Sunday, February 28, 2021

On Podcasts

 

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.

 

So thank you. Thank you for putting that valuable information out into the world and thank you for understanding and validating not only people’s pain, but also their resilience. I'd love a chance to share my story with you in more detail if you are interested, including but not limited to my somewhat recent attempt at a relationship which ended five years later in an unimaginably painful way.

 

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

 

 

 


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