Donald O. Kollisch
To: Donald O. Kollisch
Subject: Serious medical update
I can't say for sure why I'm writing to you, but you were such an important part of my life during the onset of my illness that I feel a strong desire to communicate with you.
The mysterious autoimmune disorder that was lurking in my body has finally had the decency to declare itself. Unfortunately, it is systemic sclerosis, also called systemic scleroderma, which means I'm facing a gradual but ultimately fatal process of skin, joint and organ degeneration.
It has hit my lungs, seriously affecting my breathing capacity, and has hit my digestive system also. Recently I was in the hospital for ten days because of serious digestive problems and an inability to eat. I'm now on intravenous nutrition, with a line in my arm. I can eat a small amount of food for pleasure, but there's a real question as to whether I can ever take in enough nutrition by mouth to get off the intravenous line.
My rheumatologist at DHMC is wonderful--a good, honest and very compassionate young doctor. She has been completely candid about what we do and do not know about the outcome of my illness. Actually, we know the outcome; it's the timetable that's in question. Next week I start a chemotherapy regimen: cyclophosphamide. There isn't a lot of evidence for its value in treating my condition overall, but it could slow lung deterioration enough to make a clinically significant difference.
So that's the bad news.
Here's the "better" news: I am not afraid of this. I don't love it, but I've always understood the concept of mortality. I think that the length of this illness, and its yo-yoing nature, have brought about great changes in me, for the better.
I know that the course of this disease is not pleasant, and I don't look forward to it. But my single strongest belief, taken from Buddhism, is that we can find meaning, purpose and value in life even in the midst of suffering. I truly believe this.
I am also very aware that I'm lucky to have a family around me as I go through this--a family whose members support one another. Not everyone has that. Over the past weeks, we've had many honest discussions about the situation. No one is in denial, but no one--myself included--is ready to hang up the black crepe paper.
I've been doing a lot of reading, thinking and journal writing these past weeks, and it dawned on me that I was doing the work necessary to help me prepare to die--but also, far more importantly, I was doing the work to prepare to live with this. You prioritize; you ask what's important, what you still want to do. Now that teaching writing to my college students is no longer an option, I'm making writing a full-time activity, along with exercise (walking, tai chi, light hand weights).
As I said, I approach this without fear, but with a sense of purpose. I will let the doctors do what they can, and I will do what I can to make myself stronger. I have a very vital life force in me. It will run out, as it does for everyone, but meanwhile I get on with life.
I hope you don't mind, but I felt the need to share this with you.
From: Donald O. Kollisch
Thank you for writing. For reasons that I hope to articulate, it feels important to stay connected with you and to know what is happening.
When I go through an intense illness with someone, and hopefully provide some variety of help, whether it's diagnosis or therapy or guidance or simply being there, a bond forms between us. It can be a bond of shared gratitude--the patient grateful to me for whatever aid I provided, and I to the patient for opening up to me and sharing an intense human experience that even metaphor cannot convey. Sometimes the bond is a shared secret, dark or light--something very few are privileged to know. On rare occasions, a patient and I share the experience of a miracle.
This connection is what keeps me in medicine, because it is--for me--a unique and intense link that may fade with time but never extinguishes. As you and I traveled the path of your illness, this invisible thread connected us. I remember our talks about your strange symptoms, which came out of nowhere and retreated only reluctantly when treated with steroids. We agreed that your symptoms made no clear sense--and, grateful though we were that they'd receded, we also wondered about their underlying cause. I've carried your mystery within me since then, and it makes sense to me that you'd know this and reach out to complete the connection once more.
I apologize if this sounds mystical. I am not a mystic, but I am a doctor, and I believe that doctoring isn't just an intellectual exercise. Although I'm no longer formally responsible for your care--and I'm grateful to the rheumatologist for caring for you so well--I still care for and about you.
Thank you for so generously sharing your news and reflections with me. I hope that Judi and the kids are faring well--I've no doubt that they're wonderful in their support for you and for each other. And please let me know if there is ever anything I can do.
To: Donald O. Kollisch
Thank you for the meaningful and beautifully articulate response. I don't think you're being mystical, just human. (Although I believe there's more than a touch of the mystical in that.)
Throughout the different stages of my illness, when you were my doctor, I felt cared for both as patient and as a human being. We will keep in touch as things develop--and maybe even share the rare occasion you mentioned and experience a miracle together.
In the meantime, I continue to value the things in my life on a daily basis, and I'm doing a good job of living in the present.
Be well, and we'll be in touch,
About the author:
Don Kollisch is a family physician who moved two years ago from clinical practice at Dartmouth-Hitchcock Medical Center, in rural New Hampshire, to administration at Sophie Davis School of Biomedical Education at The City College of New York, in urban Harlem. For fifteen years he's written short fiction based on the lives of his patients--farmers, loggers and the like. He has had two stories published in Dartmouth Medicine. This piece is an edited exchange of e-mails with a former patient, Michael, who agreed to their publication. Don saw Michael recently at a street festival in New York City and reports that Michael is, indeed, getting on with his life very well.