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Saturday, May 11, 2013

Awesomeness. Times two.


Close to a decade ago, I randomly regained contact with Lesley, a college friend from Colgate. We started communicating via email for reasons I can't even remember and managed to become closer than we had probably ever been in college. She told me that she planned on visiting Baltimore during the spring–time with her fiancĂ© and we decided to meet up. Over that weekend, in addition to hanging out in Baltimore, we also ventured to DC to meet up with her best friend from high school, Elizabeth. Although I don't honestly remember a lot of the details from the weekend, I do remember staying in the Four Seasons Hotel with Lesley and her fiancĂ© and I do remember meeting Elizabeth. Immediately I got the sense that she was my kind of people, and after meeting for one evening in the bar of the hotel, we managed to strike up a lasting friendship.

For the next several years, I would occasionally visit her in DC, and once I could no longer drive she would come up to Baltimore. Elizabeth was someone I felt immediately close to, like I could confide in her without fear of judgment. When we first met, I was in the process of weaning off an anti-anxiety medication that I had taken (in my opinion unnecessarily) for two years, and I felt vaguely like I was coming unglued. Despite the fact that I shared the details of my personal mental crisis with essentially no one, I felt comfortable talking to Liz.

Five years later, I was finally off the drug and felt significantly less crazy but was – as is a theme in my life – significantly more disabled. She came up to Baltimore a few weeks after I had gotten out of the hospital post belly button surgery. At that point, Meg was still my roommate but spent many of her weekends in New York City. I remember confiding in Elizabeth that I did not know if I would be able to teach the upcoming school year without having someone around to get me out of pickles on the weekends. I was afraid it was time to retire from teaching, and I absolutely was not prepared for that. Liz seemed positive that all I needed to do was hire someone to help me out on the weekends. Her assertion that the solution was so simple blew my mind; I can honestly say that no matter how obvious it seemed I had never seriously considered paying someone explicitly to help me get in and out of bed, or in and out of the shower. In fact, I had never even considered that people existed who would want such a job. Liz told me about care.com and when I informed her that I had zero money for an additional expenditure, she convinced me to start fundraising. I had raised money for my neurologist's quest to cure this disease, but I couldn't quite wrap my head around the idea of fundraising for myself. It was Liz, in fact, who helped me put a donation button on my blog and helped me brainstorm ways to raise enough money to pay someone more than minimum wage for five, then 10 then upwards of 40 hours a week. (The fact that insurance contributes nothing towards personal caregiving costs still astounds me.)  So basically, it is all because of Liz that I was able to teach for my final two years while paying for essentially full time help. I need to remember things like that when I am entrenched in a cycle of negative thoughts: I have fabulous people in my life.

Fast-forward a week or two, the donation button was on my blog, I had written what I considered an embarrassing "plea for help", and I had posted an ad on care.com searching for a part time caregiver to help on the weekends. Almost immediately after posting the ad, I received an email from Kristen. In her email, she was honest to a fault, and told me she had no experience with adults with disabilities before, but something about my ad compelled her to write to me. She had a picture on her care.com profile that practically made me sick to my stomach: she was so pretty. And I thought she was way too skinny to be able to move me around or transfer me without injuring herself. Nonetheless, I invited her over to meet. If possible, she was even prettier in real life, but she also was so earnest and authentic and seemed so genuinely excited to work with me that I knew I needed to give her a chance. When I expressed doubt that she would be strong enough to transfer me, she held up her skinny little arms and said, don't let my size fool you, I am freakishly strong. Over the next 2+ years, she proved herself right.

Kristen, for as many hours as I saw her a week, is one of the few people who, to date, has never once disappointed me. She was never even late. Seriously, not once. And for an entire semester, she showed up to get me ready for school at 6 AM. She helped me get dressed, made me breakfast, packed my lunch for school and helped me get into my car. After school she met me at Kennedy Krieger twice a week for "open gym" – – Kennedy Krieger is Baltimore's International Center for Spinal Cord Injury, and for a pretty meager fee, during the months when I was not in active therapy, they let me use their equipment any time I was able. I was fortunate enough to get physical therapy at Kennedy Krieger for almost 5 years and there is not enough room in this story to explain how extraordinarily lucky I was to live in a city with access not only to great health care, but with access to a place like Kennedy Krieger. The therapists there, who I am certain could not possibly be paid well enough, literally changed my life (and I am sure the lives of countless other spinal cord injury/neurological disease patients who were lucky enough to get therapy there).  Every physical therapist who worked with me and my egregious disease, was able to not only push me to attempt countless numbers of exercises – many of which I failed to complete – but to keep me laughing at the same time. They treated me with enough patience and compassion that despite my urge to throw myself on the floor and elapse into a fit of uncontrollable tears, I was able instead to try again. Anyway, I digress. The point of this story is about Kristen. And for two hours after school twice a week, she attached me to an FES bicycle so that I could use my unresponsive muscles in a somewhat functional manner for almost an hour, and once I was finished she would throw me on one of the mats and stretch me until my stiff and spastic legs were temporarily calm and manageable.

In addition to helping me at 6 AM every morning, she also helped me on weekends when Meg was in New York City. At that point I was still independent enough that I could avoid overnight pickles as long as Kristen helped me get into bed in the evening, and out of bed in the mornings. In addition, she made my bed, cleaned my apartment, picked up my dog's poop, did my laundry and made me dinners. The laundry list of things that Kristen helped me with ranged from the most obvious of caregiving essentials to things that I could not even conceive of another person helping me with: shaving my legs and armpits, getting me on and off the toilet, the list seems endless… If civilization is measured by how it treats its weakest members, then I believe that a person's character should be measured the same way. Kristen saw me at my most vulnerable more times than I can count, but a year ago April, when I was headed back to Johns Hopkins for yet another extended visit, I felt perilously close to coming undone.

Kristen and I were scheduled to meet at my apartment after school to go to Kennedy Krieger together, but at some point during the school day I had reached the disheartening conclusion that I needed some type of acute MS treatment that neither Kennedy Krieger nor Baltimore Polytechnic could provide. I talked with my doctor and arranged a 10–day IV steroid treatment in combination with five days of plasmapheresis. Unbelievably, my doctor was able to find me a bed on the neuro floor of Johns Hopkins for that night. I explained this decision to Kristen after school, and she immediately changed gears from therapy Kristen to compassionate Kristen. She helped me pack a suitcase for what I presumed would be at least a 10–day stay in the hospital, helped me take a shower in preparation for my 10 day stint with no proper shower, and then – after feeding me dinner – she even agreed to drive me to the hospital.  Once at the hospital she brought me in to the waiting room and though I begged her to go home, she refused. I swore to her that I would be fine, and that someone would help me get my suitcase up to my hospital room, and that it was completely unnecessary for her to stay; especially because it was already after nine and she had class early the next morning. She would hear none of my reasoning, and replied that she would not leave me alone merely because had she been in the same circumstance she would not want to be left alone. No matter what I said, she would not abandon me.

I know that her line of reasoning was merely the Golden Rule: treat others as you wish to be treated.  But the golden rule is much easier to apply when circumstances are convenient, and essentially nothing regarding me is ever convenient. Plus, how can one really treat me as they would like to be treated when mine are an almost impossible pair of shoes to imagine being in? Kristen's most unique trait then was her uncanny ability to live empathy. She didn't just act empathetic, she lived it.

Kristen and I have remained in touch since I moved back to Ithaca, and has even come to visit me twice. But this past fall, when her potential employer called me for a job reference, it was literally impossible for me to express her awesomeness without tearing up on the phone. Meg used to talk about wishing we could have certain people in our pockets to either calm us down or keep us happy at all times. If I could have someone in my pocket it would be Kristen, but I suppose I would feel guilty keeping all that goodness just to myself.

3 comments:

Kristen said...

Thanks for this. You are amazing. I'm the lucky one to have you in my life, not the other way around :) Can't wait to see you again in August! Love you to pieces!!!

Lucia McKelvey said...

Wow...What a blog entry. So blessed by your supporters! Kristen, you sound like an amazing person and, Elizabeth, awesome job at the fund raising push! Hang in there girl, you'll be A OK!!!!

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