with SHELBY SMOAK, author of BLEEDER: A Memoir
Question: When and why did you start writing BLEEDER?
Shelby Smoak: The first draft of BLEEDER began in 2000. Funny to think of now—how long ago that was—but this explains why the book ends in 1998 because that was current for the time I started writing it. That next year was spent just getting the story out and its draft was a mess because I had lots to say about the many things that had happened to me. Thus, this early draft stretched to over 350 pages, so then I devoted the following years to cleaning up the storyline into something more focused and digestible and to working on the narrative’s language and style. When I felt it was done, I shopped the book around, but it took some time before finding its proper home at MSU Press.
I started writing BLEEDER because my early fiction attempts seemed like third person removals of the material that later informed BLEEDER. That is, it took me some time to realize that BLEEDER was the story I had to write before I could move on and write anything else. I was also under the intoxicating influence of memoirs like Angela’s Ashes and knew that my own story, told in this way, might not only prove cathartic for me, but might have potential as memoir.
Q: What is Hemophilia and how many people are hemophiliacs?
SS: Hemophilia is a genetically male-inherited disease whereby sufferers lack a plasma protein that allows their blood to clot properly. While a “normal” person with the protein will clot at 100%, a hemophiliac’s clotting level will be below 3%. To ameliorate this deficiency, the hemophiliac must be on constant plasma or synthetic-plasma product which supplies the blood protein intravenously. The treatment is lifelong because the blood-protein and its 12 hour half-life only temporarily raise the hemophiliac’s clotting level. Unlike the common view of external, unstoppable, and visible bleeding—though, of course, that can happen—a low clotting level normally results in internal bleeding to joint and muscle tissue. Pointedly, a knife cut is unlikely to be a hemophiliac’s demise while cranial bleeding is his greatest nemesis. Joint and muscle bleeding then leads to further complications such as joint damage, arthritis, and general physical disabilities.
As for numbers, the CDC estimates that 20,000 hemophiliacs live in the US. With approximately 1 in every 5000 male births affected by hemophilia, close to 400 hemophilic babies are born each year.
Q: How early on did you notice that your medical condition made you different than other kids, and how significant a role did Hemophilia play in your life?
SS: I don’t remember being any other way than as a sufferer of hemophilia, which immediately set me apart from other kids. Certainly, I tried to play as the other kids did, but I couldn’t keep up and my efforts usually only resulted in joint bleeds and painful recoveries with crutches and ace bandages, so part of my growing up was just learning that I was better off not trying to participate in normal kid activities.
As you can imagine then, Hemophilia greatly affected me; it made lifestyle decisions for me. In addition to not being able to participate in contact sports, I had irregular school attendance because of severe hemophilic bleeds or surgeries. My childhood was punctuated by long periods of limited mobility and solitude which the hemophiliac grows to know so well. Books and thoughts became my surest solace.
Q: When did you first learn you were HIV positive and how were you infected?
SS: I first learned I was HIV positive in 1990 when I turned 18. This is where BLEEDER opens. I was infected in the early 1980s because of tainted plasma product. Although I tested positive in 1985 (the first year a test was made available), the medical professionals saddled my parents with the decision of informing me, as I was still young and as HIV was still a highly stigmatized virus; they kept this knowledge to themselves. A law, however, required that I be informed when I entered adulthood, and so I was.
Q: As an HIV infected hemophiliac, danger is hiding in the darkness and around every corner. How complicated does your life become when bleeding becomes both a danger to you and all those around you?
SS: Regarding the threat of danger lurking in the darkness, you can’t live life like that, so you just put that out of your mind and go about your day as any person would. When severe bleeding occurs, however, life does get complicated because what the hemophiliac needs most then is time to heal and what a normal working life allows least of is…time to heal. Thus, life becomes a negotiation of keeping your job, maintaining daily necessities, and trying to find adequate time for proper convalescence. The effect to those around me is largely the stress and worry of illness and then, when bleeding limits me, the lifestyle changes that must be made to accommodate simple tasks like working, cooking, eating, sleeping, etc.
Q: Your parents are fairly prominent in BLEEDER. How did they cope with your medical issues and also help you cope with the emotional battles you went through?
SS: My parents accommodated my injuries as best they could. Often if I were in the hospital, they’d tag-team my and my sisters’ care so that during these times the family found themselves apart: me in the hospital, my sisters at home. But they worked it out and both Dad and Mom assured that I never lost health insurance. As for the emotional battles, I think they helped me with this by their own demonstration of positive attitudes. Even with everything that was going on, there wasn’t a lot of doom and gloom in our house. We just woke up and got on with our lives.
Q: Growing up and going through high school and college, you told very few people about your medical condition. Why was that, and if you had the chance to do things over again would you change your approach to revealing your medical condition to others?
SS: I didn’t tell people about HIV because there was still such a stigma attached to it. In the mid-1980s, Americans hazed hemophiliacs like Ryan White who, when his family disclosed his HIV-positive status, was banned from attending Indiana public school. This just wasn’t a time one could be comfortably open about being HIV-positive. I withheld too much comment about my hemophilia on the same grounds because the two conditions of “hemophilia” and “HIV” were so intimately tied together in the 1980s that one couldn’t mention hemophilia without a person thinking of HIV; in fact, that may be how America was largely exposed to hemophilia, through media coverage of HIV. Sadly, I wouldn’t change anything about revealing my condition if I were living in those same times. It was just safer to remain mute about these things.
Q: A lot of things changed medically from the beginning of the book in 1990 to the end in 1998, but you do not get the sense that much progress was made socially/culturally regarding HIV, particularly for an infected heterosexual. How have things, both medically and socially, changed from 1998 to 2012?
SS: Thankfully, things today are drastically improved, both medically and socially. Medically, HIV-positive individuals have care options that now remove the “death-sentence” bell toll HIV once rang. In 1990 when I began therapy there was only AZT, and that was it. Today, however, while it’s a chronic illness that necessitates lifelong care and while it still truncates life-expectancy, HIV is manageable and you can survive with it. Taking myself as example, I’m pushing thirty years now as a HIV survivor. Socially, too, there is more acceptance for HIV sufferers. I don’t think America today is the same place that would ban a 14 year old HIV positive boy from school, nor discriminate against that same person in a working environment. The informed population also now understands the sheer implausibility of contracting HIV from proximity and contact and, in general, a deep sympathy seems to exist for HIV survivors.
Q: BLEEDER is kind of a love story, or at least a “looking for love” story. The book ends on a hopeful note. Did things work out for you and Maria, your girlfriend at the end of the book?
SS: Things worked out for a time with Maria, but like the other relationships in the book, this one failed to prove long-lasting. Even as I revised the book and knew this truth, I decided to keep that hopeful ending because it was more an accurate reflection of my present life than for the reality of that specific relationship. Today I am extremely happy and in a loving, lasting relationship, so, though the person isn’t the same as in BLEEDER, the end result of hope and happiness is.
Q: BLEEDER takes place from your late teens to mid twenties. How old are you now and how is your health?
SS: I turned 40 last year. Oh geez, I’m getting old! I say this with inner joy because I often dreamed I’d never see 30! As to my health, there have been complications. Six years ago I underwent a total hip-replacement due to repeated bleeds in my hip joint; two years later, I broke a bone in my foot which took months to heal; and outside of those traumas, I have had a series of knee, ankle, and elbow bleeds that have required long-term convalescence. HIV is being maintained and hasn’t given me any complications recently, which is grand news. In fact, the biggest threat for me is likely HCV (Hepatitis C), a thing that I received, again, from the tainted blood supply. Like the early days of HIV, HCV has very few available meds and after enduring a rigorous therapy to try and eliminate HCV, it ultimately failed. Now, I wait again for my Merlin. That said, my day-to-day life is quite great. I’m active and have developed a lifestyle that, to all appearances, is “normal”: With my wife as my ever-faithful companion, we cook, swim, bike, hike (3-5 miles is my limit), and go out with friends for dinner and live music. And just like my peers and colleagues, I work. And somehow, at the end of the day, it’s a good, even great life.
Q: What advice would you give to a young hemophiliac and/or someone living with HIV?
SS: To a hemophiliac, I’d advise them to practice prophylactic treatment, something I only came to as a young adult. This means they’d treat with factor on a regular basis and keep their clotting levels up to prevent bleeding. This goes against the old-school way of handling hemophilia by waiting until there’s a bleed, and then treating. Prophylactic treatment lessens joint damage (which occurs when you bleed) and stays off the arthritis that will inevitably develop. I’d also advise both hemophiliacs and HIV-positive individuals to consider their diet and exercise. I don’t think people understand how much diet affects their bodies and how the American lifestyle of fast food is just absolutely terrible. In my College Composition courses, I make sure my students know that fast food is not food—that it’s genetically engineered in factories and laboratories. The body (and its health) responds to fresh fruits and vegetables, and you can also survive (quite happily in fact) eating meat perhaps 1-2 times a week. I’d also advise that, especially for hemophiliacs, you start to understand your body’s limitations and figure out what physical activities you CAN do and then do those. Be active; don’t let your hemophilia always ground you. Strengthening your muscles will reduce your joint bleeds as the joint will have the muscle support to lessen the strains that result in bleeding. I think ultimately, I’d just encourage a hemophiliac or HIV-positive individual to see how the illness might empower them and motivate them to do things they might have otherwise shied away from.
Q: What would you most like for people to take away from reading BLEEDER?
Q: What is next for you and your writing career?
SS: For me, the job is just to keep writing; it’s become a necessary lifestyle therapy. My current project (a novel) explores the complications HIV and hemophilia add to an adult trying to pursue normal life goals like marriage and especially children. Today, more and more couples conceive with the aid of fertility clinics and, given the risk of natural conception for HIV-discordant couples, they, too, must consult fertility clinics. However, US states have different laws regarding sperm usage from HIV-positive males, and, despite science’s ability to test sperm for HIV and assure its safety to mother and fetus, most states ban its use in fertility procedures. Thus, in this work, the drama of hemophilia and HIV continues but this is fictionalized and cast in adult domestic settings. I hope this work might not just shed light on the problems of infertility but also might suggest how America still has some catching up to do regarding HIV.