I got more to say about lots of stuff. But now is not the time.
Sunday, February 21, 2010
high hats and arrow collars, white spats and lots of dollars
MY friend Lo turns 33 this week and we celebrated last night. Lo is one of few who is down with the CF thang, and sicne I know she reads this blog, I thought I'd give her a B-day shout out!
I got more to say about lots of stuff. But now is not the time.
I got more to say about lots of stuff. But now is not the time.
Friday, February 12, 2010
this is what I remember most about dying
From "Controlling Death - Compromising Life":
"Choosing not to transplant means learning how to live with limitations and uncertainties that doctors cannot make go away. These limitations and uncertainties are embodied in the chronicaly ill, the disabled and the dying - they symbolize the failure of scientific medicine to control nature. In an ableist society, physical limitation, pain, and the loss of abilities stray too far from the cultural ideal of the body. For the able bodied, the disabled are the Other, a threat to life's narrative representing uncertainty, doubt and incompleteness...Technologies of normalization are instrumental to the systematic creation and control of "anomalies" in the social body (Foucault 1973, 1980)...within these technologies, the body becomes a matter of norms, averages, and deviations, transformed into something calculable and determinate rather than something shrouded in mystery and determined by fate or chance." (Maynard 214)
Yeah. so.
So it is somehow not OK to talk about death. To say, I choose not to live. I don't mean suicide, though I think it fits in. I mean simply the idea with Cf that we would want transplant. It isn't that I don't understand why we choose TX. My uncle is nearly 14 years out. I get it. Fourteen years is a huge chunk of life and what he has accomplished in that fourteen years compared to the 44 before it is great. He feels great. There is hope in that story and the stories of so many others. But hell, what about all the stories that don't end that way. Those are the ones I'm interested in because those - far more the norm that the others - are NOT the ones were suppossed to look to.
Positive thinking has never been my forte. I don't mean to say I have no hope. It is not a nihilitic approach that I take to this life, it's only that idealism makes me nauseated sometimes. I like things that make sense, that can be proven. It doesn't mean I eschew all things spiritual for an entirely materialistc outlook (as my own father might have you believe), it's just that...I don't like having my heart broken and my heart can't break if I don't let it believe in that which might not be true.
Never fear, despite how I try, this heart breaks daily. It breaks today. It's been broken for months. years maybe. and that's OK. It isn't sad to live with a broken heart, it isn't a bad point of view. It's just one that you have to get. If you don't "get it" then you just can't understand and I don't know that I have the words to show you. But Paul Simon does, "losing love is like a window in your heart, everyone sees your blown apart, everyone sees the wind blow."
I think we live more fully by allowing ourselves to feel the pain of the world rather than pretending "everything will be OK." No, it won't. and it's OK that it isn't OK. Except we're not suppossed to talk about it. I'm not supposed to tell my family - my family with the history of a CF uncle 14 years out of transplant - that I might be OK with dying without TX. and yeah, I know, I have kids. I owe it to them to try, right? But do I? Would it be so bad for them to witness the death I was meant to have, the CF death? Versus the death that science could give me, the TX death? And is this all easy for me to say, simply because I don't feel the presence of my own death right now?
Because I am pissed off that I keep losing people I love to death. Because in my own way, the ultimate FUCK YOU to CF might not be fighting the death but giving into it with grace. Turning the other cheek and saying to this body, "I forgive you, let's go now."
"Choosing not to transplant means learning how to live with limitations and uncertainties that doctors cannot make go away. These limitations and uncertainties are embodied in the chronicaly ill, the disabled and the dying - they symbolize the failure of scientific medicine to control nature. In an ableist society, physical limitation, pain, and the loss of abilities stray too far from the cultural ideal of the body. For the able bodied, the disabled are the Other, a threat to life's narrative representing uncertainty, doubt and incompleteness...Technologies of normalization are instrumental to the systematic creation and control of "anomalies" in the social body (Foucault 1973, 1980)...within these technologies, the body becomes a matter of norms, averages, and deviations, transformed into something calculable and determinate rather than something shrouded in mystery and determined by fate or chance." (Maynard 214)
Yeah. so.
So it is somehow not OK to talk about death. To say, I choose not to live. I don't mean suicide, though I think it fits in. I mean simply the idea with Cf that we would want transplant. It isn't that I don't understand why we choose TX. My uncle is nearly 14 years out. I get it. Fourteen years is a huge chunk of life and what he has accomplished in that fourteen years compared to the 44 before it is great. He feels great. There is hope in that story and the stories of so many others. But hell, what about all the stories that don't end that way. Those are the ones I'm interested in because those - far more the norm that the others - are NOT the ones were suppossed to look to.
Positive thinking has never been my forte. I don't mean to say I have no hope. It is not a nihilitic approach that I take to this life, it's only that idealism makes me nauseated sometimes. I like things that make sense, that can be proven. It doesn't mean I eschew all things spiritual for an entirely materialistc outlook (as my own father might have you believe), it's just that...I don't like having my heart broken and my heart can't break if I don't let it believe in that which might not be true.
Never fear, despite how I try, this heart breaks daily. It breaks today. It's been broken for months. years maybe. and that's OK. It isn't sad to live with a broken heart, it isn't a bad point of view. It's just one that you have to get. If you don't "get it" then you just can't understand and I don't know that I have the words to show you. But Paul Simon does, "losing love is like a window in your heart, everyone sees your blown apart, everyone sees the wind blow."
I think we live more fully by allowing ourselves to feel the pain of the world rather than pretending "everything will be OK." No, it won't. and it's OK that it isn't OK. Except we're not suppossed to talk about it. I'm not supposed to tell my family - my family with the history of a CF uncle 14 years out of transplant - that I might be OK with dying without TX. and yeah, I know, I have kids. I owe it to them to try, right? But do I? Would it be so bad for them to witness the death I was meant to have, the CF death? Versus the death that science could give me, the TX death? And is this all easy for me to say, simply because I don't feel the presence of my own death right now?
Because I am pissed off that I keep losing people I love to death. Because in my own way, the ultimate FUCK YOU to CF might not be fighting the death but giving into it with grace. Turning the other cheek and saying to this body, "I forgive you, let's go now."
Thursday, February 4, 2010
I think I can I think I can
La clinica. Things is good. FEV1 71%, FVC 90 (wow), 25/75 33%. Looks like this l'il engine is back in business.
Synergy tests and MAC results were not back yet. My guess is a no on the MAC (I hope) since PFTs bounced back pretty easily post abx. I hope so. I am in no hurry to be on long term abx. Cepacia was a no. I figured it was, but it was nice to hear anyway. I hope the synergy results show some good options though, since the working antibiotic list seems to diminish with each culture.
AND, I ran for 10 minutes straight this morning. I've been treadmilling every other day for three weeks routinely now. I had this revelation about running. Fear. I was afraid of it for some reason. I'm not sure i can explain the reason but only that I recognized it. I pushed past it. I'll be running a mile in no time - something I have never really been able to do.
I remember in my first yoga class years ago, one of the girls talked about fear. and I was like "Fear? In yoga? whatchu talkin' 'bout, Willis?" but that comment always stuck with me, and I feel like I get it now. So at that moment where I want nothing more than to STOP RUNNING, I keep going. And amazingly, I live through it and get a second wind of sorts. It's pretty cool. This is one of the things I have felt the proudest of, for many reasons: because I hate running though I have tried to do it sooo many times over the years, because it is hard to keep doing something you don't like to do just because it is good for you, because I am seeing the results. I have had the idea of a triathalon in the back of my head for years now and suddenly I can actually imagine accomplishing such a thing.
So a few posts back I started using some writing prompts from a magazine I read called The Sun. I don't think I had an overwhelming response of participants (or any)joinging me in the prompt writing department. That's OK. But, offer is open again if you want to join in. This month's topic is "slowing down." Seems like a no brainer for a CFer, but you can take it where ever it may lead. I'll get around to writing on it in the next day or so.
Peace out, homies.
Synergy tests and MAC results were not back yet. My guess is a no on the MAC (I hope) since PFTs bounced back pretty easily post abx. I hope so. I am in no hurry to be on long term abx. Cepacia was a no. I figured it was, but it was nice to hear anyway. I hope the synergy results show some good options though, since the working antibiotic list seems to diminish with each culture.
AND, I ran for 10 minutes straight this morning. I've been treadmilling every other day for three weeks routinely now. I had this revelation about running. Fear. I was afraid of it for some reason. I'm not sure i can explain the reason but only that I recognized it. I pushed past it. I'll be running a mile in no time - something I have never really been able to do.
I remember in my first yoga class years ago, one of the girls talked about fear. and I was like "Fear? In yoga? whatchu talkin' 'bout, Willis?" but that comment always stuck with me, and I feel like I get it now. So at that moment where I want nothing more than to STOP RUNNING, I keep going. And amazingly, I live through it and get a second wind of sorts. It's pretty cool. This is one of the things I have felt the proudest of, for many reasons: because I hate running though I have tried to do it sooo many times over the years, because it is hard to keep doing something you don't like to do just because it is good for you, because I am seeing the results. I have had the idea of a triathalon in the back of my head for years now and suddenly I can actually imagine accomplishing such a thing.
So a few posts back I started using some writing prompts from a magazine I read called The Sun. I don't think I had an overwhelming response of participants (or any)joinging me in the prompt writing department. That's OK. But, offer is open again if you want to join in. This month's topic is "slowing down." Seems like a no brainer for a CFer, but you can take it where ever it may lead. I'll get around to writing on it in the next day or so.
Peace out, homies.
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