What It’s Like To: Write About Your Health Blind Spots

UC Irvine English professor Jonathan Alexander survived an eye stroke that led him to look deeply at his health history as a gay man and write “Stroke Book: The Diary of a Blindspot.”
Photograph by Emily J. Davis

In the summer of 2019, I was on vacation in Colorado with my husband when I woke up in the morning and realized I couldn’t see clearly out of my right eye. Part of the vision was grayed out or blurred out. I thought at first I was having a detached retina. 

We found an ophthalmologist who did a series of examinations and realized that I was not having a detached retina. He could actually see a little globule of cholesterol that had lodged itself in a branch artery of my retina. And there’s nothing they can do for that. There are no instruments small enough to go in and remove that. He was very concerned, given my blood pressure was very, very high at that time, that this was the beginning of what he called “a cerebral event.” The retina is part of the nervous system. That’s why they consider this a stroke.

I was immediately admitted to the hospital for observation and put on medication for my blood pressure. I was lying in that hospital bed away from home—at the time I was 52—and thinking, “OK, I’m not going to get that vision back. It’s not treatable. What they can do is try to prevent other events from happening.” I was thinking, “How did I get to this point?” So I started this journal that eventually became “Stroke Book.”

I’ve always been a pretty high-strung individual. I would say my pulse rate and blood pressure have always been a little higher than the norm. I was under the assumption that we had been treating that and controlling it. But sometimes you don’t always know about what’s going on in your body. So that question, “How did I get to this point?” led me to start journaling. I guess as a writer, it’s your bad habit. I thought, “OK, where did this come from? Can I trace this?” 

Things that kept coming to me had a lot to do with having grown up in the ’70s and early ’80s in the Deep South and encountering quite a bit of homophobia. From a fairly young age, I was readily identifiable as a gay kid, a queer kid. At the time, the South was a tough place to live as a queer kid. I was subject to quite a bit of bullying. Also entering into late puberty and early adulthood and going off to college at the time of the AIDS crisis in the ’80s, when everyone was telling me that AIDS was God’s punishment for homosexuality. That was a toxic environment to grow up in as a queer kid, and it gave me a set of anxieties, even a kind of self-hatred that took decades to undo.

What I tried to suggest in “Stroke Book” is that it’s hard for me not to think about this later-life health crisis as at least connected to this five-decade experience of growing up at a time when the cultural environment, the social environment, and even the political environment was extremely toxic. I think that has consequences, even if I can’t piece it together as A plus B results in eye stroke, there’s this larger sense that living for prolonged periods of time in an environment that says “We don’t value your life” can create the kinds of anxieties, bad habits, and ways of living that can manifest in ill health.

I don’t think there has been as much research as is needed. It’s taken the medical establishment a long time to pay attention to the particularities of the health of gay people. We do know that gay men have lower life expectancy than non-gay men, and not just (because of) things like HIV.

I’ve been really pleased when physicians have commented on the book and said they’ve wanted to teach it in medical schools. That’s gratifying because it lets young doctors-in-
training know about the health needs and sensitives of LGBT people. In my life, I’ve only ever had one gay doctor. So the vast majority of us LGBT people are not going to have physicians who have lived experience of our lives, and we have particular health needs and challenges that I think are important for the medical establishment to know and pay attention to.
—As told to Valerie Takahama 

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