My Own Health Journey

My health journey

If you’re coming to me to talk about disability or illness you’re going to spend a lot of time telling me about your health. I think it’s only fair that I share some of my history here in return.

I’ve had a variety of health issues since birth, but I didn’t start experiencing chronic pain until I was 12 years old. For the most part, that's been my experience ever since. About 10 years later I was in a vehicle collision that not only turned up the dial on how severe my pain was, but it also left me profoundly fatigued and with a host of other symptoms. For the next 8 years I saw doctor after doctor and I received pointless treatment after pointless treatment. I came to eventually understand for myself that I had ME/CFS but I wasn't able to get traction with the medical system on that for another few years.

Then I got covid and my bothersome (and disabling) fatigue started to get significantly worse. I developed POTS, MCAS, and SIBO. One week I was struggling to walk to the end of my block, and the next week I was struggling to walk to my kitchen. I went to the emergency room and they told me I was a picture of perfect health. They sent me home with a packet explaining how to exercise. I spent the next 10 months experiencing what is known as "very severe" ME/CFS. I laid horizontally in bed and lived off Soylent and the grace of others. I needed an electric wheelchair just to navigate my small Bay Area apartment. I rarely saw the sun. I learned a lot about my life, my friends and family, and justice. I learned more than I can ever describe and I would never wish it on anyone.

Finally, I was lucky enough to encounter a series of medical professionals who identified that I have Craniocervical Instability (CCI), essentially learning that my neck is hypermobile. It appeared that for the last decade my spinal cord was being crushed by my spine, and that this was the cause of my ME/CFS. I now work with a specialized chiropractor and other specialists to help keep my upper cervical spine in alignment. I no longer experience the worst parts of ME/CFS though I still have a variety of other health issues that need near constant attention.

I don’t know if my system will ever bounce back from all of the trauma of illness, and I think it’s beautiful to live a full and vibrant life in spite of that. My illnesses are part of me and we co-create this life together. I do not define my life by my health.