Wow! It has been a long, long time since my last post here. I didn’t actually realize how long it has been.
The last months have been a whirlwind as we have tried to finish some accessibility projects, find an accessible vehicle, take care of all of our physical and emotional needs, struggle to get access to new treatments, and take Scout for all of her desired walks.
It has been a time of what I refer to as thrashing — wanting to slam doors and yell at the injustices in the world, and often, in healthcare. How can patients be denied the opportunity to even try treatments? How can we be FIFTY-ONE days past the approval of a treatment for ALS (not a cure, not even to improve things, just a possible way to slow it somewhat), and we can’t even get the “patient care” team of the pharmaceutical company to respond to multiple requests as to where we are in the process?
It has also been a time of thrashing in terms of grief.
Recently, a former student died of an overdose. Unequivocally, he was the brightest student I ever taught — and over the course of my teaching career; I have taught many more than a 1000 students. He made me laugh. He made me think. He questioned me constantly. I learned far more from him than he did from me. His light shone brightly, even as he struggled. I was, and am, proud to have known him, and he left an indelible mark on my heart and mind.
When Sam died, this student (now an adult and the parent of several children) came to see me at my work to express his support for all of us. At the time, he’d been in recovery for a long time. We sat and talked, and his understanding of my grief, and his gentle love and support, made me cry with gratitude.
COVID messed up that recovery, as so many recovering addicts could not get access to the supports they needed.
That’s not okay. We need to do better, period.
Everyone is worthy of love, support, appropriate/affordable/accessible care. Period.
As I thrashed, I also realized that it has been a time full of love and support. Beautiful artwork arriving in the mail. Mystery postcards expressing support and love. Countless friends and family stepping forward to offer whatever help they can. Pruning, raking, fixing fences, walking Scout, helping Paul explore the natural world, all have happened, and are so appreciated.
So, I’m back — still thrashing, still grateful.
Won’t you join me in both being grateful, and in a commitment to making our world a better place?