Since Ted Koppel’s documentary ran on the Discovery Channel about his friend Leroy Sievers and his battle with cancer, I’ve been reading Leroy’s blog.
In so many ways the stories of the people there fighting cancer are so much like the stories of many people I know with the Hermansky-Pudlak Syndrome type of albinism. And, in so many ways they are very different.
One of the topics of conversation that creeped up a while back among the regular posters to Leroy’s blog was the language they use to talk about their disease. Some people expressed an objection to talking about people “fighting cancer.” For them, all the analogies to a “fight” “battle” or “war” didn’t ring true to either their experience, or how they wanted to think about their lives with cancer.
Of course that prompted me to rethink the very name of my blog. Am I setting up this experience, this very story, all wrong by referring to it as a battle?
I’ve been thinking about it for weeks. The result, the title will remain the same.
This is a personal blog. While I may share a lot of HPS Network news items here, it was never meant to be some sort of “official” page. And for me, this is a war. I’ve been trying for weeks and I can’t think of any other analogy that rings as true. It’s a battle we fight every day. Every day there are resources and time devoted to winning.
Some of the cancer patients objected to the “battle” language because battles ultimately have winners and losers. They didn’t like the idea of being engaged in a “battle” all the time. Some didn’t like the idea that someday ultimately dying was some sort of defeat. I can agree with them there.
In fairness, many others readily use this lingo to talk about living with cancer.
I can’t answer this question for them, or for other HPS’ers.
For me, there’s nothing mild, or tame, or peaceful about HPS. I am not co-habiting with this disease in some sort of detante because I’m doing relatively well. Quite the contrary, I battle HPS every day – sometimes in physical ways and sometimes in emotional ways.
Working towards a cure is so complicated. I know many people, even in the HPS community, don’t grasp how truly complicated it really is – both from an advocacy standpoint as well as a research standpoint.
We all owe Donna Appell so much for her strategic mind – she’s so carefully plotted a course that has enabled the HPS Network to achieve quite a lot for a small and poor “kitchen table” non-profit. I can’t think of a general that could have plotted strategy any better.
Perhaps I think of this as a war because of my experience on the board of directors. Every day there is some battle to be fought, some strategic decision to be made, and some days, yes, there are casualties. I’m very tied into these events, maybe more so than the average patient.
Every day we make choices about this war. Donna, for example, didn’t return to work after her illness a few years ago because the battles were getting too big to fight a day or two a week.
There have been many times over the past few years when I’ve had to choose whether to do something for my career, for myself, for my family or for the war effort. They are real choices. They are choices I’m not complaining about. I feel honored to make them.
Wars entail sacrifice. They often require the soldiers to spend long periods of time away from their normal lives. They cause people to be wounded. Some people don’t ever return. Some people return, but are never the same again. Wars create heroes – they entail situations no average person should ever be a part of, and yet, heroes rise to the occasion anyway. Lastly, the horrors of war, no matter what your political persuasion are not an acceptable state. They must all, ultimately, come to at least a cease fire, if not a peace.
In so many ways the stories of the people there fighting cancer are so much like the stories of many people I know with the Hermansky-Pudlak Syndrome type of albinism. And, in so many ways they are very different.
One of the topics of conversation that creeped up a while back among the regular posters to Leroy’s blog was the language they use to talk about their disease. Some people expressed an objection to talking about people “fighting cancer.” For them, all the analogies to a “fight” “battle” or “war” didn’t ring true to either their experience, or how they wanted to think about their lives with cancer.
Of course that prompted me to rethink the very name of my blog. Am I setting up this experience, this very story, all wrong by referring to it as a battle?
I’ve been thinking about it for weeks. The result, the title will remain the same.
This is a personal blog. While I may share a lot of HPS Network news items here, it was never meant to be some sort of “official” page. And for me, this is a war. I’ve been trying for weeks and I can’t think of any other analogy that rings as true. It’s a battle we fight every day. Every day there are resources and time devoted to winning.
Some of the cancer patients objected to the “battle” language because battles ultimately have winners and losers. They didn’t like the idea of being engaged in a “battle” all the time. Some didn’t like the idea that someday ultimately dying was some sort of defeat. I can agree with them there.
In fairness, many others readily use this lingo to talk about living with cancer.
I can’t answer this question for them, or for other HPS’ers.
For me, there’s nothing mild, or tame, or peaceful about HPS. I am not co-habiting with this disease in some sort of detante because I’m doing relatively well. Quite the contrary, I battle HPS every day – sometimes in physical ways and sometimes in emotional ways.
Working towards a cure is so complicated. I know many people, even in the HPS community, don’t grasp how truly complicated it really is – both from an advocacy standpoint as well as a research standpoint.
We all owe Donna Appell so much for her strategic mind – she’s so carefully plotted a course that has enabled the HPS Network to achieve quite a lot for a small and poor “kitchen table” non-profit. I can’t think of a general that could have plotted strategy any better.
Perhaps I think of this as a war because of my experience on the board of directors. Every day there is some battle to be fought, some strategic decision to be made, and some days, yes, there are casualties. I’m very tied into these events, maybe more so than the average patient.
Every day we make choices about this war. Donna, for example, didn’t return to work after her illness a few years ago because the battles were getting too big to fight a day or two a week.
There have been many times over the past few years when I’ve had to choose whether to do something for my career, for myself, for my family or for the war effort. They are real choices. They are choices I’m not complaining about. I feel honored to make them.
Wars entail sacrifice. They often require the soldiers to spend long periods of time away from their normal lives. They cause people to be wounded. Some people don’t ever return. Some people return, but are never the same again. Wars create heroes – they entail situations no average person should ever be a part of, and yet, heroes rise to the occasion anyway. Lastly, the horrors of war, no matter what your political persuasion are not an acceptable state. They must all, ultimately, come to at least a cease fire, if not a peace.
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