Saturday, May 29, 2010

Man Plans...

Flowchart in Technical Documentation

Image by Ivan Walsh via Flickr

My last post characterized MS as an incorrigible thief, gradually stealing all that is near and dear to the patients it torments and those who love them. Combined with a video produced by the NMSS's Beth Clark that heart wrenchingly recounted her family's struggles with her mom's very aggressive MS, the post took a hard look at some of the ugly realities about Multiple Sclerosis, and, judging by the many online comments and private e-mails the post elicited, it hit readers hard, and was quite upsetting to many.

It's never my intent to upset or depress the readers of this space, and I try to infuse my writings with reasons for hope, and with strategies for fighting back against our common foe, if not in body than in spirit. When viewing Beth's video, it's important to keep in mind that her mom was hit with an especially destructive and debilitating form of MS, and was stricken at a time when there were no medical treatments for the disease.

Still, MS is at best a daunting adversary. For those of us with the progressive forms of the disease, there are no proven pharmaceutical interventions. There are medicines to help us manage some of our symptoms, but we are largely left to watch helplessly as the disease takes its physical toll, which proceeds at different rates and in different forms for each of us, but marches ever onward for us all. How then, to separate the physical from the psychological, and not allow MS to break our spirit even as it spins its contemptible web of disability?

Although it's been said so often so that the sentiment might feel dangerously trite, it is imperative to do your best to live in the now. Even with a present filled with uncomfortable and regrettable realities, the only way to find contentment in any form is to stay rooted in the moment. It can be enormously enticing to dwell in the past, which from the vantage point of a compromised present can seem like a dreamlike fantasy land. Even hard times from years long gone can suddenly be yearned for when remembered from the seat of the wheelchair. Oh, to suffer some heartbreak but still be able to walk, to live through one of life's bitter disappointments but still be able to get up the next day with the chance to make right the wrongs.

Make no mistake, it can be of significant joy and comfort to remember the glory days, and connecting with friends and family who shared those times is an important way of confirming that, yes, all of that crazy stuff really did happen, but the past is best used to inform the present, to learn from it the lessons that allow us to make the most of our most precious possession, today. We only get one shot at today, and those of us who deal with the reality of chronic illness know all too well that wasted time can never be recovered, that when today converts to yesterday it is no longer a living thing, but becomes just a lifeless snapshot for the scrapbook in your mind. Better make this day a good one, despite whatever hardships must be overcome, because there is no greater tragedy than looking back and realizing that you've let yet more of that most precious and ever dwindling commodity, time, slip away.

The fact that MS is a progressive disease can make the future appear to be quite an ugly proposition. No matter what stage of the disease you're in, the knowledge that this day could very well find you in better shape than tomorrow can turn all tomorrows into fearsome things. But the incontrovertible truth is that no man knows what tomorrow will bring.

There is an ancient Yiddish proverb that says, "Man Plans, God Laughs". Regardless of your religious inclinations, the truth contained in those words is undeniable. If "God" doesn't work for you, then substitute "The Universe" or "The Fates". It is the rare person who can think back 10 years and honestly say that their lives have unfolded just as they would have predicted. For most of us, healthy or sick, the jigs and jags of life bring breathtaking surprises, good, bad, and everything in between. Remember, too, that good and bad are simply labels that we choose to apply to the circumstances in our lives. Nothing that happens to us is inherently good or bad, they only become so when we choose to tag them as such.

We all have little preview clips of what we expect the future to hold running persistently in our minds. Like the previews we see in movie theaters, though, these clips rarely bear much in common with the realities of the full-blown production. For a person with MS, the preview running in our heads can easily be that of a horror flick, but like most fright films, the anticipation is often much more terrifying than the reality turns out to be.

When first given my diagnosis, my inner projectionist spooled up reels of worst-case scenarios, some of which actually did resemble the condition in which I now find myself. The image of me in a wheelchair was sickening, and along with that image I conjured up all sorts of torment and agony. The reality of me in a wheelchair, though, while nothing I would have chosen, is a far cry from the misery I then imagined.

Much to my surprise, I'm still me. I can still laugh, and love, and worry, and despise, just like the old me. And without the wheelchair, there would be no Wheelchair Kamikaze, which has turned out to be one of the most humbling and gratifying roles I've ever been privileged to play. The give-and-take I've had with the readers of this blog have been incredibly enriching, and I'm grateful to everyone who reads these words.

Would I chuck it all for the chance to take a graceful and painless stroll around the block? Hell yes, but I refuse to let the lack of that option plunge me into the depths of despair. I choose to experience this moment in its fullness, informed by the lessons of the past and undaunted by fears of the future. It's not always easy, this living moment to moment, and I screw up more than I care to admit, but with practice and diligence it can be done more often than not.

As a community, people with MS have more reason for hope now than ever before. CCSVI holds the tremendous and very real promise of fundamentally changing the way Multiple Sclerosis is thought of and treated. Even if CCSVI turns out to be a false lead (which I don't think it will be), the forces that the CCSVI movement have unleashed will never again be put back in their bottle. Patients have learned to advocate for themselves, and researchers are being pried away from their beloved "autoimmune" model and forced to question all their previous assumptions. Additionally, stem cell research moves steadily forward, shining rays of hope on those whose nervous systems are in desperate need of repair.

We could very well be standing (or sitting, whatever the case may be) at the cusp of a radical new era in the care and treatment of those afflicted with Multiple Sclerosis. All the more reason to not flee into your own past, or crumble at thoughts of your possible future, but to live each day as if it's the last today you'll ever have. Because it is; for both sick and healthy alike, once gone, today is never coming back.

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  1. As always, you treat your subject in a balanced, reasoned, and realistic manner. The nature of this illness sometimes leads me to ask, “Who is that me who still exists despite all that has been taken from me?” Because you’re right. An essential self endures; sometimes, even elevated. It may be that we are all on the cusp of a paradigmatic shift which converts our dreams of restoration into reality. I hope so.


  2. Well...I'm back. After reading last month's post I have to admit I'm one of the readers who freaked out. But it was a good "freak out" I guess because it prompted me to actually do something. So, yesterday, my husband and I tried out Segways as a device that I could use to become more mobile since I've become quite reclusive lately. (I must have anticipated the live for today post that was coming!)

    I love reading your commentaries about life and looking at your amazing photography. Having MS is definitely a struggle, but finding your website has provided me with a support structure that is comforting. Thanks for that!

  3. You have great insight and sensitivity.As an old "neuro" nurse, the uplifting thing about the video is that Beth stood by her Mom. And was willing to show the world reality, love and hope in the form of let's cure this monster thief.We must all as a culture divert from judging people by their weaknesses.I also believe copaxone or other DMT's could help PPMS. The proteins I believe help bridge the impulses.Thanks for keeping us thinking. When I look at others I have to see myself, get angry and try to change the status quo.Mary

  4. Well said! I once told a man diagnosed and depressed with AIDS in the '90s, "You have as much NOW as anyone." Live. Laugh. We all have as much NOW as a new born baby.

  5. Last summer, I saw a list of people in my high school graduating class who are no longer with us. It was a disconcertingly long list, but I'm not on it. I may not be in great shape, but I'm still here. I'm still here.

  6. If you're going through Hell, keep going.
    W.S Churchill

  7. Hi Marc,
    Thanks for writing and keeping hopes up. I am living with an MS wife and we realized after the diagnosis how important is to enjoy our days together and help each other.

    We realized as well the importance of having a belief in the heart to keep the hopes high enough. CCSVI came to improve the odds of enjoying tomorrow as well.

    As Diane Standiford said: we have as much as anyone else to enjoy. Who knows, a non-MSer might have something else hidden deep inside that body without she or he knows.

    Human plans and God knew what future might be.

  8. Thank you for this post Marc. I think I needed it today.


  9. Every day may not be good but there's something good in every day. ~Unknown

    I love this, I live this to the best of my ability. It makes things more palatable.

    Lovely post Marc.

  10. Marc, what you write is my cup of tea! I got ms, there is so far no cure for it and what is my alternative? Griping will get me nowhere, so looking forward is my only hope. I recently got a severe urinary infection and they found clots in my lungs. Of course I am weak, but I will not give up my sick sense of humor.
    The Italian hypothesis CCSIV has hit the established medicine with a controversity and the whole thing is for sure a stumbling block. Some ms-patients claim loss of face of the established neurologists and some others blame the producers of medicine. I don't believe any of this! We must accept the the school medcine can't accept CCSVI immediately. It would scare the heck out of me, if the wind would change all of the sudden.
    But now with the Canadian CTV and the information flow over the internet all ms-ers are up in the air. That's a healthy happening.
    Of course I believe in CCSVI as it is the only sign of a cure we ever have seen. At the same time I agree - like professor Zamboni - that CCSVI has to be further researched and one has to establish facts. But none of this ten year research time. When and if it is found that CCSVI is a possibility, some backsides have to get moving and fast.

  11. Hi Marc,
    Once again your words have moved me and I am sitting here sobbing - not out of sadness, not out of self-pity, but for the deep truth they hold. Thank you so much.

  12. thanks for doing what you do, both the writing and the photography, both of which inspire. i am trying to figure out how to keep being a photographer when getting around is so difficult, and knowing your are out there, terrifying pedestrians, is very comforting. thanks.

  13. Hey Marc. You consistently add perspective to my perspective. Aarcyn

  14. "Life is what happens to you while you're busy making other plans." A line from a Lennon song on his last album says it best; the past is gone; the future is never guaranteed. All we really have is the moment.
    We can waste it thinking about our "glory days," or thinking about what MS will bring to our futures. Or we can give a silent prayer of thanks for being here right now, no matter our condition. Each breath is a gift, no matter how difficult. Even in my most painful moments, Every Moment is in it's Perfection.

  15. Marc,

    As I've said before, "sieze the Day" has a new meaning for us (especially Progressive) MS'rs. I do like to dwell in the past, and I don't neccessarily view it as a negative, or a blemish on my character. I view the past and am so thankful for all that I've been given the opportunty to experience and the things I've done.

    Do I wish I could still do them? you bet. I do think that we have to see each day as an opportunity for new experiences and grab them. The opportunty for those experiences may be there tomorrow, but our ability to act on them may not. MS does not mean we can't participate in life, it means that our participation means more. Non-MS'rs will not really understand how much effort it takes for us to do something out of our daily routine. Life is not about routine, schedules (at least mine) are never consistant. Life is about living, contributing to others, bettering ourseves, being an advocate. Living the dream is still a possibility, it is just that the dream has been modified. Appreciate life today! Enjoy the people you interact with today!

    "Yesterday is History, Tomorrow is unknown, we have today so let's go"


  16. Marc,
    As I read through the comments here it is increasingly apparent to me that you are inspiring so many in such a beautifully positive manner. It is truly wonderful to be able to accept our afflictions and approach life with a heightened awareness of what really matters. Thank you again for your effort and abilities. You are truly making a difference.


  17. Thank you all for the honest, sad and inspiring sentiments on this and the Grand Larceny post. And thank you so much, Marc, for taking the time to get to know me and for sharing my Mom's story with the world.

    I've not commented thus far, in awe of your insightful writing and sensitivity and the response. No words that I can type here can express my appreciation for your and your readers' support, my neverending sorrow for Mom's life, and my drive to "cure this monster thief" (as Travelogue for the Universe said). Take care, all.


  18. Hey folks, once again I've let the comments pile up to the point where it would take me hours to respond to each one individually. So please forgive me if I just thank you all at once, as I truly appreciate each and every comment that is left on this blog. The fact that my scribblings have found their way onto so many computer screens, and have elicited such heartfelt response, never fails to astonish me, and I'm deeply grateful to each of you for contributing so much to this blog. Thank you, thank you, thank you...