I’ve always known I had hemophilia, even before I knew what it was. Since it’s all I’ve ever known, there wasn’t really an “aha!” moment where anything changed. I’m 26 now, and for as long as I can remember, I knew I was different from other people, just because of how careful I had to be whenever I left the house.
Since I was little, my mom told me stories about her brother, my Uncle Rudi. He had hemophilia at a time when it was a lot harder to manage. Back then there were far fewer treatments, and he had to limit his activity severely.
It was tough being a kid with hemophilia. I felt different and not in control. But the more my mom told me about Rudi, the more I realized how lucky I was to grow up when I did.
Rudi lived in a time before they tested blood products for the HIV virus, and about half of all people with hemophilia became infected with HIV after using contaminated blood products. About 90% of those with severe hemophilia were infected. Many developed AIDS and thousands died, including my Uncle Rudi. I was only 2 when it happened, so I don’t remember him at all, but I’ve always felt his presence.
My mom wanted to make sure he wasn’t forgotten, which is why she told me so many stories about him. I’m a comic strip writer based in San Francisco, so I wrote a strip about Rudi for her. I asked my friend Myisha Haynes to illustrate it, letting her know that it was deeply personal. She loved the script, so I sent her over a bunch of pictures of me, Rudi and other members of my family. She did a fantastic job of illustrating us all with our respective likenesses while bringing her own style to the comic.
In the comic, I write that I’m at war with my body like Rudi was, but that he never had the army I do. I was born in the ’90s, and by that time they’d invented far better medications than my uncle ever had. They’re stronger, last longer, and I can even infuse myself in the comfort of my own home. All this puts me in a position to do a lot more than Rudi was ever able to do. I can also recover from injuries in ways that he couldn’t. While we both had tremendous support from our friends and family, that can only go so far.
In the short comic, I write that my scar tissue is a gift. It reminds me that things could be a lot worse. I don’t have severe hemophilia, so I don’t have a port to infuse. But that means I’ve got to poke needles in my hands a lot more than some other people with hemophilia do. I have shiny tracks of skin above my veins, but because of that, I don’t have debilitating pain. I don’t have a limp. And sometimes I even have the luxury of not having to think about my hemophilia. It’s an incredibly privileged position to be in, despite how serious my disability can be, and scar tissue is a small price to pay for that.
Creating comic strips helps me get through everyday life, which my hemophilia is a big part of. Life is hard. And it’s confusing. And writing helps me make sense of it all.
Learn more about Morgan Hampton at his website, moellenial.com.