I woke up this morning to the sound of a knock on my front door. My aide has been sick (as have I) and I've been using a backup system that actually works well for a quad - hailing joggers who go by and letting them know I need a few things done if they're in the area. (This beats setting up help over the phone that cancels at the last minute or is, quite frankly, not affordable.)
If you ever asked me if I'd do this, I would have told you no, but reality is different than fantasy and, after all, a quad's gotta manage.
So the cute guy knocking on the door says to me "Need any help?" and I said "Yeah coffee." So he sets up my coffee machine and we chat while he grabs the garbage (each volunteer does two things, enough to help, not enough to be burdensome). He tells me that he works for a company where someone I played tennis with works, although the fellow has retired. We tell a few six degrees of separation stories and have coffee together.
Let me tell you, it's much more of a hassle to get someone to help than to just do the darn thing yourself when you have to keep track of what you ask for, count things out. I can't speak for everyone else who has a disability, but that's my take. (This is why when I hear the myth that pwd can do for themselves, but some won't and get judged for not being independent enough, I laugh out loud. Shows how the person never tried to manage by depending on others for basic necessities.)
So what does this have to do with Frida Kahlo? Her life was full of surgeries, healing, adapting. I suppose when I saw the movie about her life I was touched by the tender care she received, the ministrations. It's a different culture. In our culture, the pull yourself up by your bootstrap culture, it's very much about survival.
Experts make up a chart as to what "needs to be done" and, in some ways, you get treated like a potted plant that needs to be watered by the system here. The aides check things off and some try to get around doing things, questioning whether it's possible to streamline even more. (Yeah I hear there's a new watering system out there for quads...)
Meredith has never been like that with me. She's busy and there's much to do, but I rarely see that side. Once she's in the door, the clock stops and her time is mine. She attends to what she knows needs to be done, then asks what else. What else. What else. In a patient, respectful tone. Some days it brings tears to my eyes. Tears of gratitude.
You can't chart out a life. The cat knocks things over, one of us spills something, I decide I need to have the pages turned on something or other, etc. Because of my lack of hand function, I can't always predict on a certain day what I'll need help with, but I can predict it'll be time consuming. What's needed is the Frida Kahlo tender type of help, not the bootstrap method.
So we are flexible. I get to know friendly joggers. And, in the end, it's all very spiritual and not pragmatic at all. Difficult to chart. Perhaps impossible. Ask Frida.
