Thursday, July 28, 2011

A Patient's Perspective on CCSVI, in Words and Pictures (Part Four)

On July 15, 2011 it was my honor 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 I've taken from my wheelchair mounted camera to illustrate my talk. I've posted the resulting essay here in four parts, spaced a few days apart. Here's the finale, part four (click here for part one, part two, or part three):


This is one of my favorite photos that I've taken from my wheelchair. It was taken in Central Park, in an especially beautiful section called The Conservatory Gardens. The gardens are truly spectacular, and I'd urge anyone who has the chance to visit them to do so, especially in spring or autumn, when they are bursting with color.

For me, this photo embodies two key elements, freedom and patience. While the element of freedom may be easy to discern, the patience involved in taking the photo is probably harder to detect. When I first discovered this fountain, adorned with sculpted sparrows, I also saw real-life sparrows utilizing it as a birdbath, just as the artist intended. I found the juxtaposition of the inanimate and live birds striking, and hoped to capture a moment that would illustrate the coming together of nature and such a graceful example of the power of the human imagination. In order to capture the fleeting moment caught in this frame, I sat in one spot for about an hour and a half, taking literally hundreds of photos, systematically shooting pictures in rapid-fire mode every time a bird took off or landed. Luckily for me, one of those hundreds of photos turned out to be this one. Patience does have its rewards.

When it comes to the pace of CCSVI research and treatment, I completely understand how difficult it can be to be patient. Those of us suffering from chronic, progressively disabling disease know all too well that the clock is ticking. Any youthful notions of immortality or indestructibility were demolished the moment we were shown MRI images depicting holes in our brains and spinal cords. Stripped of such illusions, a certain desperation can set in, and the desire to do something, anything, to stave off a calamitous future takes hold. This desire can manifest in many forms, from outright panic to steely determination, but every self-empowered MS patient has their radar set to scan the horizon for any new development that might save them from a dreadful end.

CCSVI certainly holds the promise of potential salvation. This radical new approach to looking at MS, offering fundamentally new ideas about how to treat the disease, gives the afflicted a life ring to grab onto, a ring plainly inscribed with the word Hope. But we are yet in the early stages of our understanding of CCSVI and how best to treat it. The treatment procedure I underwent a little bit over a year ago is far different than the procedures being done today, and procedures being done a year from now will likely be more different still. Therefore, while no one could argue with any patient choosing to pursue treatment now, for some the decision to be patient and wait cannot be viewed as a terrible choice. Sometimes, the race does go to the swift, but there are times too that discretion is the better part of valor.

As for the other element prominent in this photo, freedom, well, that is what I wish for every MS patient, everywhere. Freedom from the fear that we wear as a second skin, freedom from the cognitive deficits that threaten to steal our very essence, freedom from the braces, canes, scooters, and wheelchairs that that we use to compensate for our damaged bodies, freedom from the grip of a medical establishment that all too often seems more designed to seek profits than cures. Let us all someday soon alight like birds from a fountain, our sweetest dreams come true, and our fondest desires realized.

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  1. This is one of my favorites of your work as well. Your patience paid off and maybe that wait took you into what I'm guessing is early evening light that really contributes to the mood in this beautiful photo.
    As far as PPMS goes, I've been patient for 35 years so far. BUT, I've continued to pursue a quality life and have realized basically all my important dreams. Yes I encounter frustration daily, but I do my best to live in gratitude and don't waste time thinking about what my life would have been without MS. Also admittedly, MS has delivered a few gifts along the way.

  2. Beautiful photo! Your patience really paid off.

  3. Inspiring photo, inspiring words. As always, you've tied together concepts and left us with our mouths wide open. Thank you for reaching in and then reaching back out to share your personal insights as well as the valuable info about CCSVI. Hugs from the West Coast. Cassie

  4. Well, it seems that a patient needs patience.
    Great photos, great words.
    We all thank you, Marc!

  5. It is a lovely shot! But tho I see patience and freedom, more I see balance. The stone bird to the lower left, balanced by the bird aflight to the upper right. Both birds have wings outstretched and they balance each other. For me, this symbolizes any disease, including (my) MS. Exercise enough, but don't overdo it. Keep active, but don't overdo. Think, but don't over think. Balance, balance, balance. Again, great shot and great words. Great balance. :)

  6. Poignantly said Sue!

    Marc, I agree that this is your best work yet.


  7. I'm sure the professionals were listening to every word you said--thank you for reaching them from all of us!

  8. It looks like Dr Salvatore Spagnolo does surgical way what CCSVI can not accomplish. May be you could look into what he did ?

  9. The sparrow alights.
    Water droplets in cascade
    freedom and patience.


  10. You have a way, Marc, at cutting through all the nice talk and straight through to the heart. You were a moving spealer, I am sure. Thanks for sharing this photo and essays. Have a great week, mary

  11. What a beautiful photo! Thanks Marc for sharing the text of your discussion at the symposium.

    I especially appreciate your balanced commentary and mentioning that the procedure can leave the patient worse off (as in my case when things took an unexpected turn.)

    I hope you're doing well and enjoying Central Park!


  12. Oh my, you really are a talented man.

  13. Simple and eloquent. Thank you.

  14. Beautifully expressed...thank you for this.

  15. Thanks for all the very kind comments. Sue, I like your addition of "balance" to the mix. Balance certainly is vital, in dealing with MS as in all things…