On July 15, 2011 I was honored to give a presentation at the Patient Information Day of the Second Annual CCSVI Update Symposium, held at the Crowne Plaza Hotel in Times Sq., New York City. The organizer of the symposium, Dr. Salvatore Sclafani, asked me to write an essay for oral presentation on "A Patient's Perspective on CCSVI", using some of the photographs taken from my wheelchair mounted camera to illustrate my talk. This was a challenging proposition, since none of my photos were taken with MS or CCSVI in mind, but the presentation turned out well, and I was not pelted with rotten vegetables or garbage, as I feared. I'll post the resulting essay here in four parts, spaced a few days apart. Here's part one:
This photo is of an abandoned structure on the Manhattan side of the Hudson River, known as the 69th St. Transfer Bridge. Built in 1911, during its heyday, when Manhattan's Riverfront was teeming with industrial activity, the structure was used to transfer railcars onto barges for trips to freight ships or across the Hudson to rail lines in New Jersey. It is now listed on the National Register of Historic Places.
I've long found this derelict structure to be captivating, and have often felt a sort of kinship towards it. Like me, the transfer bridge once stood tall and strong, hard-working, perfectly in sync with the beehive of action that surrounded it. Now wrought immobile by rust and decay, the transfer bridge is a stubborn old beast, still able to grab attention in spite of its diminished state.
Like many of my MS brothers and sisters, I too can no longer function as I once did. Instead of rust doing its insidious damage to the hard steel of the bridge, a mysterious disease process now does ongoing injury to the all too soft tissues of my central nervous system, creating neurologic deficits that in eight short years have left me spending much of my time sitting in a wheelchair. But, like this structure, I too refuse to go quietly into the night, and hope, through words and images, to at the very least give voice to the stresses, frustrations, and emotions that come part and parcel with having a progressively debilitating chronic illness. In my fellow patients, I've met countless individuals whose guts, courage, and spirit inspire me, and whose determination to live fulfilling lives in spite of the disease should serve as lessons to us all, sick and healthy alike.
Of course, this photo not only depicts the long abandoned transfer bridge, but also rays of sun light bursting through a threatening cloud bank, daggers of illumination cutting through a potential source of gloom. These rays of light are akin to Dr. Zamboni's CCSVI hypothesis, giving hope to a patient population searching so desperately for answers. Despite the incremental advances made in treating the disease over the last decade or so, MS has remained a maddeningly elusive target, its victims left to choose among an array of drugs which, in varying degrees, all carry with them the risk of serious downside, and none of which offers a cure.
The source of hope called CCSVI has burst through this haze of confusion and energized MS patients worldwide, like starved seedlings suddenly exposed to a sunny day. Although still early in the game, the very promise of CCSVI has beckoned patients to organize and educate themselves, and to ask questions that were in dire need of asking.
By shaking up the status quo, CCSVI has already won a tremendous victory, and the hope it has given to many is nothing short of a blessing. But in assessing the full impact of CCSVI, we must also be careful not to be blinded by these same bright rays of hope, as investigations into CCSVI, and the methods to treat it are still in their infancy, and the full impact of the hypothesis has yet to be determined. Certainly, we have seen the CCSVI treatment procedure help many patients, sometimes dramatically, but we have also seen it be less than effective for a substantial number of those who have undergone it. In fervently desiring CCSVI to provide answers for all, we must guard against hope eclipsing reason, and understand that there is still much to be learned.