A Simple Matter of Conviction.
By Barry Haarde
How does one survive a plague? What does it take to pedal a bicycle across the United States? One might argue that the answer to both questions is largely the same.
In the early 1980s, I, along with nearly 10,000 other Americans with hemophilia, contracted both HIV and hepatitis C from blood and blood products used to treat our bleeding disorder. My brother and brother-in-law, both hemophiliacs, tested positive for HIV as well. In those days, there were no medications, little research and even less hope. At one point, HIV positive hemophiliacs were dying at the rate of one per day in our nation. Some blamed the gay community for spreading the disease into the nation’s blood supply. Others became enraged at the pharmaceutical and blood banking industries for continuing to collect and sell infected blood derivatives even after the risk of HIV transmission was known. Some mothers even blamed themselves for injecting the contaminated medication into their children’s veins. Boys with hemophilia and HIV were expelled from school and those living with HIV were usually fired from their jobs if their HIV statuses were exposed. There was little help from the government, and few places where one could turn for help or compassion. Even the churches most often closed their doors to anyone admitting they had HIV.
In 1990, I lost my brother-in-law, Pat, to AIDS. It happened only a few months after the death of Ryan White. My brother John and I fared better than most, and neither of us ever suffered an infection due to HIV, and our immune systems remained strong. Eventually, however, hepatitis C, the “other virus” with which we’d been infected, began to take its toll, and I lost my brother to liver cirrhosis in 2007. Shortly afterward, I was also diagnosed with cirrhosis, and was told that I had no more than a few more years to live without a liver transplant. My initial attempts to treat the disease with Pegylated Interferon and Ribavirin had been unsuccessful. Only after several additional treatment attempts was I able to defeat hepatitis C through the use of Infergen, a different type of Interferon, injected daily. Thus, I became one of the fortunate few with cirrhosis and HIV to cure hepatitis C.
There is a great deal of variation in the way people respond to an HIV diagnosis. Some choose to confront the disease head on and do not hesitate to inform others about their condition. They sometimes become activists and leaders in the HIV/AIDS community. Others succumb to the fear, ignorance, and stigma that have surrounded HIV over its thirty-year history. In the past, many lived and died quietly, refusing to inform even close friends and family members of the true nature of their illnesses. For more than a quarter of a century, I chose the latter path, until, under the threat of death, I came to believe that I simply had nothing left to lose. At that point, and only then, did I begin to emerge from the closet, tell the truth, and finally begin to live a life based on blunt and relentless honesty, activism and purpose. I didn’t yet know how I was going to do it, but I determined that no matter what the cost, I would begin to speak out and advocate for the hemophilia, HIV, and hepatitis C communities. All I lacked was a platform from which to begin.
Enter my bike. I had always been a competent amateur cyclist, having ridden many thousands of miles in club and charity bike rides. Never did I admit to my teammates and fellow road warriors that I was an HIV positive hemophiliac, until 2009, when I called my local newspaper, which ran a front-page story describing the reality of my life and the fact that I was about to ride in my eighth MS150 bike ride from Houston to Austin. From there, I’ve never looked back.
In 2010, just prior to achieving my miraculous cure from hepatitis C, I watched with fascination, the Race Across America (RAAM) documentary, Bicycle Dreams. I was still recovering my strength from nearly four years of Interferon therapy, so I knew I could never attempt a pace like that of the Race Across America, but something told me that if I worked and trained hard enough, I might just be able to ride across the country at a moderate touring pace. My training began in earnest on January 1, 2010. I went out and rode a 110 miles, which took more than nine hours. I then proceeded to ride 8,100 miles in 2010. In 2011, I once again lit out on the bike on the first day of the year, only this time, I rode more than 130 miles in seven and a half hours!
I resolved that to be truly meaningful, my attempt to cross the country by bicycle would have to be a fundraising vehicle for a cause near and dear to me, so I selected Save One Life, an organization which, through sponsorships, provides financial aid to people with hemophilia in foreign lands that do not have access to the medications that I as an American take for granted. The group’s founder and president, Laurie Kelley and I soon came up with a name and a logo for our fundraiser. We named it “Wheels for the World”, and the ride began in Astoria, Oregon on June 17 and finished in Portsmouth, New Hampshire on August 6, after traversing 3,667 miles across eleven states and Canada.
In addition to raising $45,000 for Save One Life, the ride functioned as a “rolling memorial” to the thousands of people with hemophilia who lost their lives to AIDS and hepatitis C. Additionally, I wanted my bike tour to be perceived as contributing to the elimination of the stigma and false perceptions surrounding HIV/AIDS.
Albert Einstein once remarked that “life was like riding a bicycle; in order to keep your balance, you have to keep moving.” I have learned many things in my journey through life with hemophilia and HIV. The lessons learned have not always been easy ones, but they are ones that I would not trade away. It is the tragedies in life and how we respond to them that define us and make our triumphs that much more compelling. To “keep moving” in the face of adversity often requires us to find within ourselves an inner discipline and sense of purpose. Whether riding a bicycle across the country, or confronting an HIV diagnosis, to succeed is simply a matter of conviction.