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In a Sense, Those with Cancer are Luckier
from PD

Ed: Long time reader, first time emailer. Thanks for your efforts with this site. I’m a 20-year P sufferer with lots of unfair social experiences that you’ve likely heard and experienced before.

In response to Hazel’s Reasons to be Glad We Are Flakers:

What Hazel’s friend is suffering [AIDS] is truly a tragedy. I wish that she didn’t have such a battle. Another point was made that we can take solace in the fact that P won’t kill us.

Such a thought actually reminds me of just how difficult P is to deal with.

Recently, after Lance Armstrong won the Tour de France, I viewed a TV story about how he had overcome cancer and long odds to win again (not to mention live!). I’m proud of him. At the same time, I think he was actually lucky in that if he had to deal with disease, at least it was something he could overcome. Also cancer is, in a sense, respected by outsiders in a way that P is not. I realized that I would trade places with him in a second, even if the championships and fame were left out of the deal. I’d take the big C over the big P any day. At least there would be the potential for a big payoff beyond all the pain and effort. I want that kind of chance. I want my efforts to pay off! If not through permanent relief, than through respect.

Forgive me for seeming so negative and for extracting such a point from Hazel’s compassionate and thoughtful email. 99% of the time I’m strong in the face of my family, friends, co-workers, and within myself. I get up every day and try the old and new for relief. When I find relief, I try hard to believe that I’ve finally done it. Reality has always hit hard!

Just the same way that there is a tragedy in Hazel’s friend’s story, there’s a tragedy in all the lives of P sufferers. Today, I’m pissed about it. Tomorrow I promise to get up and go find all the success in life I can. -PD


Ed’s Response: I think you’ve articulated a sentiment most of us have felt but few have had the courage to share. A friend of mine who is in the care-giving profession once confessed to me that her biggest regret was her "inability to set aside her mandate to care for others long enough to experience others caring for her." It took a lot of courage for her to admit that, I thought.  

I have often voiced here the notion that, since our P is typically not fatal and not even debilitating in the extreme, we should willingly defer sympathy to those afflicted worse than we. But, in fact, there is this darker side to our disease, and we should not sweep it under the rug, especially not here in a place that is ours.

That darker side — at least for those of us who understand our disease — is that we have, for our different lengths of time, pursued our remedies in full knowledge that those pursuits are ultimately hopeless. We have endured inconvenience and pain, significant expense in both money and time, knowing full well we were not "reaching to beat it" but at best were stretching to subdue it: if not a cure — which has not been available to us — at least some time during which we could forget about it. And because we have not feared death as a consequence of our disease, we have experienced a kind of shame about feeling sorry for ourselves.

I hope that I will be alive to write a eulogy upon the demise, once and for all, of P as a human disease. It is in that context that I would strive to give full vent and voice to the misery we have experienced not just from the P, but from being made to believe we should not feel sorry for ourselves, because, after all, we’re not so bad off as....

I don’t know whether I would have ever traded my P for cancer, but I do know that I would not do so today. I do believe that I will live among (probably am already living among) the generation that will finally "beat" both these diseases. My children are likely to invent the necessary technologies; my grand-children will resolve the moral quagmires that inhibit widespread acceptance and application of those technologies. For my great grand-children there will be altogether new definitions for what it means to be alive and healthy — and to be dead. I believe intelligence continues to evolve and I inhabit a relatively early branch of the tree.

But in the meantime, PD, you have a right to be pissed about our situation. We all do. But we owe it to our progeny to "get up and go find all the success in life we can." In one sense, it is our way of thanking those next generations, in advance, for what they will bring about. -Ed

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