While working on the newsletter I produce for my magazine and eating a chicken salad wrap, I heard another story on NPR that perked up my ears. It’s a kind of radar I seem to be developing for stories that have anything to do with science, genetics, health or mortality. This one had them all.
A man named Ronald Bailey, the science correspondent for Reason magazine, a libertarian publication, was being interviewed on the NPR program “Day to Day” about his recent article concerning whether, if it were possible, he would want to know when he was going to die. The article its self (despite being on deadline I couldn’t focus until I’d sneaked a peek at it) was about all of our advancements in the study of genetics.
It’s increasingly possible for all sorts of people, not just we HPS’ers, to get that kind of glimpse into the future. We’re finding more and more genetic links to disease and thus, it’s increasingly possible to know in advance what might make us sick, and what, in the end, might cause our demise and even how long it might take.
In the end Mr. Bailey and I reached the same conclusion, but for very different reasons. We both seem to agree that knowledge is power. Knowing what we’re genetically pre-disposed to allows us the ability to react and try to re-write that pre-designed destiny.
Looking back at the first time Hermansky-Pudlak Syndrome was ever mentioned to me, I often can’t help but wonder what those doctors really knew. I was told that HPS was a minor bleeding disorder easily treated with blood platelet infusions for surgeries or major trauma. Colitis, lung disease and a limited life expectancy were left out – either because the doctors really didn’t know, or because they saw no value in telling me.
Granted, I was in a pretty fragile emotional state back then. At the time I thought I had Crohn’s disease and the doctors told me that even with ostomy surgery, I’d likely have future flare ups. I can remember crying for hours at the prospect of going through that trauma not once, but repeatedly throughout my life. I’ve been so blessed that thus far, any flare ups have been quite mild.
It was only 10 years later that the rest of the puzzle came together thanks to a nosy doctor and a quick google search. It was then that I had the facts – as well as the gloomy prognosis of no treatment, no cure.
Fast forward four years. Our phase III trial is up and running. Two HPS’ers have had lung transplants when four years ago no one thought it would happen. There are several other advancements in the pipeline. And we, as patient advocates, have played an active role in those developments.
We’ve raised money, given up bodily fluids, shared information and supported one another – all chinks in the chain of events that will someday yield better treatments and a cure. If our doctors had kept us in the dark because of a gloomy outlook, we all would have been robbed of that opportunity to alter our future.
Bailey did mention the power of being able to react – but his motivation for wanting to unravel the cosmic schedule of his life had another peg – and that’s where he and I part company.
In the NPR interview he said that if one knew they were going to develop a traumatic and life limiting disease in their 40s, perhaps they would make different choices in their 20s. He thought, for example, that maybe someone would elect not to spend 10 years in graduate school. He surmised that if he knew his time on earth were short, he’d get busy on all those book ideas floating in the background of his mind. I can relate to that one!
But as I listened to him, my first reaction was “What an amateur.” Yet another person with this Hollywood view of mortality. To myself I thought, “He thinks that because he’s never actually been there.” If you know you’re life might be shorter than everyone else’s, suddenly you’re somehow entitled right? You’ve got the gift of freedom to run around doing only the things you want to do in life, only the things that offer real meaning and personal satisfaction. I think I actually let out an audible cynical grunt.
That’s what I thought four years ago.
I thought somehow suddenly I’d have this incredible personal freedom in my life. Life might be shorter than I’d thought, but it would be better somehow. Yeah right. I guess someone forgot to tell the landlord, the electric company, the gas company and my stomach that I needed to devote my existence to only profound, enjoyable and greatly satisfying activities. Somehow they all expected to be paid or fed, regardless of my diagnosis. And by the way, news flash – being sick isn’t cheap!
I hate to be a downer, but real life marches on regardless of whether your genes are programmed for early destruction. The only people who really get that kind of freedom are people who have money.
The other thing that disturbed me was the assertion that things that required long-term time investments might not be worth it if you knew your life was short – things like graduate school. How sad an outlook is that? The thing keeping me from grad school is money and health insurance – not a lack of desire to go because I might not be around in 10 years.
That kind of attitude only focuses on the result, and not the journey. Looking back at college I loved it. The most valuable parts of my college education weren’t simply the diploma at the end – it was the five years of experiences and growth that happened along the way. Besides – who knows. The whole idea of studying genes isn’t to create some sort of cosmic life expectancy clock – it’s to learn how they work so we can change the future.
And ultimately, the duration of our lives isn’t up to us anyway. We can tinker and devise and work within God’s plan, but in the end it’s still His plan.
Check out the article and the interview at:
http://reason.com/news/show/119410.html
http://www.npr.org/templates/story/story.php?storyId=9378371
A man named Ronald Bailey, the science correspondent for Reason magazine, a libertarian publication, was being interviewed on the NPR program “Day to Day” about his recent article concerning whether, if it were possible, he would want to know when he was going to die. The article its self (despite being on deadline I couldn’t focus until I’d sneaked a peek at it) was about all of our advancements in the study of genetics.
It’s increasingly possible for all sorts of people, not just we HPS’ers, to get that kind of glimpse into the future. We’re finding more and more genetic links to disease and thus, it’s increasingly possible to know in advance what might make us sick, and what, in the end, might cause our demise and even how long it might take.
In the end Mr. Bailey and I reached the same conclusion, but for very different reasons. We both seem to agree that knowledge is power. Knowing what we’re genetically pre-disposed to allows us the ability to react and try to re-write that pre-designed destiny.
Looking back at the first time Hermansky-Pudlak Syndrome was ever mentioned to me, I often can’t help but wonder what those doctors really knew. I was told that HPS was a minor bleeding disorder easily treated with blood platelet infusions for surgeries or major trauma. Colitis, lung disease and a limited life expectancy were left out – either because the doctors really didn’t know, or because they saw no value in telling me.
Granted, I was in a pretty fragile emotional state back then. At the time I thought I had Crohn’s disease and the doctors told me that even with ostomy surgery, I’d likely have future flare ups. I can remember crying for hours at the prospect of going through that trauma not once, but repeatedly throughout my life. I’ve been so blessed that thus far, any flare ups have been quite mild.
It was only 10 years later that the rest of the puzzle came together thanks to a nosy doctor and a quick google search. It was then that I had the facts – as well as the gloomy prognosis of no treatment, no cure.
Fast forward four years. Our phase III trial is up and running. Two HPS’ers have had lung transplants when four years ago no one thought it would happen. There are several other advancements in the pipeline. And we, as patient advocates, have played an active role in those developments.
We’ve raised money, given up bodily fluids, shared information and supported one another – all chinks in the chain of events that will someday yield better treatments and a cure. If our doctors had kept us in the dark because of a gloomy outlook, we all would have been robbed of that opportunity to alter our future.
Bailey did mention the power of being able to react – but his motivation for wanting to unravel the cosmic schedule of his life had another peg – and that’s where he and I part company.
In the NPR interview he said that if one knew they were going to develop a traumatic and life limiting disease in their 40s, perhaps they would make different choices in their 20s. He thought, for example, that maybe someone would elect not to spend 10 years in graduate school. He surmised that if he knew his time on earth were short, he’d get busy on all those book ideas floating in the background of his mind. I can relate to that one!
But as I listened to him, my first reaction was “What an amateur.” Yet another person with this Hollywood view of mortality. To myself I thought, “He thinks that because he’s never actually been there.” If you know you’re life might be shorter than everyone else’s, suddenly you’re somehow entitled right? You’ve got the gift of freedom to run around doing only the things you want to do in life, only the things that offer real meaning and personal satisfaction. I think I actually let out an audible cynical grunt.
That’s what I thought four years ago.
I thought somehow suddenly I’d have this incredible personal freedom in my life. Life might be shorter than I’d thought, but it would be better somehow. Yeah right. I guess someone forgot to tell the landlord, the electric company, the gas company and my stomach that I needed to devote my existence to only profound, enjoyable and greatly satisfying activities. Somehow they all expected to be paid or fed, regardless of my diagnosis. And by the way, news flash – being sick isn’t cheap!
I hate to be a downer, but real life marches on regardless of whether your genes are programmed for early destruction. The only people who really get that kind of freedom are people who have money.
The other thing that disturbed me was the assertion that things that required long-term time investments might not be worth it if you knew your life was short – things like graduate school. How sad an outlook is that? The thing keeping me from grad school is money and health insurance – not a lack of desire to go because I might not be around in 10 years.
That kind of attitude only focuses on the result, and not the journey. Looking back at college I loved it. The most valuable parts of my college education weren’t simply the diploma at the end – it was the five years of experiences and growth that happened along the way. Besides – who knows. The whole idea of studying genes isn’t to create some sort of cosmic life expectancy clock – it’s to learn how they work so we can change the future.
And ultimately, the duration of our lives isn’t up to us anyway. We can tinker and devise and work within God’s plan, but in the end it’s still His plan.
Check out the article and the interview at:
http://reason.com/news/show/119410.html
http://www.npr.org/templates/story/story.php?storyId=9378371
Comments
If it's a situation where there is nothing I can do to change the outcome, then I think it's just frustrating to know -- what little value would come from being able to "plan" is outweighed by the grief and helpless feeling of knowing it's coming, in my view. But if something can be done to change the outcome (either preventing illness or slowing its progress), then that's good info to have. So, my answer to these questions is VERY conditional, I guess, and unless some assurance can be given that something can be done, then I don't want to know.