Wednesday, May 20, 2009

Thou preparest a table before me in the presence of mine enemies

So, according to this email I received from some cat named, "President Barack Obama", our chance to revive our nation's health care system has arrived, but for the announcement of my personal story.

Herewith, my reply to his entreaty:

In 2004, I was a world-traveling, high-flying technology consultant. I was nine years into a career that had 'Partner' written all over it and I was living large in a NYC high-rise condo.

Then one day, I lost my hearing in my right ear.

I spent the summer of 2004, running to and from doctor's offices and medical labs, undergoing a series of tests, which concluded with a diagnosis from my specialist where - if anything - I seemed to have to console him, he looked so sad.

"You have MS", he told me, which at that point clearly meant more to him than it meant to me. I was just happy that I did not have a brain tumor (and I still am, actually). But what I did not know then is that he was telling me that my life as an IT consultant was over.

I left my lumbar puncture two months later and stumbled home to pass out on my bed, only to be awakened by a call to join an in-town project the following Monday.

"Sure", said I, still in the grip of delusion. I lasted half a day at the client site, before I threw up in the bathroom and made my apologies and left. That began a string of disappointing engagements for me, where I just could not move as fast - mentally - as the pace of a consultant required. To myself and to those around me, I seemed to be mired in molasses.

At the same time I was becoming acquainted with the medicine most commonly prescribed for MS: the ABC-R drugs (Avonex, Betaseron, Copaxone and Rebif) and the vast array of clinical trials that were currently underway (one of which I signed up for) and I was only slightly becoming aware of just how expensive these medications really were.

Shortly before I was let go - when it finally dawned upon everyone that I would never reach that next rung on the ladder - I transitioned my medication to Tysabri, which runs into the five figures per dose, on a monthly basis.

Tysabri is a heavy burden to bear, but the cost is a pittance, when compared to the loss of mental faculties and physical abilities, which are the inevitable outcomes of MS (President Bartlett, notwithstanding). Carrying this load on COBRA coverage is but a temporary balm - at best - as my savings dwindle while I await the completion of the bridge that will take me from the health care system we have today to the health care system we need for tomorrow.

Saturday, May 2, 2009

First Things First

It is important to note - right up front, before things wander hither and yon - that being diagnosed with multiple sclerosis (hereafter presented as MS) is not a sentence of death.  That is important because reaching this outcome was in doubt for a time.  I was handed a diagnosis of MS by an ear, nose and throat specialist and I have to say there was a palpable sense of relief - on his part - when he gave me the news.

He was relieved.

And I suppose, it was to be expected.  After all, he and I had been on a long strange journey up until that point and where it was going to end was unknown and no one has to teach us to fear the unknown.  Rather, we must be taught to not fear the unknown.  For me - and knowing my mother - that teaching surely began before birth, in some lullaby softly sung to soothe a restless child, impatient even here, in the womb.  Or I suppose I could even date that first lesson to one of the nursery rhymes I was taught as a child - you know, one of those little couplets that you learned at such a young age it is as though it were inscribed into your neural pathways.  But given my druthers - and this is my story, so whose druthers could be better used - I would mark the milepost of when I was first explicitly taught to not fear the unknown to be the summer of my fourteenth year.

And I further suppose, that I should take this point to announce that I am not quite certain of that date, but it feels right so I am loathe to change it.  There was a time, when while I would never say I have a picture perfect memory, I would easily say that if an answer - any answer to any question - felt like the right answer when it floated to the top of my head (and as I learned to trust that first answer) I was rewarded with the reports that it was indeed, the right answer.  This was an enormous comfort to me on my journeys through school; if you could look at a question and look at a set of answers and have the right answer just shout at you, "Pick me!", well, that made for a good day.  Fill in the blank, multiple choice, even essay questions - sometimes it seemed as though merely holding pencil to paper freed the answer to flow from the recesses of my mind on to the page.  And for a long time, that is what made school such a nice, safe place to be, for they never asked you a question but for them having already told you the answer at some point prior.  You didn't have to think of the answer so much as you had to recall it - and how helpful was it for the teacher to phrase the question the same on the test as she had in class?

So, fourteen came to mind when I asked myself, "when was that Sunday School (play? performance? recital? presentation?) event?  You know the one where I was asked to recite the 23 Psalm before the gathered adults, all hopeful and eager to see the young faces of their children on stage, in a quasi-coming out announcement to the world to be ready!  So I repeat my reticence to change - or even research - fourteen, as it is the first answer that appeared in my head.  I am already building this tale around the summer of my fourteenth year and the longer it stays in my mind it takes on the presence of a talisman, connecting up with flotsam from my youth into an over-arching story line, but as the foundational piece it has even greater relevance - seemingly - so (and I might have said this before) I am loathe to change it.

If that was when I first became conscious of the concept of "freedom from fear", it would take another two decades for me to actually have something of which to be afraid.  What a blessing that was.