Living on the frontlines

Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life

I was struck by how much these remind me of waves.

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Heather Kirkwood: I’ve kept a journal since I was about 13 years old. In it, I recorded everything around me fit for public consumption (you never know who might find a journal.) I recorded the day-to-day events of life, commentary on world events, and the rites of passage I experienced growing up. As an adult, however, life suddenly didn’t inspire entries – it got in the way of them. Once grand ambition faded into the pragmatism of trying to pay the bills. Then, in 2002, I learned I had Hermansky-Pudlak Syndrome, a rare type of albinism that causes a myriad of other health problems including a bleeding disorder, colitis and pulmonary fibrosis. At 29, I learned most people with the type of HPS I have pass away in their late 30s to early 40s. Suddenly I wanted to journal again. I wanted to leave a record of what had happened to me and what I’d learned from it. Yet writing it down has often been too painful. Here is my attempt to reconnect with my old self. I don’t want my life to be defined by HPS. I want to think about the everyday occurrences of life. At the same time, however, HPS is constantly teaching me things I want to share.

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