Another question I get from people is some version of, “How can you be okay with becoming disabled?” Ummm, I’m not? Sometimes? But it’s okay?
I mean, if you’re seeing me it means I’m having a good day. I have the energy to get out of bed, I probably took a shower, and I put on (ugh) clothes. So I’m probably in a good mood.
Also, I’ve been sick now for 29 months. I’ve had a lot of time to adapt. I’m not in pain. If I were, this would be a completely different journey.
What I’ve learned is that there are a lot of people out here who are disabled. There is a lot of invisibility in this group. Long Covid has, by dint of adding so many more people to the cohort, elevated the awareness of the acronym-afflicted (CFS, CFIDS, ME, PVS, VICD, POTS, etc). Because so many other people are experiencing this right now, there is more openness and acceptance and vulnerability to sharing about it.
Someone along the line recommended this book, which I just finished reading (and yes, that means I read the first 30 pages and skimmed around the rest because that’s what my brain allows me to do right now). The author’s experience echoes mine in terms of symptoms and adjustments (but not isolation and disbelief from medical providers). And I discovered that without studying it I accidentally became mostly Buddhist.
I celebrate the things I can do. I mourn the things I have
lost. I accept this is my life now. I set routines and expectations based on realism. I have not lost friends. You all showed up.
My family is awesome. Brian is the best caretaker I could have ever hoped for.
I now understand why retirees become birders. Because when I walk the same 4.43-mile route every day I see my birds and watch their chicks grow. I learned the word “whimbrel” and know it is not a mere sandpiper. I’ve seen the damn sand hill cranes every week. The great gray owl was a treat. (My friend Jenny claims retirees get into either birding or genealogy because they are good, basically endless projects for people who need something to do. She is not wrong.) But it’s time to change things up.
It’s time to stretch a bit. We’re hitting the road.
∼Lucy
