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 fiancé 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 fiancé 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.
