Sometimes I just feel behind. I look at all I want to do and the level of support I need that before my mother died I didn’t spend time thinking was “too much” as much and now has piecemeal responses stitched together instead of vibrant help. My disability, as a result, can often feel overmagnified in my life and brain because it is. This is exhausting in itself, and disability burnout from navigating things over and over and over again is a thing. (It is not, to be clear, the same as thinking disabled people’s quality of life is so poor that death is better. Most of us want to be alive, and when we don’t, it can be because this is because we’re burned out from the millionth iteration of the same disability thing we’re dealing with again)
I look at how hard I work to manage my attendant care and my POTS and how much POTS got in the way of my goals for years, and I feel grief, frustration, and resentment that without it I’d be in better shape physically, socially,financially, etc.
But it is here and it has been a huge thing to navigate, so *pats self on back* and I try to honor the memory of my mom who helped me get through the worst of it so I didn’t die (it used to be much more severe)
Sometimes I feel alone. I call people and don’t get calls back. I wonder if people just tolerate me but wish I were not actually myself. No clients show up for months and I wonder why and start thinking negatively about myself and the tenets of social work.
But I keep going. In a recent interview, Bjork said that pursuing the light too hard is a form of hiding. I agree. So is living in the dark, so I pray. Because God can do what I cannot, and I know God is with me.
And with you. Thanks for reading.