I had a crappy night last night. I felt fine, but I couldn’t stop thinking about work and all the turmoil there. From there my mind wonders to even bigger subjects that are hard to explain to anyone.
I was laying there, thinking about how these are the things I need to be blogging about. That’s part of the point, after all – to tell our story. Yet, trying to describe what it’s like to co-habit with Hermansky-Pudlak Syndrome, even when you’re in pretty good health, is like looking out a gigantic panoramic picture window and trying to describe it to someone else looking out the same window through the center of a roll of toilet paper. They can see what you see – but how do you get them to appreciate the view in its entirety? The picture is so big, so interwoven, that it’s hard to explain just a section at a time.
Sometimes I feel like living with HPS is like having a double life. I feel like I’m straddling two worlds with a foot in each. On the one hand, you can’t dwell in the HPS world, or what’s the point in the quest for the cure? What’s the value of the cure if you stop living? Because the onset of the most serious symptoms can vary so widely, no one knows if that reality is just around the corner, or a decade or more away. So, you try to live as normal a life as you can. You try to remind yourself that what’s in the medical literature is what science knew yesterday, not what they might know tomorrow.
But, the other side of the reality is that you just don’t think about the future the way other people do. You co-habit with the awareness of things as if it were some kind of a ghost. While we might be writing a new future for HPS, we’re still living in the present where there is no cure. While I might be pretty healthy, I’ve watched friends die of HPS and that’s as much of a reality as anything else.
The result is that when certain everyday life things happen, they sometimes carry a completely different significance for me. Things like career transition, dating, or retirement planning have this whole other dimension to them that no one in the “normal” world can ever seem to appreciate. If you try to share your reality, perhaps in hopes of problem solving it, you usually get chided for being so dark, negative, or dramatic.
My conclusion is that blaming me for the way I sometimes feel, for the things that worry me, is easier for most people in the “normal” world than admitting that my concerns are valid. To admit that would be to leave the comfortable land of denial behind.
I was laying there, thinking about how these are the things I need to be blogging about. That’s part of the point, after all – to tell our story. Yet, trying to describe what it’s like to co-habit with Hermansky-Pudlak Syndrome, even when you’re in pretty good health, is like looking out a gigantic panoramic picture window and trying to describe it to someone else looking out the same window through the center of a roll of toilet paper. They can see what you see – but how do you get them to appreciate the view in its entirety? The picture is so big, so interwoven, that it’s hard to explain just a section at a time.
Sometimes I feel like living with HPS is like having a double life. I feel like I’m straddling two worlds with a foot in each. On the one hand, you can’t dwell in the HPS world, or what’s the point in the quest for the cure? What’s the value of the cure if you stop living? Because the onset of the most serious symptoms can vary so widely, no one knows if that reality is just around the corner, or a decade or more away. So, you try to live as normal a life as you can. You try to remind yourself that what’s in the medical literature is what science knew yesterday, not what they might know tomorrow.
But, the other side of the reality is that you just don’t think about the future the way other people do. You co-habit with the awareness of things as if it were some kind of a ghost. While we might be writing a new future for HPS, we’re still living in the present where there is no cure. While I might be pretty healthy, I’ve watched friends die of HPS and that’s as much of a reality as anything else.
The result is that when certain everyday life things happen, they sometimes carry a completely different significance for me. Things like career transition, dating, or retirement planning have this whole other dimension to them that no one in the “normal” world can ever seem to appreciate. If you try to share your reality, perhaps in hopes of problem solving it, you usually get chided for being so dark, negative, or dramatic.
My conclusion is that blaming me for the way I sometimes feel, for the things that worry me, is easier for most people in the “normal” world than admitting that my concerns are valid. To admit that would be to leave the comfortable land of denial behind.
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