Disability Pride Month and a Personal Update

Did you know that July is Disability Pride month? And that this new flag is an update of an original design that was difficult for folks like me, with visually triggered disabilities, to look at? It’s ok, I had no idea either. But I am represented by the white stripe (for invisible disabilities) and the blue stripe (for mental illness, like anxiety and depression). My official diagnosis is vestibular migraine (chronic and severe), persistent postural perceptual dizziness, and adjustment disorder.

I have been disabled by my chronic illness almost 10 years now, but identifying as a disabled person is still very hard. As I’ve found an improved quality of life with medication, been able to have children, and do volunteer work to help my community, I’ve also lived with a deep sadness for the life I lost, including my career as an attorney. I thought it would fade as the years passed. But it hasn’t and is actually worse now – hence, the adjustment disorder.

This month, I start a new “project” (the term my therapist suggests!): taking the time and space to grieve everything that I’ve lost and trying to have a better lived experience with my illness.

This doesn’t mean that I won’t continue to try new medications or therapies and that I have given up hope of improvement in my condition. But I have been pushing myself to do as much as possible with my limitations, especially around all types of reading, and it means that I live most days with spiking levels of dizziness and a high level of frustration over the list of things that I desperately want to, but cannot, get done.

I know that I must step back from many of the things I do that trigger increased symptoms in my volunteer work. It is not something that I want to do. But, I’ve adapted as much as I can, and while it feels like my mind needs to do this sort of work in order to feel productive, retain skills from my career, and develop new skills to use in the future, my body just won’t cooperate.

I was valedictorian of my small, Catholic high school class and voted “Most Likely to Succeed.” The only two career paths I saw were doctor or lawyer. I did everything I was supposed to, and at this point in my life I certainly thought I would be running something or running for something. I think that’s one of the reasons this is so very hard. My mind and heart still work that way, but my body simply won’t allow it.

I don’t consider this a sort of “retirement” but an aggressive push to have a better lived experience with my illness. I hope to find a place where my grief fades into the background, although I know it will never be totally gone, and where I spend my days feeling the best I possibly can. Thanks for supporting me on this journey ❤️