Tuesday, June 2, 2009

Multiple Sclerosis, The Devil In My Details...

Sometimes, getting what you always wanted isn't all it's cracked up to be.

When I was in my early 20s, I was loudly committed to living a bohemian existence. I was the lead singer of a local punk rock band, and grudgingly worked just enough hours in my part-time "day job" to about cover rent, food, booze, and cigarettes. I kept the hours of Dracula. Most nights would find me playing pool in some divey bar, and I never arose before the crack of noon. As old jazzmen used to say, I lived like I didn't know that there were two 10 o'clocks in one day...

I swore to all who would listen that I would never, never, NEVER join "mainstream" society. I would live my life entirely as part of the subculture, divorced from the world of 9-to-5 jobs, American Pie, and social convention. I vowed I would never capitulate, and that I would be steadfast in following my path, never allowing myself to be enticed by the glittering goodies that conventional society would seductively dangle to get me started down the slippery slope towards normalcy, like a corner dealer offering up a free rock of crack.

My mom would yell that I acted as if the universe owed me a living, and though I reflexively snarled back at her, deep down I knew she was right. I was sure the fates had something special in store for me. I simply would not entertain the thought that I was destined for the drudgery of the everyday. If my being a rock star wasn't in the offing, well then, I'd make it by writing, or through some other as yet unrevealed stroke of providence.

If a fortune teller had told me back then that in 20 years I wouldn't have to work, that I'd follow no schedule but my own, that my words would be read by countless strangers, and that I'd have a beautiful wife and an apartment in a New York City high-rise, I would have been beside myself with joy. Vindication! My dreams would be fulfilled! I would indeed live the life to which I somehow knew I was born.

As it turns out, those predictions did come true, but through twisted circumstances I never could have anticipated.

As time went by, I found no overnight success, and the inevitable realities of adulthood started taking their toll. The band broke up, student loans and other debts came due, and life in the urban underground finally started to lose its grungy appeal.

I took my first step down that dreaded slippery slope.

At the age of 27, I took a job as a video production assistant with a local cable company (I'd somehow earned a degree in film despite my rockstar fantasies). It was the first full-time job I'd ever held. The salary was paltry, but I did well at the job, and soon got promoted. I started dating women who expected more than cheap beer and raw emotion. I allowed myself little luxuries, which grew into bigger luxuries, and soon I just couldn't live without my convertible two-seat sports car and my antique wristwatch collection.

The job at the cable company gave way to a more prominent spot at a marketing firm, and that to a position in the corporate communications department of an international conglomerate. Though the spark of that willful 24-year-old still smoldered within, it wouldn't have recognized the face staring back at me in the mirror. In times of introspection there were always moments of self reproach, but these could be papered over easily enough with the purchase of another 65-year-old watch, or lost in a bottle of good wine. I had wandered far from the path I once thought I was meant to follow, and that path now seemed lost to me forever, the road not taken, the life not lived.

And then came Multiple Sclerosis, a wrecking ball smashing through the edifice of my life, leaving what had once seemed secure a crumbled, smoldering heap. The disease rendered my right arm and leg spastic and weak, and instead of sports cars I now drive a wheelchair. The career that fueled my venture into the mainstream was extinguished, and in place of the income it once provided, there are now monthly deposits courtesy of long-term disability insurance.

Yet, in so many ways, I’ve somehow gotten just what I had wished for all those years ago. My finances are no longer contingent on employment, and indeed, given my present circumstances, they do seem heaven sent. Once again I am a stranger to the morning, and there's no denying that I keep the hours of a novelist (as I sit here writing this at 2:30 AM). My words have reached countless strangers, though not the masses I once imagined, but instead a select audience whose appreciation has humbled me. I am free to live entirely unbound by social convention, whose limitations have been replaced by those imposed by the ravages of a progressive disabling disease and the good common sense of my wife. If I had actually received that thrilling prophecy 20 years ago, it would have been right on the money.

Like a rube wishing on Aladdin's lamp, I've seen my deepest desires fulfilled, but at a diabolical cost. And just like that rube, my most important wish appears to be one too many. It doesn't look like my MS is going to magically disappear any time soon. The devil, my friends, is in the details...


  1. Faith is the victory. May you always have faith. ♥

  2. Marc - Very Well Written !!
    Learn more of Multiple Sclerosis when registered at: http://www.msviewsandnews.org.

    Once registered, you will receive our weekly ms related e-newsletter, keeping you informed of current MS information.

    And when you can, use our MS Blog: http://wwwmsviewsandrelatednews.blogspot.com/ - to your advantage.

    Have questions? write to: stuart@msviewsandnews.org -

    Please don't forget to inform others whom you know that are affected by MS, of this information.

    Thank you

  3. Here I am at work, addicted to your blog and Lisa Emrich's blog and my own blogging helping me get through the day. I dreamed of being a famous writer and staying at home in my wonderful back yard writing like Robert Frost.Instead I am fearing the day when that's where I sit while the able bodied go off to work.
    Meanwhile I coordinate long term care services and try to encourage those with more advanced disease to get help and make the most of their lives. I give myself shots and go to he clinic where they experiment on me nicely and I pray this is the cure. Marc, do not doubt your readership appreciates you chronicals of your life's challenges and the obvious love of your wonderful wife. She is your greatest gift.
    Many more read your blog than comment and by helping one comrade (even myself) with MS, you help us all. Best wishes.Mary Gerdt

  4. See, you become on of the grown-ups and get MS. There must be a correlation!!

  5. Hi Marc,
    It is amazing how much we take for granted when we are able bodied people. I was diagnosed with muscular dystrophy at the age of 31. Didn’t think much of it at the time still able to play basketball, racquetball and even able to walk up a flight of stairs without even thinking a thing about what it takes to go up them. Like MS this is a slow progressing disease. Soon I noticed things going wrong getting out of a car, going up stairs, standing from a chair all seemed to get harder to do. Then our daughter at the age of 7 was diagnosed with brain cancer. Long story short she is a cancer survivor at the age of 17 and is doing well. As you can imagine this time period took a lot out of us physically and mentally. I found my MD progressing quickly. I was hit with a stroke directly due to the MD with this my body couldn’t function very well. So the hard decision of going on disability became real. After working from the age of 14 to the age of 45 it was over not be able to work as I am sure you know it is a real blow to your self worth. Then the fight begins with Social Security, Insurance on and on. I could ramble on for awhile but, even though our disease isn’t the same I want you to know I share the same frustrations, anger and never ending mental and physical challenges of just living day to day. Thanks for your blog I always look forward to seeing your views and videos.

  6. I love to read your writings. Maybe you can do a book, i would definatly read.....

    take care,

  7. i love the idea of a chair mounted camera. i am a photographer, dx with ms in 03, nearing wheelchair time. i've often thought about continuing my street photography from a chair - nice to see it's already being done, and done so well. thanks for sharing.

  8. i forgot to ask - i'd love to see your rig - chair with camera. please post some pix!

  9. Marc, I too have MS and I understand very well the devil and the details... Good luck my friend.

  10. Centennial: faith can take many forms, some of which I have, and some of which I don't. But you're right, it is very important to have faith in something...

    Stuart: Thanks. For any readers out there looking for a good source of information on MS, I heartily endorse Stuart's website.

    Mary: thank you for the lovely words. Sounds like you do your part in helping those in need, even while battling your own hardships. I find that it's therapeutic to feel like you're helping someone else.

    Kicker: I guess Peter pan will never get MS...

    anonymous: you've traveled a very rough road. The only way out is through, though, and you seem to be the kind of person who won't give up the fight. Keep battling, no matter what the odds...

    Camille: thanks, I would love to write a book. Who knows, maybe this blog will someday become a book, if anybody would care to publish it...

    wonlife: I posted a full description of my camera rig, complete with photos, earlier in the blog. Here's the URL: http://www.wheelchairkamikaze.com/2009/05/kamikaze-camera-set-up.html

    Tracy: good luck to you, too, and your battles with the devil in the details...

  11. I was a rockstar (okay, not 'star', not even close, but I was on TV). I am a novelist. I have MS. My life is so not what I expected in my Wild Yoof, not even close. But life is good--hard, sometimes, strange and beautiful at other times, just plain ordinary upon occasion. But, hey, it absolutely beats the alternative.

    I enjoy your blog. (I get so tired of the happy cripple crap, the hearts and flowers crew who, like pornography, seem to take over the web discussion of MS.) Thank you.

  12. Mark..I forward your blog on to several people who are fighting for their lives. I always get such great feedback.

    You take 'what is', put YOUR spin on things and inspire everyone lucky enough to read your words.

    Sometimes we get what we want in a strange form. Thanks for telling it 'like it is'..

    Here's to staying up all night and sleeping till noon...clink...

  13. Hi, Marc,

    I posted a comment here yesterday- but it seems to have disappeared now!

    Anyway, wonderful post, one of your best! Very thought-provoking.

  14. Another video soon, I hope!

  15. Marc,

    Your best post yet. Keep them coming.


  16. Personal opinion you gave up too easy look deeper your independent spirit could pull you out yet but you have to be open and willing to give it everything you have. Even if this is the time of the emergence of the autoimmune phenomina, look deeper. Autoimmune diseases have recently reached epidemic numbers of 1 in 4 people will have an autoimmune disease, this is a health disaster. We need to step aside and have a clear look at where we are being taken, there are other choices. The world of health is not one dimensional as modern medicine would like you the think it is. Autoimmune diseases are both perplexing and mysterious to say the least; there are approximately 80 to 100 with another 40 waiting for a name and if you get one you will get another and so on. Medical science who has not cured a disease in 60 years, cannot explain why we have this autoimmune epidemic or why you have even one of these diseases. You can trigger one of them just by having an auto accident, taking aspirin or medication or by starting a new exercise routine; even too much stress says latest research. Naturopathic medicine says, “Look for the root, it is in the basics beginning with what is on your fork, what toxins are in your body, what exercise do you do, what stress is in your life, what is your spiritual base”. Scientific arrogance has led us down the wrong path we better stop and take a close look at what is happening. This month 150 new chemicals will be added to the 85,000 in the environment which are part of the autoimmune problem. They will be added too industry with no oversight control at all. A world upside down. God bless you in your search.

  17. Hi Marc, Another good post from you; it is thought provoking. For this reason and for your lovely Kamikazi videos, I am awarding you the "My Wonderful Favourite" blogger award.

  18. Oops, sorry - forgot to say Please come by to pick it up. It's waiting for you.

  19. Hi Marc,
    Come to LA and give Bioenergy therapy a try.
    July 13-16 there is free event to document the beneficial effects of Bioenergy therapy ( the Domancic Method ) on MS - This is the first of it's kind in the US - and is a non profit event to help people with MS and Parkinson's - the proof is in the results - here is the website -

  20. Hi Marc,

    When you get your MS cured can you widen the cicrle to include everyone else too.

    Still catch myself wishing it would all go away.

    Then wake up with my arms clamped and frozen in place and realise again there is nbo escape even for good behaviour.


  21. Hi Marc

    Very nice writing,Marc . I got to your blog doing a search on Domancic Bioenergy Method and is interesting to see that Stephanie put a comment about the Bioenergy healing event in LA in July. It is interesting because I will be there participating as one of the therapists, and I would like to know if you will get a chance to come to LA for the event?
    The other thing that I would like to let you know is that at the end of July, I will open the first NYC Bioenergy Healing Center ( the same method that is being offered in LA), that offers effective and low cost treatments for chronic conditions like the one you experience.
    You can find more info on my site www.bioenergycenternyc.com also you can write to me if interested or with questions at info@bioenergycenternyc.com
    I hope you can take some time and investigate this modality, it has proven and documented scientific and medical results, it is not some kind of new age therapy, but little is know about it in US.

    Hope to hear from you soon.


  22. I keep seeing you in that picture with the accordian (?) . Is there a U Tube video with music somewhere? I have found that Folk Metal is a genre that appeals to me, just now. Lots of hurdy gurdies and acordian and violins and cellos interesting percussion great vocals in languages I don't know. Music and funny stuff get me through the days and nights. My sons are all musicians.

    Have you thought about Noetic?

    Thank you for all that you have done
    Ye Olde' Swamp Granny