Today is LiveStong Day and it’s also Susan Komen Race for the Cure Day here in Denver. Earlier this morning, roughly 50,000 people participated in the Race for the Cure over at Pepsi Center, and annually there are about 130 such races worldwide. For context, here’s the Wiki intro.
Since its inception in 1982, Komen has invested nearly $2 billion for breast cancer research, education, advocacy, health services and social support programs in the U.S., and through partnerships in more than 50 countries. Today, Komen has more than 100,000 volunteersworking in a network of 124 affiliates worldwide. As of March 2011, Komen is listed on Charity Navigator with the site’s highest rating of four stars. According to the Harris Interactive 2010 EquiTrend annual brand equity poll, Komen is one of the most trusted nonprofit organizations in America.
Cancer is a horrible disease, and it’s one I take personally. On November 8, 1984, I stood by my grandfather’s bed in Forsyth Memorial Hospital and watched him draw his last breath. He and my grandmother had taken me in at the age of three and raised me as their own son and he was, in every meaningful respect, the only father I ever had. He had “beaten” cancer twice before – colon, then lung – but the third time around it got to his pancreas before they caught it. At that point it was just a matter of time. It wasn’t pretty to watch his decline knowing there was nothing we could do but make him comfortable and “prepare ourselves.”
So no, I don’t mean it’s good when people get cancer and I certainly don’t want it myself.
Instead, I’m thinking about my own personal battle, one that some of my friends know about but until now I have not made public. Three or four years ago I was diagnosed with what my specialist calls a “progressive vestibular disorder.” In a nutshell, it’s a malfunction of the inner ear that affects my balance. That doesn’t sound so bad at a glance, probably, and it’s hard to describe how it feels. But you know that dizzy, out of control feeling you get when you’ve had too much to drink? It’s sort of like that, only it never stops. It’s not so bad some days, although I can always feel it at least a little bit. Other days it makes it difficult to do anything more aggressive than lay on the couch. And I know from experience that I can’t describe the overwhelming full-body sickness that results when you can’t really orient yourself to up and down properly.
It isn’t fatal. However, the doctor told me up front that people with a similar condition, Meniere’s Disease, have an extremely high suicide rate. It’s hard for me to compare what I have precisely with Meniere’s, and no, this isn’t a threat to off myself. But the physician told me this for a reason. And on the really bad days, I have no problem whatsoever understanding why.
The doc made sure I understood three other things.
- There’s no cure.
- It’s going to get worse.
- There’s not a lot we can do to manage the symptoms, either.
This is where I begin to envy those with cancer. And please, understand that I am praising everyone associated with the battle against all the forms of the disease that claimed the man whose I name I now bear.
I envy the fact that you have hope. In many cases, those with cancer have a shot, maybe even a good shot, of beating it.
I envy the fact that you have a vast, highly advanced medical/technical research program backed by extensive funding dedicated to eradicating the disease once and for all. It is not unreasonable to think that at some point, perhaps even in a generation or two, we as a society and as a species will have beaten cancer pretty much for good.
Perhaps most of all, I envy the community of support that has been built around the fight against cancer. There are programs for fighting it and surviving it, and there are programs for easing the final days of those who lose their struggle. As we see with the Komen Foundation’s activities, as well as those promoted by organizations like the American Cancer Society and Lance Armstrong’s LiveStrong.org, there are hundreds of thousands, perhaps millions, willing to dedicate their time, their physical and emotional energy and their financial resources to supporting those with the disease and celebrating those who have beaten it.
In other words, I envy that you don’t have to walk that road alone. There are those who know what you’re going through, those who can counsel you and empathize with you and lend an arm to steady you if you stumble.
I, like everyone else out there, have a battle or two to fight and I’m grateful to those who support me. I hope to hell I don’t sound bitter, because I’m not. I hope I don’t sound like I’m trying to hitch my small little wagon to something larger in a bad case of self-indulgence, although I can understand how some might see it that way. And I’m certainly not suggesting that society should throw as much money at my disorder as it does things like cancer and heart disease and even HIV. Lots of people suffer from those afflictions and what I have is pretty rare. You’d have to be stupid to overprioritize something as far down the list as vestibular disorders.
I hope, instead, that I’m managing to frame this so that it’s clear how much I appreciate the doctors, the researchers, the fundraisers and organizers, the participants, the family members and friends who stand in support of those with cancer.
I’m just overcome by all those pink ribbons today. I can’t help thinking how wonderful it would be if everyone who gets blindsided by a crippling disease were fortunate to have the same kind of infrastructure to draw on. I freely admit that there’s a selfish part of me that wishes I had that, too.