Historically I am a bad
sleeper. I can date my first bout of insomnia back to the age of
seven when, for whatever reason, I was plagued with the
anxiety that accompanies sleeplessness. Make no mistake, I was seven
years old, there was absolutely nothing in my life to be anxious about, but
it was dark, and I was alone and everyone else was sleeping
and I was supposed to be sleeping, and oh my God why couldn’t
I sleep? Reading became an obsessive antidote to
this anxiousness from that point forward, and – even throughout high
school – I would invariably fall asleep with the adjacent reading
lamp still on and my face plastered against the pages of a book. My
sleep-related anxiety even prohibited me from reaching over to turn the light
switch off, as the darkness indicated time to sleep, and despite my heavy
eyelids and my barely conscious ability to comprehend the written word, the
movement of my hand towards the lamp would immediately catalyze a racing heart.
I used tiny reading lamps throughout college, so my roommates could deal with
the light, and years later, once my disease had rendered my fingers unable to turn
the pages of a book, I could still navigate a Kindle – backlit appropriately
for reading in the dark, and easy enough to resume if I fell asleep and woke
myself back up. For a few underappreciated years, the Kindle was the perfect
solution: I could read without concerns about the anxiety-provoking light
switch. Unfortunately, it too was only a temporary fix as multiple sclerosis
soon came for even my left thumb, leaving me alone in the dark with nothing but
my thoughts. But my thoughts were darker than my bedroom, and I could not sleep
without something, anything, to occupy my mind other than my own fears. At
first, audiobooks seemed a natural solution, but I frequently fell asleep in
the middle of a chapter only to wake up hours later with the book over and no
memory of where exactly I had lost consciousness. Eventually, I was gifted an
Amazon Echo and was introduced to a brand-new anxiety antidote: podcasts. So no,
I no longer sleep with the light on, but I do frequently find myself snoring
about 15 minutes into an episode of This American Life, the Moth or – my
personal favorite – Terrible, Thanks for Asking (TTFA).
A recent episode
motivated me to reach out to the host, Nora McInerney, and my friend Lena
convinced me to publish my email in a blog. So here it is:
Hi Nora!
I am an avid TTFA listener for a few reasons: 1. I am
occasionally predisposed to self-pity (which I abhor) and I appreciate that
your show offers much-needed perspective. 2. I believe deeply in the philosophy
that two things can be true at the same time – your life can be hard but
simultaneously joyful, painful but simultaneously rich, frustrating but
retrospectively hilarious. In short, I was diagnosed with multiple sclerosis in
1997. I was 19 and a sophomore in college where I had (ironically) been
recruited to run track. Although my original plan was to "beat" my
diagnosis, deal with the temporary setback and get back to running, my
immune/nervous system had other plans. I was never able to run again yet did –
despite being rather gangly – attempt to throw the shotput in order to stay
involved with the team. Three years later I graduated with my BA in history and
got a job through TFA (teach for America, not to be confused with Thanks for
Asking) teaching middle school in Baltimore Maryland. My disease had progressed
significantly at that point, but I was still able to walk – albeit with a noticeable
limp – and I kept major progression at bay by taking steroids every four months
(great for the skin by the way). I taught for 12 years (although teaching
middle school nearly killed me and after three years I got a job teaching high
school), but by April 2012 I was using a power wheelchair and could no longer
use either of my arms reliably and was paying (out-of-pocket) for live in
caregivers. When I was no longer able to sign a hall pass, I finally retired.
Leaving teaching was, and still is, the hardest loss I ever suffered. It
obviously sucks not being able to walk or use my arms anymore, but at that point
teaching had become my identity – even more than running had been in college.
All this to say, your "Who Cares part 3" episode
really resonated with me. When I finally left teaching I was paying more for
caregiving than I was making as a teacher (with tenure and a Masters from
Hopkins). Luckily I had a number of supportive friends that encouraged me to
start fundraising – probably much like you had to do when you finally accepted
that your husband needed part-time care. Asking my friends, most of whom were also
teachers, to donate money to me was a hard pill to swallow, but with endless
amounts of help from a support system that I'm still not entirely convinced I
deserve, I have held an annual caregiving fundraiser every year since 2011.
Even now that I retired from teaching and live in my childhood home with my mom
(my dad also has MS and lives in a nursing home, something he also pays for
out-of-pocket), the fundraisers have continued (although I did have to skip the
in-person event this past year thanks to Covid). If it were not for the
generosity of my friends, family and community (I currently live in Ithaca New
York), I have no idea how I would survive. I spend – on average – between $500 and
$800 a week for an annual total that surpasses my SSDI + my teaching pension.
And yet because I receive that annual income, I am unable to qualify for any
type of public assistance. It is a double-edged sword, and fortunately (?) one
that the general population knows nothing about.
Also, without
working hands, this email is only possible thanks to my Dragon dictation
software. It gives me a voice and makes navigating my computer possible. It also
occasionally makes me lose my mind and want to throw my computer out the window.
But that is why I see a therapist!
With gratitude,
Kate Hooks
