In Sickness and In Health

What does it mean to be healthy? And what does it mean to be well? Is health a moral obligation? An ideal to strive for? Health is ingrained into every part of our lives. Being healthy or becoming healthy is part of the drive to survive. For human beings, health is primal. So if you are not healthy, and if you cannot ever be fully healthy, what does that make you?

I was born on October 15th, 1997, on a full moon, with a birth defect in my bladder that can result in kidney damage and, if untreated, high blood pressure. I was diagnosed with kidney damage and high blood pressure when I was 11. It reads in my medical chart as secondary hypertension caused by chronic kidney disease, managed by medication. I vividly remember the day I was diagnosed. I was sitting in the lab joking with the technician about kidney beans while I looked at a grainy image of my kidneys, seeing them for the first time. Later that day at the same hospital, I held my new medication in my hands. I felt a new connection to my body and to the life-sustaining medication it now depended on. My kidneys were now chronically diseased, for presumably forever.

A year and a half later, I had major surgery on my bladder at Children’s Hospital in St. Paul. I was visited by doctors, family, friends, and one very unfriendly therapy dog, but no one ever told me I would or could be healthy. They knew that that was out of the realm of possibility for me. I eventually recovered from the wounds of my surgery, but I left that hospital with the diagnosis of a lifelong, chronic illness, and a brand new perspective on health and healthcare.

In spite of the challenges of my illness and its cost, my parents eventually managed to make ends meet and I gradually learned to live with my illness. Four years after my surgery, my parents bought me a stuffed toy shaped like a kidney for Christmas. It still sits in my bedroom to this day. Its name is kidney bean. My health is imperfect, and barring a miracle it always will be. I have learned how to navigate the uncertainty and the unfairness of the American healthcare system, but I have rejected the notion that I am a burden. The pain I endured and the diagnosis I have lived with have taught me that the health care system is not tailored to meet the needs of the ill. I am an ordinary person with specific needs, and I believe that the health system in which I seek care should be oriented towards those needs.

I don’t know where I fall on the spectrum of health, but I know I will never be fully healthy. My health is often at the mercy of medications, doctors, insurance companies, lawmakers, and the grace of my body. I don’t believe that everything happens for a reason, but I do believe that there are lessons in being a burden. I am proud to be one. I am proud to be able to depend on others and to know my body well enough to advocate for it.

I and the many other people who live with chronic health conditions have wisdom to offer the healthcare system. They would do well to listen to it. I believe they would listen to it if they looked at us as fully realized beings to be lovingly cared for, rather than burdensome, expensive problems to be solved. That is what my bad, burdensome health has taught me.

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