The topics for my NaFaCaMo posts just keep on coming at me in quite serendipitous ways. Just yesterday, I read a substack post written by a dear writer friend of mine, Tanya Ward Goodman. Tanya happens also to have been a caregiver and wrote a brilliant memoir about caring for her father who had early-onset Alzheimer’s disease. The book is called Leaving Tinkertown, and it’s magnificent. Her substack is called Mighty Fond of You, and after purchasing or borrowing the book, ya’ll should go on over there and subscribe.
Anyway, where am I going with this post? It’s really a sort of paean to the internets, to social media, to all the beauty of the world wide webs that has connected me to so many extraordinary people in the caregiving and disability world. I can tolerate a good social media bashing because I agree with many of the points that folks bring up about how it’s destroyed our culture or democracy or livelihoods or sense of nature or mental health or yadda yadda yadda. Some of that is quite ableist, though, in my opinion, as it doesn’t account for the extraordinary connections and friendships that have blossomed because of social media. As much as I want to quit Facebook, for instance, to rid myself of the stink of — well — I won’t elaborate — even yesterday I read a post by a dear friend of mine who I met via Facebook about a recent genetic discovery her family had made about their son who also struggles with epilepsy. This is the same woman, Heather Barnes Jackson, who, along with Paige Figi, founded Realm of Caring, the organization that revolutionized cannabis medicine. I found them on Facebook many years ago. They are my friends, both on Facebook and in real life. They and the many families I met via Realm of Caring and the Stanley Brothers saved Sophie’s life. Literally. I am as invested in their and many others’ lives as I am with any number of “real life” friends.
When Jason Lehmbeck and I were connected via another friend who’d I’d grown quite close to via the internets, we started a podcast and interviewed at least fifty fellow caregivers. I think I posted the link to the podcast on an earlier NaFaCaMo post. We drew on these amazing women and men via our online networks, and we found that when asked what helped these caregivers the most, the majority of the time the answer was social media and connecting with groups of fellow caregivers, parents and persons with disabilities on Facebook.
A caregiver’s life can be incredibly isolating, as can a disabled person’s, and when I think of the early years of Sophie’s life, when I lived on the top floor of a brownstone on 73rd in New York City, had no computer or access to other people who were going through the same thing — well — I can’t imagine how grim that life would’ve been without the connections I’ve made because of social media and the sense of belonging and community that flowered from them.
This afternoon, on the advice of Tanya, who wrote about it on her substack, Carl and I went downtown to a wonderful free exhibit at the Los Angeles Public Library called “Something in Common.” I took a photo of the description and posted it at the head of this post, but this is what it said:
For almost every imaginable interest, belief, cause, activity and facet of identity, you can find a group dedicated to preserving and furthering it. This exhibition is a celebration of the things that bring us together, the sometimes unexpected ways that we find and form community, and what we can accomplish collectively that wouldn’t otherwise be possible.
This post is a celebration of the thing that brought so many of us caregivers together. I am deeply, irrevocably changed by it, enriched and deeply grateful. I thank each of you in my deep community for being there, always.
Add me to the list. Social media was a lifeline when I was raising Maggie. There is a lot of bad, but there is a LOT of good too.
It really can give us so much. I keep trying to remind myself that social media is still very young, and those who created it have tried to ignore its potential to harm. Which means there’s all that potential to make it better and let is serve the world’s needs in more ways like you’re describing.