Pituitary Story: Pituitary Apoplexy At Age 24
At the age of 24, Mike Scalise got a terrible headache. “It felt like a hangover headache, times a thousand,” says Scalise. He went to the emergency room thinking it was a migraine, but found out that he had a tumor on his pituitary gland – and it had ruptured: a phenomenon called pituitary apoplexy. The brain bleed put his life in danger, so he underwent emergency surgery. Doctors diagnosed Scalise with acromegaly, and then hypopituitarism. He says, “My pituitary went from producing too many hormones, to not producing any.” Doctors told him he’d probably had the tumor for about a year and a half. Looking back he now sees that he did have some unexplained symptoms: profuse sweating, a poor complexion, sleep apnea, bunions that required surgery - and a tendency to quickly outgrow his shoes.
He is now 41, married, works as an educational consultant and lives a reasonably normal existence, aside from the hormone replacement medication. Two-and-a-half years ago, he decided to write a book about his pituitary journey, called “The Brand New Catastrophe.”
In it, he explores what it was like, learning to be a young adult living with illness. At the same time, his mother was battling a chronic heart condition, one that landed her in and out of the hospital. Scalise says they fell into a strange bout of competitive illness, implicitly and explicitly kind of competing with one another on how to be the best sick person. He says,“there is a certain pageantry to living with chronic illness. You have to decide how you’re going be in the world with that illness. My reaction when I was diagnosed was to make a lot of jokes, lighten the mood, sort of infuse a sense of optimism throughout the predicament.”
He says by contrast, his mother faced her heart issues with a far more somber approach. She was more realistic and tended to focus only on the negative aspects of the disease. Scalise argues that there’s a danger in both approaches: “Dwelling on the negative doesn’t allow you a break psychologically. But if you only focus on the positive or the surreal aspects you might get yourself into a situation like I did, where I didn’t pay attention to what my body was telling me and tried to live in the world as if I didn’t have the illness. And I couldn’t.” Scalise reports that he and his mother learned to appreciate the value in each other’s approach. The book looks at the complicated emotions that go with managing a chronic illness. Scalise says he had to make big changes in his life plans. He started out as a freelance journalist, but had to leave the profession because it was too unstable and didn’t offer suitable health insurance. All the jobs he wanted required long work hours, but he had to adjust his path. He now deals with secondary adrenal insufficiency, which requires him to structure his life around avoiding stress.
Scalise says he is grateful to the PNA for helping him find the specialists he needed. His best advice for other pituitary patients? “You have to communicate with doctors and with yourself and the world around you to minimize the impact of illness, so you can function in the world.” The book, “The Brand New Catastrophe” is available on pituitarybooks.com, Amazon.com, at independent bookstores or through the publisher, Sarabande Books.