Posted on December 19, 2016
Today several people took an hour out of their busy holiday schedules, to come hear me speak on the history of Tarot. They showed their appreciation for my presentation, with a gift of $25.
That contribution was so sweet, but even sweeter was the fulfillment of being able to contribute something myself, to them, that they found interesting and valuable. Being disabled myself, while caring for a disabled daughter, means that I don't get to go out and do things much, and it's not only fun I crave. Far more, I crave to be out doing useful and helpful and interesting things. I crave engagement.
So, it was really cool to be able to be a speaker, and share some historical research. I had that energy boost you get, when you've done good work and you know it. We severely-disabled people miss that feeling, as much as or more than we miss parties or travel.
I do miss parties and travel a lot. At this time of year it's bittersweet, to hear of others' holiday plans and not be able to participate in any of it. I just found out by accident that other members of my family will be gathering a few hours away from me. It's been years since I could join them, though before we fell ill my kids and I used to drive many hours to share holidays with family. I'm happy for them, that they'll be together celebrating, but I do wish... and for Hazel, oh how I wish! 23 years old, and for her, Christmas will just be another day of pain management.
But far better than a party, yeah, it was fun to give a talk today, and to receive a donation, and to feel almost like a worker and an earner again. I was able to do so through the power of Virtual Reality. I could not have done it in the real world. Just getting dressed and traveling to a venue would cause so much pain and exhaustion, I wouldn't be able to give a talk. But in a virtual world, I stood at a podium, and shared information and illustrations, and took questions, and was applauded and rewarded. I'm so grateful to have been able to do so.
Earlier this week, I received another donation, in a most moving way. It came in an anonymous card: $300 cash, handed me by our social worker, who couldn't say who it was from. The message on the card was very moving:
"In recognition of your unflagging generosity to those you love, here is a token of my admiration."
My illness is invisible. That is, I don't look sick. You can't see by looking at me, what I'm bearing up under. And then there's an additional sense of invisibility, in being housebound and unable to work. The things I do, the efforts I make, that cost me so much pain and exhaustion, seem to me to be invisible to others. It's easy for me and for Hazel, too, to think we are not seen or cared about and that our efforts are not appreciated. So those words of appreciation meant a great deal to me.
Thank you, anonymous donor, and thank you, Aether Salon, for helping me feel like a loved and cherished member of the human family this holiday season! Thank you for seeing me. Thank you for helping me help Hazel.