Chronically Disposable

I’d always prided myself on being the one to take care of everyone and fix everything. Or so I thought. I had lived with my fibromyalgia diagnosis for at least fifteen years, and honesty, when my employer changed to a high-deductible plan in the mid 2000’s it was a relief not to go to the doctor and hear them say “there’s nothing we can do for you.” I’d gotten used to going without medical care. I thought it was just me who was treated this way. I was wrong.

In March 2017 my mother broke her femur and both our lives changed. Our journey over the next eighteen months took her from a vibrant nurse with a career that spanned decades to bed and wheelchair ridden and turned this author and computer geek into a full-time home health care aide—without any training or support. While I embraced my role as a caregiver and gave my mother the best quality of life I could. It wasn’t enough. I wasn’t enough. And I couldn’t fix either my mother’s broken leg or the healthcare system that treated her as disposable.

This memoir chronicles mom’s journey as well as my own. With it, I hope to share a glimpse into the lives of the chronically ill and the chronically disposable. And then, because you can’t turn on the television without hearing about one health care plan or another, I provide my insight into the catch phrases and cure-alls, both as a patient as well as a family caregiver.

For you see, medicine in rural America isn’t the same as it is in major metropolitan areas. From long distances between specialists to overburdened systems, patients in “flyover” country are often forgotten and left on their own. It’s my hope that this memoir shares not just mom’s and my story, but also provides an insight into rural medicine and how the entire system—rural and urban—fails patients and caregivers.