Bars, Beers and Bathrooms

Secretly I don't really get the point of the ADA (Americans with Disabilities Act). Who are these people who determine whether or not a building is "up to code"? Do these people use wheelchairs? Have these people actually seen a wheelchair?

Bars are especially problematic. This poses a problem when you're young(ish), single and want to avoid becoming a social recluse.

A few weeks ago my old teacher friends invited me to Joe Squared Pizza for happy hour. I'd been there before and knew I could get in the building, but remembered a small/inaccessible bathroom -- potentially problematic at this particular point in my disease's progression. Irrationally, though, I ignored these concerns, convinced my roommate to join us, and headed up to North Avenue for a much needed beer (and less needed pizza). Everything was fabulous -- barbecued chicken pizza (yum), sierra nevada beers (also yum) and good company. Unfortunately, though, I was faced with the inevitable need to pee after my first beer and headed to the bathroom while I was still coherent enough to negotiate the potentially problematic toilet situation. I managed to finagle myself through the door, and grabbed onto the sides of the bathroom stall to pull myself up. I shut the door to the stall, pulled down my pants and gracelessly flopped onto the toilet: victory! Shortly after my victorious flop, though, I realized that my descent was slightly longer than usual. In fact my knees were parallel with my chin -- it was some sort of mini-toilet that seemed to be only inches above the ground. Weird. Ready to leave the stall, I grabbed the toilet paper holder with my left hand, the side of the door with my right and leaned forward before pushing up: defeat. I managed to creep about one millimeter in an upward direction before flopping back onto the toilet. Problem-solving in situations like this is rapidly becoming my forte, but there are only so many possible solutions in a bathroom stall. I tried pushing off on the back of the toilet, holding on to the other side of the door, and even opened the door to grab my wheelchair (which wouldn't fit into the stall and was thus completely useless). Ultimately I gave up and convinced myself that someone would inevitably have to pee and would come in the bathroom to help me. So I waited -- all the while wincing at the disgusting toilet seat I was sitting on and wondering when the floor was last washed. Finally, after what seemed like eons, my roommate came in. The first thing she saw when she opened the bathroom door was the stall door open, my wheelchair jammed as far into the stall as I could possibly fit it, and myself, pants down, elbows on my thighs grimacing.

She giggled, "Would you like some assistance?"

"Meg -- I am so glad you came, I have no idea what to do. I've tried every possible way to get off this toilet, and I'm stuck. Does everyone out there think I fell in?"

Meg walked to the stall and pulled my wheelchair out of the way. We decided that I would push up as hard as possible while she pulled me from under my armpits. The plan seemed foolproof: my legs would initiate the proper movement, and Meg's strength would help execute it. Like most of my plans, though, it didn't work -- my legs failed to initiate and Meg failed to execute anything other than a maniacal giggling fit rendering both of us speechless and unable to properly breathe. It really was so absurd. Half of me wished someone would come in to help us, and the other half was so relieved that no one was there to witness the spectacle.

We tried a few more times but kept our success percentage firmly at zero. I decided it was time for Plan B.

"Meg, this is what we're going to do. I'll get on the floor and pull up my pants while kneeling. Then I'll crawl out of the stall to the sink, and I'll grab the sink with one hand and you with the other and get up!" Genius, the plan was pure genius.

Meg didn't like the idea of me crawling around the floor of a public bathroom, but I figured this was no time to concern myself with cleanliness. I pulled up my jeans as much as possible, pushed myself onto my knees, pulled up my pants and began to crawl. The bathroom was pretty small, so I reached the sink in a matter of moments. Once I had the counter firmly beneath my right hand, I pulled my chair closer to my left side and looked up at Meg. All 5'8" of her looked very serious; so serious, in fact, that I started to laugh again. Then she started laughing, and we were both, once again, rendered completely useless.

"We need to focus. We can do this, we just need to stop laughing." Stating the obvious is another one of my specialties.

Surprisingly, plan B was met with even less success than plan A. And now, instead of sitting on the questionably clean toilet, I was stuck on the unquestionably disgusting floor. The upside was that Meg and I were still giggling -- attributable perhaps to the beers we had consumed, but nonetheless preferable to wallowing in what seemed to be a helpless situation.

Just then, a firm knock on the bathroom door interrupted our ridiculous exercises in futility. It was my friend, Peter:

"Hooks, are you okay? What are you two doing in there?"

Meg opened the door. "We can't get Kate off the floor. Care to assist?"

All 6'3" of Peter pushed himself into the small bathroom, rolled my wheelchair out of the way, and heaved me off the ground. It seemed almost insultingly easy for him. I was standing within seconds, buttoned my still unbuttoned pants, washed my hands, and let Meg hold the door while Peter pushed me out.

We returned to our table of friends who predictably asked me what happened.

I intended to share the truth, but Peter beat me to an answer,

"We just had a threesome in the bathroom. It was awesome."

Seattle, Showers and Shrinking Worlds

(Please excuse the lack of chronology here -- I started this in 2008, and just finished it now)

My hiatus from writing lately seems to correlate with my recent trip to Seattle. Even though my ambitious writing goals for the summer were thrown violently by the wayside, I think this was actually a good thing: I didn’t have time to write. Instead, I spent two-weeks further confirming my mythical impression of a city that lies 3,000 miles away from both my family and my job. Ironically, this burgeoning love affair with Seattle was preempted by dread. I found myself – even once the plane touched down – second-guessing my decision to travel at all this summer. Excitement was obscured by MS-related paranoia, and I realized that I was – in some strange way – yearning for a much smaller world.

My body, in continuing with its ten-year habit of disappointing me, has gotten markedly worse lately. Unfortunately, while this decline should correlate with an increased ability to ask for help, it doesn’t. My body and my mind are locked in a constant battle that – if unresolved – is likely to lock me at home.

Thank God my plane tickets were nonrefundable.

Once I arrived, I’d arranged to stay at my best friend’s new house. Meli and I have been friends since I was 15, so I wasn’t too concerned about “imposing” myself on her; it seemed much more daunting to ask her live-in girlfriend for help. And since Meli works an estimated 125 hours a week for an environmental law firm, while her girlfriend, Maura, works from home, most of my days were spent – at least in part – with Maura. Predictably, a measly day into my trip, my MS-related fears were confronted, and I managed to embarrass myself so thoroughly that my stubborn hesitancy to ask for help was (at least temporarily) superseded by practicality.

Less than forty-five minutes before my friend, Claire, was supposed to pick me up for brunch, I fell in the shower. Usually falling is one of my talents; I like to think of my time spent on the floor as an excuse to sharpen my problem-solving skills – once I fall, I need to figure out how to get up. If at all possible, I like to get up before anyone sees me (especially if I’m not wearing clothes). Once I hit the ground in Meli’s shower, though, no amount of problem-solving could get me up. My absurdly long legs were contorted into a gumby-like position on the floor of a soapy, wet, stall-sized shower. I tried climbing up the shower wall, and finagling my legs into a more supportive position, but every time I moved, my legs splayed out beneath me in the soap scum, and I found myself in yet another bizarre contortion. I sat there for a while, letting the warm water careen over me while I contemplated my options: I could remain on the floor of the shower until Meli got home from work, I could crawl out of the shower and hope for better traction on the bathroom floor, or I could attempt to rearrange myself into a slightly more modest position and call Maura for help.

Obviously I chose option 2. Unable to reach the faucet handle to turn off the water, though, as soon as I pushed open the shower door, my body sort of redirected the stream of water directly onto the bathroom floor. Then I realized that even though the top half of my body was able to crawl out of the shower, convincing my wet and slippery legs to get over the metal lip of the shower stall was an entirely new issue. I was defeated, frustrated and rapidly flooding the bathroom, so pulled myself back into the shower, closed the door and wished really, really hard to be someone else. Then I called for Maura.

“Maura? Can you come down here?”

No response.

So I tried again, a little bit louder, “Maura?! Can you help me for a sec?”

I still didn’t hear her voice, but there were eventual sounds of footsteps on the stairs, so I knew she was heading towards me. From the other side of the door, she asked what was wrong, I told her I was stuck on the floor and needed her help. She came in, reached her arm into the shower to turn off the faucet and -- sensing my desperate level of humiliation -- handed me a towel for modesty’s sake. Then, while trying hard not to cry and make the moment even more awkward than it already was, I reached my arms around her neck and she managed to pull me up. She was so nonchalant it was almost unnerving – it seemed like to Maura, picking naked girls off the shower floor was as common as changing the litter box.

Unfortunately, due to the aforementioned soap scum, I needed to essentially reshower, but Maura passed me the shower chair allowing me to wash my feet with far less peril. Thirty minutes later, clean and dressed, I headed to brunch feeling almost normal.

In addition to extreme (though temporary) mortification, I learned a few things from this incident. The obvious: to use a shower chair while showering. The less obvious: that accepting help -- especially from someone you're not 100% comfortable with -- is mutually empowering. I firmly believe that we are all here to give and to receive with grace. And though I don't know if it is really possible to be picked up off a shower floor with grace, I do know that Maura's calm affect allowed me to preserve as much dignity as humanly possible. I fear sometimes, that my need for help will forever curtail my ability to give back and I will remain a "taker" for the rest of my life. I also wonder if I will ever learn to receive help without a certain (often oppressive) level of guilt and humiliation. I do know though, that if I allow my world to shrink as much as my fears urge me to, I will likely never learn.

Humiliation and Revelation

Although the most predominating thought that goes through my head these days is a variation of the phrase “I hate MS” (with use of rotating expletives to connote emphasis and avoid repetition), every once in a while my internal monologue is interrupted by a less angry thought: I have amazing friends. To suggest that my appreciation for the people in my life is equal to my hatred for this disease might be an overstatement, but I am certain that without the latter, I would never realize the importance of the former.

I was scheduled to fly to Seattle this past March for my friend Claire’s wedding. Her wedding was in the San Juan Islands, a few hours north of Seattle, so I knew the trip would involve a rental car, navigation between Seattle and the ferry, and negotiation of a hotel that may or may not be accessible. There were a few other obstacles: I had used all of my sick days during January’s stint in the hospital, and would have to take leave without pay for the wedding; I had just received a second treatment of an experimental MS treatment that essentially annihilated my immune system, thus rendering air travel slightly risky; I had zero confidence in my ability to either drive a car without hand controls OR to get successfully from Seattle to the ferry terminal without ending up in Canada; I had a fear of unfamiliar hotels ever since spraining my knee in an accessible hotel bathroom years ago. All told, I really didn’t want to go. Plus my dress didn’t fit anymore, so I would have to trek to the mall prior to the wedding (almost as daunting as the trip itself).

I expressed these fears to several people and the majority – bride included – advised that I cancel my flight. Taylor, however, was in the minority. Even after explaining all of the potential for disaster, he still agreed to be my platonic date/chauffeur, and ultimately convinced me that a trip to Orcas Islands in mid-March was well within the realm of possibility.

I have an astoundingly small number of friends who I feel comfortable asking for help. Taylor was not, at this point, one of them. Friends that I knew pre-MS are fair game; they grew to know and love me before I inherited my burdensome body. Taylor, however, is someone I met several years post-MS through an ex-boyfriend; two details which made him a less-than-ideal person to rely on for a weekend. I started concocting worst case scenarios in my head, all of which led up to a nightmarishly imagined phone call between Taylor and the ex where Taylor would utter the words, “You totally dodged a bullet – she’s a mess.”

Given the circumstances (real and imagined), Taylor must have offered one hell of a convincing argument because two weeks later, with a new dress neatly folded in my suitcase, I flew to Seattle. Less than twelve hours later, Taylor and I were en route to the San Juan Islands in a rented Toyota Camry.

The weekend – by all standards – was an immense success, but until this disease is fully cured, I should never breathe a sigh of relief and claim victory. There remained one last ferry ride between me and a truly drama-free weekend, but given my successful use of an unaccessible bathroom at the reception (where I was drinking), and my ability to get in and out of a tub shower in the dark (the island lost power), a ferry ride seemed like cake. We arrived at the ferry station and Taylor explained my situation to the ticket collector: our car needed to end up near the elevator so that I could access the upper deck of the boat. The ticket collector alerted the deckhands, and Taylor was given explicit instructions to wait for the deckhand’s signal before entering the ferry. Once on the ferry, cars lined up bumper to bumper, side by side and there was hardly room for a normal-sized person to squeeze in between the cars, much less a wheelchair. Naturally, there was a miscommunication between the two deckhands, and when Taylor followed the urgent hand motions of one deckhand, our car ended up at the front of the boat nowhere near the elevator. As soon as we parked, Taylor jumped out to see what – if anything – we could do to remedy the situation. Realizing the improbability of backing the twenty cars behind us off the boat, I immediately capped my water bottle and began to mull over an entirely new and altogether worse worst-case scenario: peeing my pants in front of Taylor.

I forced the thought from my mind. It was only an hour ferry ride back to the mainland, and – as a result of two days of excessive wedding festivities – I was severely dehydrated anyway. While Taylor and I chattered inanely about everything and nothing, I painted a desert landscape into the backdrop of my mind and willed myself not to have to pee. This worked fantastically until forty-five minutes elapsed, and somehow the four sips of water I’d consumed over the past 48 hours managed to fill my entire thimble-sized bladder. At this point I dropped out of conversation entirely, and focused instead on holding it until we arrived in Anacortes. One of the approximately 9.3 million problems with MS though, is that holding it really isn’t an option. I finally forfeited my pride and told Taylor I had to pee.

Taylor, unlike the majority of guys I’ve met in life, was at least slightly forward-thinking, and had anticipated this dilemma and knew that we were close enough to the front of the boat to access the deck hand's bathroom on the lower level. Immediately after my "I have to pee" admission, Taylor walked in to scope it out. He came back to the car and said it was disgusting but doable, so I relaxed a little. He got my chair for me and while I was transferring from the Camry to the chair, said he'd be right back and once again disappeared into the bathroom. Assuming - as most would - that he was using the bathroom, I started to wonder why he (someone who can hold it) would choose this time to go. By the time he emerged, my need to pee immediately usurped my curiosity and the two of us headed into the concrete-floored bathroom cell together. I rolled up to the toilet, preemptively wincing at what was sure to be a urine-stained disaster and was pleasantly surprised that it wasn't as bad as I feared. I unbuttoned my jeans, let Taylor help me stand and pull them off and flopped onto the seat for instant relief. Moments later, hands-washed and back in the car, I remarked that the bathroom was nowhere near as disgusting as I'd feared. Taylor responded nonchalantly:

"Yeah, I cleaned the toilet with paper towels and soap before you used it, but I didn't do the greatest job."


This disease is humiliating, humbling and demoralizing; I have lost even the smallest bit of control over things that I used to take so easily for granted. Without this loss, though, would I ever know that a friendship's true value could be revealed in a filthy, ferry bathroom?

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.