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Wednesday, April 30, 2014

Marley and Me

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

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

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

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

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

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

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

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

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

Friday, March 28, 2014

Flying with a Power Chair. Not First-Class.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, March 24, 2014

No Racing, Plenty of Pain

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

The article frustrated me on multiple levels.

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

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

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

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

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

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

Sunday, June 02, 2013

On graduation, some thoughts

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

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

Saturday, May 11, 2013

Awesomeness. Times two.

Close to a decade ago, I randomly regained contact with Lesley, a college friend from Colgate. We started communicating via email for reasons I can't even remember and managed to become closer than we had probably ever been in college. She told me that she planned on visiting Baltimore during the spring–time with her 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.

Saturday, April 27, 2013


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.

Thursday, November 15, 2012


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