Being a patient is lonely. Being a rare disease patient is even lonelier. I've already confessed to having disease envy because those with more common diseases have so many more resources and other patients with whom to connect. But even common diseases once were misunderstood, feared, incurable, and unstudied. I am ashamed to say that I never considered this fact until recently.
I met Dr. Abraham Verghese at Stanford University where he was a keynote speaker at the Medicine 2.0 conference. I was already well into his novel "Cutting for Stone," and having just learned of his autobiographical work "My Own Country," hunted it down at Books Inc. Palo Alto prior to Verghese's talk. Since I knew that Verghese was an Indian born in Ethiopia, I was surprised when the book jacket to "My Own Country" revealed that the work was set in the Smoky Mountains of East Tennessee—a mere two hours from where I live—and chronicled Verghese's work with the regions very first AIDS patients. Intrigued, I expected to be educated about the author and the AIDS epidemic. I did not, however, expect to connect.
Verghese's story is that not just of himself but of the rise of a terrifying and incurable disease and its effects on patients who were isolated geographically in small rural communities and then ostracized by their contraction of the disease. AIDS had the "benefit" of being an epidemic and therefore subject to much research and government funding. Those of us in the rare disease community do not have this benefit. By the very nature of having a rare disease, we are still isolated and untreated. It is lonely; it is frustrating; it is seemingly unbound to change. I can only hope that the few doctors who dedicate their lives to rare disease are as intimately invested in their patients as Verghese—but more often than not, we rare disease patients have similar experiences to those early AIDS patients, as doctors are unable and/or unwilling to treat us, so we are shuffled off to doctors far away to seek specialized care.
Consequently, the patients' stories are what make "My Own Country" such a work of art and so personally relevant. We patients—particularly chronic patients—each go through a myriad of characters throughout the course of our disease. Our personal characters reflect the five stages of grief—denial, anger, bargaining, depression, and acceptance; yet, at any time we may transition backwards and forwards in these stages since disease and health in general can be mysterious and often come without a clear and predictable course of progression. Regardless of our diagnosis and whether we have come into illness through no fault of our own or by virtue of making poor health choices, we are Verghese's AIDS patients, and they are us. It is from these such patients faced with terminal illnesses for which only the symptoms may be treated and palliative care provided for comfort that we may truly learn how to live.
"I feel like a bear that's been in hibernation, you know what I mean? I have become a person I didn't know existed inside of me. I know I can make friends. I know I'm respected after people get to know me. And my heart is so full of love to give to them who need it... Life is so precious, Abraham, and there's so many people that don't realize it. So if anything, this disease has made me take a long look at how things were before I got it and afterward. I'm more of a complete person that I ever was. I set goals for myself that I'm determined to fulfill. I am somebody. I'm happier now that I've been in a long time. I enjoy life more now... But I'm also realistic. I know that what I have is like a time bomb waiting to blow up in me and cause this terrible AIDS to begin. But I can't let it rule my life, get into my train of thought all the time and take away the best fight that my body possesses, and that is 'positive thinking.' I'm going to fight this disease with lots of laughter on account of, you know, it will boost my immune system. I've had a lot of sad times and probably a lot more to get through. But it helps having very special friends to talk to... my friends in support group are even more special to me because they know what I'm going through. They've been through it themselves. But I tell you what, Doc, there's much more to life that sitting around waiting to die." — Vickie, HIV+ patient, "My Own Country" by Abraham Verghese