Thursday, March 26, 2009

MS and Me: A Life Bisected, and Dissected - Part Three

Given my newfound appreciation for the value of time, when I looked back on my healthy life I was aghast at how much of it I'd wasted on negative emotions and self-defeating actions. I lost irretrievable, irreplaceable days and weeks and months and years spent depressed, or resentful, or distracted, or obsessed, time that I will never get back, ever.

Rather than burning a torch for some lost love, or agonizing over life's many disappointments, I could have been making the difficult changes needed to generate my own joy. Instead, I chose to allow myself to wallow in despair, embracing it with the fervor of a suicide bomber.

Incredibly, all of those nights I spent sitting on the couch with my head in my hands only accomplished one thing, putting a dent in the cushions. In fact, all that emotional turmoil served only to make the situations I anguished over worse. What woman wants to return to a man who has dissolved into blubbering goo at her leaving him? What problem has ever been solved by a soul consumed with gloom? Eventually, simple self-preservation forced me to let go, each time surprised to find that I had somehow survived the wreckage.

I now know that my relief could have come much sooner, at any time I made the conscious choice to simply let go. What kept me hanging on was an odd mix of ego and insecurity, my ego not wanting to admit that any such disaster could befall a person as wonderful as me, and my insecurities afraid that said disaster only confirmed what a sap I really was..

Of course, heartbreak and disappointment will always hurt, and that hurt must be experienced. But prolonging the pain, and feeding on it, serves only to waste time, whose value rises with each passing day. If you were suddenly told that you had only 100 days to live, how many of them would you choose to spend miserable? Ultimately, we've all been given "X" number of days. We don't know what our "X" is, but each day’s passing brings us closer to it.

Every morning we wake up, healthy or not, given the opportunity to remake ourselves. We do not have to let the person we were yesterday define who we are today. The promise of each new dawn can be squandered by repeating patterns and habits that have always held us back, or we can decide that today we will finally treat ourselves with kindness.

This awareness has helped me deal with the hard reality of disability, and with the horror of watching multiple sclerosis gnaw away at me. Each morning, I contemplate my situation, confirm which body parts are working, acknowledge that it all sucks incredibly hard, and then work up the resolve to make the best of my bad situation. Today, the right side of my body is useless, but I am still able to marvel at my incredibly caring and wonderful wife, post to my blog, hobble around my apartment, and get into my wheelchair and make wacky videos. So, today is going to be a good day.

Tomorrow? Well, tomorrow I will go through the whole process all over again...


  1. Love it. Just finished Tolle's "Living a Life of Inner Peace" A really worthwhile read, IMO.

  2. I have come to anticipate with pleasure your rants, ruminations and reflections on a daily basis, and it really does help with taking the edge off living with MS. Thank you, Kami. (aka Centenniel)

  3. I have always been proud to have you as my "Big" brother. Reading your blog, one that I cannot stop reading, makes me thrilled and even prouder that you are brother. As awful as this terrible disease is, it has been amazing to watch your courage and strength while dealing with it and, most of all, watching your attitude change.

    I may have had the luxury or rather torture of getting attacked by the tickle worms with both of those hands of yours as a child. I am glad that there is still one hand left that can give my munchkin a dosage of the tickles worms. It was one of my best memories of my childhood.

    Just wanted to really let you know that I love you a ton. I think you are amazing.


  4. I moved all the way to Colorado to immerse myself in the studies of Buddhism. Little did I know that the bodhisattva was right there in the form of my brother. Rinpoche's, Prophets, Monks, Shamen....they've got nothing on you. Your clarity and wisdom is inspirational.

    Fuck walking, it's time to start levitating. Wear a helmet, your ceilings aren't that high.

  5. Thanks for your humorous and frank commentary and movies of New York. I believe when we vegetate we are growing inside leading to acceptance and having a purely human experience. It makes our best times all the more precious. My MS is mild but some days I sit and wonder where it's all going.

  6. There is such clarity of thought in your writing, Marc!

    "Time's value rises with each passing day"- How true that is!

  7. Each and every time I read what you have posted, I can feel a piece of me inside shake my head "yes, I understand that". You articulate those very words that I am so often unable to articulate myself. Living with MS, whatever stage one is in, is a constant change. Each day we get up and make a decision to go on, despite what we may be "missing" that day. I have chosen to look at what I can give back, what I can do for others, how I can make someone smile~as my way of dealing with the MonSter within. Somedays it works well, others not so well. There is a small comfort in knowing you are not the only one struggling. Thank you once again for being willing to let your voice be heard, and your experiences shared.

  8. Marc,

    Great trilogy. You have a gift for articulating your experiences with MS. You obviously are very intelligent, but your stories read free and easy. Good luck with your challanges, and please keep the writing and the videos coming.


  9. To everyone who commented: I just wrote individual replies to each of you, but the computer freaked out and nuked them. I use voice recognition software to make these posts, and sometimes things just go kablooey.

    I hope it will suffice to say thank you en masse, since I don't have the wherewithal to try and dictate again everything I just lost. Your kind words and phrases are appreciated beyond words...

  10. Well, Marc, what can I say? Words are inadequate to express my appreciation and respect. Deep, deep gassho.

    For readers who aren't familiar with the term, a gassho is a Zen bow of gratitude from the bottom of one's heart.

    (BTW Marc, I'm cripsie...leela is my Blogger ID)

  11. Wow- as I read this, I wonder why I couldn't put all my feelings into words like you do. I'm so glad YOU do! I can relate to everything you write! Thanks, and please, keep writing.