Mike Scalise on His Rare Condition and the Illness Memoir

On the surface, The Brand New Catastrophe by debut memoirist Mike Scalise is a book about a rare medical condition called acromegaly, a hormone disorder caused when a brain tumor grows in the pituitary gland. Acromegaly exists just outside the periphery of our collective cultural knowledge. Among the populace, mention of the illness might invoke some vague association with the icon, Andre the Giant—the most famous acromegalic—though it is far more likely to draw blank stares. The scattered books and documentaries about the subject tend to focus on the novelty of this rare condition; since untreated acromegaly can cause facial and bodily deformities, in Hollywood, acromegalics have sometimes been cast in fantasy and horror movies, as lovable monsters—or more often, as villains.

For his part, Scalise, whose acromegaly was caught early in life, at age 24 when a tumor burst in his head, doesn’t ignore Andre or the other historical associations with the condition. But he doesn’t stop there to gawk either. Rather, The Brand New Catastrophe reveals the human experience of acromegaly with a beautiful and skillful clarity, rendering the rare and misunderstood disorder with an intimate, personal grace.

In the book, Scalise deftly and compellingly captures his struggle—that of a “busted” man searching out a new normal—with a defiant emotional candor, a generous spirit, and an utterly infectious sense of humor, amidst gut-punch moments of pain, anger, exhaustion and heartache over living within a body that has betrayed itself. From start to finish, The Brand New Catastrophe is full of masterful writing that both enacts and transcends the illness memoir genre, exploring what it means to be a son and husband; an artist; a friend; a man; and yes, an acromegalic in the first two decades of the 21st century.

Scalise currently lives with his wife in Brooklyn where he writes and works for a DC-based non-profit. I spoke with him from his home, via Skype.

Andrew Cartwright: Your book won the Doheny Prize from the Center for Fiction, awarded to outstanding fiction or nonfiction that deals with physical illness. When you set out to write the story of your experience with acromegaly, how conscious were you of entering into an “illness memoir” conversation?

Mike Scalise: I was really conscious of the illness memoir aspect of it because at first I was really reluctant as a memoirist. I tried a couple different avenues with this story that were a little more journalistically-driven, to tell the larger story of some of the more famous acromegalics like Andre the Giant, Tony Robbins, Gheorghe Muresan, Rondo Hatton and others. But I quickly found that, in order to access their stories in the way that I wanted to, I had to put myself at the middle. This was a long trial-and-error process for me, but when I got there, I knew that it needed to be an illness memoir, and I knew that I needed to take the genre seriously.

AC: So, did you read any other books within the genre leading up to writing your book?

MS: Yeah. I really responded to a number of really well-known illness memoirs. Lucy Grealy’s Autobiography of a Face obviously was really interesting to me, and then Philip Roth’s Patrimony, which is a book about his father’s diagnosis with a brain tumor that kind of weaves around in a strange way and has moments that range from heartbreaking to hilarious. I read it and I was like, Oh, you can do this?

AC: I think your book does that well, too.

MS: Thanks, man. It was all about finding a series of memoirs that gave me permission. Another one was Donald Antrim’s The Afterlife, which again has a non-traditional memoir structure that talks about his relationship to his mother in a way that really resonated with me. The other one that was really key for me was Deb Olin Unferth’s Revolution which didn’t have a lot of overlap with me with regards to subject matter, but I did find her structure and her voice and the way that she managed a timeline to be really helpful for me writing. So, when it came to memoirs, I had to develop a familiarity with the genre and then a second familiarity with what within that genre really energized me to write. Early on, with this particular book, it became a situation where, no matter how much I tried to not write personally—every time I would try to sit down and craft a journalistic narrative about say, Andre the Giant—the personal wouldn’t get out of my way. It was really frustrating. And so at some point, I just said, Alright, well, we’re going to tackle this and see what happens. Once I figured out was the only way to write through the personal stuff, I knew I needed to prepare otherwise.

AC: Let’s talk about Andre a little bit, if you don’t mind. So, he had a condition called gigantism, which is related to acromegaly, but it’s like child-onset acromegaly, is that correct?

MS: Yeah, it’s the exact same condition, just with a different name. It happens earlier before someone’s bone cartilage has a chance to mature, so that’s why it expands them.

AC: Okay. It seems like Andre kind of ghosts this piece, appearing from time to time, sometimes just as a figure of interest but other times as a foil of sorts to what you, as the narrator, hope to be and do with this condition you both have shared. First off, what did you learn from the research process looking at Andre and his life?

MS: I mean, I’m still kind of learning. Andre Rousimoff, I think, was somebody who led a couple different lives: one he had a lot of control over that we didn’t get to see; one he had no control over that we all got to see which lived well past him in many different ways; and one in the middle which he seemed to sort of manipulate people with, his public wrestler persona. I think he was a really savvy person about how people were looking at him and what he could do with it. So, what I learned from him that was really unexpected, was that you can be in control. You may not have control over what a condition has secretly done to your body. But you can control what you do with that information, who you give it to, how you present it, and how you teach people to react to your condition.

AC: There did seem to be some angst directed at the figure of Andre, however, say in the scene from the book where you are looking in the mirror, kind of wondering and worrying, Do I see Andre in my own face?

MS: That anger isn’t so much at Andre or what he meant, but more at the fact that you just kind of find out one day that your endocrine system has betrayed you and has betrayed you for many years, in ways that you think you trust yourself to notice, but you can’t. It’s a nebulous anger and it doesn’t really have any direction. But, when you learn of this condition, you learn that you inherit this complicated history of people who aren’t, on their face, very well regarded by the culture. You know, Andre is a really famous person that seems to have engendered a lot of affection from people, but Rondo Hatton hasn’t, Eddie Carmel hasn’t. So, you start to ask yourself, what does it mean to be among these other people who have this condition. And it can be really frustrating at first. But eventually, you know, they’re just people. And hopefully the book starts a little bit of a conversation about what kind of people they are and how to look past that.

AC: Absolutely. How much did you know about acromegaly before the “explosion” in your head?

MS: Nothing. Absolutely nothing. I didn’t even know it was a thing. It was all brand new to me. In a sense, that was great from a writing standpoint because you’re a stranger in a strange land. But, for a while, I didn’t want to know anything. I didn’t want the information. Because I hadn’t chosen any of that, and it didn’t match with the image that I had in my mind, or what I envisioned for my future. So, it took a long time for me to begin to see myself as part of that family. And I do have to say, I only had acromegaly for a year and a half. There are people who’ve had it for much longer than me who this experience is far different for. I was diagnosed at 24 but most people are diagnosed at 50 after many, many years. And that experience I don’t want to speak for. For me, yeah, it was a rough transition, mentally and physically, just really difficult.

 AC: There are a lot of really impressively accessible medical passages here that describe the illness in an understandable way, which seems like a tough thing to do. If I were to write about acromegaly, for example, I wouldn’t know where to start beyond just the basic description—It’s a pituitary condition . . . Andre had it . . . —but you capture it well. How much of that fluency or fluidity comes from your personal experience?

MS: You know, that kind of writing wasn’t actually a natural fit for me, either. It was something I really had to work at. There’s a type of nonfiction writer that I’ve always deeply admired, but could never emulate, who seems to have an enthusiasm for the information, enthusiasm for the idea of information and the stories it can tell, the possibilities of it; there’s an engine behind the writing about that information that is really attractive. Mary Roach, for instance, is somebody who really just kind of has a verve for whatever story the information presents. She’s able to filter it through her own sensibility in a way that’s really palatable to the reader. However, I really struggled whenever I would try to write these research-heavy passages until I started to realize that it wasn’t necessarily important for me to be a scholar, it was important for me to see the information as rhetoric. You can use what’s in that research in a way that empowers your own sensibility and then leave the rest.

AC: What’s next for you? I know that this book is just releasing so you have a lot of work left to do, reading engagements and other promotions with Sarabande, but what else are you working on?

MS: The projects that I was working on in the years that Brand New Catastrophe was finding a publisher were more fiction-based, and I’m really looking forward to getting back to those. The one thing about having an illness and finding yourself compelled to write about it is that I had an idea of what I wanted to write before all of this. Then this illness happened and it put itself in front of me in a way that forced me to contend with it. I do feel lucky that this story that has given me a clean break—I don’t have anything else to say about it; the tap is empty.

AC: So, by nature, it’s something you’ve kind of written out of yourself, and now it’s time to move on to something else.

MS: Yeah. Now I’m really looking forward to doing the kind of work that I really wanted to do before this happened. It’s a really exciting graduation point.