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.

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