Book Passage: Don Cummings // The Body, the Self, a Book

I am often asked why I decided to write a memoir about my penis. Probably a fair question. For me, it makes a lot of sense. I’m not squeamish. I have a medical-ish background. I grew up in a family that was not hung up about sex. And I really wanted to help other men.

It wasn’t easy to write Bent But Not Broken, nor was it easy to live through the experience that inspired it: discovering I had Peyronie’s disease, a disfiguring but potentially treatable curvature of the penis that afflicts at least 5% of the adult male population.

Since I was in fifth grade, I have written daily entries into a journal. As a playwright and storyteller, I am in the habit of keeping this history of my life. When I discovered that I had Peyronie’s disease, I decided to get even more detailed with precise records (and pictures that no one will ever see) of my discovery, my treatment, my reactions, and the emails to my boyfriend Adam.

I figured this information would be useful one day, not because I wanted to write a book about it. I really didn’t. I just wanted to write a thirty- or forty-page monograph about treating the disease. I assumed my treatment would be a success because I generally force myself to be optimistic. I planned to post this success online to help other people. This would be an easy thing to do. I could be clinical, yet blandly upbeat about it. I have a degree in biology and I was a pre-medical student in college. At twenty-two, I watched my oral surgeon pull all four wisdom teeth out of my head while I held a mirror up to my face. I did get woozy after the third one and had to put the mirror down, so I have my limits. But I’m one of those strange ducks who can eat lunch while watching a cadaver being cut up. I figured I should be the person to write about this penis problem.

My true goal was to produce a Peyronie’s disease PSA.

Then a surprising thing happened. Members of my Brooklyn writers group listened to me read early drafts of my mostly dry account of the possible causes of Peyronie’s disease and how it is treated. They unanimously agreed, “The clinical stuff is good and all, but what’s really interesting and moving is your emotional life and how it affects Adam.” They started to push me to get more personal on all fronts.

At first I was kind of annoyed. Why couldn’t they just accept that I was keeping a record of this medical experience to present to the world as a public service? I wasn’t exactly in the mood to write about my identity as a gay man, my relationship with my boyfriend and how this disease was affecting our sex life. They encouraged me to be bold as I expanded into my sexual roots as a child, my early adolescent discovery of being sexual with others, and the beginning of my life as an adult gay man. But was all this possibly past the line of decency? Were they pranking me? Were they pushing me to go where they dared not so they could enjoy a vicarious thrill of risk taking?

Still I knew they were right even though I feared their chiding. A part of me wondered if revealing so much would turn people off. I braced myself for the changes I needed to make to the manuscript. I knew it was going to be a different kind of book than I had originally envisioned.

With some trepidation, I went deeper into the subject matter, facing the storm of my feelings over the disease. I had a fear that the only honest response to the book would be sincere revulsion. But I found once I got going, I enjoyed writing about my sex life, my feelings about sex, my problematic love life, and of course, my penis. We all have a sex life and we all have trouble. Why should this be repellant?

I turned the strange, short medical account into something more ambitious. I spent a year filling in the story of my body, my life and my love relationships because all of that history informs the story of transitioning into living with this strange and rarely discussed (though prevalent) disease.

When I showed these personal sections to my writers group, their response was more than positive. They enjoyed listening and wanted more. They cheered me on. Soon, I realized I had stumbled upon a workable structure for the book—alternating sections about my personal life with sections about the treatments and my interactions with the medical practitioners.

As I did this, wanting to make sure the story was not just a list of events, I started to see the shape of what went on between me, my doctors and nurses. There was plenty of conflict. There was rising action and resistance. There were disappointments and successes with my treatments. There were problems with my boyfriend that appeared insurmountable. The doctors and nurses were supportive and easy to talk to. They were not too interested in the details of my sex life other than they wanted to help make sure I continued to have one, at whatever level their treatment and fate would deliver one back to me. But for me, trust had to be built there, another lesson had to be learned.

After I completed a workable draft, I submitted it to the Yale Writers’ Workshop, was asked to join them up in New Haven, and off I went. I didn’t know what the reactions would be when I left the confines of my office and writers group and took the book out to fresh ears. I was nervous, but I had a sneaking suspicion I had done something brave by writing this book, that it would be appealing to others. I felt this, mostly, because I started to feel that I was having a good, not-self-conscious time. The reactions in the workshops were not at all negative. I saw that I had the makings of a book.

I returned home and I worked on a few more drafts. With each iteration I had a better sense of the scope of this memoir and an understanding of what it was really about: the body, the self, and the way in which illnesses traumatizes and transforms.

By writing this memoir, I have made a place for people to come forward. The appreciative faces at the recent launch at Skylight Books in Los Angeles affirmed the risk I took, with the help of my writer friends, was worth it. And back in my office, I am doing my best to keep my time open so that anyone at all who wants to talk to me about Peyronie’s disease can talk to me.

Luckily, no one has told me they are disgusted by the book. No one has told me it is too much information or too graphic. They tell me it is harrowing, honest, informative and funny. Good. That was the evolution of my intention. If nothing else, I believe we better laugh at the horror movie that is any kind of illness, decay or death. I’ve always liked a good dark comedy.

Don Cummings writes plays, movies, books and music. His story “What Ever Happened to Cousin Mickey?” appeared in Cagibi Issue 4, and he has also been published in Epiphany Literary Magazine, The Coachella Review, Post Road Magazine and has had his plays produced in New York and Los Angeles. He has performed at HBO Workspace, Comedy Central’s Sit ‘n Spin, E.S.T.L.A.’s True Story, Personal Space and Brooklyn Reading Works. He has been known to act in plays, movies and sitcoms. His memoir, Bent But Not Broken, was released in early 2019 by Heliotrope Books.

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