One of my projects lately has been cleaning out my desk, file cabinets and the closet in my study. I’ve done this several times during the past few years, yet somehow, it seems as though the junk reproduces in the dead of night. Today I found something in my bookshelf I thought I’d thrown away in college!
It’s a book of quotes I got as a gift, maybe in junior high. It’s the sort of little gift book you’d find in a stationary store and each page has some famous or memorable quote designed to promote self esteem.
I found one that I felt matched our HPS world so well. It says, “I am only one, but still, I am one. I cannot do everything, but I can do something. And because I cannot do everything, I will not refuse to do whatever I can. I am only one, but still, I am one.” This is a quote from E. E. Hale. Hale was a Unitarian minister, well-known writer during the 1800’s, and served as a time as the chaplain to the United States Senate.
Hale was active in the anti-slavery movement and promoted a number of social reforms. I don’t know the context of the quote, or where he said it, but I’d guess it relates to his advocacy work. How true it rings today for us!
When you have such an incredibly rare disease, it’s easy to sometimes feel that there is nothing to be done. How is it possible that we can ever raise enough money for the cure when science is still grappling with so many much more common disorders? There’s too much to do to promote awareness, help people get an accurate diagnosis, and advocate for help from government agencies, major medical associations and pharma-companies. It’s too hard. There’s so much to do that whatever small thing little old me could contribute won’t make a difference in the long run. These are easy thoughts to have. They aren’t, however, true.
I never run out of things to do for HPS. I go to bed every night with my mind reorganizing my to-do list by items most urgent.
I’m not alone. Moving the cure forward doesn’t require a to-do list like this. Everything anyone does to help us contributes that much more to our progress. Like adding pebbles to a pile, someday the accumulation of our efforts will make a mountain!
It isn’t always the major things either. I know a person who was diagnosed with Hermansky-Pudlak Syndrome because a classmate in a sociology course (who didn’t have albinism) did a paper and presentation on albinism. They mentioned HPS as a small part of their talk, but what they said rang home to this person and caused her to do her own research. She took what she found to her doctor, was tested, and sure enough had HPS. Here, someone helped us that didn’t even realize it.
It isn’t important how much money you raise at a fundraiser, or how often you do an outreach, or how active you are on the listserv. It matters that you acted. It matters that you contributed. It matters that you tried and your efforts became part of the momentum that propels us forward every day.
Things are changing. When I was diagnosed in 2002, things were very different. There were only four known types of HPS then. No one with HPS had received a lung transplant. There hadn’t been a phase III drug trial for the pulmonary fibrosis of HPS. The HPS Network was less than half the size it is today. We are making progress.
You are only one, but still, you are one.