Monday, April 15, 2013


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. 


But red cells will help.

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