Health Interrupted

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

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  These things, though, connote a certain level of dull (though mostly manageable) pain, and the pain is generally superseded by an ugly level of guilt.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

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

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

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

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

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

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

I cannot figure out why this has happened.

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

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

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

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

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

“You need help with your legs?”

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

“Um, no, I can get them.”

Agent K continued, “Right, well I can too.”

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

“You know this is ridiculous to me too — most people who can’t get themselves into their own cars don’t work!”

She stopped laughing.

“I know, Ms. Hooks. You’re an inspiration.”

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

“I love you guys.”

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

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

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

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

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

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

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

Then I heard the bathroom door open. 

“Ms. Hooks, you okay?”

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

“No.  I’m stuck.  Go find Mr. Marinelli and ask him to watch my class.”

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

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

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

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

“Can you come in here and help me get up?”

“Okay, but public bathrooms scare me.”

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

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

“What do you want me to do?”

“Get me off this freaking toilet!”

“Obviously.  But how?”

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

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

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

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

“Um, not really.”

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

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

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

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

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