By Michael George Bishop
My name is Michael George Bishop and I have Hemophilia B with inhibitors. I decided to share my story with the Hemophilia Federation of America (HFA) and “Voices” because I wanted other kids like me, with hemophilia -and those in physical or emotional pain – to know they are not alone in their journey.
I also want people to know that, after everything I have been through, if I had to do my life over, I would want hemophilia. I know that sounds crazy, but even though it has taken so much from me, it has also taught me a lot. For example, hemophilia has taught me I should take nothing for granted, not even something as simple as walking. It has made me realize everyone in the world has pain, so we need to be more compassionate and love people because we have no idea what they have been through or are going through.
My advice is to remain positive because feeling sorry for yourself and giving up doesn’t resolve anything. Remain strong, even when it seems impossible. If you can get through the pain, and always keep your head up, you are “unbreakable.”
As a young child, I suffered through many serious and debilitating bleeds. To add insult to injury, I wasn’t able to take Factor IX, and the factor I used is now not FDA-approved. This means, for years, my parents have had the burden of paying for all my medical expenses out-of-pocket.
One of my worst bleeds was when I developed a throat bleed. The blood was draining into my lungs, making it a very serious situation. Because I could not take factor, I had to go into surgery right away to have my tonsils out. Without surgery to do this, I had about a 20-percent chance of survival. I remember being wheeled to surgery and watching my mom and dad as they stood crying, and so was I. Thankfully, I recovered from this scary bleed.
My second memorable bleed was when I was in fourth grade. I was at school and fell down the stairs. I was in a lot of pain, but didn’t think much of it until I got a severe knee bleed. I could tell this wasn’t a normal knee bleed, as the swelling never went down and the pain continued long after I walked on it. We eventually went to the hematologist, who x-rayed my knee. We learned I had a dislocated kneecap, and a second surgery was in my near future. After surgery to repair the kneecap, I was counseled on how to perform exercises to help strengthen my knee. As a kid, though, I didn’t follow these instructions and ended up with a knee that no longer bended or straightened all the way. Needless to say, I missed a lot of school that year because I couldn’t walk well.
Just as I finally was recovering from the dislocated kneecap, I had another accident. I was in fifth grade, riding on an electric scooter with friends. My foot was sticking out (this foot was somewhat turned out as a result of my dislocated kneecap) and it hit a pole sticking out of the ground. I had developed slight osteoporosis in my leg, so my leg shattered. My leg broke in 12 places, and my foot was turned around. All I remember was screaming. My friends ran to get my parents and they called an ambulance. I was rushed into surgery, where they stuck a number of rods into my leg to hold it together. My mom explained to me the rods would be in for the summer only, and then they would be removed.
I had a rough summer that year because I couldn’t get out of bed and walk around. As I got a little stronger, my mom would call local hotels and rent time in the pool, so I could swim and try to get my leg and knee stronger. Progression was slow and I was on crutches most of the time once school was back in session. I remember my grandfather helping out a lot, too. He would pick me up from school when I had a bad bleed and stay with me until I was feeling better. Just walking was a real strain.
In middle school, I was still on crutches a lot and had a lot of severe bleeds that caused a lot of pain. I continued to miss school. I did, however, join the basketball team once I was feeling better and thought I had my strength back. I couldn’t do all the things my teammates could do, but I tried my best. Eventually, though, I just became embarrassed at what little I could do, so I quit the team. I tried to live out the rest of my middle school years as simply and easily as I could. It was challenging though, as the bleeds continued and I was always in a lot of pain. I started having a lot of sleepless nights. My parents were great – they would stay up with me all night long and keep me company.
Something really good happened to me, though, during my freshman year in high school. I met an amazing girl who became my girlfriend. We would talk a lot at night when I couldn’t sleep and helped me get through those lonely and painful nights. About halfway through my freshman year, however, I ended up with a significant knee bleed again. The pain would not subside, so back to the hematologist I went. Another painful surgery was performed. The post-operation exercises didn’t go very well. It was around this time my girlfriend broke up with me. Therefore, I had less motivation than before. I did try really hard for awhile, but it seemed with each attempt I wasn’t getting anywhere.
I think as a teenager, this surgery was more difficult, both emotionally and physically. I found I didn’t have the right attitude to get over it as quickly as in the past. I became angry – at myself, with God, and always wondering why this happened to me — why all the bleeds, the accidents, the hemophilia. To make matters worse, high school was more physically challenging. I had more stairs to climb, which produced more bleeds. I was really feeling low about everything and ready to give up. Thankfully, I had two things in my life I loved – art and music. I had drawn since I was a kid. I would draw to keep my mind off the pain of the bleeds, so I began drawing again. I also began playing music in eighth grade. It was a way for me to cope, an outlet for me.
I also met someone, a person who was able to help me see things in a more positive light. This friend was an incredible musician and, because he was older than me, he was able to teach me a lot about not only music, but also about life. He had a very strong faith, which inspired me to keep my own beliefs, which I was losing. I would be a completely different person if I hadn’t met him when I did. It is because of him, my family, and friends I am still here.
My sophomore year, I made it through without anything major happening. But I still had serious bleeds and continued to have difficulty walking at school. I also started to get really behind in my school work. So, the decision to home school me during my junior year was a good one.
My plans involve me going back to school and completing high school at the school building. I miss my friends. And in a way, I feel like going back and attending school would not allow my hemophilia to defeat me.