HONY, Cancer and the Ivory Coast

I follow the HONY page on Facebook, which is fantastic.   A man walks the streets of NYC and takes photos of average people (and admittedly, in NYC, there is no shortage of ‘characters’) and asks them some questions.  He posts the brief interview, or a caption, and the picture. 

I enjoy it, because I love NYC, having spent much time there while my son Brent sought treatment at Memorial Sloan Kettering Cancer Center, but also because I believe that there is something very powerful in what Brandon does.  He finds terribly interesting, funny and touching stories out of the most unassuming people.  And I believe that he challenges people to look at those around them in a new light.   Everyone has a story, if we only stop to consider what it might be.

I have never seriously commented before, generally reading others responses and trying on the various perspectives, both of those featured in the photos, as well as that of the commenters.  Today, with the photo of a man who left his violent homeland on the Ivory Coast, seeking a better life here, I wrote the following:

Ann Ramer: I think that we do not understand what political stability offers us.  Political stability allows us the luxury of griping about our government, rather than fleeing it.  We are blessed here.

Ryan Pulito: Political stability? You mean when one group has a monopoly on the use of lethal force?

Ann Ramer:  I mean when we have orderly elections that result in the peaceful exchange of that "monopoly on the use of lethal force" In other countries, this is not consistently accomplished. And there are enumerable blessings that come with this fact within our country. I acknowledge that many things are not perfect. But, without this basic foundation, so much else becomes impossible, things we take for granted, enough to even complain about the imperfections.

 

I did not want to get on a soap box, long posting on someone else’s site, but I thought much more about this today and thought that I would share.  I have my own blog after all.

While I disagree with Ryan Pulito, I really do not want to get pulled into a pissing match with him.  The political contentiousness that we have in our country,  I also consider that to be a blessing, not experienced in many other countries.  While some despairingly say that we have never been so ‘divided’ in the US, and conversations certainly can become heated, they are combative conversations, not actual combat.  Talk to someone from Somalia, or Syria or many other places in the world, and they can explain the difference.

I have been thinking a lot today about those blessings that we are afforded.  One, interestingly enough, is Pediatric Cancer Research, which we strongly feel is grossly underfunded.  We are blessed with both the opportunity to complain about it, as well as the opportunity to do something about it, precisely because of the political stability we have in this country. 

How much money do you think is invested in cancer research in war-torn African countries?  How many research facilities exist there?  I imagine that there are not many, because building elementary schools and hospitals is a big enough challenge.  Survival, in the most immediate of terms, is the highest priority.  It has to be. 

And because of this, everything else falls away to a very distant second. Investment in such sophisticated things as genetics labs or cancer research facilities, ones that might easily be taken, or destroyed, seems very risky.  Investment in science, quite frankly, should be a low priority if you are more likely to die in violent political reprisals.  Someone wise once told me, "Battle the shark closest to the boat."  Cancer is clearly not their shark.

Our stability, and the long general experience that we have with peace within our borders (recognizing, and in no way diminishing, the occasional episodes of violence, such as 9/11), permits us to have investment in cancer research, facilities adequate for the task, and scientists and doctors educated enough to tackle these tough problems. We assume peace, because we have no memory of anything else.  We proceed and invest accordingly.    

It all starts with the foundation of political stability, a blessing that I do not take for granted.

With an absurdly rare genetic predisposition to all forms of cancer (Li-Fraumeni), and two children with cancer (and 3 different types between them), I maintain that we are lucky.  Lucky to live here.  Lucky to live now.  And lucky to have the opportunity to try to help researchers advance their understanding of cancer and of genetics. 

We are very blessed to have no bigger fish to fry, or sharks to battle, as others in the world do.  We do not worry about feeding our children, or about violence likely visiting our home. 

We do worry about cancer visiting our home. 

But we have the opportunity to do something about it, which, as I recognize, is its own blessing.

Terror

Today was an average day, meeting with doctors and planning for tomorrows hospital visit for Brent...stepping into the pet store to pick up some replacement fish for Lauren's tank.  But when he got home, Dan turned on the news to the awful events in Boston.  I was reminded of something I wrote a while ago, but didn't know what to do with it.   It seems like today is a fitting time to share ...I suppose my analogy will extend to Bostonians now as well in this world gone mad.  Prayers for them all, on this Patriot Day.

How is Brent feeling today?  Awful?  Terrible? Horrible?                                                                2/25/13

At turns, I am struck with the elasticity of our language and annoyed with its imprecision.  In an effort to explain what this journey is like, I am forced to use words.  But the words I am forced to use, at times, seem inadequate, watered down, or somehow, altogether inappropriate. ‘Terrible’ is a word that I have used to describe how Brent feels when he needs a transfusion.  But it really isn’t a good word, and I try to reserve it for times that properly reflect its meaning.

After we first discovered Brent’s tumor and while we waited for the doctors to develop a plan, now, that was a terrible week.  I do not mean ‘turrible,’ the way Charles Barkley says it when Kobe Bryant throws up a brick.  “That is just turrible, really turrible!” 

I mean it in the fullest, most original sense, like Marie Antoinette and the French Revolution; they-are-coming -for-my-family-with-pitchforks-and-there-is-no-stopping-them- kind of way.  I knew immediately that day, that Brent had an uphill battle and the Ramers had a big genetic problem.   I absolutely felt to the marrow of my bones that cancer was coming for my whole family like a mob of peasants armed with pitchforks and sickles.  And furthermore, there was nothing that I could do or say that would stop it.  The despair and the fear and the helplessness that I felt was completely primal.  It was utterly terrifying.

That sense of terror, well, we are blessed in this country to not have a common experience that really captures this feeling, except perhaps for those who live in NYC. (Maybe this would explain my kindred feelings toward New Yorkers)  They no doubt understand, having lived through the 9/11 attacks.  That must have been truly terrible-- a terror-filled experience. 

‘Terrorism’ in the American heartland was not felt in the same way.  I am not in any way saying that we were not afraid on that day, nor that we failed to care about or understand the impact of the events happening in New York, Washington and Pennsylvania.  But by virtue of not having seen it up close, of fearing for our own immediate safety and that of our loved ones, of smelling the fires, of walking amongst the wreckage and living with the scars, literally and figuratively, well, we might imagine, but not truly know the terror.  It was witnessed on television, but not experienced.  I believe that there is a difference.

I wept on 9/11 as I watched.  It was horrifying to watch. And I was very fearful.  But it was not terror.

And at this point in time, 11 years later, ‘terrorism’ has become a political buzzword that is thrown around fairly carelessly, in my humble opinion, splattered over campaign ads and sprinkled into sound bites.  The word, so overused, no longer captures the fear and helplessness that was felt that day…the sudden mistrust of our own population because ‘they’ were hidden among us… crazy enough to fly planes into buildings, and so eager to kill us all, that they cared not a whit about their own welfare.  (The analogies with cancer here are rife)

I am not critical of our arrival to this point as a nation, simply making the distinction. No one can live in a state of constant terror.  Our bodies cannot long withstand the onslaught of adrenaline, and as a society we naturally have become inured to the notion of danger from within.  We are watchful, wary and try to be prepared.  But we have to go on.

I suppose that I am no different, because I am not feeling like Marie Antoinette these days, despite the continued threat.  The danger is still here, but we have no hope of running back to the safety of Austria, understanding that we carry the threat with us, actually inside of us.  (Marie almost made it with her family, fleeing for the border)  The flight or fight response was in full play for us back then, during our ‘time of terror’ that awful, terrible fall when I was so full of fear. 

But we Ramers are now standing our ground, ready for a fight, vigilant and watchful, with pitchforks of our own, torches lighting up the dark places.  We have become the hunter, rather than the hunted, but are desperately hoping never to find anything.  Ever.

And in the meantime, I am afforded the luxury of being perplexed about how to best express how Brent feels. 

Crappy. 

But red cells will help.