Saturday, December 26, 2009



This is the new buzz-phrase that is sweeping MS-Nation. It all began with the work of an Italian doctor - Dr. Zamboni - and the work that he did to better understand and treat his wife, who had been given a diagnosis of MS.

All of the details of that journey are better described here:

This information has spun my world out of orbit and the routine of 28 days between infusions has now been augmented with a mad research program and quest for more data. The goal for all of this research is to find that inflection point; the point where I can say that I am comfortable being tested for CCSVI and then comfortable undergoing surgery. To-date, I have come across this information:

Which is of interest, because my best friend growing up went to med school at UB and the school is less than an hour from where I grew up outside of Rochester, NY. The entire Upstate NY area kinda sorta feels like home and so this has a leg up, due to familiarity. They have said they will not be making any decisions on study participants until January, so I am also in a holding pattern there.

Why Universal Health Insurance Is Better Than Health Care Reform

I have a simple understanding of insurance: the larger the pool of lives insured, the lower the rate paid by each member of that pool.

Is there anyone who works with insurance more directly who can confirm or correct that understanding? Because if that is an accurate understanding, than we should be looking to cover as many people - as many lives - as possible. We shouldn't be looking for silly things like, "this person over here is not a citizen" or "that person over there has a pre-existing condition". Insurance by its nature recognizes that some people will face illness more acutely than others - we just do not know whom. This is the sole purpose for providing insurance: to prepare - in advance - for that risk of the unknown. Once the unknown has become known, is not the time to begin severing people from the commitment. Rather, that is the time to fulfill the promise made: whichever one of us is felled by the random dangers of life, the rest of us will be there for you.

You can count on us.

Saturday, November 14, 2009

Perchance to dream

I guess this means I have raised again the pen, in the ongoing effort to understand my own past and divine my own path into the future. I know that I have dropped this cudgel before - and I most likely will do so again - but lets see where this journey takes us.

And if this is they place devoted to deeper understanding of what it means to live with an internal monster, then this is surely the place to observe notions on what it means to live with an external monster: Must. Get. Free.

Time keeps on slipping

Earlier, I related a tale of woe from 2004 and while I would turn 34 later that year, I do recall that I concluded my 33rd year, with questions as to what I was doing, where I was going? As the third and last child, I have always felt the emphasis of order in all things and while I had gone off to school to become an engineer and then entered the professional world as a technology consultant, I knew that for a time I had considered the law as a career - and I knew my open dalliances with being a lawyer must have awfully teased my parents!

And so, I know that as I celebrated my 33rd birthday, I asked my folks what goals they had for me, what things did they hope I accomplished. In truth, I suppose I was asking by allusion for them to tell me if they thought I was on the right path or not. They murmured little, or they demurred to intercede with large print directives, so I went back on my way, content in the knowledge that I had fulfilled my filial duties - or at least, that I was on my way.

Six months later, I partially lost my hearing and my neat and tidy world began to wobble, slightly. The orbit of my existence knocked of course by a seemingly random event, as though I were pushed aside by a comet hurtling through the cosmos. And while I struggled mightily to hold fast to the course I had plotted for myself - insisted that being diagnosed with MS was nothing that could alter my path or inhibit me on my journey to complete my appointed rounds, looking back I can now see that my world was forever changed that year. I was nudged - shoved - off the path on which I had perhaps become to complacent, to focused on goals that were perhaps not mine to achieve and I was placed on a new path, one that I have yet to define or even understand.

But I am beginning to understand some things, one of which is that the concept of the future being unknown to us is more powerful than I had before grasped. As day turns to night, night turns to day, we can find ourselves lulled by the pattern into a sense of expectation: seasons will change and the presence of cycles abound around us in nature and by becoming witnesses to these cycles, we begin to set our internal clocks for what we expect tomorrow will bring. But that is the world of observation and for all of our knowledge of the world beyond our observation, the power of visible, repetitive patterns force their way into our consciousness and stamp their expectations over all of our activities.

It's as though our conscious understanding of the world around us, causes us to push past all of those unseen actions, that we acknowledge - rarely - but of which we have little understanding. And as it is our conscious actions that enable us to get through the day, it is in some sense easier for us to focus on what is in front of us, as opposed to that which is taking place outside of our line of sight. In many respects, this means that not only is the future unknown to us, but that the present is only dimly grasped as well. When I was inquiring of my parents, about what plans they may wish me to fulfill, I was unaware that internally, my immune system was preparing to launch an assault on my nervous system. It is only in retrospect that even the faint outlines of the assault can even be surmised.

So here we are: the future is both unknown and unknowable and the present is dimly conceptualized - at best. This means that we must look to the past for all insight. It is the past we must mine for the markers of those unseen patterns, that we might glean some clue that might better illuminate our present and alight the stepping stones of the path into the future.

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.