A Pause on Hope

Resting from recovery

“Hope is a verb” has been my mantra since the day I saw it on a sweatshirt and I’ve been living it since the day I hit rock bottom in April 2021 and decided not to quit. I started making charts the next day measuring my ten minutes of walking by counting houses and recording my breathing exercises, my driving, my doctors appointments, and eventually my therapies, all in the hope I was improving, inch by inch. 

And improve I did. You’ve all watched or listened or read about my progress and cheered me on through the ups and downs. Your love made it possible to keep hoping that I could make it through the downs, holding on for the next hour, next day, next week until the up would appear. Hope paid off when I could pause, look around, and see the gains like walking with friends, returning to school part-time, and traveling with my family.

And then I enrolled in the Reverse-LC trial at the University of Minnesota, the greatest hope of all. Hope for an answer, hope to advance science, hope to get my life back. 

While the drug didn’t give me a full recovery, I did see marked improvements in fatigue and cognition. When I came off the drug, I had some setbacks, but I didn’t feel like they were major. Until the final testing for the trial in August. It was physically and mentally harder than I expected. The regression was hard to ignore. 

Especially as I traveled home. I’d been successful traveling back and forth while taking the medication during the trial. I needed wheelchair assistance and Brian to meet me at baggage claim but I was mostly able to communicate. This time I couldn’t. Because of the volume of travelers at Midway on a Saturday afternoon in August, there was no wheelchair attendant to take me to baggage claim. I waited on an empty plane for 15 minutes and then at the crowded gate for 25 minutes. Once I was finally wheeled away from the gate, I was pushed halfway down the terminal and left just off the walkway for another 20. It was no fault of anyone who worked there, they were swamped and I was overlooked. Between the crowd & noise of the airport, the stress & pain of medical tests, my body shut down. I sat in the wheelchair and cried. 

I cried because I’d finished the trial after an entire year and yet I couldn’t help or advocate for myself.

I cried because I’d come so far from where I started and yet I had no control over my body.

I cried in defeat of still having a mountain to climb with no new treatment, no new therapy, and no new trial in sight.

For five and a half years, I’ve hoped and fought for the next thing, trying to keep the grief of being so far from fully functioning, the grief for all that I’ve lost, quiet. Although I don’t talk about it much, my grief is a companion I wish I didn’t have and fighting off grief, gratefulling grief, compartmentalizing grief every day is fucking exhausting. 

And I can’t fight the exhaustion anymore. For now. 

So, for now, I am putting a pause on hope and I am going to rest. With permission from my therapist, Jamie Lynn Sigler on MeSsy podcast, and Kate Bowler in Joyful Anyway, I am going to live where I am, not reach for the next thing, sit in the shit of being disabled and find joy in the small things I already know the cost of: watching the White Sox & Bears, walking with Brian, watching El cheer, visiting the Caroline & Liz at school.