Voices: Remembering the Past
by Matthew Dean Barkdull
I was born with severe hemophilia (factor IX deficiency) in 1975. I inherited this disease from my carrier mother and her hemophiliac father—Ralph Dean Rytting. Knowing the struggles that her father endured—having lost his life at the young age of 44 and the crucibles that ensued prior to his death—my mother was intimately acquainted with the hemophilia of yesteryear. She passed along her father’s legacy and encouraged patience while I dealt with this disease. As a result, I viewed hemophilia as an occasional annoyance and adapted to it the best I knew how.
Growing up, I never knew any kids with hemophilia. Finally, when I turned eight, I started going to the annual hemophilia camp. This camp changed my life. I finally met others my age that also had bleeding disorders. Many a night, we boys in Morgan Cabin would stay up late at night to commiserate and complain about our disease. Some boys would compare their muscles with other boys and complain how hemophilia had made them weaklings. Others would swear and curse their hemophilia—blaming their parents, God, or dumb luck that this was their reality and lot in life. Others remained quiet and seemed dumbfounded at the intensity of feelings that others were sharing. I was one of these boys who remained quiet as what I had heard burned new impressions into my mind. For the first time in my life, I saw hemophilia as a literal prison sentence and a demon to some who were thus afflicted. Strangely enough, although my hemophilia was as severe as theirs was, I felt confused because I never thought my disease was a big deal. Nonetheless, I empathized with their plight and saw hemophilia in a different light.
Time passed. I graduated from preadolescence only to enter the gates of teenage hood, and the breadth of my experience with others suffering from hemophilia and other diseases expanded. I became acquainted with my mother’s cousin who was perpetually ill by a foreign sickness called HIV. Others developed hepatitis C. Many developed both. As the Utah Hemophilia Foundation in Utah had become better networked together, information would trickle down to my parents regarding the sad news of a recent death of a child, teenager, or adult with hemophilia—AIDS being the common culprit. What a tragedy! What a loss! How could the very medicine that we needed to stay alive also be killing us?
Although I miraculously evaded the tentacles of HIV, I started dealing with my own set of extra trials. My kidneys failed as a 15-year-old boy, and I received a kidney transplant from my father. As a very young adult, my worn-out ankle joints needed three separate ankle fusions over an eight-year-period. Recently, I got slammed with a bad flare up with hepatitis C, having to go on interferon treatment for almost three years. At the same time, I was diagnosed with renal cell carcinoma (kidney cancer), endured dialysis for three years, was diagnosed with the West Nile virus, and experienced seizures, respiratory failure, and pneumonia. My full-time employment was halted and disability benefits had to see us through the crucible. My wife had to return to work, and we tried to find a way to maintain parenting our three young girls—not knowing whether I would remain alive during the most intense of months.
Although I possess a native cheery disposition, I sank into a literal depression as memories of times past revisited me. I began to remember my hemophilia camp peers struggle with emotions that 8-10 year-olds are not equipped to comprehend. I remember the hurt in their eyes and how they struggled to make it through this foreign diagnosis and reality at a time where society expected them to learn, develop, romp and play.
Why do I share this story? I share it because I feel I must or else the voices and lessons of the past will be permanently silenced with the ado of the present. I stand with you as fellow-sufferers, both patients and parents alike. We must listen to these voices echoing from the past. I feel these voices are telling us not to give up hope and to press forward with confidence despite budget shortfalls, research lapses, and insurances woes. They tell us to disregard the naysayers and to focus on what lies within our power to make a difference, however seemingly small the contribution. We must tell our stories and learn from those who have gone before—whose stories have been unuttered and silenced through death. This bleeding disorders community of ours is unique in that we have so many heroes in our midst and legacies that we need to learn from and incorporate into our current decision making processes.
Let’s all share our stories! Let’s be steadfast and vocal—carrying on where many who are not with us have left off. Then, with the utmost confidence, we will see the miracles of cures, positive legislation, and lives be restored. Among anything else, we have these responsibilities to those who will come and those whom we remember.
