Recently we lost a beacon in the dark. Arijit Guha, my first young adult cancer survivor role model, died yesterday. There are times when words fail us, and this is one of them. Sometimes it's better not to say anything, so I will be brief. We are as angry as ever, but we remain in debt to a life spent in the service of others, and respectful of its end. I can only write these words now because the news is fresh and hasn't settled. If I stopped to reflect on what I was saying, my words would fail me. I find I'm at a loss. Because today, we've all lost.
I hope you find your rest, Arijit. You certainly deserve it. I have a strong feeling though, that you will be fighting for us still. And I for one would be ashamed to sit back and let you bear the burden all on your own.
If you didn't know Arijit, you can find his blog and read about his story here: http://stageivhope.wordpress.com/
Today, I find myself in deep introspection. Arijit was a hero, and I was fortunate to be aware of his presence on the Earth. It's made me a better person, and helped define my own journey through life. I still don't know how I feel about being engaged in a community where everyone you meet is dying. It's heartbreaking and terrible. And yet those of us who have the least time often turn out to be the most worthwhile. They never forget the lessons of mortality and the perspective gained from facing down the doors to the other side. They can't forget, because they live it every day. There are moments when I find myself falling back into the life I lived before cancer, and the lessons of mortality lose their sense of urgency. For those of us who are lucky enough to have no evidence of disease, it's necessary to be reminded that there was a time when only one thing mattered -- the struggle to live another day in the company of the ones we love.
Showing posts with label Role Models. Show all posts
Showing posts with label Role Models. Show all posts
Saturday, March 23, 2013
Tuesday, March 19, 2013
The Next Celebrity Trend
I really think the next celebrity trend should be cancer. Right now it's babies, but that's on the way out. Pretty soon, they're going to need some other accessory to flaunt and get people excited about. Why not a Louis Vuitton IV bag? Come on, it'll be fun.
Obviously, if you have been reading my words here on the interwebs, I don't want anyone to have cancer, ever. But, like everything else, cancer is about image. Cancer still has such a negative stigma attached to it, though I admit that it's getting better. I'm sure that when my grandfather died of cancer, back in the days of June Cleaver and twin beds in the master bedroom, people didn't even whisper about it in sewing circles. And I'm guessing there were actual sewing circles in those days, too, because I've never stumbled onto one in my lifetime, and I'm more than a little disappointed about that. If you know someone who operates or has ever operated a sewing circle, I would like their information.
Imagine, for a second, that a Kardashian had cancer. It might take roughly five minutes to wipe that shit out. Except maybe for the fat one (I don't know who the fat one might be, because none of them are fat [maybe after this cancer thing is done with I'll start working on body image awareness]). And I do say "done with," because it's something that can be done. I would think that somewhere within the next twenty years we'll have all of the major cancers cured. A lot of new-ish cancer treatments are going a long way toward meeting this goal, and personally I'm most excited about immunotherapy (using the body's own immune system to fight their cancer) and viral oncology (engineering viruses to attack and destroy cancer cells).
Even though I don't think the next celebrity trend should be cancer, it could absolutely be cancer awareness. The problems we face in this life are solely a matter of resources. We live in a bizarre world where it costs money to solve issues that are already in everyone's best interest to solve. Call me an idealist, but I believe there are many things more important than money. In fact, money is paper. And gold is a rock. If only it had a pair of scissors, the economy could play a drinking game.
However, in this life, in this dimension, in this reality, we have to fit ourselves into a mold and play ball. If we like something here, we have to put up our rocks and papers in order for it to come to fruition. As well as other resources, like time and creativity. In my opinion, getting to the point where no human being is ever diagnosed with cancer again is its own reward. So my resources are not logged, and I don't pay attention to how my personal economics are affected by cancer awareness, micro or macro or velcro. My hope is that through education and general pestering, we can recruit more people to feel that way -- that their resources are well used by making sure people don't suffer.
Human beings are a tricky lot, and educating them to care about issues that don't personally affect them is a battle in itself. Most people don't care about things they've never been exposed to or had to deal with individually. Of course there are several arguments as to why cancer does actually affect us all, and we'll keep these in mind, while also keeping in mind the complicated theories on human motivation. I'm the first to admit my guilt. I didn't give a shit about cancer before I was diagnosed. My own failings motivate me to make amends for my pre-terminal illness perspective. There were many names I passed over, in the midst of their sorrow and silent pleas for help, many names who could have used a phone call, or a visit, or a kind word, and I did nothing but briefly feel sorry for them, and scroll on down the Facebook feed. If I remembered those names now, I'd apologize to each and every one of them. Of course for some, it's much too late.
Obviously, if you have been reading my words here on the interwebs, I don't want anyone to have cancer, ever. But, like everything else, cancer is about image. Cancer still has such a negative stigma attached to it, though I admit that it's getting better. I'm sure that when my grandfather died of cancer, back in the days of June Cleaver and twin beds in the master bedroom, people didn't even whisper about it in sewing circles. And I'm guessing there were actual sewing circles in those days, too, because I've never stumbled onto one in my lifetime, and I'm more than a little disappointed about that. If you know someone who operates or has ever operated a sewing circle, I would like their information.
Imagine, for a second, that a Kardashian had cancer. It might take roughly five minutes to wipe that shit out. Except maybe for the fat one (I don't know who the fat one might be, because none of them are fat [maybe after this cancer thing is done with I'll start working on body image awareness]). And I do say "done with," because it's something that can be done. I would think that somewhere within the next twenty years we'll have all of the major cancers cured. A lot of new-ish cancer treatments are going a long way toward meeting this goal, and personally I'm most excited about immunotherapy (using the body's own immune system to fight their cancer) and viral oncology (engineering viruses to attack and destroy cancer cells).
Even though I don't think the next celebrity trend should be cancer, it could absolutely be cancer awareness. The problems we face in this life are solely a matter of resources. We live in a bizarre world where it costs money to solve issues that are already in everyone's best interest to solve. Call me an idealist, but I believe there are many things more important than money. In fact, money is paper. And gold is a rock. If only it had a pair of scissors, the economy could play a drinking game.
However, in this life, in this dimension, in this reality, we have to fit ourselves into a mold and play ball. If we like something here, we have to put up our rocks and papers in order for it to come to fruition. As well as other resources, like time and creativity. In my opinion, getting to the point where no human being is ever diagnosed with cancer again is its own reward. So my resources are not logged, and I don't pay attention to how my personal economics are affected by cancer awareness, micro or macro or velcro. My hope is that through education and general pestering, we can recruit more people to feel that way -- that their resources are well used by making sure people don't suffer.
Human beings are a tricky lot, and educating them to care about issues that don't personally affect them is a battle in itself. Most people don't care about things they've never been exposed to or had to deal with individually. Of course there are several arguments as to why cancer does actually affect us all, and we'll keep these in mind, while also keeping in mind the complicated theories on human motivation. I'm the first to admit my guilt. I didn't give a shit about cancer before I was diagnosed. My own failings motivate me to make amends for my pre-terminal illness perspective. There were many names I passed over, in the midst of their sorrow and silent pleas for help, many names who could have used a phone call, or a visit, or a kind word, and I did nothing but briefly feel sorry for them, and scroll on down the Facebook feed. If I remembered those names now, I'd apologize to each and every one of them. Of course for some, it's much too late.
Tuesday, March 12, 2013
A True Underdog Story - My Cousin Bryan
Writing about cancer all the time is really awful. It takes a huge toll on the writer. Especially if that writer is no longer actively fighting cancer himself. You have to dive back into the same mindset you had while you were patrolling the trenches of cancer, and constantly relive a lot of traumatic shit, on cue. It sucks, every time. But I'm not here to complain, I'm here to educate. Which is why today, I bring you a true underdog story.
There are some who label cancer survivors "heroes," and if you read my last post, you already know how I feel about that. I think the real heroes have qualities that are present whether cancer is or not. And those people fight against inequality and injustice, regardless of their own lot in life. And that brings me to today's topic:
My cousin Bryan, the underdog.
Bryan is, as we speak, embroiled in a vicious battle with his Home Owner's Association. For the right to keep his recycle bin on the front porch. You heard it here. It's a struggle to survive in his own neighborhood. This story has it all -- drama, action, romance (I don't know if any of those claims are true). It's a coming of age tale of one recycle bin who refused to be relocated, and the owners who loved him.
You can read the full story, complete with the back and forth with Bryan's HOA, here: http://thebryguy115.wordpress.com/
Bryan is spectacularly witty and tells wildly entertaining stories. I know this, because I had to see him on Thanksgiving every year of my whole life. And this one's no different. He takes a dull, innocuous topic and turns it into a tongue-in-cheek adventure.
There are some who label cancer survivors "heroes," and if you read my last post, you already know how I feel about that. I think the real heroes have qualities that are present whether cancer is or not. And those people fight against inequality and injustice, regardless of their own lot in life. And that brings me to today's topic:
My cousin Bryan, the underdog.
Bryan is, as we speak, embroiled in a vicious battle with his Home Owner's Association. For the right to keep his recycle bin on the front porch. You heard it here. It's a struggle to survive in his own neighborhood. This story has it all -- drama, action, romance (I don't know if any of those claims are true). It's a coming of age tale of one recycle bin who refused to be relocated, and the owners who loved him.
You can read the full story, complete with the back and forth with Bryan's HOA, here: http://thebryguy115.wordpress.com/
Bryan is spectacularly witty and tells wildly entertaining stories. I know this, because I had to see him on Thanksgiving every year of my whole life. And this one's no different. He takes a dull, innocuous topic and turns it into a tongue-in-cheek adventure.
Thursday, March 7, 2013
The Truth About Heroes And Cancer
Cancer is not a fight. It's an illness. Some people don't get better. Period.
Cancer doesn't operate on our terms, and that makes people very uncomfortable. And so there are those who have the propensity to create a mythology to cover up the realities of the disease, in order to apply an idealized version of it to mesh with our moral code or cultural viewpoints. It's a selfish thing to do, and it doesn't fool anyone. For example, there are no heroes when it comes to cancer. There are people who live, and there are people who die. Sometimes there are reasons, sometimes there aren't. Sometimes it makes sense. Mostly it doesn't. As Xeni Jardin has said, "Lots of people suffer through treatment in pursuit of more life. Some cancers don't respond. Some of us die. We're not heroes or failures." There are too many people who are lauded for surviving a disease they have no control over, and so many who are forgotten because they didn't.
Recently I found out that my first survivor role model has opted to end his treatment. I have never met him. But he was the first young adult cancer survivor I came across after I was diagnosed, and I followed his progress intently, possibly even to distract myself from own treatment. He accomplished a great deal in his life, and I think that he's a hero. He isn't a hero because he survived cancer for so long, and he isn't a hero because he's dying now. It isn't because of his attitude or perspective, or the overwhelming courage with which he chooses to meet his fate. All of those things are commonly said about cancer survivors. It's nonsense. No one is courageous by choice. We are courageous because we don't want to die. None of us can say that we know what it means to give up, either, which is another misguided argument. "Well Jim will fight hard because he knows what it means if he gives up." Jim has no idea, and neither do you. Truth is, we just don't want to find out.
This man is a hero because, in the absence of cancer, he would have lived his life the same way -- in the service of others. Because he would have found a way to make the world a better place regardless of whether or not he was ever diagnosed with a terminal illness. Heroes are people who embody the idea that the needs and sufferings of others are more worthy to address than our own. People who know that they can cope with their own lot in life as long as they know they've done their part in making things a little easier for those who have it worse. Some people live solely for the purpose of helping others. This man is one of them. He has fought, and continues to fight a system he knows firsthand to be broken. He carries the torch for change, knowing full well that he himself is beyond help, and anything he accomplishes will not serve to benefit him.
If you think someone is a hero for surviving cancer, or courageous, or inspiring, then you're part of the problem. You're doing it wrong. Anyone can survive cancer. And anyone can die from it. You want to sell your book, or promote your movie with a heavy sugar coating of mythology wrapped around the serious, ugly core of a terrible disease; that's fine. Leave me out of it.
Respect those who give back. Respect them more if they do it without any promise of a return. I don't care what disease they have or don't have.
Cancer doesn't operate on our terms, and that makes people very uncomfortable. And so there are those who have the propensity to create a mythology to cover up the realities of the disease, in order to apply an idealized version of it to mesh with our moral code or cultural viewpoints. It's a selfish thing to do, and it doesn't fool anyone. For example, there are no heroes when it comes to cancer. There are people who live, and there are people who die. Sometimes there are reasons, sometimes there aren't. Sometimes it makes sense. Mostly it doesn't. As Xeni Jardin has said, "Lots of people suffer through treatment in pursuit of more life. Some cancers don't respond. Some of us die. We're not heroes or failures." There are too many people who are lauded for surviving a disease they have no control over, and so many who are forgotten because they didn't.
Recently I found out that my first survivor role model has opted to end his treatment. I have never met him. But he was the first young adult cancer survivor I came across after I was diagnosed, and I followed his progress intently, possibly even to distract myself from own treatment. He accomplished a great deal in his life, and I think that he's a hero. He isn't a hero because he survived cancer for so long, and he isn't a hero because he's dying now. It isn't because of his attitude or perspective, or the overwhelming courage with which he chooses to meet his fate. All of those things are commonly said about cancer survivors. It's nonsense. No one is courageous by choice. We are courageous because we don't want to die. None of us can say that we know what it means to give up, either, which is another misguided argument. "Well Jim will fight hard because he knows what it means if he gives up." Jim has no idea, and neither do you. Truth is, we just don't want to find out.
This man is a hero because, in the absence of cancer, he would have lived his life the same way -- in the service of others. Because he would have found a way to make the world a better place regardless of whether or not he was ever diagnosed with a terminal illness. Heroes are people who embody the idea that the needs and sufferings of others are more worthy to address than our own. People who know that they can cope with their own lot in life as long as they know they've done their part in making things a little easier for those who have it worse. Some people live solely for the purpose of helping others. This man is one of them. He has fought, and continues to fight a system he knows firsthand to be broken. He carries the torch for change, knowing full well that he himself is beyond help, and anything he accomplishes will not serve to benefit him.
If you think someone is a hero for surviving cancer, or courageous, or inspiring, then you're part of the problem. You're doing it wrong. Anyone can survive cancer. And anyone can die from it. You want to sell your book, or promote your movie with a heavy sugar coating of mythology wrapped around the serious, ugly core of a terrible disease; that's fine. Leave me out of it.
Respect those who give back. Respect them more if they do it without any promise of a return. I don't care what disease they have or don't have.
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