We recently hired a woman to come twice a month to clean our house. While it is probably long overdue, it leaves me with some mixed feelings. There is a lot tied up with my strong belief that one should clean up after oneself, something I’ve always tried to do. I’m certainly not perfect about it. But as I have become more disabled, I’ve had to leave more cleaning up to my long-suffering wife. I can clean the bathroom, but it takes me at least a day (and is likely a little dangerous – there’s plenty of ways to severely injure oneself in the bathroom). The same with vacuuming. I still do my share of kitchen cleanup. I’ve told my wife, there’s not a lot I can do, but I am very glad to do what I can. When she thanks me for doing the dishes, and I reply with a “My pleasure,” I really mean it.
But having someone, a stranger, come in to clean up my mess leaves me with mixed feelings. On one hand, I’m glad to know that Alison, who devotes huge amounts of energy to her work (which she is very good at), will be able to cross bathroom cleaning, washing floors and vacuuming off her list. On the other hand, it in some way reinforces the fact that these simple tasks – cleaning up after myself – are not something I can do any more. There is some small amount of embarrassment (not really the word I was searching for) in making myself, unemployed and home all day, scarce while this other person scrubs my toilet. Even though I wasn’t doing the vacuuming anyway, to admit that I am not able to do it feels like I’ve taken another small step down the ladder.
I don’t know if you are familiar with Spoon Theory . It is a great and simple means to express something of what the fatigue associated with many chronic conditions feels like. I find that, with this sudden onslaught of heat, by the time I’ve gotten myself out of bed, dressed and fed, I seem to have used up half of my spoons. I don’t know how I manage to forget from year to year what heat does to me.
One last thing. If you have not seen When I Walk, I highly recommend it. Jason DaSilva, a documentary film maker, was diagnosed with MS at 25, and chose to turn the camera on himself. The result is an honest, unflinching look at the progress of the disease through his life. He does manage to find the love of his life and get married during the time he covers in the film, but to see him struggle with the editing process with hands that don’t work is heart wrenching. In the end, I wish he had covered more of his treatments, but as difficult as it is to watch, When I Walk is inspiring and must-see viewing. It is available to stream online until July 23rd. You can watch it here .
Now, I am off to sit under the ceiling fan and watch US vs Belgium. Go USA!