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…
Barry Haarde
Haarde, B. (2010). Dedicated to
Making a Difference. Matrix Health News, 5(4), 13-14.
Retrieved from http://www.matrixhealthgroup.com/NFall2010.pdf
