My Mom

To this point, I’ve successfully avoided writing a story about my mom. The obvious question is why, but the answer isn’t easy. My mom takes the brunt of my emotional crises while trying her best to convince her 5’4” petite frame that she can help me get all 5’10” of my stubborn body off the ground. This relationship, to me, seems particularly parasitic, because after raising me for eighteen years I proceeded to almost immediately replace my teenage surliness with a neurological disease. And while I made it through college and grad school and remain physically out of her hair while teaching in Baltimore, I still spend most of my summers with my family in Ithaca. I should note, too, that while I reserve a certain amount of selfless stoicism for my students and friends in Baltimore, when I’m around my mom, self-pity, fear, sadness and anger creep into my daily repertoire of emotions with an alarming frequency. This leads to a whole new unproductive emotion: guilt.

In the spirit of honesty, too, I am more than a little angry with her sometimes. Mainly because I’m here and I’m scared and sad and lonely and -- let’s face it -- she is half responsible for that. Also, though, because moms are supposed to make things better, and she can’t.  She cannot make this better.

But man does she try.

I can’t remember now if it was last summer or the summer before, but it doesn’t really matter. All of my summers in Ithaca are characterized by long, lazy swims in Cayuga Lake. Except when it involves me, nothing about anything is really lazy, and pretty much everything requires a little bit of help.

(Or a lot of help as the case may be.)

Swimming in the lake takes a lot of problem-solving. My family does not own lake-front property, so it’s not like I can just wheel to the edge of the dock and dump myself into the water. Instead, my mom and I drive down a winding, gravelly, steep road to a secret and secluded spot at the water’s edge. There we have to park a few meters away from the beach to prevent the car from getting stuck in the gravel (which, incidentally, has happened), and I need to walk approximately twenty steps down a rocky hill to get into the lake. This past summer, it became painstakingly obvious that twenty steps were not going to happen, so I somehow convinced my mom that it was a good idea to get onto the ground and roll. Minutes later, dirty lake pebbles stuck firmly to my thighs, I rolled gleefully into the cold water. To clarify, the water was in the mid-70s – which sounds balmy enough unless you’re in it. It was also choppy. Specifically there were white caps, and once in the water, bracing myself amidst the tumult to adjust my goggles proved impossible. Declaring my leaking goggles “good enough”, my mom tossed me my buoy, I slipped it between my legs and took off.

Except I didn’t really “take off” anywhere – the waves made the quarter mile swim to my friend’s cottage seem like a complete impossibility. I felt like I had been dropped into an endless pool and the resistance was way, way too high. Three strokes forward and breathe to the right, three more strokes forward and another breath. On the sixth breath I tried to look forward and realized I was approximately one meter closer to my destination than I was when I started. I also got a mouthful of lake water in the face and a wad of seaweed wrapped uncomfortably around my neck. I kept going, but on the next stroke a wave managed to knock the buoy out from between my legs. I stopped swimming, attempted to stand on the rocks and watched as my blue buoy got sucked out towards the middle of the lake. Not knowing what to do, I inched closer to the shore and called to my mom, who was walking along the shore with my dog,

“MOM! I lost my buoy, I need to head back.”

It was shallow enough that I didn’t think I would drown, but a growing sense of panic was rising inside of me. Every time I got hit in the face with a wave, it grew, and when I looked for my buoy it seemed further and further away. I continued back towards where I'd started, but it proved difficult. It’s funny, when I explain to other swimmers that I can’t use my legs when I swim, the response is generally some variation of, “I don’t use my legs either!” What these people fail to understand, though, is that their legs are either significantly more buoyant than mine, or they use their legs more than they know. First of all, I am the densest person in existence – I cannot float. At all. If it weren’t for my strangely innate Will to Live, I’d stop flailing my arms for long enough to prove it to all disbelievers: I would drown. So without a buoy between my legs, I swim at a forty-five degree angle until my shoulders feel like they will spontaneously combust, then I either grab onto something, reach for a buoy (which I usually keep in an accessible location – not the middle of the lake), or panic.

Logically, the water was shallow enough that I could pull myself through the water using my arms. Two things, however, made that difficult: the waves, and the sharp mussel shells on the bottom of the lake. I attempted the arm-crawl technique for the first few minutes, but keeping my head above water was impossible with the apparent tsunami-conditions of the lake.  Plus I cut the bottoms of my hands.  So I headed out to the deeper water and tried to swim with all four limbs.  Luckily, since I hadn't gotten too far in my journey before losing the buoy, I finally saw my car on the beach, and could just barely make out my mom's silhouette.  I let the waves push me towards the shore, arm-crawled a few more feet and pushed myself onto my knees to pull the foggy, leaky goggles off my face.

"I made it!"

I then noticed that my mom was wet.  Her shorts and shirt were saturated.  My dog was in the car.  I immediately imagined the worst: my dog had pulled my mother into the lake.

"What happened?  Why are you wet?"

Before I relay her answer, I must offer a few crucial details about my mom: 1. She does not swim.  She knows how to, but I have no actual memories of my mother doing anything other than splashing around the shallow end of a sparkling clean pool when I was a toddler.  2. She finds the lake "gross".  When I tell her stories of being choked by seaweed, or encountering water snakes while swimming, she visibly shudders.  Even on the nicest, hottest days at Cayuga Lake, she stays on the shore and utters hyperbolic statements such as, "I wouldn't get in that water for a million dollars."  3. Even while walking along the shore of the lake with only my dog, she is put together.  I am a huge advocate of donning sweatpants, t-shirts and even the occassional pair of PJs in public, but not my mom.  Even in her scrubbiest lake clothes she would still meet the approval of Stacey and Clinton of "What not to Wear." 

So the question, again, was "What happened?  Why are you wet?"

The answer: "I jumped in and tried to get the buoy."

Ruminations on the Eve of 2010

There is an age-old adage that time heals all wounds. I scoff at that adage. Time has done nothing helpful for my neurological disease; rather than healing anything, in fact, it seems that almost thirteen years later, the wound is much bigger; it's now gaping and infected.

I recently joined a group on facebook called (perhaps inappropriately) “fuck 2009.” I joined because any year that starts with a concussion, a spinal tap, and two weeks in the hospital and goes downhill from there, is one I want stricken from my memory. I still possess a stubbornly optimistic streak, and joined under the hope that 2010 will offer some type of reprieve from the downward spiral that seems to have usurped my life’s current trend. Then, sitting on the floor of my bathroom after a messy transfer between the shower and my wheelchair tonight, I had the sickening realization that no year, since 1997, has been better than the last. This realization made me want to flush myself down the adjacent toilet, but realistically I knew I would not fit.

So here I am, on the eve of New Years, wearing my pajamas and wondering if there is any point to resolutions. Practically, I know that the things that clearly need improvement are decidedly beyond my control. Regardless, here is a list of my hopes for 2010. If the universe could cooperate with these aspirations, I’d be most appreciative:

• First thing first: I need to rediscover my coping mechanisms. They appear to be MIA, and I’m desperate for their return.
  
• I want to keep my job. I have no concerns about teaching right now: my kids learn, they love me and I them. It’s a symbiotic relationship of sorts. But the hassle of life in general is getting, well, a bit oppressive. When it takes twenty minutes to put on a pair of pants in the morning, I wonder sometimes if teaching is a realistic long-term plan. Side note, unless aforementioned coping mechanisms are located stat, I must teach. It’s imperative. That is all I have to say about that.
  
• I want to swim again. Swimming is crucial to my sanity, and I haven’t been in the water since August. Turns out you need functional arms to swim. Interpret as you will.
  
• I want to write more.
  
• I want to find replacement agents for my classroom.  Actually, I don't want to, I need to – Ashley and Anthony graduate this May, and while I am 100% certain that I will never love anyone as much as I love the two of them; the bottom line is I need help in order to do what I love to do.
  
• It would presumably benefit my arteries to eat less dessert. That’s a tough one though, because self-restraint is not my forte and my roommate is the most amazing baker on this hemisphere.
  
• I want to meet the love of my life. I am currently concerned he does not exist.  (I'm equally concerned that if he does exist, I will be too wrapped up in my own anxieties to recognize him.)
  
• I hope not to screw up my taxes this year. Paying the IRS over $500 in December was an unexpected (and most unwelcome) expense.
  
• One of my favorite people in life just moved from Baltimore to Rwanda. I need to find a new friend who makes me laugh even a tenth as frequently as he did.

I feel as though the majority of these resolutions are beyond my control, but perhaps by documenting the things I want, I will be more open to receiving the things I need. Please. Fingers crossed.

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?