Life feels like pretending a lot of the time.
Pretending to be sociable.
Pretending to be capable.
Pretending to be healthy.
Everybody else is back at school and I’d hoped I’d be back in my volunteering routines, but it’s not happening for me. I have a long to do list again. I can’t get my head around making phone calls or talking to people I don’t know.
I went to a PSP support group this week only because Ditzy came to the door for me. I did the driving and it was a long enough day. There were giggles and gossip and hugs and sharing. Always exhausting. Always worthwhile.
The next day I left the house again, and I pretended. I had on a colourful top and red lipstick, and apparently that’s all it takes to seem switched on. I chatted about rare disease and advocacy and how people coming together makes a difference.
And I have been low and practically immobile ever since. I have been asleep or watching box sets (downloaded so no actual boxes involved anymore).
When I can’t do all that I want, I feel like I’m failing. That I’m letting people down. That I’m not contributing to any of the household activities. And then I feel bad, because I know better. I know I’m not failing, but feeling is a different thing. I cope better than I used to, but these days remind me of what I tell the medical students- that ‘coping’ is present tense. It’s present and active. I have to keep on doing it. My ability to do so varies.
Yesterday I read a fabulous essay by Melissa Broder, and much of it resonated. Not the open marriage bit (who’d have the energy?) but these words.
I don’t want to be defined by [his] illness. I don’t want people to ask me how he is doing when I see them. I pretend to people, especially to myself, that this isn’t hard. I don’t want pity. I want to be happy and have a good life. I don’t want to be sad. Or, I want to be sad about the things that I choose to be sad about. But I guess that is not how life works.
Sometimes I feel full of despair and cannot figure out why. Like I forget to equate the two things: the illness and the sadness. Then I wonder why I am sad. Then I get scared that my sadness is a free-floating sadness that will never go away. Sometimes I feel doomed.
And then I went back to watching Nashville and wondering when I’d fit in the world again.