Someone once wisely observed that success and fulfillment in life was principally achieved by just showing up. Never much of a people-person, I had generally avoided showing up at very much of anything over the course of my life. Perhaps that was due in some measure to having been born with severe hemophilia A in 1965.
I had grown up in a rural area with no local hemophilia treatment center, no summer camps, and perhaps most notably, no factor concentrates. Years of repeated knee hemorrhages had often resulted in days spent inside reading or studying music. Limping my way through childhood often resulted in the inevitable teasing from other kids. “If I cut you, will you bleed?” was a common refrain. I learned to avoid situations where I would have to talk about my bleeding disorder and began to prefer my own company or the company of my family.In 1985, AIDS entered our lives. I was tested with my brother and brother-in-law as were thousands of other hemophiliacs.
After being advised that the risk of AIDS was “minimal,” we had continued using factor concentrates and each of us tested positive for what was then referred to as HTLV III, later renamed HIV. Pat, my brother-in law, was gone by 1990. AIDS was never mentioned at his funeral. My brother, John, survived a paralyzing stroke in the same year as his HIV diagnosis. When hearing the news from the man in the white lab coat that “you’ll probably die within three years,” what does one do at the age of 19? At a time when most are planning their careers and looking forward to marriage and a family, I found myself asking some very difficult questions. What would I do with whatever time I had remaining? Who would care about someone like me with a dreaded and lethal disease? Did I even want to live in a world that sometimes treated AIDS victims by terminating them from their jobs, firebombing their homes and denying them medical care in hospitals?
There were many questions and no answers. Like many others, I simply made the best of things and prayed that a cure would be found. I pursued a career in music as a trombonist, which eventually led to some national tours with Broadway shows and the Tommy Dorsey Orchestra. I had the opportunity to perform with Bob Hope, Perry Como, Rosemary Clooney and many others. I eventually left the music business, as health insurance is a little hard to come by when playing the trombone for a living.
At the age of 30, still surviving HIV and hepatitis C, I decided to settle down and get a day-job. Although society’s attitudes toward AIDS and those living with HIV began to slowly change over the years, I still found it very difficult to confide my medical history to anyone. In a 25-year period of time I told no more than a dozen people about my HIV status. However, things changed dramatically for me in 2007. My brother passed away. He lived a courageous life until liver failure from hepatitis C took him from us in 2007. Other than a friend in California, my brother was the only other person with hemophilia in my life. During the time that my brother was still in the hospital, I began Interferon treatment for hepatitis C. I did not respond to my initial treatment attempt and for the second time in my life, doctors told me that without a liver transplant, I would not live much longer. My experiences in 2007 resulted in many changes in my life. I began to show up. I resolved that whatever the outcome, I would not depart this world quietly…
Haarde, B. (2010). Dedicated to Making a Difference. Matrix Health News, 5(4), 13-14. Retrieved from http://www.matrixhealthgroup.com/NFall2010.pdf