My hand is fat and stiff right now. I can tell my friends about it, and they will laugh with me at the sight. They will hope I feel better. They will listen to me. But only Carly really gets it. Only she gets these things that pop up in our lives that ruin the things that are important to us. These more than annoyances caused by CF.
This isn't just a fat stiff hand caused by Cystic Fibrosis-related arthritis. It's a potentially good first date gone awkward when I reach for my wine glass and have to grip it like a five year old. This is a heroic effort to walk three blocks down a Brooklyn street on what should be an enjoyably NYC weekend trip. This is having to make sure I packed all my medicines and take them on time. The only thing that should bother my body this weekend is the freezing cold NYC winter temperatures, but it won't be. CF will be there.
Carly gets that. We bonded years ago in an online CF chat room while we were both in university. She is my Canadian counter part, born two days apart, diagnosed with CF 13 years apart. We have different starts to our stories, I was diagnosed at one, she at 14. By the time of our third year in college we were relatively the same. In private messages we would sit back and laughed at others who were "CF-obsessed" as I liked to think of it. Every aspect of their lives was so dictated by CF. Topics from how they would pay for this drug, how much of that medicine they were taking, how to close to transplant, or after transplant they were, how their depression creeped in as their disease got worse. It was as if they were their disease. At that time we were blind, arrogant, ignorant and healthy. We didn't know that it would one day be us---
Carly was first. I'll let her tell you more about it, but she was the first to get really "sick." I'm probably slowly on my way there now. She had her transplant and is getting stronger everyday---CF eats away at my lungs more and I get weaker. We are crossing paths in the bright light of day. There was even a time right after her transplant that I wasn't sure we would get each other anymore. She was on the "other side." She had her "transplant friends." But I was wrong---we have an understanding that is deeper.
So she gets that my hand isn't just fat stiff and uncomfortable--she gets that is a sign of more. An annoying sign of this disease that isn't exactly visible but rules our lives. She gets that I was super disturbed by the old age of the people on the Celebrex website when I was looking up information on the latest drug my doctor is giving me to relieve the pain. Our bodies are old, but we---we are still young.
We thought we would take this relationship and understanding of ours out into the public-- to educate some people about cystic fibrosis, have a dialogue about Canadian and US health care--and maybe let others out there in the CF community know that they too are not alone. So this is the start of out blog.
This isn't just a fat stiff hand caused by Cystic Fibrosis-related arthritis. It's a potentially good first date gone awkward when I reach for my wine glass and have to grip it like a five year old. This is a heroic effort to walk three blocks down a Brooklyn street on what should be an enjoyably NYC weekend trip. This is having to make sure I packed all my medicines and take them on time. The only thing that should bother my body this weekend is the freezing cold NYC winter temperatures, but it won't be. CF will be there.
Carly gets that. We bonded years ago in an online CF chat room while we were both in university. She is my Canadian counter part, born two days apart, diagnosed with CF 13 years apart. We have different starts to our stories, I was diagnosed at one, she at 14. By the time of our third year in college we were relatively the same. In private messages we would sit back and laughed at others who were "CF-obsessed" as I liked to think of it. Every aspect of their lives was so dictated by CF. Topics from how they would pay for this drug, how much of that medicine they were taking, how to close to transplant, or after transplant they were, how their depression creeped in as their disease got worse. It was as if they were their disease. At that time we were blind, arrogant, ignorant and healthy. We didn't know that it would one day be us---
Carly was first. I'll let her tell you more about it, but she was the first to get really "sick." I'm probably slowly on my way there now. She had her transplant and is getting stronger everyday---CF eats away at my lungs more and I get weaker. We are crossing paths in the bright light of day. There was even a time right after her transplant that I wasn't sure we would get each other anymore. She was on the "other side." She had her "transplant friends." But I was wrong---we have an understanding that is deeper.
So she gets that my hand isn't just fat stiff and uncomfortable--she gets that is a sign of more. An annoying sign of this disease that isn't exactly visible but rules our lives. She gets that I was super disturbed by the old age of the people on the Celebrex website when I was looking up information on the latest drug my doctor is giving me to relieve the pain. Our bodies are old, but we---we are still young.
We thought we would take this relationship and understanding of ours out into the public-- to educate some people about cystic fibrosis, have a dialogue about Canadian and US health care--and maybe let others out there in the CF community know that they too are not alone. So this is the start of out blog.
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