My Agents

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

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

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

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

I cannot figure out why this has happened.

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

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

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

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

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

"You need help with your legs?"

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

"Um, no, I can get them."

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

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

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

She stopped laughing.

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

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

"I love you guys."

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

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

Pat and Katie (my new sister!)

My Brother and Me (pre-speech)

Living "The Dream"

Less than three weeks before my younger brother's wedding, I went swimming with my friend, Lizzie. She was house-sitting in a county north of Baltimore. The two of us swam in the in-ground pool in the properly fenced and impeccably landscaped backyard of this house, so naturally I asked for details. The conversation went something like this:

Me: Whose house is this?

Lizzie: My friend’s. We went to college together, she met her husband there, they got married and she’s pregnant with her third kid at thirty years old.

Me: Wow. Three kids, huh? She’s only thirty?

Lizzie: Yup. Three kids, a house with a big yard and a pool, a Labrador retriever and she doesn’t even have to work. Can you believe it?

Me: No – does she really want all those kids? She’s so young.

Lizzie: Yup. She’s only thirty and she’s living the dream.

Me: Whose dream?

Lizzie: Everyone’s; definitely mine.

This is about the time that I realized that Lizzie and I – bless her heart – have absolutely nothing in common. I have tons of dreams. Being a stay-at-home mother of three kids by the time I’m thirty is (thankfully) not one of them. I love labs, but prefer mutts, have never met anyone “forever”-worthy, and have never been keen on yard work. I like to pursue and participate in my dreams: I want my book published; I want to write and travel and swim with the dolphins; I want to be a better teacher every year; I want to write the curriculum for a 12th grade class that examines apathy in the face of history’s horrors; I want to start painting again and to teach myself eight of Chopin’s preludes on the piano; I want to go for a run with my dog while she’s still young, and I want – when this damn disease is cured – to coach track and ride horses on the weekends.

Some of my dreams, I suppose, are just as elusive as finding a rich husband, but they involve my own aspirations and passions; they involve cultivating contentment, happiness and personal success. This does not mean that I want to live my life alone. I want very much to share my achievements and failures with someone who I miss while I’m sleeping. I will not, however, rest the entirety of “my dream” in the hands of someone I have not yet met.

All of this led to a comforting moment of clarity, no wonder I didn’t mind being the single sister at my younger brother’s wedding: his life is closely aligned with Lizzie’s “dream”, but not necessarily mine. This doesn’t mean I successfully avoid occasional bouts of envy - I wish I had met the love of my life in college and I made more money and were as happy and healthy as my brother. Mostly, though, I’m just relieved that out of all the girls he’s dated, my sister-in-law is not only someone I can tolerate, she is someone I genuinely love.

Thankfully I made these revelations a good forty-eight hours prior to the wedding, and had sufficient time to think of a speech for the rehearsal dinner. I stopped thinking about Lizzie’s dream and figured out what I wanted to say. Unfortunately, I completely forgot about my uncanny propensity to cry while public speaking, so my sentiments – while genuine and written with the intent to be expressed eloquently - came out as a blithering diatribe about how my brother reminds me of a dog. Below is what I wanted to say. I owe it to my brother to let him –
and anyone else – know that my intentions were good:

Since I’m a member of the bridal party, I guess technically what I’m about to say should pertain strictly to Katie, but – since the best man's in charge of the speech tomorrow – I’d better say something briefly about my brother too. I want to take some of the pressure off of Uber.

The first book I read this summer was Marley and Me. For those of you who haven’t read it or – for the groomsmen who don’t read – the book is about a badly behaved dog and its owner who comes to love him deeply and unconditionally. I bring this up because as I was reading, I saw a scary number of similarities between Marley and my brother. Marley was a little bit, well, outrageous. If he’d been a human, though, I think he’d have lived his life a lot like my brother: I imagine that he’d dress up as teen wolf for Halloween; he’d buy a brand new, enormous, gas-guzzling truck when a tire fell off his old one; he’d visit his sister in Baltimore and decide to walk to her apartment (alone and with a dead cell phone) in the middle of the night. He and his friends would shave each other mohawks in his sister’s bathroom and he would almost certainly run a marathon on the other side of the country less than a month before his wedding.

Much like Marley, my brother needs a special, patient and selfless companion in his life; he needs someone who can receive and reflect the kind of love he gives: loyal, genuine, enduring and unqualified (though absurd) love. He has found that companion in Katie. When circumstances (aka jobs) bring Pat frustration, she brings him compassion; when impulses get him into trouble (or, most recently, marathons); she offers him patience and support. She brings out the best in my brother and – most importantly – she sees and loves him for the outrageously loyal person he is.

I am proud to call you my sister, Katie, and I wish you both years and years of marital bliss.

So, while I’m not entirely sure that the dog-brother/owner-Katie analogy was completely flattering, I do know that I meant it to be. I also know that – in times that I turn into an emotional basket-case – the written word works a hell of a lot better than a tear-infested oratory.

I still remember that years ago, a close friend of mine was in her younger sister’s bridal party. For months before the wedding, I heard of the misery and humiliation that she endured as the older, single, maid of honor. I guess I just assumed that when I found myself in a similar circumstance, I too would experience such horrifying emotions. I thus modified my expectations accordingly: I prepared myself for endless wedding preparations, the inevitability of an awkwardly fitting and generally unflattering bridesmaid dress, and the potential to – gasp – not have a date by the wedding.

Except for the date part, though, none of my fears were realized. And, since I actively abhor crying in front of boyfriends anyway, my younger brother’s wedding weekend was absolutely perfect.

Post-bath day one...

Izzy - Day One

Izzy and Ink Pens

Izzy

Ironically, less than 24 hours after writing about my small victory in the lake and the cathartic powers of swimming, my dog managed to knock me over from a sitting position on the floor (she can be a little overly exuberant with her greetings). She sent my right arm into a position never successfully attempted by Gumby, and consequently – a good two days later – my right shoulder remains in an unprecedented amount of pain. I have a relatively high threshold for pain, so it wouldn’t be that big of a deal if I could still swim. But I can’t.

And though I’m tempted to write about my monumental hatred for a sedentary lifestyle, I think I’ll write instead about adopting my dog. I need to forgive her.

A year ago last May, I had a roommate. He and his girlfriend used to jokingly talk about the three of us “time-sharing” a dog. At that moment, the idea sounded somewhat appealing. I wanted my own dog but thought I might need help. The idea of housebreaking a puppy from inside a high rise apartment seemed daunting. Throw the wheelchair into the equation and it seemed downright impossible. Without any real serious thought into the logistics of any of this, though, my roommate’s girlfriend looked up available dogs at the local SPCA. Naturally, there was one puppy. Her name (this makes me giggle) was Monique, and – as all puppies are – she was the most adorable thing I’d ever seen.

My roommate and I secretly conspired to go see the puppy the following afternoon, so I bolted out of school after my seventh period class, picked up my roommate and headed to the SPCA in north Baltimore. The two of us decided we couldn’t bring his girlfriend because she was too impulsive and irrational, so we went alone. Apparently I’d successfully duped my roommate and myself into thinking I could be a reliable voice of reason. This self-assessment could not have been further from the truth.

The second I saw Monique in her puppy run, I looked at my roommate and said, “Oh my God – I need to have her.” He laughed at me, reminding me of the 700 times within less than 24 hours that I’d listed all the reasons why a puppy was a bad idea. I reminded him that he’d help me, and repeated my completely emotional and not-at-all rational statement: “I need to have her.”

That afternoon, I filled out the adoption application and requested that the SPCA hold little Monique for the next 24 hours. Within that amount of time, two simple things needed to happen: my roommate needed to produce vaccination records for his own dog, and the SPCA needed to contact my apartment in order to confirm that my apartment was “dog friendly”. These two tasks proved far more difficult than either my roommate or I imagined: my roommate had lost his dog’s vaccination records and thus needed to find a vet that would see his dog that day and fax the updated records to the SPCA before it closed (at 4:30), and the manager of my apartment was not allowed to admit a “pit mix” into the building without her supervisor’s consent. I assumed these obstacles could be easily overcome and drove directly to the SPCA after school the next day to begin the interminable wait.

I’m generally a firm believer that time goes by much too quickly. As someone who is habitually late and chronically procrastinating, I could definitely benefit from a few extra hours in each day. Stick me behind a desk in the SPCA and tell me to wait for two things that are entirely out of my control though, and time somehow stops. I sat at the fake wood table for what seemed like at least 6 hours. My roommate had no cell phone, so there was no way to check on his status at the vet, and my landlord – who I called at least 17 times that day – could not get in touch with her supervisor. In my head I tried to convince myself that everything would work out if it were meant to, and that getting a dog – as I’d pointed out before – was a highly illogical idea anyway. I knew, though, that as I sat there waiting for a phone call and a fax, it was far too late for logic; reasonable/rational Kate had been taken hostage by an eight pound puppy the day before. It was doubtful that I’d ever get her back.

Then, at approximately 4:27, as multiple staff members were starting to disappear for the day, my cell phone rang. It was my landlord. I put her on with the adoption coordinator and sat there staring at him, searching for any indication – positive or negative – and finding nothing on his expressionless face. When he hung up, he gave me the news: the supervisor said yes. Seconds later, I heard the fax machine as it printed out copies of my roommate’s dog’s vaccination records. An SPCA volunteer went into the back room to retrieve Monique; I paid my $250, put her on my lap, and headed for the door.

Less than 2 seconds later I realized that propelling a manual wheelchair with a squirming puppy in my lap was, well, impossible. Luckily, a straggling volunteer offered to help, and I clutched the puppy with both hands while the volunteer steered me to my car. It was right around this time that I started second guessing my decision: if the volunteer hadn’t offered to help I’d likely still be sitting in the SPCA waiting room with a dog on my lap. Then I drove home. This too was more difficult than I anticipated. Scared out of her mind, little Monique wanted nothing to do with the passenger seat. She stumbled over the center console and, with her sharp little puppy claws, started to climb me. I was forced to abandon my hand controls while I grasped her tightly with my left hand. With my right hand on the steering wheel and my not-so-dependable right foot on the gas, I slalomed down Route 83, praying that my puppy would stay still and that my foot would work for the next ten minutes. When we finally arrived at my apartment building, I realized that my roommate had both my garage door opener and my access card to the building. I pulled over, put Monique on the floor, and called my landlord for the 18th time that day. I begged her to let me in and invited her down to meet the reason behind my incessant harassment. Moments before she arrived to let me in, cute little Monique peed on the floor of my car – the joys of pet ownership were, once again, looking questionable, and we hadn’t even made it home yet. Eventually – with assistance from my landlord – I parked my car and somehow got the puppy and myself into my apartment. I was sweating and my feet reeked of dog pee, but I was relieved: we were finally home!

Then things got worse. I had completely forgotten that my roommate was dog-sitting for the week, and some stranger’s shepherd mix was there to greet me at the door. The shepherd took one look at Monique and started to drool. Within seconds there were foot-long stretches of frothy dog saliva hanging out of her mouth. Convinced that the potentially rabid Shepherd was going to attack the puppy, I tried to strategically place my wheelchair between the two dogs. Unfazed by the drooling dog or her new surroundings, the puppy then pooped right in front of the door and bolted in furious circles around the dining room table. Sliming everything she touched, the shepherd followed the puppy stealthily but was fortunately too fat to keep up. Convinced that Monique could fend for herself, I grabbed a plastic bag off the nearby kitchen counter and slid out of my wheelchair and onto my knees to scoop the poop. I then returned my attention to the dogs just in time to see Monique dodge the shepherd, jet under my wheelchair and sprint directly toward the bag of poop. Before I could grab her, she had the bag of poop firmly clenched in her jaw and resumed her game of keep away with the shepherd.

Defeated, I collapsed onto the floor and called my friend, Anique. The conversation went something like this:

Anique: Hello?

Me: You need to come over right now.

Anique: What’s wrong? What happened?

Me: I just got a puppy. I’m alone in the apartment with the puppy and a random drooling shepherd mix. I think the Shepherd wants to eat the puppy, and the puppy is running around in circles with a bag of shit.

Anique: (This is one of the million and five reasons I love her) I’ll be right there.

Before Anique arrived, two things happened: my roommate arrived home from the vet bringing the grand total of dogs in my little apartment to three. I also decided that Monique was – as a name – all wrong. Monique is a name best suited for a diva, not a puppy that runs around with bags of poop in her mouth. I’d been thinking of names, and had a list of five – only three of which I remember. Deciding that Chloe was better suited to a purebred, and that Sammy sounded a little too androgynous, I settled on Izzy. Not Isabelle or Isadore, just Izzy. It fit her. Thankfully it still does.

I’ve only owned her now for thirteen months, but the number of Izzy stories I could write would fill a novel. She has grown from an 8 pound firecracker of a puppy, into a beautiful (though overly-excitable) 50 pound mutt. She has knocked me flat on my back in public by leaping out of my car to lick the entirety of my face, she has eaten two brand new ink pens and dyed her fur blue and green, she has run through open doors of restaurants to beg for strangers’ food, she has leapt over 5 foot fences in an effort to rescue me from a friend’s swimming pool, and once – while I was assembling my wheelchair outside of a Pet Smart, she escaped from my car and made a mad dash directly through the store’s automatic doors. Once inside, she brazenly interrupted the store’s weekly puppy obedience class and made her way straight to the squeaky toys.

Not one person or thing, though, has ever made me laugh to the point of tears as often as Izzy.

As it turned out, “time-sharing” a dog proved far more difficult than owning one alone (even with a neurological disease). Especially when certain parties involved in said “time-share” prove as responsible as termites. I am no longer friends with my old roommate or his girlfriend, but Izzy remains a constant source of joy in a world that is far too often dominated by MS-related self-pity. So, despite a shoulder whose function is still severely compromised, getting this dog was the best irrational decision I’ve ever made.

Small Victories

Last Wednesday marked the first victory of the summer: I swam in Cayuga Lake. Let me attempt to explain why I consider this a victory.

My family lives in Ithaca, a small town in upstate New York that is known primarily as the home to Cornell University and as a haven for hippies. It’s a strange little town, and I never truly appreciated its idiosyncrasies until I moved away. I also never appreciated Cayuga Lake until I spent 8 years staring into the garbage infested, oil tinged and vile smelling inner harbor that serves as Baltimore’s # 1 tourist attraction. Up here in Ithaca, though, not only do I get to stare into a beautiful, cold, (relatively) clean lake, I get to swim in it too – which is easier said than done.

My family doesn’t live on the lake, nor is there public access in any MS-friendly location. We know people with highly sought after lake houses, but they generally include a million long, steep, uneven stairs that effectively prevent wheelchair access. Consequently, if I want to swim in the lake, I need to find a place where one can all but drive into the water, I need someone to help me traverse the sharp stones that comprise the lake’s “beach”, and someone to help me get out of the water post-swim. Last summer, thanks to my mom, I found that place – it involves a mysterious key, a rusty gate and a mile of gravelly dirt road that ends up – obviously – at the lake. There is a small patch of grass that accommodates my mom’s car, and an approximately 25 step walk to the side of the lake. With my mom’s patience and help, I usually manage to hobble from the grassy patch to the rocky beach, where I gracefully sink onto my butt and crab-walk into the sub-seventy degree water. Once submerged, I remove my too-small tevas, throw them back to shore, adjust my swim cap and goggles and swim away (have I mentioned how relieved I am that this is not a public beach?).

This whole ordeal was barely feasible last summer, and last summer I was considerably more functional than I am now.

My body wants nothing to do with leaving the bed lately. I put my bathing suit on and break a sweat; I walk down the stairs of my parent’s house grasping the railing so tightly my knuckles turn white; I sit to put on my shoes and spend another ten minutes wrestling with my own feet. When it’s finally time to go out the door and head towards my mom’s car, I use the last of my energy and concentration; every step is planned. If it’s not, I fall, and it’s no picnic trying to get me up. Truly, my body is a phenomenal pain in the ass.

Swimming in the lake, though, as difficult as it’s become, offers me the only peace and tranquility I can find within this body of mine. Thankfully my mom realizes this too; so she sacrifices her summer afternoons to drag me to and from the lake - an activity that likely rivals sticking her finger in electric sockets.

So last Wednesday, I struggled to my mom's car and the three of us: my mom, my slightly spastic dog and I headed to the lake. I couldn’t help but imagine all sorts of catastrophic-type circumstances. What if, while linking arms with my little mom, I lost my balance and wrenched her shoulder out of its socket? What if I fell and she couldn’t get me up (I am, after all, 6 inches taller than her)? Worse yet, what if I got half way through the swim and my arms stopped working and I drowned? I couldn’t even bank on a heroic rescue from my 60 pound lab mix, because her only rescue strategy involves frantically paddling toward me, then paddling/climbing on top of me, and finally pushing my head beneath the water and grabbing my ponytail with her teeth.

(I guess you could call these slightly hyperbolic possibilities.)

It is with these extreme (and slightly melodramatic) fears that my mom, dog and I arrived at the beach, met my friend and swimming partner, Chris, and began the slow and potentially treacherous walk to the water. While my dog sprinted mindlessly in circles, my mom and I worked out a system: she would walk forward a step and stabilize herself, and I would grab onto her arm when she was still (with an unnaturally tight grip) and mentally will my legs to move along after her. It wasn’t the fastest process in the world, but I made it – onto the shore and down the rocky beach to the water. Eventually, with assistance from Chris and my mom, I sunk down into the water crab-style and was free. Unfortunately, as soon as I was fully submerged in the sub-seventy degree water, my dog decided it was a perfect time to swim out to me and practice her rescue strategy. She also decided that the buoy I use to help me keep my legs afloat was more suitable as a floating chew toy, and – as such – it now resembles a chunk of mangled, swiss cheese rather than a swim buoy that any self-respecting athlete would use.

Chris slid into her wetsuit (which seemed like a workout in itself) and the two of us began our swim. I kept the buoy firmly between my legs, relying solely on my arms to pull me through the water; Chris – with a presumed tear in her rotator cuff – pushed herself through the water using only her legs. (I’m certain that if the two of us could somehow combine our functioning limbs, we’d be the Amanda Beards of Cayuga Lake.) We were undeterred though, and the two of us – slow as it was – finished our half mile swim with, if not grace, then at least a respectable amount of determination.

Back at the beach by my mom’s car, Izzy galloped into the lake like the incorrigible water-loving mongrel she is, and paddled furiously towards me; she was either ecstatic to see me and relieved that I’d returned alive, or she wanted the half-eaten buoy (I prefer to assume the former). I dodged her, distracted her with sticks, and began my ascent back onto the rocky beach. Chris and my mom helped me out of the water and back to the car where I hastily removed my cap and dried off. Chris, fighting to pull the saturated wet suit off, managed to smile and say, “This was fun, when will we do it again?”

I opened the door to my mom’s car and Izzy jumped in. She managed to get her muddy paws on both front seats before she awkwardly leapt into the back seat, shook furiously and began rubbing her wet (stinky) body all over the interior of my mom’ car. I glanced over at my mom who looked somewhat defeated at this point, and said to Chris, “Every day that we can!”

My "Bucket"

I just got off the phone with one of my all-time favorite people. She just broke up with her boyfriend of two years, because – as he explained it – he doesn’t see a future between them. Somewhere in my self-aggrandizing brain, I’ve come to view myself as the only scared, single 20-something alive. Rationally I know this is not true, and though the MS thing definitely sharpens my fear of perpetual singledom, I do not have (nor want) a monopoly on loneliness.

While listening to her tonight, she said something that made me think. She said, and I paraphrase, “People say I’ll find a better guy, but I’m starting to think that everyone’s pretty much a mess. We go through break-ups in order to give us time to breathe and recover enough to deal with another person’s bucket of shit.”

So here I am, an hour and a half later, thinking about my own bucket of shit. It comes in the form of a wheelchair, but inside it there’s all the fear and disappointment and anger that have grown out of a decade with MS. I’m sure there’s other shit in my bucket by now, but everything MS-related is definitely the heaviest for me to carry, and the hardest for me to share. In spite of this, though, I might actually have a leg up on several other single 20-somethings out there: I’m acutely aware of what’s in my bucket. And while I typically reserve the articulation of my MS-related struggles for my journal, anyone I date sees the majority of my “mess” immediately.
I guess this should be viewed as a positive. I’ll never ask anyone to go burying through my bucket of shit only to discover the real deal-breaker five years down the road.

In addition to this oh-so-sophisticated bucket of shit epiphany, I realized something else. My friend – MS or not – is hurting just as badly as I ever have. Post-breakup, she’s filled with the same type of fear, self-doubt and sadness as I am. And just because her own “mess” doesn’t include a neurological disease, doesn’t make it any easier to deal with, heal from and eventually share with someone new.

A year and a half later...

Since it’s officially summertime, and I’m traveling and mooching off my parents rather than maintaining any semblance of gainful employment, I figure now is as good a time as any to start writing again. I never really stopped, but for the past year and a half, my journals have been redundant entries that boil down to two things: an increasing hatred for and impatience with MS, and a concurrent loss of hope in God. My goal is to write despite my inability to get out of this funk. Point being, if you are looking for an optimistic, feel-good-type story, you might want to read someone else’s blog.

That’s my preface.

Lately I feel like I’m chronically raining on someone else’s parade. When friends call with news of marriage, pregnancy, new children, or new jobs, I’m having a harder and harder time answering the simple question, “How are you?” See, I have a few “friends” who – without much prompting – seize the opportunity to respond to the inquiry with a 20 minute soliloquy listing each and every grievance. The maladies are subject to almost daily changes and vary in extremity – from dust allergies to suspected organ failure. The only conclusion I can draw from this is that there are people out there who are genuinely unable to successfully function as humans.

I’m worried I’m becoming one of them.

So I’m learning to dodge the question and substitute a truthful response with a story about my dog or – during the school year – about my students. Sometimes, though, a piece of truth slips out. I’m worried that with it, my stock value as a friend will decline (or, at the very least, become much, much riskier to invest in).

Last week I went to a friend’s to play poker. (Read – to give away money.) I brought my dog with me so she could burn off some energy with my friend’s dog, and in between hands, one of the guys pointed out that she could benefit from some obedience training. That my dog is prone to minor bouts of misbehavior is undisputable: ten minutes into the poker game, she had stolen the other dog’s toys and destroyed them, drank a spilled beer off the floor and launched herself onto my lap to lick my ears and chew my nose. Really though, other than her overwhelming level of excitement and her occasional stubborn streak, she’s a pretty good dog. Especially since she’s still (sort of) a puppy.

Excuses aside, I acknowledged her misbehavior and – while laughing – added, “If I didn’t have that dog to feed, though, I’d definitely have killed myself by now!” I then realized that efforts at levity while alluding to suicide just aren’t funny. Especially since – even though they’re guys and thus generally oblivious to emotions – I think all four of them detected a slightly disturbing level of honesty behind my hyperbole.

I inwardly winced, awkwardly laughed and immediately changed the subject. Without further mention of my dog or suicide, the five of us continued our poker game.

First Period

I suppose I should write this today lest I wait another week and attribute my current love for my first period class to a bout of temporary insanity. Remember, please, that this is a one-day story of pleasantries and is no way indicative of my actual year-long experience with this class. Remember too, however, that these children are ninth graders and are thus prone to daily vacillations in their behavior.

I, as their teacher, must remember the same thing.

On Tuesday of this week I was perilously close to repeatedly banging my head into a student’s desk. The day wasn’t much different than any other: first period a few students took fourteen minutes to find a pencil; I collected homework to discover that the majority of my students have been lying to me about completion presumably all year; then my second period class decided to “raise the roof” during my attempts to teach and somehow managed to signal the beginning of a human “wave” which swept through my room as I discussed imperialism. The day went downhill from there, and I thus concluded that I would either sacrifice my desire for perfect attendance by getting “sick” on Wednesday, or I would have to show a movie in order to survive the week. As I own a copy of Hotel Rwanda, I opted for the latter and, on Wednesday, preemptively discussed the connection between the Rwandan ethnic conflict and Belgian colonization.

During first period on Thursday, at the midpoint of the movie, I felt myself start to unravel a bit. Despite the fact that I’ve seen the movie twelve times already, the removal of the majority of the United Nations peacekeeping force, coupled with the separation of the Europeans from the Rwandans strangled my idyllic belief that good ultimately triumphs over evil. So, in sticking with my apparent predilection for self-imposed public humiliation, I started to cry. I knew full well though, that if my first period class witnessed my emotional outburst, I would never command their respect again, so I tried really hard to fight off my tears. I expended so much energy attempting to do this, in fact, that I started to sweat and felt my face flush fuchsia. Then it happened: my eyes got wet, and my nose started to run. I tilted my head upwards towards the ceiling and tried to mentally will the tears to stay in my eyes, and the snot in my nose. I knew if I sniffed (which I obviously needed to do) or wiped my eyes with my sleeves, I would attract the attention of twenty-seven pairs of eyes. Such an attraction, in my paranoid mind, would undoubtedly unleash a litany of mini-disasters: the kids would find the undoing of their teacher more entertaining than the movie; I, resenting their amusement at my expense would be forced to act teacherly and mean and turn off the movie; I would be forced to spontaneously invent some type of alternative assignment on the following chapter which I had yet to read, and they would never understand the connection between European imperialism and the mess that currently exists in Africa. God. Please don’t sniff!

But amidst all of my internal pleading, an innocent tear ran down my cheek (bringing mascara with it), and a small line of snot suddenly stretched between my nose and my mouth. It was disgusting. I had to do it. I had to sniff.

The row of kids sitting closest to me uniformly whipped their heads around to look (as predicted), and one of them blurted out, “Ms. Hooks is crying!” (Also predicted.) But then, rather than the predicted sequence of mini-disasters, four of my female students turned to look at me and they were crying too (I have never been so relieved to see other people in tears!). One of my kids stood up to hand me a roll of paper towels (it’s a city school, we have no tissues), and Darrin, whose mom’s phone number is on speed dial in my cell phone, piped up with, “Ms. Hooks, it’s okay – I’m crying on the inside.”

So this is what I conclude: my first period class, while driving me effectively batty all year long, is filled with the exact thing that the movie so pointedly lacks – goodness.

Airports, Cancer, Anger and Sunshine

Last year I went on a blind date to the Holocaust museum in D.C. Not only was the location intensely romantic, the actual set-up was too - it was planned by my students. In fact, they came along. So did my mom. So my "date", my mom, my students and I all traveled from Baltimore to D.C. on a yellow school bus. My 9th grade students had been raving about their old middle school teacher, Mr. Sanders, for months, so when it came time to organize the field trip a few of them were adamant that he join us as a chaperon. It seemed innocent enough (especially since Mr. Sanders was my little brother's age and had a girlfriend), but in the days leading up to the trip I was bombarded by comments like, "Ms. Hooks, Mr. Sanders is so cute! You'll love him. He looks like a J. Crew model" and, "Ms. Hooks, Mr. Sanders won't care about the wheelchair - he's so nice." Suffice to say, the whole thing started to make me feel a little bit awkward. My kids were right, though - Mr. Sanders was exactly as they described. Plus the fact that he was 3+ years younger than me and had a girlfriend, allowed me to quickly replace my trepidation with appreciation for the 24 year-old "J. Crew model" who took a day off to accompany us to D.C.

That story becomes relevant later.

In the meantime, my ex-boyfriend's mom was diagnosed (for the third time) with cancer. The chemo treatments seemed to be effective until about two weeks ago, when the cancer decided to spread to her brain. While my ex-boyfriend is really more of a current friend than an actual ex, there was a good ten-minute span of time when I thought he had to be "the one" merely because I loved his family so much. I still do. So after Eric and I tried (unsuccessfully) to date, we remained friends - a relationship that has been far more sustainable than any romantic endeavor ever was. So now, every time I fly home to visit my family, I visit Eric, his wife, and his family as well - I'll never find in laws that I love as much as I love them.

Anyway, when Eric told me about his mom, I could not stop crying - it was pathetic, actually. One of my best friends was telling me about his mom, and I couldn't even keep it together to offer support or ask proper questions. Plus, I am completely incomprehensible when I'm crying, so even my meagre efforts at compassion sounded much like my mom's 8-pound shitzhu howling. Comforting, I know. So I decided to fly home the following weekend to visit her; there wasn't much to say anyway.

Unless a terrorist had commandeered the plane en route to Rochester, NY, I doubt the weekend could have been much worse. But, in the words of Walt Whitman, Eric's mom, Phyllis, is "so much sunshine per square inch" and just being in her presence is like finally holding hands with someone you've liked for a really long time - it just feels right. Warm and still and right. So despite the fact that I think I cried more last weekend, than all other times in my life combined, I am so, so glad I went.

During the flight back to Baltimore, I realized that this was the first time in my life, where the upcoming work week seemed less stressful than the weekend (even though I couldn't remember what I was actually teaching about the next morning). When the plane landed, I got my suitcase, placed it on my lap, and headed outside to wait for the bus that would take me to the airport parking lot. While waiting, I heard someone call my name:

"Ms. Hooks!"

I shuddered a little, assuming that one of my students was at the airport. Cautiously, I turned around. There, looking as J. Crew model-esque and kind as my students had promised, was Mr. Sanders.

"Hey! What are you doing here?"

(Is that not the stupidest question you could ever ask someone who is at the airport?)

So Mr. Sanders and I proceeded to talk - mostly about school - until the bus arrived to take us to the daily parking lot. When the bus arrived, 20+ other people scrambled on, and Mr. Sanders asked the driver to put the ramp down so I could get on. This request, however, seemed to confuse the bus driver, who was unable to operate the ramp. Eventually Mr. Sanders climbed into the bus and manually pried the ramp up and out so I could board, but once I was on, there wasn't really anywhere for me to go. The only empty spot was right next to the driver, and the driver started to explain that he couldn't drive the bus until I was "strapped in."

I fly a lot, by the way, and I take these airport transport buses almost every time I do - I had never been "strapped in" before. I told the driver that wheelchair strapping was totally unnecessary, and went back to my conversation with Mr. Sanders. A few minutes passed and Mr. Sanders was in the middle of his weekend story, when I realized we hadn't moved. I briefly interrupted, and asked the bus driver why we hadn't moved. His response?

"I told you, I need to strap you in."

Why he never made any effort to do this himself alludes me, but apparently the entire bus load of people needed to wait until another airport employee was available for the job. In the meantime, I stopped listening to Mr. Sanders and started to feel my face get hot. I immediately forgot all of my other redeeming features, and traded in my inner peace and social competence for oppressive sentiments of guilt. I was a. embarrassed, b. horribly burdensome, c. ridiculously conspicuous and d. helpless. I wanted to jump out of my wheelchair and throw myself dramatically off the (non-moving) bus, but my MS kept me still. Still and mortified. Then, two men - both in their late fifties - started to get impatient.

One man moved towards the front of the bus, "Hey, why aren't we moving? I have places to be."

The bus driver explained that I needed to be strapped in. This did not appease the angry man.

"Well let me off this bus then, I'm not sitting here for one more minute because of one person."

The bus driver calmly opened the door, and the man squeezed by me and hurriedly stumbled off the bus. His absence provided another angry man the opportunity to berate the bus driver (and, through proxy, me). Angry man # 2 stormed to the front of the bus and began aggressively pointing at me,

"You are telling me that we're sitting here because of ONE person?!" (He continued to erratically point at me. His face was red and the line through his brow was so deep that I thought his head might split open.)

The bus driver said nothing, the man kept angrily gesticulating and telling the entire bus load of people that the delay was entirely my fault, and I started to cry. I also felt like I was in a sauna. So instead of saying something witty to appropriately verbally combat Angry Man # 2, I just sat there sweating while my eye-makeup ran down my face in streaks. At this point, Mr. Sanders had apparently heard enough of Angry Man # 2, and decided to say a few of the things that I would have said if I wasn't silently choking on sobs.

"Excuse me sir, but this is not her fault. You do not have to talk about her like this - she's crying now!"

Angry Man # 2 did not apologize. He looked at me, appeared somewhat pleased to see me crying, and looked back at Mr. Sanders. He continued to coldly stare at Mr. Sanders for the next five minutes while the airport employee (finally) strapped me in, and we (finally) headed towards the daily lot. The entire bus load of people was entirely silent, and the only words uttered between the airport and the lot were directed at Angry Man # 2, and were assertively articulated by Mr. Sanders,

"STOP looking at me like that." (Mr. Sanders has an exceptionally powerful teacher-voice. Though it must be noted - the man did not stop glaring at him.)

Oh, and the best part? Angry Man # 1, who had abruptly evacuated the bus because he had "better things to do than wait" ended up back on board, because no other bus had arrived. It is only in retrospect that I can appreciate the irony of Angry Man # 1's misfortune.

Mr. Sanders and I got off the bus at the first stop in the lot. He helped me get my wheelchair and my luggage off in a reasonable amount of time, and I tried to stop crying for long enough to properly thank him for his help. There were a lot of things I wanted to thank him for, actually, but communication was apparently not my forte last week.

I headed off towards my car (or where I thought I had parked my car. I lose my car in the garage every time I go to the airport. Thank God for the panic button.), and while I aimlessly wheeled up and down the aisles of the dark garage looking for my navy Toyota, I overheard a few girls in the adjacent aisle, at a nearby car. The girls couldn't see me as I was (obviously) in my wheelchair and significantly below eye-level, but they were close enough for me to hear their conversation. This is where my faith in humanity begins to be restored:

Girl # 1: Can you believe the assholes on that bus?
Girl # 2: Seriously. I am so glad that guy finally said something.
Girl # 1: I wanted to do something, but didn't know what to do.

Relieved to know that other people on the bus were more mortified with the behavior of the angry men, than the time we spent waiting for my wheelchair to be properly strapped in, I did what any slightly irrational and extremely emotional person would do: I cried. Again.

Then I found my car, disassembled my wheelchair, shoved my green suitcase in the trunk, and began the 20 minute trek back to my apartment. Except I had a perilously low amount gas, so I had to stop at the first exit I found on 295 to prevent further drama from infiltrating my evening. At the B.P., where the gas was drastically over-priced, I stuck the nozzle into my gas tank, and leaned up against the car while unleaded fuel dripped life into my car and out of my bank account. Listening to the cheesy 80's music that blared into the lot of the gas station, I continued to think - about the weekend and about the angry men on the airport bus. The juxtaposition of people like Phyllis with the two mean men on the bus, was almost disorienting; an extreme example of beauty and goodness on one hand, and unmitigated self-righteousness and evil on the other. It was smothering. And I was on emotion-overload from the weekend anyway, so naturally I continued to cry.

Then a man in a red Subaru drove by me in the opposite direction of the gas station parking lot. I felt him look at for me for a second, and keep driving. He continued to drive for about fifteen-feet, stopped the car, and threw it into reverse. Suddenly the red Subaru was directly across from me, stopped in between the two gas pumps. The man rolled down his window:

"Hey. Miss, are you okay?"

(I've mentioned already that I cannot talk while I'm crying, right?)

I squeaked a barely audible, "I'm fine, thank you", but the man was apparently unconvinced.

"Really? Are you sure? Do you need any help?"

I shook my head, but my continued sniffles caused the man to probe a little further into the state of my disarray.

"What's wrong?"

Noting his persistence, I realized that I had to respond. So I did,

"People were really mean on a bus."

(This must have seemed the singularly most ridiculous thing to hear based on the fact that I was pumping gas into a car, and was no longer particularly near the airport or, for that matter, any means of public transportation.)

The man was apparently unfazed and continued, "Okay. What bus? Where were the people mean to you?" (He was definitely talking to me like I was missing some chromosomes, but I can't blame him. Really.)

I tried then to briefly explain what had happened - I was at the airport and I needed to take the bus from the baggage claim to the parking garage, the driver didn't know how to strap my wheelchair in and two mean men became exceedingly impatient etc. (Please remember, though, that I am standing at my car pumping gas. There is no wheelchair in this man's line of vision. My sanity must have been in question at this point.)

He seemed confused, but calmly reassured me and told me not to worry about impatient, "mean" men. I thanked him for his concern and compassion, he smiled and started to roll his window up. Before he drove off, though, he said one more thing,

"Well, at the very least I hope you had an excellent vacation."

Why I couldn't maintain composure for 30 more seconds is beyond me, but I couldn't. I lost it entirely. Again. The man was appalled,

"God. What did I say? What? What happened?"

Still crying I told him, "I was visiting someone I love very much, and she has cancer and it just spread to her brain and it's so, so unfair."

At that point, the man opened his door and muttered, "Sweetie, you need a hug." Leaving his car running, he walked between the two gas pumps and hugged me. It was a real hug too. I held on tightly, burying my face into the strange man's shoulder while I sobbed. He let me cry for a few minutes before letting me go. When he did, he looked at me very seriously and asked if I'd be all right. I told him I would. He told me not to drive while I was crying. I told him I wouldn't. Then I thanked him and he left.

So that is where this story ends. In a gas station parking lot, with bad 80's music, a strange man and a hug that convinced me - at least for the time being - that everything would be all right.