On graduation, some thoughts

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

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

Awesomeness. Times two.

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

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

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

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

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

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

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

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

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

Meg

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

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

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

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

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

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

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

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

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

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

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

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

April

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...

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

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.