My condition, hemophilia, has always been an enigma for me. It’s been a huge challenge to my personal development, physical health, and mental stability. I wanted to believe that this disease was given to me for a reason. However, as the years progressed, I was wracked with hemophilia complications, and my faith in a greater purpose eventually waned. I arrived at a place of despair. I acted out, I forced myself to be normal, and I got a taste of that “normality” that I had wanted. And I have to say; it doesn’t taste as sweet as I’d thought it would be.
By disregarding my limitations, I harmed myself, giving myself epilepsy after a bad fall on the back of my neck. Then, I ignored the limitations of being an epileptic. I was making myself, and those close to me, suffer because of my selfishness.
Looking back, I can’t blame the little, clueless kid that I was. He didn’t know what he was getting himself into. At that awkward age of pre-adolescence, it’s quite natural to experiment and seek your self-identity. It was so tempting to jump on the “growing up” bandwagon. It didn’t end all that well.
I learned lessons along the path of growing up. Those lessons, however, cost me my health. I gave people who cared about me a difficult time. It led to a deep contempt for myself and my existence.
Guilt looks me in the eye and tells me that I have to get myself together. But guilt is a complex thing. Yes, it does motivate me to be a kinder, gentler soul for others, but at the same time, it fuels me with anger toward myself. I try my best to forgive myself for all the things that I have done. But it’s difficult. A voice inside my head tells me that I’m to blame, that it’s my fault I’m not normal. Sometimes I wish I’d never been born, so I wouldn’t have to make the people I love suffer.
If I had listened to my parents and accepted the limitations of both hemophilia and epilepsy, then I wouldn’t be suffering from seizures and persistent bleeds today. It’s a continuous process to learn to live within my limitations. But I don’t let those limitations prevent me from serving a greater purpose for myself and others. All my life, I wanted to pursue a false sense of normal, and it has gotten me nowhere. I admired this false god, and it closed my mind from the possibility of being happy with what I have right now. My stubbornness for wanting something I couldn’t have brought me to a place of disaster.
I’m a 25-year-old hemophiliac, and I’m bruised and scarred. It’s hard for me to accept where I am right now. I hope that one day I can look back at my life without regret.
To end, I’d like to share something I mentioned in a talk I gave at the World Federation of Hemophilia 2016 World Congress. It’s that the concept of normal is something conceptualized by humans and is therefore constrained by what we know and believe. Many people would consider people with disabilities to be abnormal — but I disagree. I see those with disabilities as people who are beyond and above-normal. I urge everyone to go beyond that. Look for your own normal by living within your means and limitations, but just enough so you can still pursue those things you believe are for the greater good.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.