I was diagnosed with MS in 2000. The first several years of my illness involved dealing with my illness, and the side effects of treatment, and also always having to do end-runs around insurance limitations that made it very difficult to follow my neurologist’s medical advice. I would find a treatment I could tolerate and my insurance company would find a way to deny access to that drug.

The debate for the ACA happened at the same time that I was dealing with a major shift in my disease to Secondary Progressive MS while I was also learning to live in my community as a person who uses a wheelchair. Under the ACA, I have had the peace of mind that comes with knowing I would have the insurance coverage I need to manage a serious, progressive and disabling illness.

I was released from the hospital on January 19th, following treatment for pneumonia, so I’m not well enough to go to an outdoor march in DC or in my community. Since undoing the ACA is the first goal of this new administration, I appreciate the opportunity to protest, as a woman with a disability, who depends on the safeguards of the ACA, knowing that I am exactly who insurance companies would prefer to exclude. Access is crucial, and the choices I face are never based on what I “want,” but rather on what I need to live the best life I can, despite my illness and disablity.

I live in western Massachusetts, where I am involved with organizations that promote community-based responses to climate change, local healthcare resources, immigration, and the written arts.