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Thursday, November 15, 2012

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