Q&A: A Young Man's Wry Memoir of Living With a Rare Illness: Gigantism

After a tumor bursts in his brain, Mike Scalise faces life as a 24-year-old with a hole in his head and out-of-whack hormones. In his wry and insightful memoir, The Brand New Catastrophe (Sarabande Books), Scalise is left to navigate life with acromegaly, a condition in which the pituitary gland produces too much growth hormone – sometimes called gigantism. Scalise, a writer who contributes to The Wall Street Journal, The Paris Review, and Agni, writes with humor and irony about his college years in Pittsburgh, and his transition to New York, with tales of his mother (a drinker and smoker with a heart problem) and his father, who sends him pornography to help him cope. Scalise enriches his story with a history of acromegaly, and the result is a charming twist on the traditional illness memoir, and a deeply moving coming-of-age story. Scalise shared his thoughts with Joseph Farago of The National Book Review.

Q: Most memoirs involving illness delve into the tragic sides of being diagnosed, while in your memoir humor is a guiding sentiment. How does comedy help you to tell your story about being diagnosed with acromegaly?

A: I think it had to operate on two levels for this story to carry any kind of useful harmony. The first level is the humor of the lived moment, which unfolded during my diagnosis and was typically a defense mechanism manifesting, wildly. To this day I’m not 100% sure if it “helped” much in real time, but I knew for it to work on the page that kind of humor had to destabilize the medical “script” we often apply to medical encounters. It was tricky to manage, especially when many of those jokes failed to land with doctors, and my family, and my wife (for good reason). That’s where the second layer of the humor came in: really burrowing into those moments with a sense of perspective in order to present the fuller story—what is that medical script, what does it mean to destabilize it, how does destabilizing it affect everyone around you, etc. It’s an absurd thing, getting your body “fixed,” and I found I was on the hunt for ways to highlight that absurdity with the benefit of hindsight.

Q: In the beginning of one of your chapters, you write about the logistics of drafting an email to coworkers, acquaintances, and family about your diagnosis.  Were there other parts of 21st century communication that changed the way you thought about or discussed illness? 

A: Not at the time I was diagnosed. But later, after social networks—and, more importantly, the language of social networks—began to mature, that really tilted the way we react to people’s personal disasters in surprising ways. Much of the easy criticism of social spaces has to do with dopamine hits and FOMO-type stuff. But there’s an unsung and very real, utilitarian support function social media can play in personal crisis moments that I think is fascinating. One of those moments happens for one of the characters later in the timeline of the book. I won’t spoil it (which feels strange to write about a real-life crisis), but I found myself very frightened during that event, alone in a waiting room, far from feeling good about anything. So I typed what had happened onto one of my social feeds, and within seconds I was no longer alone. Friends from everywhere volunteered immediately to help however they could, which wasn’t much at all, but it didn’t matter. To know you can ask for support in real time, and receive at least the intention of that support just as quickly—I was surprised and heartened by how effective that was during a difficult moment. That’s a major change in how we discuss this stuff, and I think a good one.

Q: Throughout the book, it seems like you separate the clinical, impersonal assignment of disease, and the way that you, as a person, dealt with your illness daily.  What do you want your readers to understand most about this distinction?

A: Acromegaly isn’t a major part of the public illness zeitgeist and it never has been. In many circles, it’s rare enough that it can be treated like a cruel punchline that often dehumanizes those who suffer from it. Sometimes this happens very famously, as in the way Shepard Fairey’s OBEY campaign appropriated Andre Roussimoff [the famous wrestler Andre the Giant]’s appearance, or in the ways that acromegalics perennially played brutes and monsters in pre-CGI era Hollywood. The only way it made sense for me to write about how acromegaly was situated culturally, then bridge to the human experience, was to write it as a dispatch—part journalist, part first-person participant. The journalism component was meant to provide a new cultural perspective on the common acromegalic narrative, while the participant component was meant to provide emotional authority to the day-to-day, or the more interior concerns and complexities. All of this is a very complex way to say: I wanted to remind everyone we’re just people, and that I’m a living example of that.

Q: In one chapter, you share from your dad’s weekly porn emails to help with your decreased levels of testosterone.  These emails came off as incredibly sentimental and heartwarming.  Were you nervous about this part in your memoir and why do you think it was important to include?  

A: Yep! Very nervous! But then I ran it past my dad, and he was completely unfazed by any of it. He’s been in the room while I’ve read those passages to people. He almost seems to enjoy it. He’s proud of the project, I think?

I wanted to include that aspect of our relationship for a number of reasons. One is to begin to talk about rites of maleness and masculinity, and what that stuff might mean if you don’t have any testosterone anymore. But just as much, it was a potent way to show who my father is—a guy who, beyond everything, is a bloodhound for finding common ground with both my brother and me, however that presents itself. But really, pontifications aside, “my dad emails me pornography” is just something you must write. Like if you have that occur in real life, and you are writing a memoir, the memoir police require it to be written about. It is the law.

Q: Were there other memoirs, or other books in general, that you wanted your memoir to stylistically incorporate?  

A: In early drafts, I felt very much like a cover band of about seven or eight different memoirs. They were books I saw my own story in, or book that gave me permission. I read them and said “Oh, I didn’t know you could do that.” Prose-wise, I returned often to Donald Antrim’s The Afterlife, Philip Roth’s Patrimony, Susanna Kaysen’s Girl, Interrupted, and Amy Fusselman’s The Pharmacist’s Mate. Deb Olin Unferth’s Revolution had the most influence, tonally, I think. I owe a lot to graphic memoirs, too. Julia Wertz’s Drinking at the Movies and Geoffrey Brown’s Funny, Misshapen Body are both built anecdotally in ways that deeply informed how I structured The Brand New Catastrophe in ways that most prose memoirs didn’t seem to.

Q: There is so much spontaneous humor in the book -- whether it’s a nurse insisting that you brush your teeth before surgery or your friend offering the cabdriver weed because he couldn’t bring it into City Hall for your wedding. The comedic detail almost seems surreal.  How did you choose which comical scenes would be included and how did you remember all of the incredible detail?

A: Thanks! I used to teach this lesson on personal narrative where I’d ask my students to quickly jot down the story that they tell most at parties, or in bars, or at work. Then, as a class, we sit around and tell those stories to one another. Afterwards, I ask each student make notes about what parts of their story got reactions and why. The idea is that personal narratives don’t always have to be at a high-stakes, bleed-on-the-page pitch to get a meaningful reaction from a reader. Your typical anecdote presents more than enough opportunities to create a complex, rich ways for a reader to find a way in.

In the case of the scenes I wrote about, in many instances they’re stories I’d been telling at bars, or at parties, or at work, thoughtlessly, for many years. The details wouldn’t leave me alone. I just hadn’t done the other side of that work, which was to sit and ask—why do these stories stick with me? And why do I keep telling them? There’s a value to stories that have that kind of stubbornness, I think. Interesting things happen when we interrogate them.

Q: What advice do you have for 20-somethings starting life after graduating and dealing with illness? 

A: Oh man. Right now is a profoundly scary time for anyone who’s entering the adult human world at the same time they are dealing with illness. By the time this runs, it’s very possible our government will have taken coverage opportunities away from so many young people it breaks my heart to fully consider the impact. But if you’re young, unemployed, and find yourself without necessary coverage my advice is to get creative, and don’t be afraid to rely on your communities for help. Crowdfund, seek alternatives. Be loud about how sick you are and how much help you need. People will listen. It might not be the people who are supposed to listen, but people will listen.  

Q: Reading about you and your mom’s relationship was probably one of my favorite parts of the memoir, especially because your mom seems like an eccentric and sarcastic parent.  Do you feel like you get your sense of humor more from her or from another family member?  

A: I get a lot of sensibilities from my mother, who I suspect may not think of herself as a funny person, so if she reads this I hope she’s pleased to know you feel that way. I agree—she can be hilarious, but sarcasm implies a degree of remove that my mother doesn’t have time for. She specializes in blunt force commentary in a way few people can rival. She’s always valued a tell-it-straight ethos regardless of what the moment calls for, and that’s certainly filtered its way to me in ways I struggle to manage as I get older. Not her, man. She lets it fly. It’s a special thing.

Joseph Farago is an Oberlin College senior majoring in Creative Writing.  He was born in raised in Chicago and plans to come back after finishing college.