I can’t seem to stay awake today. I wonder if it’s the weight of history pressing down on me or just my disease which continues to progress in unfathomable ways . The flares, which bring blood, swelling, and extreme heat and nerve pain, continue to daily plague my feet and legs, only now, they have managed to jump upward and daily cause the same symptoms to my face and ears, even crawling into my sinuses so I can’t breathe through my nose for hours at a time, usually in the early evening. After a few hours of that, I feel like someone has punched me in the face…repeatedly.
Add MLK day to the mix, whose assassination I was alive for, (a fifteen year old teenager who wore her heart on her sleeve and felt devastated), and the inauguration today of a man I do not want to see as president…for too many reasons to list…plus I am trying to keep this substack from being overtly political…well, what I am left with is a fatigue so overwhelming that I slept through much of the day. I never nap. Yet today, my body refused to remain awake.
Tonight, we are heading for single digit (fahrenheit) cold. A delightful snow came in yesterday, coating the land with a white frosting of tiny crystals I can see from my windows. Woodpeckers are fighting over the suet to get a few last bites before the dark and plummetting temperatures take hold. I worry about the birds and small mammals and hope they have found places to stay warm for the next three nights.
Mostly, I am just saying hello to all of my friends who have joined me in this site, allowing me to reach out from my bed and touch you, even though I can no longer visit you in person. I hope wherever you are and whatever you are feeling today, that you are warm and tucked in somewhere safe. In the end, for me, as I try and cope with this illness and new version of my reality, as well as the world events, it’s friendship that matters the most. And love.
Vati--
It’s important to keep telling the story from your bed and reaching out--you’re right: it’s the friendships and connections now that matter, both in the face of your illness and in this global time of chaos, anger, fear, and dysfunction. We all are going to need each other more than ever.
Your illness has impacted your life in every way--in big, small, subtle, and surprising ways, in every aspect of daily living. I can’t even imagine the anxiety and discouragement of trying everything and still being in so much pain, of living in fear of what new symptom will arise, of watching life and your dreams streaming by while you work so hard to keep equilibrium. I say this not as pitying but in astonishment at this crazy-awful thing that has happened to my friend, and in recognition that I doubt my own cowardly self would be continuing to write, engage, be curious, laugh, create, manage affairs, and be social--from the confines of a bed and in the face of intractable pain.
I keep wanting life to be fair. I continue to wish for a magic wand. In the absence of fairness and magic I can only hope for moments of grace and peace for you, and maybe tiny miracles that make you smile. Sending that hope across the miles.
If only I could crawl into bed with you like we used to when we were younger! I’d hold you gently and wish away all your pain. You’re always in my heart 💟