The final piece that enabled me to actually live in my body came during a Reverse-LC trial check in Minneapolis while listening to MeSsy, the podcast hosted by Christina Applegate and Jamie Sigler. They interviewed Baylen Dupree from Baylen Out Loud on TLC who has Tourettes. Similar to MS and Long Covid, her symptoms can be exacerbated by stress or when she doesn’t feel safe so she strives to protect herself and her condition. But sometimes it is unpredictable and unavoidable. She called herself “dynamically disabled.” Oh my goodness, yes! Dynamically disabled described me to a tee. Just that morning, I traveled to Minneapolis using a wheelchair in the airport, a cane on the light rail, and as I listened, I was walking around campus. Later, after my appointments, the process would reverse as my mobility declines. 

Sharing the term dynamic disability takes away the embarrassment that I am not always fully functioning and that my functioning level can change. One of the difficulties of a dynamic disability is there isn’t always a direct cause and effect to not feeling well but agitation increases the likelihood of it happening. Sometimes it will change predictably and sometimes it will seem random.

I never thought I wouldn’t be able to control my thoughts, my brain, my physical reaction to people, places, and events. I’m sure I’m not alone in once upon a time believing wholeheartedly in the pull yourself up by your bootstrap mentality. If I just work hard enough and think positively, I can fix myself. When that didn’t work, I needed to find help. I needed to put words to what was happening to me. I needed something or someone to help rebuild the bridges in my brain. I wanted to share my journey in case someone else out there finds themselves in the same situation. Please know that you are not alone. Keep talking. Keep asking. Keep trying new treatments, new therapies. Don’t stop until you find the help you need.

Dynamically Disabled tees are currently available for:

Long Covid, MS, Parkinson’s, ME/CFS, and Lupus. Please contact me if you would like me to add other chronic illnesses.