Book Review: Bleeder: A Memoir by Shelby Smoak
By Michelle Putnam, Associate Director of Research & Advocacy
Chances are if you head to your local bookstore you won't find Shelby Smoak's autobiography on the shelves. Barnes and Noble is not known for keeping a well-stocked “Hemophilia Memoirs” section. That simple fact is one reason that Smoak, who was diagnosed with severe hemophilia when he was a toddler, decided to write his story.
Smoak doesn't just have severe hemophilia, however. In the first chapter he brings the reader head-on into one of the most difficult days of his life: He has just turned eighteen, and he learns that he has contracted HIV from contaminated blood products. The same medication that kept him alive had now given him a deadly virus. Smoak was actually diagnosed a couple of years earlier, but his parents saw fit to tell him once he turned eighteen.
The book follows Smoak from 1990, the year he was diagnosed with HIV, to 1999. Despite his health challenges, he decides to attend college and fight for a normal life, although at every turn his dual health problems are there to remind him that he is different from the rest of his peers. Still, he is hopeful. In fact, Smoak is hopeful about many things: better medications, a cure, a girlfriend, a career. One of the successes of this memoir is that he sees his challenges through the same lens as anyone else would. His goals never change, despite the fact that the odds are sometimes against him.
Part of his success comes from the people in his life. His parents are a consistent presence in his life, teaching him to approach life with a combination of pragmatism and hope (and sometimes, well-placed anger at people who openly discriminate against their son because of his HIV diagnosis). Over the course of the book, Smoak is consistently mindful of his situation without letting himself dip too deep into despair. Through trips to the emergency room, his hemophilia treatment center, specialists, and therapists, we accompany Smoak on a journey that is sometimes painful, sometimes heart wrenching, but always powerful.
Although the book is a personal memoir, many of Smoak's experiences with factor and with HIV medications serve as an historical timeline. He advances from AZT to protease inhibitors and drug cocktails, from blood products to recombinants. For readers who have a bleeding disorder or know someone with a bleeding disorder, it is a remarkable way to recall how much things have changed when it comes to treating hemophilia and HIV.
In less capable hands, a story as dark and challenging as Smoak's could come off downright depressing. However, Smoak is an incredibly talented writer and his prose is lyrical and empowering. He is wonderfully unsentimental, and tells his story with honesty and without pity. At the end, the reader is left with a sense of peace and empowerment. If anything, we're left wishing he would continue his story and write about the next decade of his life.
Some say writing is therapeutic. For Smoak, it is also empowering, and a way to connect with a wider community. His story is entirely his own, but anyone with any connection to the bleeding disorder community will find it cathartic and well worth a read.
You can learn more about Shelby Smoak's other works here.