculous motorized wheelchair.
So, the memory of this conversation, sparked by the runners around me, was reverberating throughout my brain like a racquetball in a racquetball court. The whole thing made me want to punch Jesus in the face. And my doctor too. In no particular order. Seriously? You are telling me that one of these people running on the harbor on this sunny, brisk December day might have had this disease for as long as I have? It made no sense. I have tried everything. So has my doctor. I have literally tried so many medical treatments that my doctor told me that he could write a book about me. And yes, I have tried all types of crazy naturopathic things as well. I have done acupuncture, I have changed my diet, I have tried hypnosis, I have done physical therapy, I have done occupational therapy, I have done Reiki therapy. I gave up alcohol – starting when I was in college – more times than I can count. I have always been physically fit and as active as possible, but it has all been to no avail; shit just keeps getting worse. I started on Copaxone when I was 20. I was on a high dose of Imuran, got steroids every four months, then switched to Betaseron, was put on Cellcept, got monthly infusions of Immunoglobulin, had two doses of plasmaphereses, six months of Tysabri, a blast of Rituximab, tried more Betaseron, some Gylenia, and now I am trying monthly chemotherapy. All throughout there have been brief periods of stability, but a general trend of downhill progression. So yes, I am slightly bitter and not too keen on commiserating with a fellow MS patient who, after 15 years of the disease, is still running and doing yoga.
On this particular day then, I guess I was more sad than usual. But here’s the thing: when I go back to the question, “why am I doing this,” I still see my students. And don’t get me wrong – there are days when I really do want to run a few of them over with my car. But overall, they are pretty freaking amazing. Amazing enough that they make up for a department that sees me as more of an inconvenience than an asset. The day after this fundraiser, in fact, I managed to smash into my desk with my power chair and get the top of my armrest stuck beneath the top drawer. I was humiliated when I hit the desk and even more humiliated when I tried to back up quickly and realized the bottom of the desk was stuck on the armrest. As I backed up thus, the entire desk began a slow motion descent off of the platforms that were placed there to prevent this from happening. On top of the desk was my relatively new MacBook attached to the LCD projector, and every one of the three sets of copies that had been made for all of my 135 students. Too late to prevent the inevitable, as the desk crashed to the floor, rather than point and laugh – as I would have done at 14 years of age – my students got out of their seats to help me. A boy in the back of the room made it to the desk in a split second and managed to catch my laptop seconds before it hit the ground. Meanwhile, all of the other students picked up the binders and all of the pieces of paper that were now lying scattered on the floor. All I could do was sit there: horrified, face flushed, feeling like the temperature of my classroom was well over 100 degrees. I was speechless; mortified at myself and unable to articulate how grateful I was to my kids. Not one of them so much as smirked.

So I guess that is the point of this blog. Despite the fact that this disease sucks, and it took me 20 minutes to put on a pair of mittens in the grocery store, and I cannot run, and I am increasingly hurt by my department, and I spent 45 minutes of a walk with my dog with fuzzies in my mouth – I still genuinely love my job. And until that changes, I am going to continue paying caregivers and searching for a perfect roommate. So if you know of any angel type person who is looking for a roommate in the Baltimore area, and would not mind cooking, cleaning, and helping me with pretty much everything I need to do in my apartment, kindly send her in my direction. I happen to think my dog is awesome enough to make up for all of the help I need, even though she does have a particular affinity for paper products. And if that is not enough, I can also throw in a pretty sweet deal on the rent. If you don’t know of any such angel, then consider making a donation – I am currently paying more for help than I make in a salary. And I am not yet ready to leave all of this behind. Not yet.

(This blog was written thanks only to my friend, Meli. In addition to listening to this rant first-hand, she also typed this entire story based on audio-recordings that I emailed her in paragraph installments. For me, dictation software is more of a catalyst to a meltdown than an instrument for my catharsis. Thank you.)

Attitude Adjustment

2011-07-06T08:36:00.000-07:00

I need one.

It might involve a (temporary?) hiatus from facebook.

There is this ugly emotion that is about to suffocate me. There is a kind reader out there who told me that my spirit was too big to be contained by a wheelchair (that was one of the nicest comments I've ever received, by the way), but I'm getting worried that this ugly emotion is threatening to strangle even my spirit these days. The emotion is jealousy.

There seem to be two themes on Facebook these days: vacation and babies. And in an extreme form of masochism, I cannot stop looking at pictures. The thing that bothers me is that I truly, deeply and honestly am so happy for every one of my friends, but rather than ask questions, I want to lie in my bed, pull the sheets over my head and cry. My friend Molly who graduated from Colgate when I did, just had a baby girl and I swear to God she is the most beautiful girl I've ever seen. My roommate Meg just returned from a 10 day excursion to Alaska, and honestly, in this Baltimore heat and humidity I cannot think of a place I would rather visit. Another girl that I ran track with in high school is gallivanting all over the countryside of Australia. All of this is wonderful of course, but I wonder: do these people truly appreciate what they have? Do any of us truly appreciate what we have before it is gone?

It makes my heart hurt.

So I guess, the whole point of this blog is just to implore you, if you are able to hike, or to climb mountains, or to snorkel with beautiful fish or to make beautiful, perfect children please know how happy I am for you. And please know that I wish I were strong enough to comment on your pictures, or in some cases to even pick up the phone and congratulate you. But I am not. I am too busy sitting in my apartment wishing I were not imprisoned by my own body. Hating myself for being a bad friend. And wishing I had the emotional fortitude to eradicate this heinous emotion that is choking me from the inside out: jealousy.

Shattered

2011-06-27T21:49:00.000-07:00

When I was a kid, my dad used to tell me Bobo and Floppy stories. Bobo was a stuffed teddy bear and Floppy was his more practical, stuffed canine sidekick. I always looked forward to a short goodnight story that included Bobo’s shenanigans and Floppy’s solutions. There must have been a time when both Bobo and Floppy were new, properly stuffed, fuzzy and soft animals, but in my memory they looked much like one of Izzy’s chew toys (except I never ate the stuffing out of my stuffed animals. Though I did, supposedly, chew off Bobo’s nose).

Fast-forward two and a half decades. I spent Monday, Tuesday and Wednesday of this past week at my home-away-from-home, Johns Hopkins Hospital. It was a planned admission and, as such, was only slightly more organized than a late-night trip to the ER. Though I was scheduled for admission at noon there were no rooms available, so I spent five hours in the Clinical Holding Unit before I was finally assigned to Meyer 927A. In Meyer, I paid $10 for access to the room’s 20-year-old TV and settled in for a night of mindless Monday night television. Right as my favorite show started, “transport” showed up to take me for a late-evening, surprise MRI. Not a big deal, I figured I’d actually save a few brain cells by missing the Bachelorette, but I secretly wished I hadn’t wasted my $10 on an evening that would now consist of the inside of a tomb-like tube that sounded like the construction site outside of my apartment.

As soon as they slipped the plastic “cage” over my head to ensure my head remained immobilized, they slid me into the tube where I was initially relieved to find that a mirror above my eyes reflected an image of the other room. And though I was initially comforted to see it, it soon unhinged me in a way I never predicted: above my feet, perched at the foot of the MRI table, was a stuffed teddy bear that looked exactly like Bobo. Agitated as I typically feel before an MRI, I attempted to calm myself down, and pass the time by creating a new Bobo and Floppy story. This was a good idea for about 4.3 seconds. The story involved Bobo inheriting a superpower that enabled him to leave behind all circumstances that made him uncomfortable or scared, and as I was telling myself the story I realized I was telling the story to a small child. Not to just any small child, but to my own small child. All of a sudden, I felt the walls of the MRI close in on me.

As this disease has progressed, I’ve lost things slowly, over the course of almost fourteen years. All of these things have been physical though, and while the disappointment has seemed occasionally oppressive, and has required significant modifications to my lifestyle, it is physical. As limitations accumulate, so do my needs: a person helps me get changed, my wheelchair helps me navigate my apartment, my giant mini-van helps me get to and from school, etc. But the common denominator, as the numerator in the fraction slips closer to one, is who I am – not what I do (or don’t do as the case may be), who I am.

As someone who spends a lot of time in her own head, I know what that means – probably better than I should. I know that at my core I am hopeful. I am hopeful that disease or not, I will share my life with a family. A family that includes children. And since I have no conscious aversion to adoption, when I agreed to try chemotherapy I didn’t give my fertility a second thought. Which is why, when I found myself shallowly gasping for air and swallowing my own tears in the MRI tube as a result of a Bobo and Floppy story, I was – amidst other emotions – confused.

And that was just the beginning. For two straight days I listened to and signed informed consents that consented to – among other things – the possible side effect of sterility. I cried after every signature, but it wasn’t until I was halfway through the chemo that night that I figured out why. This wasn’t physical loss. As such, there was no amount of help that I could enlist to deal with it. This was a loss that reached deeper than I can articulate. Loss is usually characterized by something being taken away, but this loss included addition: it was the addition of a gaping black hole to my already hurting heart. Because suddenly this disease had me in its grasp. It had my hope.

I am sure that I am not the only person in the world who, at one point, is confronted with the realization that there is a major disconnect between the life you want versus the one you have. But last week, in the cold confines of an MRI tube, I sure felt like I was. And Bobo, as unassuming as ever, was impotent to help.

Perspective (?)

2011-04-16T18:32:00.000-07:00

I'm wondering a few things about perspective these days. I understand what it means and I see its value, but to put one's perspective into action? That's a whole different story.

There are people that have it a whole lot worse than I do. I see some of these people at Kennedy Krieger twice a week, and it's gut wrenching; small children with developmental and physical disabilities, a sixteen year old girl who was shot and is now a paraplegic living in a totally inaccessible house in West Baltimore, a great number of my students who have survived a level of loss that I cannot even comprehend, etc. But to be honest, knowledge of all this makes me feel, a) guilty for not fully appreciating what I have (which I acknowledge is a lot), and b) pity, because I assume if I have as much as I do and I'm still this sad, someone else with less support or worse health must be even more sad. Still, though, when it's a beautiful spring day and I'm out and about on my ridiculous scooter, with my even more ridiculous dog, I feel like every single person who runs by me is karate chopping me in the heart. In those instances I have never once stopped and said to myself, self, you could be much worse off: you could have gangrene and be homeless and have the hantavirus. I just remember running, and I remember loving it.

Probably thirteen years ago, I distinctly remember sitting in my dorm room at Colgate, listening to my caustically angelic roommate, Megs, complain about her one pimple that you'd need a microscope to see. I was a few days out of a five-day course of IV steroids, and looked like a before picture for proactive acne solutions. Without thinking, I spoke more sharply than I intended to, "Megs, have you seen my face right now? Jesus." My friend Meli interceded on her behalf, "Kate, imagine for one second that your entire family died. Awful, right? Now imagine, a few years later, Megs' mom dies. Would you tell her to stop crying because your entire family was dead? No, you wouldn't, because it's still a tragedy." Defensively I snapped, "We're talking about zits, Meli, not dead family members." Of course, though, I got what she meant: you can't prorate misery. Point noted.

I've tried to apply that rationale to my life from that point forth. I'm not going to lie, though, when people talk about "hating" their bodies' perceived imperfections, I have to fight the urge to say, stop bitching, you're healthy. But I don't. Because if a friend is upset, a friend is upset, and as a friend -- and I hope to be a good friend -- it is not my job to judge nor to undermine someone's sadness or frustration.

I've come to the conclusion, thus, that perspective in action isn't really feasible; at least not for me. Maybe it's not wholly feasible for any of us, because life isn't easy, and when you're in the throes of it -- whatever it is -- it's almost impossible to not want something you can't have. Unless you're Buddha. (Which I'm not.)

So when it's spring and all I want to do is take a run, I guess it's okay that I still cry.

The bad, the good, and the ridiculous

2011-04-11T19:20:00.000-07:00

The Bad. To get it out of the way...

I had an MRI a few weeks ago. The results could have gone one of two ways: no new activity, or new disease activity. I was hoping for the latter. If the recent worsening were attributed to the preexistent lesions, that would merely indicate that previous lesions were leading to atrophied neural circuits (am sure that last sentence is scientifically wrong, but it sounds better than how I usually characterize progression: "old shit is shriveling up and dying.")
So I laid in the MRI tube for almost two hours while I should have been at school and tried to will an active lesion to appear in my brain.
It worked: I have a brand new active lesion in my left frontal cortex. In the short-term I was psyched: active lesions can be treated, whereas when old shit dies it is dead. End of story. I started five days of IV steroids the following evening and took the next week off from school to rest and recuperate.
Other than the emergence of about 700 new zits and a complete inability to sleep, though, the treatment that I'd mythically touted as potentially helpful didn't do a damn thing. Like nothing. Wait, I'm lying; it suppressed my immune system catalyzing a serious UTI. My arms are still weak, my fingers are clenched when I wake up, and my body yearns to exist in a constant state of rigor mortis. I cannot will my hands to properly hold a tissue up to my nose, and cannot -- for the life of me -- get enough strength behind my lungs to either cough OR to blow my nose. Am trying not to think about any of this, but as I cannot find a way to get away from my own body, distractions are few and far between.
In the meantime, I have never, ever felt so alone in my entire life. I love this city, and my job (obviously). I love my doctor and the proximity of my current apartment to both Johns Hopkins and the amazing physical therapists at Kennedy Krieger. I also love the grittiness of this city; there are no pretenses in Baltimore -- it is what it is. You can go to a fancy restaurant wearing sneakers, you can fall out of a scooter while "walking" your dog and two homeless men will pick you up without asking for money.
But. (Here it is...) I have no emotional support system here. There are days that go by where I have to remind myself to keep breathing, and the only people who seem to notice how sad I am are 14 and 15 years-old. I just got back from a short trip to Seattle, and it dawned on me that I have to fly 2,300 miles to let go of the guilty feeling I get every time I ask someone for help. I can almost feel people wince when I say their names; I imagine them thinking to themselves: Lord, what now? How many Kate-astrophies can she have in a day? I don't feel like that in Seattle (probably because I'm not there often enough to feel as burdensome as I do in Baltimore). I also don't feel like that in my classroom (which is only part of the reason I'm fighting tooth and nail to keep my job).

The good. To remind me that I shouldn't drink Liquid Plumber...

The girl I hired to help me get my pants on in the morning is a Rock Star. She does far more than help me with my pants, obviously. I recently introduced her to a therapist at Kennedy Krieger as my personal savior. Some people have Jesus, and I -- at least while my faith is on (what I hope will be) a temporary hiatus -- have Kristen. Kristen is 27 years-old, 5'8" and maybe 120 pounds soaking wet; I was consequently skeptical of her ability to deal with my surprisingly combative rigor-mortis-esque, more-than-120 pound body. But she has consistently proven me wrong. She transfers me with the ease of a caregiver whose name should be Helga, and helps me with things I didn't even know I needed help with. Quick example before she reads this and immediately demands a raise: when Kristen first started working with me there was a two foot long gaping hole in the drywall in my bathroom. The hole was at knee height directly below the handy grab bar that I use to pull myself up while putting on my pants. For some reason, the only way I can get myself to stand is if I flail my knees into the wall, and push up while my knees are stabilized. The result: bruised knees and a cavernous hole in my bathroom wall. Kristen was appalled. Within a week, she requested I have my landlord patch the wall, and bought a yoga mat in order to fashion a pad for my knees beneath the grab bar. The result: bruise-free knees and a hole-free wall.
Antonisha and Shaun-de'. They are students so it is questionably appropriate to say this, but I love them. In addition to being just generally awesome students, they are exquisite people. They both stay after school with me to make sure I have help into my car at the end of the day. That they sacrifice their afternoons to help me is awesome in and of itself, but in two instances their selflessness had made my heart break open with gratitude that I can barely articulate. Last week third quarter grades were due and I had 9 million things to do. After stupidly agreeing to let a few lazy AP Psych students make up tests that day, I spent all day changing grades, inputting grades, and selecting from one of 12 generic comments in the computerized grading system. Point being, by the time all of my grades were in and I had planned and prepared for the following day, it was ten of seven. Antonisha was still there. I asked her repeatedly to tell me when she had to go, and she continued to assure me she didn't mind waiting. Maybe sitting around school waiting for a teacher doesn't seem like a big deal to you, but as someone who can still vividly remember high school, I can guarantee you there is no amount of money in the world that would have kept me in school with a teacher until seven p.m.
Then there's Shaun-de'. Shaun-de' is on the lacrosse team and had a home game last week. Since Antonisha was absent, Shaun-de' told me to text her when I had to go and she'd leave the game to help me get to my car. Shocked, I said, "Girl, you can't leave a game! I'll find another student, there are 1,400 kids in this school." Shaun-de' replied matter of factly, "Yes I can, Ms. Hooks, I'm Shaun-de'." So I relented and told her I had to leave at 4:15 and that if she was on the bench at that time and could run up to my room, I'd love her help, but that it was not a big deal. 4:15 came, and Shaun-de' didn't, so when Mr. Marinelli offered me help I took it. Ten minutes later, I got a harried voicemail from Shaun-de', apologizing for being five minutes late and promising me she hadn't forgotten me. Once again, I don't think I stopped thinking about myself for long enough in high school to even offer to help an adult get to her car at a certain time, much less leave an athletic competition to follow through with something I said I'd do. Gives the saying, "Kids these days..." a whole new meaning.

And finally, the ridiculous...

Izzy. She is the single most ridiculous dog alive. Last weekend I needed to go to the mall to get my eyebrows waxed. In an effort to kill two birds with one stone, I brought Izzy with me. I didn't even bother putting her therapy dog-in-training vest on since at this point everyone in The Gallery downtown knows her. So I was two seconds away from steering my scooter into the handicapped accessible door I had just opened, when Izzy took off at full tilt in the opposite direction. The leash ripped out of my left hand and I immediately pictured the worst. Most dog owners might envision "the worst" as their dog running into traffic. Not I. I envisioned a small yorkie-poo swallowed whole by my "therapy dog" turned savage beast. I whipped my head around to discover that "the worst" was even worse than I'd imagined: Izzy was after a person. In her defense, he was a large man wearing a winter hat, carrying several bags and running towards me. He was also screaming like a child because he was being viciously pursued by a barking, growling beast. I vaguely remember yelling at him to stop screaming as he sprinted by me into the mall, but before I even got my words together, Izzy -- in hot pursuit -- followed him into the mall. It was only then, as she was immediately surrounded by security guards, that she seemed to realize I was no longer with her. Looking contrite and sweet as ever, she stood in the foyer of the mall, with her leash dangling pathetically on the floor, surrounded by mall security guards, peering through the glass doors at me. Mortified, I futilely willed the concrete sidewalk to open up and swallow me whole, but instead listened as the security guards regaled me for not "muzzling" my dog. It was at that point that I snapped out of speechless humiliation and felt immediately defensive on behalf of Izzy. To be honest, much (most) of her behavior is utterly indefensible, but this? This was almost admirable: she was clearly defending me from what she perceived to be a threatening man. Without thinking I yelled back; something about how she is a "protective" therapy dog, etc. etc. The guards seemed convinced and walked Izzy out of the mall where they handed me the leash and suggested I take her for a walk to "calm her down."
I decided to get my eyebrows waxed the following day...

Horror of Horrors!

2010-11-20T19:56:00.000-08:00

It happened. My personal nightmare.

Some rational adults fear irrational things: bugs, mice, dirt, farting publicly, having spinach stuck in their teeth, contracting rare and incurable diseases, etc. Not I. I was the resident exterminator when I lived in Fells Point; I disposed of dead mice caught on sticky traps, captured giant roaches under pint glasses and threw them out the window of my room, and even talked my old roommate off of the proverbial edge after she discovered a literal mouse house in her purse. (I know what you’re thinking, but we were clean. I promise.) My sole fear is this: falling out of my wheelchair in front of students.

(I have other fears obviously, but that is one that haunts me on a daily basis.)

One might think that falling out of a wheelchair is a nearly impossible feat but I, my friends, have turned it into a somewhat regular part of my repertoire. Let me see…

There was the time that, after one too many cocktails, I let my best friend Meli push me down Rainier Ave. in South Seattle at top speed at two o’clock in the morning. She would sprint until we were moving faster than manual wheelchairs are supposed to move, and then suspend her entire body horizontally in the air by pushing up on my handles while I leaned forward and steered. It was amazing. Amazing until the front wheels of my chair hit a crack in the sidewalk and got stuck. The chair then pitched forward, catapulting Meli over my head into the side of a concrete building and ejecting me onto the sidewalk face first. (We were both inexplicably okay.)

There was also the time that I was on a first date, and the two of us decided to walk from my apartment to Iggie’s Pizza. He was pushing and I was focused more on being cute than on the road in front of us. We reached a particularly unforgiving curb cut, my foot plate jammed into the concrete and I, before even realizing how un-cute it would be, sailed through the air and landed gracelessly on my freshly shaven knees. (He, to his credit, was undeterred.)

It was only recently, however, that I started falling without the assistance of a weathered sidewalk. I attribute this to the post-surgical deterioration of my core, and to my simultaneous stubborn refusal to ask for help. The evening after the first day of school I was getting ready for bed and taking my evening vitamins when I dropped one on the floor. Izzy was eyeing it from my bed, so rather than call Meg for assistance with yet-another inane task, I leaned forward to pick it up. About halfway down, my sock-covered feet slipped behind the footplate, my chair rolled backwards, and I fell on my face. Actually, I fell on my left eyebrow. And rather than land on an object-free piece of carpeted floor, my face landed directly on my surge protector. And though I am used to falling, I am not used to hurting myself. I thus let out a cacophony of expletives, sending my dog flying off of my bed to go get Meg. I turned to remove my head from the surge protector and saw a not insignificant puddle of blood on the carpet next to my face. Much like a toddler who doesn’t cry when she initially falls, but has a meltdown once she sees her knee is bleeding, I—upon seeing the blood—immediately lost it. Bruised knees are one thing, but a busted face on the second day of school is entirely another. At this point, Meg and Izzy were by my side, and Meg (who is not currently a nurse but most definitely should be) went into triage mode. She brought me a wet washcloth, and determined that I might need stitches. After I vehemently refused that option, she finished cleaning my face, threw me into my bed (with another washcloth) and took my car to a 24-hour CVS for butterfly bandages. Forty-five minutes later, bandages in place, I fell soundly asleep while Meg cleaned blood off of my carpet.

Incidentally, though my left temple was bruised the next morning, the bloody incision had scabbed over beautifully and was predominantly masked by my eyebrow. And though every adult in the building inquired as to the origin of my war wound, not one student so much as looked at me funny (most likely because it was only the second day of school). Still though, I was relieved. Explaining that I’d fallen on my face while reaching for a vitamin is a story my self-esteem is not prepared to handle.

Perhaps now you understand my fear of falling out of my wheelchair in front of my students is neither implausible nor irrational.

Friday my morning helper wasn’t in school; I was left to unpack my backpack, grab my laptop, attach the power cord and set up the LCD projector alone. As these are all things I felt relatively capable of doing independently, I didn’t ask anyone for help. Two minutes later, I wished I had. My backpack was on the floor, and as I leaned forward to reach the power cord, my feet slipped behind the footplate, the chair rolled backwards, and within an instant, I was on my face. In front of twenty-eight ninth graders. In addition to the two four-letter words that slipped out of my mouth on my way to the ground, within seconds I also contemplated feigning my own death so as to avoid the fall-out of my public descent.

I opened my eyes.

Every student in the class was huddled around me asking if I was okay. Two boys asked what they could do. I asked Larry to set the brakes and moments later he and Sekou picked me up effortlessly and put me back in my chair. My kids went back to their seats and I waved air towards my face attempting to return it to its original – less fuchsia – hue. It was then that I realized the most remarkable thing about my fall: no one had laughed. Not one goofy ninth grader.

And even more astounding, they didn’t tell my other classes. By 3:05 not one student had so much as implied that he’d heard about it.

(If you don’t find that amazing, you do not know fourteen and fifteen year-olds very well.)

So it happened. My number one fear. And I’m still here to tell about it.

Benefit Happy Hour this Friday!

2010-10-31T16:29:00.000-07:00

Everyone is invited :)

http://www.facebook.com/?sk=messages#!/event.php?eid=113364875394819

Thank you is an understatement too...

2010-10-31T15:44:00.000-07:00

Monday was a hard, hard day. I had my first physical therapy appointment since my surgery, and spent two hours completing a humbling reevaluation. Without burdening you with two-hour’s worth of PT-related whining, the entirety of the appointment can be summed up as follows:

Therapist: Okay Kate, now try to kick your heel back towards your butt.

Me: (lying on my side on the elevated mat, teeth gritted, brow furrowed) Is it moving?

Therapist: No. But it says here you were able to do it last time.

Defeated is an understatement.

Two days later, I pulled into my parking spot at school to find Destiny about to head inside. As I opened the side door of my van, she stuck her head in and with the most ridiculous-sounding voice I’ve ever heard, said “Hi Ms. Hooks, I lost my voice.”

Though I’d be lying if I said I remembered what Minnie Mouse’s voice sounded like, I’m pretty sure that Destiny’s voice was slightly squeakier and considerably higher pitched.

“What’s up Kiddo? You sound ridiculous¸ but I’m so glad you’re here!”

I backed up the driver’s seat and lined it up with my chair, took a deep breath and transferred horizontally into the chair. Or should say I attempted to transfer into my chair. As soon as I initiated my muscles, they decided to put my body into its new favorite “plank” position. My butt was half-way on the chair, my legs extended straight into the passenger seat and my back pushed against the back of the chair so hard that the chair actually tipped over backwards and I was stuck at a 45 degree angle unable to move.

Destiny asked the obvious, “Ummm, what do we do now?”

That’s when Antonio walked by and peered in.

“Antonio, come help!”

Between the two of them, Destiny managed to get my legs out from under the passenger seat, and Antonio – using all of his might – pushed me forward enough that my trunk finally bent. By that point, Michael was standing outside of my car asking how he could help too. Both of my shoes had fallen off, but once I was securely in the chair, shoes were no longer a high priority. Antonio pushed me out of the van, handed me off to Michael and the four of us trekked into school through the rain. Once in the building, the new administrator asked how I was,

“Better now, it just took three kids to get me in here!”

She laughed. I think she thought I was kidding.

Once inside, though, I attempted to leave my mortification and frustration in the van and spent the next eight hours trying to make the unification of feudal Japan interesting to 9^th graders. At the end of seventh period, I rolled down the hall towards the bathroom, and caught up to a student I taught three years ago. Right before he made a right hand turn into his English class, I thwacked him in the back of the knee,

“What’s going on, Miles Green?”

Pants hanging down beneath his butt, with twisties in his hair and gold fronts on his teeth, he turned around and caught me off guard,

“Ms. Hooks. Hey I wanted to tell you, you ain’t gotta worry about that money stuff no more, we got you.”

I literally had no clue what he was talking about. Apparently my face registered confusion.

“Ms. Belleville told us what’s going on. You ain’t gotta worry, Ms. Hooks, seriously. We got you.”

“Well Miles, I appreciate that, but I hate needing all this help from people.”

“Nah, nah, Ms. Hooks, that’s just it, you gotta learn to swallow your pride and take our help. That’s what you gotta get, we want to help you.”

“Okay, Miles. I get it.”

“Seriously, lose your pride. We got you.”

He disappeared into English class, and I continued towards the bathroom. The kid gave me chills.

Afterwards, I went back to my room to pack up my stuff and finish up some work. Mr. Marinelli, the Science Department Head walked in to my room, sat down next to me and proceeded to explain a Causes page he set up on facebook called “Running for Kate’s Care”. Apparently he started running recently, has signed up for a number of races, and is asking for pledges in honor of my care giving expenses. Two parts of this conversation struck me as absurd: 1. He prefaced the story with, “I did something last night and really hope you won’t be mad.” 2. Marinelli doesn’t run. At least that I knew of. The last time we talked about aerobic exercise he told me he walked and that he didn’t enjoy running. So I was shocked. On a number of levels. And I am so rife with guilt and self-doubt and perpetual frustration that I struggled to respond.

“Thank you.”

He doesn’t need to hear about the panic attacks that wake me up at 4 am almost every night where I start to imagine my life without Meg and the millions of impossibilities that I cannot conceive of conquering without her – care giver or not.

Marinelli left, and almost immediately the bell rang signaling the end of the school day. Within seconds, Jasmine (see my “Little Homie” story below) walked into my room and reminded me that we had to leave immediately so she could get a ride with her friend’s mom. As Jasmine is, at this point, the only person at school who is able (and willing) to physically lift me out of my wheelchair and heave me into my driver’s seat, I am tied to her schedule. After she heaved me into my seat, she backsdown the ramp and says this,

“Last period, Ms. Hooks, I was thinking about how much I love you and I decided that if the school were on fire, and no one had gotten you out, I’d go back into the burning building to find you.”

“Really, Jas, but what if I were in the bathroom? I know how much you hate bathrooms...”

“Ms. Hooks, of course I’d rescue you from the bathroom. I already did that once, remember?”

So I can’t kick my butt with my heel any more. With either heel in fact. But really, with these people in my life, how lucky am I?

Sitting, Waiting, Wishing...

2010-10-09T21:38:00.000-07:00

Title compliments of Jack Johnson. And though his song has nothing to do with my particular circumstance, I cannot help but get those lyrics in my head on a more-than-daily basis. I’m still sitting, obviously. But as the days go on, I’m losing patience rapidly. You know that ants-in-the pants feeling you get after a long flight or car ride when you just want to move your legs? I have that feeling all day long. Every day.

Waiting. I am desperately trying to hold onto a semblance of hope that this will get better, but in the near-term, the list of things I wait for is ridiculous. It starts at 6:00 a.m. when my obnoxious alarm wakes me up with a jolt. Some people hit snooze a few times and fall back to sleep for an additional ten minutes, and honestly there are days when I try. But the alarm sends me into a near panic-attack every morning, because the next hour and a half is debatably the most stressful part of my entire day (which says a lot considering I’m a teacher). I start waiting for Meg. Once the NPR announcer says it's 6:15, my stress level elevates and I start to worry about the list of things I need cooperative legs to do in order to get to school on time. Usually Meg saunters in around that time to help me get out of bed, but we don’t speak – there is an unwritten code of silence between the two of us until she’s had her coffee. When I finally arrive at school, I also wait (although generally my new helper, Rebecca, beats me to school). She helps me transfer from the driver’s seat to my chair, and pushes me into the building towards the main office. I sign in, she gets my mail out of my mailbox, and we head towards my room. Though at this point it has been less than two hours since my alarm went off, my level of exhaustion and stress convince me it’s late afternoon.

Once the bell rings, though, there is no more waiting. The time between 8:15 and 3:05 flies by and there is never enough time within a 47 minute class period to accomplish everything I intend to accomplish. Every day I want to be a better teacher than I was the day prior; at this point my job is my top priority and, as such, my students truly get the best part of who I am. They get my drive, my patience, my enthusiasm and my confidence, and at the end of the day this passion is almost immediately replaced by fear, self-doubt and frustration. They also get every iota of energy I have, and possibly even some that I don’t. That means that at the end of the day – in addition to my aforementioned grumpiness – I am also physically drained. Thus, the foray into patience-cultivation resumes.

I wait for Destiny (another new helper) to straighten my desks, and for Jasmine (referenced in my “Little Homie” story below.) and Antonisha to eventually bring me back out to my car. There, Jasmine actually picks my entire 5’10” frame up off of my wheelchair and heaves me into the driver’s seat as if I’m a toddler. Then I often head towards Hopkins to pick Meg up from work (where I generally wait in the hospital parking lot), or I head directly home. If I’m alone when I get home. I need to wait for someone to spot me during the seat-to-wheelchair transfer (my attempts to do this alone after school have ended in disaster – or near disaster – far too often). As the list of things I cannot do independently grows, the list of things I need to wait for grows conversely – putting pants on, getting on or off the toilet, going anywhere in my car, getting into or out of the shower, changing into pajamas ETC. Since I have zero control over the execution of these tasks, I also have zero control over when any of these things happen.

Which brings me to the last word in Jack Johnson’s aptly titled song, Wishing. But something tells me that one doesn’t require much explanation.

Cankles

2010-09-27T19:09:00.000-07:00

I knew that as soon as school started my writing would fall -- once again -- by the wayside, but I've been having this recurring thought/memory of late, and I desperately need to write. Please forgive my brevity…

My senior year of high school I was lying on my back on my best friend's bed. Her bed was adjacent to the wall, and the window was set about half way between the foot and the head of her ridiculously concaved twin-sized bed. As the two of us talked about something not-particularly-memorable, I lifted my right leg up at a 90 degree angle and rested it between the wall and the window frame. While we chatted, I stared at my leg. At an age when most girls are prone to irrational bouts of self-deprecation in regards to their bodies, I was the rare seventeen year-old who felt almost reverential towards mine. My knobby knees and ugly feet weren’t pretty necessarily, but I felt this almost stifling amount of gratitude for what they did for me. My feet were connected to what – at that point – I defined as The Story of My Life. And as I mindlessly stared at my right leg, I intermittently flexed and relaxed my quad muscles, impressed and grateful for my ability to control just one part of my life.

I think about that day almost every afternoon. When I get home from work and change from a pair of pants into a pair of shorts, I cannot help but look at them. It’s foolish. I experience the same type of internal monologue when I wake up in the middle of the night to pee. It goes like this:

I wonder what time it is?
Don’t look at the clock.
If it’s within an hour of your alarm you will not fall back to sleep.
But what if my alarm isn’t set?

What if I unconsciously turned the alarm off in the middle of the night?

Do not look at the clock. Don’t do it, don’t do it, don’t do it.

I always look.

The same thing happens with my legs, but the internal monologue sounds a little different:

Kate, don’t look at them. Don’t do it. It’ll put you in a bad mood. Seriously. Do. Not. Look.

But what if my ankles are less swollen than usual?

What if I contracted deep vein thrombosis during the day and I could prevent an untimely death by just looking at them?
Wait, can you even see deep vein thrombosis?

Once again, I always look.

But instead of having an anxiety attack on account of another sleepless night, I experience a combination of disgust and sadness that knocks the wind out of me. Now my bony feet are swollen, and my ankles merge into my calves, and though my knees are still knobby and my thighs are still skinny, but there is no longer any functional relationship between my mind and my muscles. The only time I even see my quad muscles flex is when my nerves misfire and my leg kicks out in a decidedly nonfunctional spasm.

A Plea for Help

2010-07-23T13:10:00.000-07:00

I wish to start this blog in the same way my middle school students liked to start their essays: in this blog I am going to tell you why there is a donation button on my blog. And that, my friends, is why I no longer teach middle school.

Please note also, that before I begin I will try as hard as I can to avoid either ranting or indulging in self-pity, but both efforts may very well prove futile.

My current situation:

• I had pretty major surgery on June 17th. And though the entire point of the surgery was to make my life with M.S. more manageable, at this point the opposite has proven true. Make no mistake, things weren’t going swimmingly prior to the surgery, but – when necessary – I could do things like get in bed, transfer into and out of the shower, and put my socks on independently. Now, those things are only possible with the help of my roommate, Meg.

• Problem: Meg is moving to NYC. She wants to move as soon as possible, but has resigned herself to remaining in Baltimore through December at the latest.

• In addition to being one of my favorite people in life, Meg is also my built-in caretaker. I trust her implicitly. Even when I find myself in impossible predicaments, she is able to rescue me. She never, ever lets me fall, and she problem-solves like no one I’ve ever met. She loves to cook, bake and clean, and she can always, always make me laugh. Meg’s only “flaw” is that she refuses to take a compliment, and seems to think I’m joking when I refer to her as superhuman. I, of course, am dead serious.

• When Meg leaves, and when she visits her boyfriend in New York on the weekends, I am left with a few options: 1. Enlist the help of friends, 2. Move home imminently and give up on my so-called independence, or 3. Hire a caretaker. Each of these options is rife with cons; option # 1 is unrealistic, option # 2 is antithetical to my general Will to Live, and option # 3 is ridiculously expensive. One might wonder why health insurance does not help with the cost of a caretaker, and to this I have no definitive answer. My cynical self, however, posits that if one is forced to go on disability, one is no longer the concern of his or her private insurance company, and things like personal care attendants are thus covered by the state. This saves the insurance company money, and that – obviously – is the name of the game.

• The caretaking options that I have proactively researched cost $20/hour. Sounds reasonable until you do the math. If I hired someone for a minimum of 5 hours on the weekends, it would cost a minimum of $100, an excess of $400 each month. As a teacher, this is not an added expense that my salary can incur.

I am consequently relegated to ask for help. I love my job. Teaching offers me a daily reprieve from thinking/stressing/obsessing about M.S., and though I am fully aware that what I do is not who I am, my job – at least at this point – feels like the best part of who I am. It’s the part that makes me want to get out of bed in the morning, and the part that makes me feel like I still contribute something to this life of mine – even if Meg has to help me get my pants on in the morning. I cannot let this be taken away from me, but it’s going to take a caretaker-extraordinaire to prevent; and that is something, at this current juncture, that I just cannot afford.

My Stoop Story

2010-07-18T14:28:00.000-07:00

http://www.stoopstorytelling.com/shows/42/storytellers/386

My Little Homie

2010-05-16T10:51:00.000-07:00

As a teacher in a wheelchair, I am chronically reminded that kids -- even kids that talk out of turn and never do their homework -- possess a level of core goodness that (unfortunately) seems to erode a bit after the age of 18. I am reminded of this almost every morning when I park outside of my school and am immediately bombarded with students asking if I need help, while the adults hurry into the building to sign in and get their copies made before 8:00. Sometimes I am also reminded of this when I use the bathroom.

Those of you with proper "adult" jobs might have access to office bathrooms that are clean and well-stocked with toilet paper and hand soap. If you're really lucky (though chances are, you haven't even noticed this), your properly stocked bathroom might even be ADA compliant (a.k.a. wheelchair friendly). As a teacher, I am not afforded such luxuries.

A few weeks ago, Jasmine, one of my old students spent her sixth period lunch in my classroom with me. She calls me her "Big Homie" and I call her my "Little Homie"; ironic considering she is roughly twice my size. She had work to do and I was hastily recording grades from the day's quiz into my gradebook. She'd intermittently reminisce about ridiculous things I did during class three years ago (she thrives on poking fun of me), and her occasional imitations of my voice are hilariously funny (though only because I hope they're totally -- I pray -- inaccurate). When the 10 minute warning bell rang, I figured I should head to the bathroom while I still had ample (or what I thought to be ample) time.

As I left the room, I told Jasmine to come check on me if I wasn't back when the bell rang. The words were intended as a joke. I mean really, what could a student do if I fell in the bathroom? (Even if that student threw the shot and the discus for the track team.)

So I headed into the bathroom and managed to -- for the sixth time this school year -- get stuck on the toilet. No matter how hard I tried to heave myself off the toilet with my left hand on the grab bar and my right arm braced on the toilet paper holder, I could not get myself to stand. And try as I did, I could not manage to keep myself calm; I started crying (which further ensured my complete inability to get up). Then I made another crucial error -- I looked at my watch. 1:24. In one minute, the bell would ring, my 7th period would invade a teacher-less classroom and inevitable chaos would ensue. This made me cry even harder and though I tried one more time to get up, I was met with zero success. The bell rang and my completely counterproductive meltdown elevated a notch.

Then I heard the bathroom door open.

"Ms. Hooks, you okay?"

It was Jasmine. I was crying so hard at that point I could barely speak.

"No. I'm stuck. Go find Mr. Marinelli and ask him to watch my class."

She said she would and promised she'd be right back.

The late bell rang sounding the official beginning of 7th period and I attempted to get it together. Jasmine once again opened the door.

"I couldn't find Mr. Marinelli, but I asked the skinny kid with the heart condition in your class to keep an eye on things and he said he would. What do you need?"

[The skinny kid with a heart condition could never, incidentally, be trusted to keep an eye on things.]

"Can you come in here and help me get up?"

"Okay, but public bathrooms scare me."

She walked in. I pulled my skirt down as completely as possible so as to appear somewhat presentable and opened the stall door. Jasmine peered in and immediately broke into hysterical laughter.

Her laughter is contagious, even in the most extreme of circumstances. So I started laughing and crying simultaneously, and incoherently told her that nothing was funny. This made her laugh even harder.

"What do you want me to do?"

"Get me off this freaking toilet!"

"Obviously. But how?"

I explained that she'd need to move the wheelchair out of the way, come into the stall and grab me under the armpits and help pull me up as I attempted (once again) to stand. This she did with ease, all the while laughing at the ridiculousness of the situation. She pulled me up, helped me adjust my skirt (which, incidentally had fallen into the toilet during one of my attempts to get up) and held me for support as I awkwardly pivoted and flopped into my chair. Once sitting, she helped me bend my stiff legs, flushed the toilet and pushed me over to the leaky sink. We both washed our hands and headed out the door of the bathroom towards my classroom. Unfortunately, though, despite Jasmine's heroic rescue and a relatively crises-free resolution to another failed bathroom venture, I could not fully get it together. Jasmine stopped pushing me a few feet away from my classroom door and -- still laughing -- told me I could not go into my classroom.

Recognizing nothing other than the urgent need to have a teacher in a classroom of 28 14 and 15 year-olds, I stupidly asked why.

"Ms. Hooks, no disrespect, but you look like you just got bitch slapped in the face."

The comment made me laugh so hard, that my tears almost stopped completely. I hastily tried to rub the smeared eye makeup away from my under eyes and waved air towards my face in a completely ineffectual effort to return my face to its normal color. I looked up at Jasmine and asked if I looked any better.

"Um, not really."

So I escorted Jasmine to her physics classroom first, told her teacher that she was late because she was helping me, and turned towards my classroom.

When I rolled through the door, an audible silence spread through the room. I guess it was obvious that I'd been crying. I avoided eye contact with all 28 pairs of eyes in the room, turned on the LCD projector and told everyone to start the quiz. In an unprecedented demonstration of obedience, they all opened their bags, got their notes out and started on the quiz. Quietly.

Except Antonio. Obnoxious and adorable Antonio got out of his seat, walked to the front of the room and hugged me.

A hug, at that point, was the very last thing I needed; I am completely unable to maintain my composure when I'm that raw and someone treats me with any semblance of tenderness or compassion.

I cried. Again. In front of all 28 students. The very last thing a teacher should ever do.

I (Still) Remember Running.

2010-03-06T11:31:00.000-08:00

There are certain things that bring memories to the surface: music, food, old emails, journals, photo albums, etc. There are times when submerging yourself in the past is necessary, and times when prior melodramatic rantings make you laugh, make you cringe, make you relieved that in spite of what you felt at the time you are finally Grown Up. Other times, however, there is only one word that adequately summarizes the act of reveling in the past: masochism. As someone with a disease that precludes most of the activities that I enjoyed for the first nineteen years of my life, I'm generally cognizant of this and know that -- when I'm in a funk -- I should not watch a track meet on TV, or go to one of my student's cross country races, or look through pictures of myself prior to 1997. There is one aspect of this, however, that no matter how much I try, I cannot control: the weather. Track is a spring sport, and even though I was officially diagnosed with MS in the fall of 1997, there is no time of the year that hurts as badly as the first few days of spring. I have lived through twelve springs since I last ran, and you would think that with the passage of time it would get easier. At the very least, I hoped to feel less raw over time. This, unfortunately, is not the case.

There are countless things I cannot do anymore. Most of these are things that I grieve silently on a daily basis: putting my pants on in less than twenty minutes, reaching items off of a tall shelf, hanging my clothes before they are wrinkled beyond recognition, and -- though it might sound unfathomable to a healthy person -- I truly do miss vacuuming, cleaning toilets and mopping the kitchen floor. These things, though, connote a certain level of dull (though mostly manageable) pain, and the pain is generally superseded by an ugly level of guilt. Things that I no longer do are things that other people now do for me, and I cannot seem to accept -- despite continued reassurance from friends and family -- that this is okay.

Nothing, though, nothing at all compares to the grief I associate with running. My friend Eric asked me once (a few years back) if I remembered what it felt like to walk. The answer was, surprisingly, no. He and I both agreed it was probably preferable to forget. Why then, I wonder, do I still remember how it felt to run? I can still feel my heels strike the rubber of the indoor track, and feel my quads burn through the last 100 meters of an 800. I remember the moments between "Set" and the gun, when I'd take a half step forward, lean forward over my right leg and silently repeat the mantra "I can do this and I will do this". I remember my high school track coach telling me he wanted me to run so hard that as I rounded the turn towards the final stretch I wished he would shoot me to put me out of my misery. Let me be clear, I have no delusions: running hurt, and there were days (lots of days) when I whined and complained and wished I had one iota of the hand-eye coordination that other sports necessitated. But I didn't, so I ran. And though it occasionally made my muscles burn and my mouth taste like blood from the overuse of my lungs in the cold weather, it became part of my identity.

I've heard that people who lose limbs still have occasional phantom sensations: an itch, a twinge of pain, the sense of hot or cold. Running is my phantom sensation. When I face the window and close my eyes tightly, I can still feel it. I can feel the miracle of my nerves making my muscles contract when I want them to, and feel the impact of the ground beneath my feet. When I open my eyes this memory knocks the breath out of me, and it's all I can do to remind myself, in a totally different context, that I can do this and I will do this. But there are no words: it is so damn hard.

My Mom

2009-12-31T22:44:00.000-08:00

To this point, I’ve successfully avoided writing a story about my mom. The obvious question is why, but the answer isn’t easy. My mom takes the brunt of my emotional crises while trying her best to convince her 5’4” petite frame that she can help me get all 5’10” of my stubborn body off the ground. This relationship, to me, seems particularly parasitic, because after raising me for eighteen years I proceeded to almost immediately replace my teenage surliness with a neurological disease. And while I made it through college and grad school and remain physically out of her hair while teaching in Baltimore, I still spend most of my summers with my family in Ithaca. I should note, too, that while I reserve a certain amount of selfless stoicism for my students and friends in Baltimore, when I’m around my mom, self-pity, fear, sadness and anger creep into my daily repertoire of emotions with an alarming frequency. This leads to a whole new unproductive emotion: guilt.

In the spirit of honesty, too, I am more than a little angry with her sometimes. Mainly because I’m here and I’m scared and sad and lonely and -- let’s face it -- she is half responsible for that. Also, though, because moms are supposed to make things better, and she can’t. She cannot make this better.

But man does she try.

I can’t remember now if it was last summer or the summer before, but it doesn’t really matter. All of my summers in Ithaca are characterized by long, lazy swims in Cayuga Lake. Except when it involves me, nothing about anything is really lazy, and pretty much everything requires a little bit of help.

(Or a lot of help as the case may be.)

Swimming in the lake takes a lot of problem-solving. My family does not own lake-front property, so it’s not like I can just wheel to the edge of the dock and dump myself into the water. Instead, my mom and I drive down a winding, gravelly, steep road to a secret and secluded spot at the water’s edge. There we have to park a few meters away from the beach to prevent the car from getting stuck in the gravel (which, incidentally, has happened), and I need to walk approximately twenty steps down a rocky hill to get into the lake. This past summer, it became painstakingly obvious that twenty steps were not going to happen, so I somehow convinced my mom that it was a good idea to get onto the ground and roll. Minutes later, dirty lake pebbles stuck firmly to my thighs, I rolled gleefully into the cold water. To clarify, the water was in the mid-70s – which sounds balmy enough unless you’re in it. It was also choppy. Specifically there were white caps, and once in the water, bracing myself amidst the tumult to adjust my goggles proved impossible. Declaring my leaking goggles “good enough”, my mom tossed me my buoy, I slipped it between my legs and took off.

Except I didn’t really “take off” anywhere – the waves made the quarter mile swim to my friend’s cottage seem like a complete impossibility. I felt like I had been dropped into an endless pool and the resistance was way, way too high. Three strokes forward and breathe to the right, three more strokes forward and another breath. On the sixth breath I tried to look forward and realized I was approximately one meter closer to my destination than I was when I started. I also got a mouthful of lake water in the face and a wad of seaweed wrapped uncomfortably around my neck. I kept going, but on the next stroke a wave managed to knock the buoy out from between my legs. I stopped swimming, attempted to stand on the rocks and watched as my blue buoy got sucked out towards the middle of the lake. Not knowing what to do, I inched closer to the shore and called to my mom, who was walking along the shore with my dog,

“MOM! I lost my buoy, I need to head back.”

It was shallow enough that I didn’t think I would drown, but a growing sense of panic was rising inside of me. Every time I got hit in the face with a wave, it grew, and when I looked for my buoy it seemed further and further away. I continued back towards where I'd started, but it proved difficult. It’s funny, when I explain to other swimmers that I can’t use my legs when I swim, the response is generally some variation of, “I don’t use my legs either!” What these people fail to understand, though, is that their legs are either significantly more buoyant than mine, or they use their legs more than they know. First of all, I am the densest person in existence – I cannot float. At all. If it weren’t for my strangely innate Will to Live, I’d stop flailing my arms for long enough to prove it to all disbelievers: I would drown. So without a buoy between my legs, I swim at a forty-five degree angle until my shoulders feel like they will spontaneously combust, then I either grab onto something, reach for a buoy (which I usually keep in an accessible location – not the middle of the lake), or panic.

Logically, the water was shallow enough that I could pull myself through the water using my arms. Two things, however, made that difficult: the waves, and the sharp mussel shells on the bottom of the lake. I attempted the arm-crawl technique for the first few minutes, but keeping my head above water was impossible with the apparent tsunami-conditions of the lake. Plus I cut the bottoms of my hands. So I headed out to the deeper water and tried to swim with all four limbs. Luckily, since I hadn't gotten too far in my journey before losing the buoy, I finally saw my car on the beach, and could just barely make out my mom's silhouette. I let the waves push me towards the shore, arm-crawled a few more feet and pushed myself onto my knees to pull the foggy, leaky goggles off my face.

"I made it!"

I then noticed that my mom was wet. Her shorts and shirt were saturated. My dog was in the car. I immediately imagined the worst: my dog had pulled my mother into the lake.

"What happened? Why are you wet?"

Before I relay her answer, I must offer a few crucial details about my mom: 1. She does not swim. She knows how to, but I have no actual memories of my mother doing anything other than splashing around the shallow end of a sparkling clean pool when I was a toddler. 2. She finds the lake "gross". When I tell her stories of being choked by seaweed, or encountering water snakes while swimming, she visibly shudders. Even on the nicest, hottest days at Cayuga Lake, she stays on the shore and utters hyperbolic statements such as, "I wouldn't get in that water for a million dollars." 3. Even while walking along the shore of the lake with only my dog, she is put together. I am a huge advocate of donning sweatpants, t-shirts and even the occassional pair of PJs in public, but not my mom. Even in her scrubbiest lake clothes she would still meet the approval of Stacey and Clinton of "What not to Wear."

So the question, again, was "What happened? Why are you wet?"

The answer: "I jumped in and tried to get the buoy."

Ruminations on the Eve of 2010

2009-12-31T21:34:00.000-08:00

There is an age-old adage that time heals all wounds. I scoff at that adage. Time has done nothing helpful for my neurological disease; rather than healing anything, in fact, it seems that almost thirteen years later, the wound is much bigger; it's now gaping and infected.

I recently joined a group on facebook called (perhaps inappropriately) “fuck 2009.” I joined because any year that starts with a concussion, a spinal tap, and two weeks in the hospital and goes downhill from there, is one I want stricken from my memory. I still possess a stubbornly optimistic streak, and joined under the hope that 2010 will offer some type of reprieve from the downward spiral that seems to have usurped my life’s current trend. Then, sitting on the floor of my bathroom after a messy transfer between the shower and my wheelchair tonight, I had the sickening realization that no year, since 1997, has been better than the last. This realization made me want to flush myself down the adjacent toilet, but realistically I knew I would not fit.

So here I am, on the eve of New Years, wearing my pajamas and wondering if there is any point to resolutions. Practically, I know that the things that clearly need improvement are decidedly beyond my control. Regardless, here is a list of my hopes for 2010. If the universe could cooperate with these aspirations, I’d be most appreciative:

First thing first: I need to rediscover my coping mechanisms. They appear to be MIA, and I’m desperate for their return.
I want to keep my job. I have no concerns about teaching right now: my kids learn, they love me and I them. It’s a symbiotic relationship of sorts. But the hassle of life in general is getting, well, a bit oppressive. When it takes twenty minutes to put on a pair of pants in the morning, I wonder sometimes if teaching is a realistic long-term plan. Side note, unless aforementioned coping mechanisms are located stat, I must teach. It’s imperative. That is all I have to say about that.
I want to swim again. Swimming is crucial to my sanity, and I haven’t been in the water since August. Turns out you need functional arms to swim. Interpret as you will.
I want to write more.
I want to find replacement agents for my classroom. Actually, I don't want to, I need to – Ashley and Anthony graduate this May, and while I am 100% certain that I will never love anyone as much as I love the two of them; the bottom line is I need help in order to do what I love to do.
It would presumably benefit my arteries to eat less dessert. That’s a tough one though, because self-restraint is not my forte and my roommate is the most amazing baker on this hemisphere.
I want to meet the love of my life. I am currently concerned he does not exist. (I'm equally concerned that if he does exist, I will be too wrapped up in my own anxieties to recognize him.)
I hope not to screw up my taxes this year. Paying the IRS over $500 in December was an unexpected (and most unwelcome) expense.
One of my favorite people in life just moved from Baltimore to Rwanda. I need to find a new friend who makes me laugh even a tenth as frequently as he did.

I feel as though the majority of these resolutions are beyond my control, but perhaps by documenting the things I want, I will be more open to receiving the things I need. Please. Fingers crossed.

Bars, Beers and Bathrooms

2009-12-25T20:20:00.000-08:00

Secretly I don't really get the point of the ADA (Americans with Disabilities Act). Who are these people who determine whether or not a building is "up to code"? Do these people use wheelchairs? Have these people actually seen a wheelchair?

Bars are especially problematic. This poses a problem when you're young(ish), single and want to avoid becoming a social recluse.

A few weeks ago my old teacher friends invited me to Joe Squared Pizza for happy hour. I'd been there before and knew I could get in the building, but remembered a small/inaccessible bathroom -- potentially problematic at this particular point in my disease's progression. Irrationally, though, I ignored these concerns, convinced my roommate to join us, and headed up to North Avenue for a much needed beer (and less needed pizza). Everything was fabulous -- barbecued chicken pizza (yum), sierra nevada beers (also yum) and good company. Unfortunately, though, I was faced with the inevitable need to pee after my first beer and headed to the bathroom while I was still coherent enough to negotiate the potentially problematic toilet situation. I managed to finagle myself through the door, and grabbed onto the sides of the bathroom stall to pull myself up. I shut the door to the stall, pulled down my pants and gracelessly flopped onto the toilet: victory! Shortly after my victorious flop, though, I realized that my descent was slightly longer than usual. In fact my knees were parallel with my chin -- it was some sort of mini-toilet that seemed to be only inches above the ground. Weird. Ready to leave the stall, I grabbed the toilet paper holder with my left hand, the side of the door with my right and leaned forward before pushing up: defeat. I managed to creep about one millimeter in an upward direction before flopping back onto the toilet. Problem-solving in situations like this is rapidly becoming my forte, but there are only so many possible solutions in a bathroom stall. I tried pushing off on the back of the toilet, holding on to the other side of the door, and even opened the door to grab my wheelchair (which wouldn't fit into the stall and was thus completely useless). Ultimately I gave up and convinced myself that someone would inevitably have to pee and would come in the bathroom to help me. So I waited -- all the while wincing at the disgusting toilet seat I was sitting on and wondering when the floor was last washed. Finally, after what seemed like eons, my roommate came in. The first thing she saw when she opened the bathroom door was the stall door open, my wheelchair jammed as far into the stall as I could possibly fit it, and myself, pants down, elbows on my thighs grimacing.

She giggled, "Would you like some assistance?"

"Meg -- I am so glad you came, I have no idea what to do. I've tried every possible way to get off this toilet, and I'm stuck. Does everyone out there think I fell in?"

Meg walked to the stall and pulled my wheelchair out of the way. We decided that I would push up as hard as possible while she pulled me from under my armpits. The plan seemed foolproof: my legs would initiate the proper movement, and Meg's strength would help execute it. Like most of my plans, though, it didn't work -- my legs failed to initiate and Meg failed to execute anything other than a maniacal giggling fit rendering both of us speechless and unable to properly breathe. It really was so absurd. Half of me wished someone would come in to help us, and the other half was so relieved that no one was there to witness the spectacle.

We tried a few more times but kept our success percentage firmly at zero. I decided it was time for Plan B.

"Meg, this is what we're going to do. I'll get on the floor and pull up my pants while kneeling. Then I'll crawl out of the stall to the sink, and I'll grab the sink with one hand and you with the other and get up!" Genius, the plan was pure genius.

Meg didn't like the idea of me crawling around the floor of a public bathroom, but I figured this was no time to concern myself with cleanliness. I pulled up my jeans as much as possible, pushed myself onto my knees, pulled up my pants and began to crawl. The bathroom was pretty small, so I reached the sink in a matter of moments. Once I had the counter firmly beneath my right hand, I pulled my chair closer to my left side and looked up at Meg. All 5'8" of her looked very serious; so serious, in fact, that I started to laugh again. Then she started laughing, and we were both, once again, rendered completely useless.

"We need to focus. We can do this, we just need to stop laughing." Stating the obvious is another one of my specialties.

Surprisingly, plan B was met with even less success than plan A. And now, instead of sitting on the questionably clean toilet, I was stuck on the unquestionably disgusting floor. The upside was that Meg and I were still giggling -- attributable perhaps to the beers we had consumed, but nonetheless preferable to wallowing in what seemed to be a helpless situation.

Just then, a firm knock on the bathroom door interrupted our ridiculous exercises in futility. It was my friend, Peter:

"Hooks, are you okay? What are you two doing in there?"

Meg opened the door. "We can't get Kate off the floor. Care to assist?"

All 6'3" of Peter pushed himself into the small bathroom, rolled my wheelchair out of the way, and heaved me off the ground. It seemed almost insultingly easy for him. I was standing within seconds, buttoned my still unbuttoned pants, washed my hands, and let Meg hold the door while Peter pushed me out.

We returned to our table of friends who predictably asked me what happened.

I intended to share the truth, but Peter beat me to an answer,

"We just had a threesome in the bathroom. It was awesome."

Seattle, Showers and Shrinking Worlds

2009-12-25T19:20:00.000-08:00

(Please excuse the lack of chronology here -- I started this in 2008, and just finished it now)

My hiatus from writing lately seems to correlate with my recent trip to Seattle. Even though my ambitious writing goals for the summer were thrown violently by the wayside, I think this was actually a good thing: I didn’t have time to write. Instead, I spent two-weeks further confirming my mythical impression of a city that lies 3,000 miles away from both my family and my job. Ironically, this burgeoning love affair with Seattle was preempted by dread. I found myself – even once the plane touched down – second-guessing my decision to travel at all this summer. Excitement was obscured by MS-related paranoia, and I realized that I was – in some strange way – yearning for a much smaller world.

My body, in continuing with its ten-year habit of disappointing me, has gotten markedly worse lately. Unfortunately, while this decline should correlate with an increased ability to ask for help, it doesn’t. My body and my mind are locked in a constant battle that – if unresolved – is likely to lock me at home.

Thank God my plane tickets were nonrefundable.

Once I arrived, I’d arranged to stay at my best friend’s new house. Meli and I have been friends since I was 15, so I wasn’t too concerned about “imposing” myself on her; it seemed much more daunting to ask her live-in girlfriend for help. And since Meli works an estimated 125 hours a week for an environmental law firm, while her girlfriend, Maura, works from home, most of my days were spent – at least in part – with Maura. Predictably, a measly day into my trip, my MS-related fears were confronted, and I managed to embarrass myself so thoroughly that my stubborn hesitancy to ask for help was (at least temporarily) superseded by practicality.

Less than forty-five minutes before my friend, Claire, was supposed to pick me up for brunch, I fell in the shower. Usually falling is one of my talents; I like to think of my time spent on the floor as an excuse to sharpen my problem-solving skills – once I fall, I need to figure out how to get up. If at all possible, I like to get up before anyone sees me (especially if I’m not wearing clothes). Once I hit the ground in Meli’s shower, though, no amount of problem-solving could get me up. My absurdly long legs were contorted into a gumby-like position on the floor of a soapy, wet, stall-sized shower. I tried climbing up the shower wall, and finagling my legs into a more supportive position, but every time I moved, my legs splayed out beneath me in the soap scum, and I found myself in yet another bizarre contortion. I sat there for a while, letting the warm water careen over me while I contemplated my options: I could remain on the floor of the shower until Meli got home from work, I could crawl out of the shower and hope for better traction on the bathroom floor, or I could attempt to rearrange myself into a slightly more modest position and call Maura for help.

Obviously I chose option 2. Unable to reach the faucet handle to turn off the water, though, as soon as I pushed open the shower door, my body sort of redirected the stream of water directly onto the bathroom floor. Then I realized that even though the top half of my body was able to crawl out of the shower, convincing my wet and slippery legs to get over the metal lip of the shower stall was an entirely new issue. I was defeated, frustrated and rapidly flooding the bathroom, so pulled myself back into the shower, closed the door and wished really, really hard to be someone else. Then I called for Maura.

“Maura? Can you come down here?”

No response.

So I tried again, a little bit louder, “Maura?! Can you help me for a sec?”

I still didn’t hear her voice, but there were eventual sounds of footsteps on the stairs, so I knew she was heading towards me. From the other side of the door, she asked what was wrong, I told her I was stuck on the floor and needed her help. She came in, reached her arm into the shower to turn off the faucet and -- sensing my desperate level of humiliation -- handed me a towel for modesty’s sake. Then, while trying hard not to cry and make the moment even more awkward than it already was, I reached my arms around her neck and she managed to pull me up. She was so nonchalant it was almost unnerving – it seemed like to Maura, picking naked girls off the shower floor was as common as changing the litter box.

Unfortunately, due to the aforementioned soap scum, I needed to essentially reshower, but Maura passed me the shower chair allowing me to wash my feet with far less peril. Thirty minutes later, clean and dressed, I headed to brunch feeling almost normal.

In addition to extreme (though temporary) mortification, I learned a few things from this incident. The obvious: to use a shower chair while showering. The less obvious: that accepting help -- especially from someone you're not 100% comfortable with -- is mutually empowering. I firmly believe that we are all here to give and to receive with grace. And though I don't know if it is really possible to be picked up off a shower floor with grace, I do know that Maura's calm affect allowed me to preserve as much dignity as humanly possible. I fear sometimes, that my need for help will forever curtail my ability to give back and I will remain a "taker" for the rest of my life. I also wonder if I will ever learn to receive help without a certain (often oppressive) level of guilt and humiliation. I do know though, that if I allow my world to shrink as much as my fears urge me to, I will likely never learn.

Humiliation and Revelation

2009-10-31T22:49:00.000-07:00

Although the most predominating thought that goes through my head these days is a variation of the phrase “I hate MS” (with use of rotating expletives to connote emphasis and avoid repetition), every once in a while my internal monologue is interrupted by a less angry thought: I have amazing friends. To suggest that my appreciation for the people in my life is equal to my hatred for this disease might be an overstatement, but I am certain that without the latter, I would never realize the importance of the former.

I was scheduled to fly to Seattle this past March for my friend Claire’s wedding. Her wedding was in the San Juan Islands, a few hours north of Seattle, so I knew the trip would involve a rental car, navigation between Seattle and the ferry, and negotiation of a hotel that may or may not be accessible. There were a few other obstacles: I had used all of my sick days during January’s stint in the hospital, and would have to take leave without pay for the wedding; I had just received a second treatment of an experimental MS treatment that essentially annihilated my immune system, thus rendering air travel slightly risky; I had zero confidence in my ability to either drive a car without hand controls OR to get successfully from Seattle to the ferry terminal without ending up in Canada; I had a fear of unfamiliar hotels ever since spraining my knee in an accessible hotel bathroom years ago. All told, I really didn’t want to go. Plus my dress didn’t fit anymore, so I would have to trek to the mall prior to the wedding (almost as daunting as the trip itself).

I expressed these fears to several people and the majority – bride included – advised that I cancel my flight. Taylor, however, was in the minority. Even after explaining all of the potential for disaster, he still agreed to be my platonic date/chauffeur, and ultimately convinced me that a trip to Orcas Islands in mid-March was well within the realm of possibility.

I have an astoundingly small number of friends who I feel comfortable asking for help. Taylor was not, at this point, one of them. Friends that I knew pre-MS are fair game; they grew to know and love me before I inherited my burdensome body. Taylor, however, is someone I met several years post-MS through an ex-boyfriend; two details which made him a less-than-ideal person to rely on for a weekend. I started concocting worst case scenarios in my head, all of which led up to a nightmarishly imagined phone call between Taylor and the ex where Taylor would utter the words, “You totally dodged a bullet – she’s a mess.”

Given the circumstances (real and imagined), Taylor must have offered one hell of a convincing argument because two weeks later, with a new dress neatly folded in my suitcase, I flew to Seattle. Less than twelve hours later, Taylor and I were en route to the San Juan Islands in a rented Toyota Camry.

The weekend – by all standards – was an immense success, but until this disease is fully cured, I should never breathe a sigh of relief and claim victory. There remained one last ferry ride between me and a truly drama-free weekend, but given my successful use of an unaccessible bathroom at the reception (where I was drinking), and my ability to get in and out of a tub shower in the dark (the island lost power), a ferry ride seemed like cake. We arrived at the ferry station and Taylor explained my situation to the ticket collector: our car needed to end up near the elevator so that I could access the upper deck of the boat. The ticket collector alerted the deckhands, and Taylor was given explicit instructions to wait for the deckhand’s signal before entering the ferry. Once on the ferry, cars lined up bumper to bumper, side by side and there was hardly room for a normal-sized person to squeeze in between the cars, much less a wheelchair. Naturally, there was a miscommunication between the two deckhands, and when Taylor followed the urgent hand motions of one deckhand, our car ended up at the front of the boat nowhere near the elevator. As soon as we parked, Taylor jumped out to see what – if anything – we could do to remedy the situation. Realizing the improbability of backing the twenty cars behind us off the boat, I immediately capped my water bottle and began to mull over an entirely new and altogether worse worst-case scenario: peeing my pants in front of Taylor.

I forced the thought from my mind. It was only an hour ferry ride back to the mainland, and – as a result of two days of excessive wedding festivities – I was severely dehydrated anyway. While Taylor and I chattered inanely about everything and nothing, I painted a desert landscape into the backdrop of my mind and willed myself not to have to pee. This worked fantastically until forty-five minutes elapsed, and somehow the four sips of water I’d consumed over the past 48 hours managed to fill my entire thimble-sized bladder. At this point I dropped out of conversation entirely, and focused instead on holding it until we arrived in Anacortes. One of the approximately 9.3 million problems with MS though, is that holding it really isn’t an option. I finally forfeited my pride and told Taylor I had to pee.

Taylor, unlike the majority of guys I’ve met in life, was at least slightly forward-thinking, and had anticipated this dilemma and knew that we were close enough to the front of the boat to access the deck hand's bathroom on the lower level. Immediately after my "I have to pee" admission, Taylor walked in to scope it out. He came back to the car and said it was disgusting but doable, so I relaxed a little. He got my chair for me and while I was transferring from the Camry to the chair, said he'd be right back and once again disappeared into the bathroom. Assuming - as most would - that he was using the bathroom, I started to wonder why he (someone who can hold it) would choose this time to go. By the time he emerged, my need to pee immediately usurped my curiosity and the two of us headed into the concrete-floored bathroom cell together. I rolled up to the toilet, preemptively wincing at what was sure to be a urine-stained disaster and was pleasantly surprised that it wasn't as bad as I feared. I unbuttoned my jeans, let Taylor help me stand and pull them off and flopped onto the seat for instant relief. Moments later, hands-washed and back in the car, I remarked that the bathroom was nowhere near as disgusting as I'd feared. Taylor responded nonchalantly:

"Yeah, I cleaned the toilet with paper towels and soap before you used it, but I didn't do the greatest job."

This disease is humiliating, humbling and demoralizing; I have lost even the smallest bit of control over things that I used to take so easily for granted. Without this loss, though, would I ever know that a friendship's true value could be revealed in a filthy, ferry bathroom?

My Agents

2008-12-23T20:07:00.000-08:00

As a teacher I have a lot of other teacher friends. I do not, however, have one teacher friend with special agents. I have two.

To be completely honest, I don't even remember how or exactly when my two homeroom students appointed themselves as my agents, but I do know that this would be an exceptionally rough year at school without them.

This whole MS thing (at the risk of sounding obnoxiously repetitive) has gotten significantly worse. In fact, it seems to be getting worse on a daily basis. I'll spare you the details. Suffice to say my priorities have once again shifted (or narrowed). A year ago my daily goals were threefold: to improve as a teacher, to exercise my dog, and to swim. Currently my only goal is to maintain enough independence to keep my job. When I'm at school I am granted at least eight blissful hours of reprieve from my otherwise constant self-loathing on behalf of this damn disease. Teenagers don't allow for such self-indulgent activities; they require constant attention (generally, in one form or another, all at the same time). So from 7:45 - 4:00 my internal monologue resembles as unbalanced washing machine: it is frenetic, overstimulated and unable to rest. There are quizzes to grade and lessons to plan and power points to create and students to counsel about all things non-academic and administrative memos to read and parents to call and papers to edit and....you get the point. Self-pity on behalf of MS does not factor into my daily thought process. At least not until the bell rings. Then my internal monologue resembles more of a broken clothes dryer -- tumbling around and around in circles, wasting energy and never even drying the clothes. It's sort of a mind-numbing type of silent panic that centers on the number of things I need/want to accomplish that my body simply will not do.

It is generally right as the frenetic internal monologue is replaced by this deluge of negativity that my agents show up. And it is almost impossible to fully submerge myself in self-pity mode when they're in my room. To protect their anonymity I'll refer to them as Agent I and Agent K. Agent I is a fair-skinned, blond-haired 16-year-old, slender white girl. Agent K is the opposite: darker skin, braided hair, dimpled cheeks on a not-so-slender black male body. They're an unlikely pair, and for whatever reason this makes me love them even more. Originally, I think they appointed themselves as my agents in order to earn service hours (a prerequisite for graduation in Baltimore City). They'd wash the boards, straighten the desks, pick the paper balls off the floor and stack the books on the counter. I, in turn, would add another hour to their service-learning log and thank them profusely. Somehow, though, between September and now my agents have evolved from student-helpers into personal God-sends (especially ironic considering my current relationship with Him).

I cannot figure out why this has happened.

Sometimes they meet me in the parking lot in the morning. Agent K drags my wheelchair out of the back of my Honda Element, and Agent I puts my backpack and lunch bag on the back. They wheel the chair over to the driver's side of the car and -- once I'm in -- wheel me up the ramp. This makes me sound exceptionally lazy, but the truth is, the walk between the front seat of the car and the trunk is getting harder every day. I sort of shimmy along the side of my car, grasping the side as best as I can for balance -- I refer to this as my spider woman routine because the side of my car is such an integral part of the process. If I attempt to move forward without a proper grasp, I fall -- it's happened on more occasions than I care to admit. When I see my agents in the parking lot in the mornings, the fear of falling in front of students or flipping over in my wheelchair with my heavy bag on the back is delayed a few hours. Once the three of us get into the school building, Agent K fishes my coffee mug out of my lunch bag and hands it to another student who fills it with two cups of green mountain deliciousness that keep me awake through at least second period. We then head into the main office where I sign in while my Agents grab my attendance folder and check my mailbox for me before we head towards the back of the building for a ride up to the third floor via the school's elevator (which looks exactly like a smaller version of the Holocaust Museum's model gas chamber). About ten minutes after entering the building, the three of us finally reach my classroom.

No matter how early I attempt to get to school, I am inevitably one of the last people to arrive in the room. And even though it's always before 8:00 and I'm grumpy and overtired and preemptively overwhelmed with the day etc., there is something about my classroom and the kids in it -- doing homework at their desks, or attempting to copy each other's work without me noticing, or sitting on the radiator talking and laughing and complaining about teachers, or asking me forty-seven inane questions before I even reach my desk -- that always makes me feel like my day is going to be okay.

And usually, depending on the level of irritation that my eighth period class leaves me with, it pretty much is. Especially when it ends with my Agents.

Now, five months into the school year, their hours of "service" to me must exceed 100, and even if I write them the two most glowing college recommendations in the history of college recommendations, I still could not ever adequately express my appreciation to my Agents. They still straighten my room and wash my boards, but they also accompany me to my car and help me with my wheelchair and heavy backpack. At my car, Agent K waits for me to pull myself out of the chair and begin the twenty-minute process of getting myself situated in the driver's seat. He pulls the heavy bag off the back of the chair and places it behind the driver's seat while Agent I hoists my chair into the back of the car. A few weeks ago it was rainy and cold and Agent K's brother was picking them up on an adjacent road at the other end of the parking lot. I offered them a ride across the lot and they both climbed in. They were completely situated, seat-belted and everything, and I was still unable to get my stiff legs to bend and get into the car. (After school my legs are particularly problematic -- sort of like having dead tree trunks attached to my body. Tree trunks that want nothing to do with bending/leaving the ground etc.) Agent K noticed the struggle and offered to help. I responded, "What are you going to do, pick them up and force them into my car?" He shrugged, got out of the passenger seat and walked over to where I was still trying to pick them up off the ground. He then grabbed both legs and picked them off the ground. This motion sent me flying backwards -- so I was lying upside down across the front seat of my car. It also sent me into a fit of laughter. I grabbed the steering wheel, pulled myself up, and directed Agent K to bend my legs before picking them up. He did. The two of us finally got all of my limbs into the car and I drove my Agents the whole fifty meters to their ride on the adjacent street.

Which brings me to the day before winter break. The afternoon routine was nearing the end: Agent I heaved my chair into my car and, as I sat half in and half out of my car telling them to have a fantastic Christmas and New Year's, Agent K stated the obvious in the form of a rhetorical question:

"You need help with your legs?"

Have I mentioned that this part of the afternoon routine is just moderately embarrassing?

"Um, no, I can get them."

Agent K continued, "Right, well I can too."

So I let him help, the three of us giggling at the ridiculousness of the situation. Agent I was giggling harder than usual. Defensively I chided her,

"You know this is ridiculous to me too -- most people who can't get themselves into their own cars don't work!"

She stopped laughing.

"I know, Ms. Hooks. You're an inspiration."

With that, Agent K finally got my legs to bend, I arranged them under the steering wheel and said something that I say too often,

"I love you guys."

I say it so frequently that I question its perceived value, but I meant it so much that day that I was worried I would suffocate with my love for them.

We said goodbye and I backed out of the parking spot. Then, filled with more love and gratefulness than this damn disease allows me to acknowledge very often, I cried the whole way home.

Pat and Katie (my new sister!)

2008-08-01T20:31:00.000-07:00