Concentration has been so hard today. I’m so tired. I keep having to go to the bathroom. I feel drained and weak. Every so often I keep breaking out in a sweat, even though I don’t have a temperature. But, my blood pressure has been good. I should be working on a story, but I’ve got a bad case of writer’s block. The subject matter is technical, and I can’t focus enough right now to do technical.
In the meantime, I thought I might try to overcome my writer’s block by blogging about some of the things on my mind. Perhaps they’re more distracting than I realize.
When I was at NIH with the film crew, they, of course, asked a lot of questions. I was so tired that week (starting to see a theme?) that I don’t remember most of what they asked me. The questions I do remember are the ones I felt I didn’t answer well, or was worried my answers would be misunderstood.
Nicole, the producer, asked me about the HPS sense of community. I can’t quite remember how she put it...it was something to the effect of even though being diagnosed with Hermansky-Pudlak Syndrome isn’t exactly great news, don’t we gain such a great community? (That doesn’t quite do it justice…wish I could remember how she put it exactly.)
It was one of those questions I wasn’t expecting.
It’s true. Those of us with HPS have an incredible sense of community. I count many of the HPS’ers among my closest friends. Even though we live states apart from one another, we’re in constant contact as though we lived next door to one another. We can understand each other in a way that no one else can.
But, (and I hope no one is offended) as much as I truly love my HPS friends, it isn’t worth it. I’d just assume none of us had ever heard of HPS. If I could wave a magic wand and cure us all, but the price would be that we’d never know each other, I’d do it.
Since there is no magic wand, however, I am so grateful that we’ve got each other. I really don’t know how I’d cope without this community we’ve built.
In the meantime, I thought I might try to overcome my writer’s block by blogging about some of the things on my mind. Perhaps they’re more distracting than I realize.
When I was at NIH with the film crew, they, of course, asked a lot of questions. I was so tired that week (starting to see a theme?) that I don’t remember most of what they asked me. The questions I do remember are the ones I felt I didn’t answer well, or was worried my answers would be misunderstood.
Nicole, the producer, asked me about the HPS sense of community. I can’t quite remember how she put it...it was something to the effect of even though being diagnosed with Hermansky-Pudlak Syndrome isn’t exactly great news, don’t we gain such a great community? (That doesn’t quite do it justice…wish I could remember how she put it exactly.)
It was one of those questions I wasn’t expecting.
It’s true. Those of us with HPS have an incredible sense of community. I count many of the HPS’ers among my closest friends. Even though we live states apart from one another, we’re in constant contact as though we lived next door to one another. We can understand each other in a way that no one else can.
But, (and I hope no one is offended) as much as I truly love my HPS friends, it isn’t worth it. I’d just assume none of us had ever heard of HPS. If I could wave a magic wand and cure us all, but the price would be that we’d never know each other, I’d do it.
Since there is no magic wand, however, I am so grateful that we’ve got each other. I really don’t know how I’d cope without this community we’ve built.
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