Thursday, January 12, 2012

Shock and Awe

English: Lightning 1882

Next week will mark five years since I was forced to "retire" due to my illness. It's been almost 9 years since I first received my MS diagnosis (which is now in question). In both cases, the human mind's peculiar perception of time plays its usual tricks; somehow, I feel simultaneously as if both events happened only yesterday, but also a lifetime ago. I suppose both readings are correct, as my healthy, working days do indeed encompass an almost entirely separate life than the one I'm living now, but in a strictly chronologic sense the time I've spent ill represents a relatively small fraction of my life, and the time spent not working an even smaller fraction still.

Throughout the early days of my illness, life really didn't change much, aside from an uptick in doctors’ visits, some new topics to search intensively for on the Internet, and a general sense of confused anxiety. Upon hearing my bad news, friends and family often commented on my stoicism and bravery, but the reality was that there was not much difference in my day-to-day existence in the days soon after my diagnosis. I still went to work each day, went out to dinner with my wife and friends, attended parties and other social events, and continued along as I always had, even as my symptoms gradually continued to worsen. Like the passengers on the Titanic who played soccer with the chunks of ice deposited on the ship's deck by the iceberg it had collided with moments before, I had little inkling of the shattering events that were looming on the horizon. I daresay that had I been given an unvarnished preview of what was to come, I might not have appeared quite so unflappable.

Those days, and all of the fully healthy ones that preceded them, now often seem like the first acts of a play with a heartrending surprise ending. One might think that nine years after my diagnosis, and five years after my disease had grown bad enough to give the insurance companies reason to label me permanently disabled, I'd have reconciled myself to the situation, and would have somehow grown used to my new normal. But no, the truth is that I wake up every day still shocked to discover myself trapped in my unending predicament, living in my own horrid little episode of The Twilight Zone. Yes, I make the best of it, choosing most days not to succumb to the misery that's always within arm's reach, and finding if not joy then at least contentment in much of the minutia of my day-to-day existence. Nonetheless, the reality of my ever encroaching disability means that there is no reconciling myself to any new normal, as my normal is a constantly moving target, leaving little time to mourn one loss before another shouts for my attention. There's really no good way to spin it, the situation sucks, and I guess I've just gotten good at not getting stuck in the suck.

Multiple Sclerosis (or whatever the hell it is I have) is an insidious maelstrom, a tornado that ravages just about every aspect of existence. As the disease progresses it cleaves a life in two, breaking it along a fault line between sick and healthy, between time spent fully functional and time spent fighting off encroaching dysfunction. The daily life I now lead bears so little resemblance to the one I led when healthy that my existence prior to my illness is practically a standalone piece, complete in and of itself, almost entirely divorced from my present reality. The continuing narrative of life has been shattered, and rather than proceeding from chapter to chapter, I've been forced to start an entirely new volume. I can scrutinize my healthy days as if studying a book on history, picking out my foibles and strengths, pinpointing the interconnected peaks and valleys, and can glean wisdom through such examination, but my actual connection to these events has been severed.

At times I look back with a longing so intense that it seems with just a little more effort I might somehow be transported through the years, to be given the opportunity to undo long-ago events whose impact was decidedly negative and by doing so maybe somehow change my fate, but of course this is impossible. The best I can do is use my past to inform my present, as a teaching tool to guide my thoughts and actions away from those that cause me pain and consternation and towards those that offer comfort and contentment. I suppose that's the best anyone can do, sick or healthy, but the fractured nature of my past and present make that past something more easily examined, as it's much more difficult to objectively assess one's life while still caught in its ongoing currents. Illness has extracted me from those currents, allowing me to examine my old body of work at a distance, almost as if it's that of a deceased loved one, a story with a beginning, middle, and end. In so many ways that old existence is indeed dead, and like a ship slipped beneath the waves, at times the fact that it ever existed at all is only identifiable by the random bits left bobbing on the surface after the plunge.

The inner life is also torn asunder by the shock of ever creeping paralysis, forcing introspection and a redefinition of self. When healthy, we are conditioned from an early age to define ourselves by what we do or what we possess, in many ways discouraged from concentrating for too long on who we are at our core, lest that person be at odds with the whims of society and popular culture. The illness, though, once it becomes serious enough, forces us into sequestration, sets us apart from the teeming masses. I often watch with melancholy bemusement as TV commercial after TV commercial hawks products that are utterly useless to me in my current diminished physical state. Shiny cars, exercise machines, athletic wear, item after item dangled as bait to keep the healthy ever striving, but as relevant to my existence as eggnog would be to an octopus.

I have been surprised to discover that there is a certain liberation that comes with disability. Once the necessity to work is removed from the equation, hours previously devoted to the office or worksite are suddenly placed back fully in your possession. Aside from a very fortunate few, and despite their practiced protestations, many people are wage slaves, working not to fulfill some inner passion but to maintain and advance their status quo. As the old saying goes, nobody ever lay on their deathbed and wished they'd spent more time in the office.

Upon my forced retirement, suddenly having all that time to fill was initially intimidating and unsettling, but soon enough proved to provide much opportunity for self discovery and the pursuit of interests and proclivities that had long lain dormant and might have even been forgotten. I was surprised at how quickly the cares of my working life faded away. There was no longer any need to be concerned with the deadlines, budget projections, project management, or the subtle social ballet of dealing with clients, bosses, and underlings that had been staples on my daily agenda. All of that recovered time and the clearing away of enforced responsibilities allowed for the reemergence of passions that had for many years been stifled. Through the odd combination of their unleashing and the emergent reality of my once dreaded reliance on a mobility device, I've been able to cobble together an acceptable quality of life, though keeping it cobbled together gets more challenging with the passage of time and the progression of disease.

When all is said and done we soldier on, not because of an infusion of incredible bravery or superhuman courage, but simply because there is little else we can do. Each dawn brings with it a choice, to collapse under the weight of the disease or to once again muster up the strength to make it through one more day. To the healthy it may seem that choosing the latter is somehow extraordinary, but when actually faced with that decision, choosing to collapse is decidedly unappealing. Finding the fortitude to make another stand, even if you can't stand, declares that day to be something of a victory. I'll kid you not, my disease continues to progress, alarmingly. Eventually, perhaps, the disease will win out, but I'll be damned if I conspire to play a part in its triumph. If and when the burden becomes too much to bear perhaps there will be a different choice to make, but until that day comes I raise a metaphoric glass in a defiant toast to life…

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48 comments:

  1. jackie from seattleJanuary 13, 2012 at 12:14 AM

    Simply poignant,truthful and oh so beautifully written.Your inner life's discoveries has also unleashed an artistic and talented writer. Thank you once again Mark. My day/life is richer for this.

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    1. Thanks, perhaps the best thing to come out of this whole experience has been my ability to reach and meet so many fine people, all trying to slog through the same bloody mess. United we stand, or at least we try to…

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  2. Sometimes when I hear my husband or my friends complain about working I want to scream "what I would give to be able to work again." Not having to work and not being able to work are two different things...for a long time I told my friends that I was taking sabbatical to do some writing. They all said how much they wish they could go that. I wonder now that they know I can't see well enough to drive and that often I have to use a cane if they ever really were fooled...

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    1. You make a great point. As my disability increases, the freedom I discovered when I first left work is more and more diminished.I do know that if I was suddenly cured, though, I wouldn't go back to my old career. It would have to be something much more fulfilling…

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    2. It's now hard to hear anyone complain about anything.

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  3. don't even think about it.
    what will I do out there on my own?
    egoistic, but we need you more that you need yourself.

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    1. Don't worry, I'm planning on sticking around for a while. I've still got a few tricks up my sleeve, and hope springs eternal…

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  4. This piece evoked waves of empathy, sadness, and defiance as I read. You bare and share like no other writer I know who has MS. Thanking you seems inadequate.

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    1. Your generous words are thanks enough, not that any thanks are needed. Simply knowing that my words may be of help to others is more reward than I ever expected.

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  5. Well stated, Marc. Thank You for sharing. ~ Ali

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  6. Just when I start to feel sorry for myself and say this is to hard to do everyday your blog comes across my screen. Thank you Marc for somehow knowing when your cyber MS'er need you.
    Patti NYC

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    1. Some days it's okay to feel sorry for yourself, and some days it's even okay to give in to the weight of the disease. That's why there are "Batman" reruns on cable TV. What's important is not to make a habit of it…

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  7. Sometimes when I read your posts, I cry. Sometimes I laugh. Always I'm entertained by your incredible wit and writing skills. Mostly, I don't comment because I frankly can't think of anything to say that could meet the level of intensity that was delivered to me in such an eloquent manner. But when I don't comment, it makes me feel that somehow you might not know how appreciated you are in this world. The time and effort that you take and make to share your open heart with us is a gift beyond measure. I live well with MS and sometimes I feel guilt when I read your stories. And then I remind myself that symptoms aside, we're all connected and we're all the same and we need the support of one another to survive, with whatever degree of challenge we're experiencing is this crazy earth school. Thinking of you Marc, and sending a smile and a wave of loving energy your way. Cassie

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  8. Brilliant, Marc. A true masterpiece. Cherie

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  9. I've been thinking for almost a day now, about this latest post of yours. I resonated immediately to the freedom that can come; in my case, it is the dramatic increase in mobility when I use my scooter and the relief I felt when I finally admitted to myself that I simply could not keep offering to do certain things that were exhausting me to the point of being absolutely flattened. CCSVI treatment notwithstanding, and it did serve me fairly well, this is the best Liberation Therapy I've ever received.

    BTW, you do know that mentioning the phrase "shock and awe" to a Minnesotan evokes gubernatorial images, don't you? You may not consider yourself a Jessie "The Body" Ventura but how about Marc "The Camera" Kamikaze? or Marc "The Wise"!

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    1. Another important lesson the disease teaches is the value of occasionally saying "no". Sometimes even more than occasionally. Our natural tendency to shy away from using mobility devices when we obviously need them is masochistic in a way. Amazing how powerful the ego is, when one would prefer stumbling, falling, or being sedentary to the anticipated horror of being seen in a wheelchair or scooter. And then we give in, and the whole world opens up for us once again. Silly humans…

      I did not know that "shock and awe" evoked any images other than those conjured up by the first days of the war in Iraq. That Jesse Ventura is kind of a nut, but I must admit I like him…

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  10. Thank you, Marc. It feels like you read the letters I've been writing in my head and you reconstructed them into your own beautifully crafted words. Your blogs are always enjoyable, interesting and educational. This one truly touched my heart in describing the inner turmoils of a "soldier" dealing with progressing MS. I've recognized the slight changes of those I love and who love me in their reactions to what has now become my ever changing life. Starting with the acclamations of super human bravery or emotional strength and now adding pity and heartache. But I'm still just me. Doing what I have to do to "win" with the cards I've been dealt. If I stop trying to win, I don't think I should stay in the game. But, for now, I still feel like playing.

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    1. Right on, sister. The way others treat us is often telling, and can be amusing as well. My closest and most valued friends are those who treat me with the same affectionate rudeness and disdain as they did when I was healthy. As you say, I'm still just me.

      In some of my older blog posts I wrote about the life lessons I learned playing poker. Sometimes you can win a big pot with a truly crappy hand, it just takes a little well-timed bluffing…

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  11. Although I feel like I am accepting my disabilities - that I can't move swiftly or easily, that I have to move like an 80 year old or fall over - what hurts most is when my own family becomes impatient with me. Yes, it is snowing out...yes, it is cold...and no, I can't move any faster. My hand on your shoulder steadies me but when you hurry along or act like it is fun when you dip or swerve and I have to follow along, it pulls me off balance. Why can't you go on without me? Let me make it on my own? Oh, because *you'll look bad*. Just because I don't laugh at these things, doesn't mean I don't have a sense of humor. MS isn't just about accepting your limitations, daily dealing with what is failing, a continual mourning - it is dealing with those around you who don't like that you can't do the things you used to do. No wonder I want to isolate.
    Sorry, your post was great as usual, didn't mean to set up my own soapbox! Must be having a tough day! MS is not just physical, it is mental, emotional, it is the full package of difficulties!

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    1. Wanted to delete this because pity parties are just not helpful but couldn't - so please ignore my post! I know isolating isn't helpful!

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    2. Sue, sometimes pity parties can be helpful, just as long as you don't allow yourself to wallow. Let's face it, dealing with creeping paralysis (which is an old medical term for MS) is like trying to get your arms around a greased pig (says the man from New York City who has never even touched a pig). Even worse, that pig is trying to eat you. It's impossible to not sometimes feel sorry for yourself.

      And it is a cruel little twist that we not only have to deal with our own problems, but also the problems that our disabilities cause for other people, people who we love and depend on. So please, don't try to delete those feelings, let yourself experience them but not to the point where they don't leave any room for more positive emotions. Sometimes a little isolation isn't a bad thing, it gives you a much-needed break from the world. Please don't beat yourself up, the disease will do plenty of that for you…

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  12. This one (as do many of your posts) certainly speaks to me; this March will make 6 years since diagnosis which came just over 2 weeks from my last day as a working pilot. My life turned sharply into a whole new dimension after that, one that often bears an uncomfortable resemblance to the Twilight Zone's creepier episodes.

    It's never pleasant, but between my ongoing endeavors to restore much of my life this foul affliction took from me, a new avocation writing online essays for publication, and pursuing what I can of my old pastimes and hobbies I have some substance in my life that the devil on my shoulder is constantly whispering is over and done with. By refusing the lies and half truths of that imp of the perverse I too can win those victories against the MonSter...and being able to flip it the bird is satisfying!

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    1. Hey, flipping it the bird is mild. I like to serenade it with a harangue of the foulest language possibly imagined, even sometimes making up new words in the process. Not only provides for some much-needed venting, but it's also a good exercise for the imagination.

      The episode of The Twilight Zone which my situation most often reminds me is the one with Burgess Meredith, who plays a bespectacled bookworm who finds himself the last person on earth after a nuclear holocaust. Desperate and alone, he's on the verge of committing suicide, when he discovers the remnants of the public library, and gleefully sets about arranging books in stacks that he'll be able to read for years to come. And then he accidentally knocks his glasses to the ground, and they shatter. The episode is called "Time Enough at Last".

      Geez, I know the feeling…

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  13. As ususual, great post Marc. But do you as i do at times feel that you are a burdon to your family, an albatross around their neck? I was diag in 2001 & "retired" in 2006 & my disability worsens with EACH day. I hate to hear others whine abt having to get up & go to work. what I would give to be able to get up! sadly, people don't know what a struggle it is to watch yourself SLOWLY disapear from view. But, after reading your post, I don't always feel so bad knowing that there are others facing the same issues! Just wish there was a majic pill, cause if it wasn't for the MS, i'm in perfect health/shape! keep on blogging! you are an ispiration. kim

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    1. Thanks for the comment, Kim. It can be distressing and absolutely mind-boggling to hear folks complaining of their relatively insignificant daily problems, when what we're dealing with is almost beyond explanation. But then I remember back in my healthy days when I could complain with the best of them, and sometimes, it seems, even looked for things to complain about. Now that I've been "blessed" with the wisdom of what it's like to have something to really complain about, and know full well just how lucky I really was, it's too late to put that wisdom to use. Just want Twilight Zone stuff, like I wrote to the person above. I do hope that my situation helps put things into perspective for at least a few of my friends and family members, or at a minimum gives them reason to pause for a second or two.

      There are indeed a whole lot of us dealing with similar issues and feelings. Hard to imagine how isolating this disease was before there was an Internet…

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  14. I just recently and RELUCTANTLY made the transition from a manual to a motorized chair. I suffer from Lupus/Vasculitis, with just a "little" severe complication of multi-focal AVN in my knees, shoulders and hips. For whatever reason, being confronted with "the new chair" really cemented the identity of "disabled person" into my mind. It really caused me to mourn the very tangible ghost of my former self.

    Anyway, I really want to express a heartfelt thank you for expressing your experience via your words, photos, and video. They've definitely helped just one more disabled gal feel a bit less isolated, and also helped to inspire her to lug this painful and fatigued body up outta bed and into her chair to venture out into the world.

    Good luck on your continued journey!

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    1. Thanks for the extremely generous words. I also have the gift of AVN, in my hips and shoulders. What a joy, right? For those who are blissfully ignorant of AVN, the initials stand for avascular necrosis, a condition that is a rare side effect of intravenous steroid use. It literally causes the bones in your major joints to die, and when they do they crumble and create what is sometimes an almost unbearable amount of pain. My hips often feel like they're made out of red hot razors and shards of glass.

      Keep lugging your painful and fatigue body out of bed as long as you can, and try to stay in the now. Don't be too hard on yourself if occasionally you have to spend more time in bed than out of it. You gotta do what you gotta do. One of the lessons this disease teaches is how to say "no", to others and yourself. Be careful, though, to not let it get to the point where you're afraid to say "yes".

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  15. Marc,

    Again, you have filled me with hope, laughter, and and a sense of calm. I even laughed out loud when I read this..."I bow deeply (and then fall over)…". Yesterday I was listening to some others talk about "solutions" and gratitude lists. I wanted to share some of my thoughts on what I heard. The first thing I heard about was doing service for others. As is usually the case, doing service for others usually rewards you ten fold. To me, your service is to other is your writing and sharing. I get so much out of it and it truly brightens my day. Second, I learned about having gratitude in the face of obstacles. Although I can't do some of things that I used to be able to do, I have a ton to be grateful for. Third, I learned about detachment with love. They were talking about detaching from others, but I thought that it might be possible to detach from my disease(transverse myelitis) but still continue to love myself for who I am. And last, that it is OK for me to be sad about losing my former self and that I can accept the new me and try to move on, one day at a time. Anyway, just thought I'd tell you how grateful I am to have found your blog and be able to read it.

    Sincerely,
    Davide Hilliard

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    1. Thanks for sharing the lessons that you learned, they are all right on target and extremely valuable. Zen teaches the danger of allowing yourself attachment to desire. It's okay to have desire, as desire is a great motivating force, but if an individual desire is thwarted you must be able to let it go and move on. Getting hung up on unmet desires is a sure ticket to a lifetime of misery.

      Certainly, it's important to separate yourself from your disease, as in no way are the two one and the same. The shock of being forced to deal with chronic illness does allow for the opportunity to rid yourself of aspects of who you are (or have been) that you're not particularly fond of, and cultivate those parts of yourself that bring you and those around you contentment and maybe even joy.

      Thanks again for your response, there is much wisdom to be taken from your words…

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  16. Shock and awe in your hands..just says what I feel too.
    Sometimes I wonder how I got as far as I have come then I remember, it is because of people like you Marc..that held out the lifeline and your HUGE Heart to all of us who walk/roll with the "snowflake" or "layered onion" of whatever the H this is!
    Your POV matters to me:))
    hugs to you and yours:)
    Ruth-Ann and Dan

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    1. Thank you so much. Believe me, the lifeline runs both ways. As David wrote, above, doing service to others does do service to yourself, and creating this blog has been more rewarding than just about anything else I've ever done. The fact that it continues to reach out and touch people never ceases to astound…

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  17. Wow, I am blown away by your essay, beautiful and heartbreaking at the same time. THANK YOU. KEEP WRITING! You've got that gift in spades. I'm with you in that toast! :-)

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    1. Clink! (That was our glasses clinking together in a toast)…

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  18. Replies
    1. Funny, I'm 48 years old and still feel like a boy. As they say, inside every 50-year-old is an 18-year-old screaming "what the heck happened?"

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  19. My name is Matt Allen G and I am 21 years old. I was diagnosed in August of 2010 at the age of 20 with MS. Most people say it is unfair that I was diagnosed so young and for a while I agreed but now I realize I am lucky because before my diagnosis I had no clue what I wanted to do with my life... No direction, no set plans, nothing. MS has changed my view of life in many positive and negative ways but in the end I suppose my eyes are opened a little wider then they probably would have been without this stupid disease so now I have a sense of direction.

    I know what I want to do with my life now, what I want to make of myself. I do feel like I have an hourglass over my head at times but I think I will be able to accomplish my endeavors in time. Some would say I have done plenty for the world of MS but for me that is just not enough. MS picked the wrong guy to mess with as I am as stubborn as can be so when I feel like I can barely move on those horrible days my unwillingness to "lose" pushes me that extra inch so based on that alone I can say I will take care of business. Hmmm.... I am babbling now, sorry.

    Anyways, I just wanted to introduce myself. A couple of friends sent me over to your website because you are also a photographer with MS in a wheelchair. I can at least walk most the time but what led me here was my "what do I do if I book this wedding and then end up in a wheelchair come the end of the year" mentality. Then a few friends said "well there is this guy" and here I am. I have not got to read much of your stuff yet, it's late, but I plan on exploring your blog a bit more tomorrow.

    You write well by the way. Hope to hear from you soon and if your on Facebook I would like to connect unless you keep that life separate. Interested in what you have to say about maintaining your photography with MS as it sometimes get's in the way of mine. Anyways, take care -Matt

    http://www.mattsms.com

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    1. Matt, it sounds like you're quite the fighter, and I'm very sorry that you've had to face MS at such an early age. Sounds like you have just the right attitude. As for that hourglass hanging over your head, keep in mind that everyone has one, but because we've been forced to look our mortality in the face we see that hourglass oh so clearly.

      MS has robbed the use of my right arm and leg, so I can no longer hold a camera to my eye. Therefore, I use a camera mounted to the arm of my wheelchair, via a Gorillapod. I'm currently shooting with a Panasonic Lumix G2(going to upgrade to a GH2, I think), as it's an interchangeable lens camera with a fairly large sensor that has a flip out viewscreen, which is vital for shooting at waist level.

      Being forced to shoot in this rather cumbersome fashion has changed my approach, as you might imagine. It's much harder to shoot those on-the-fly, off-the-cuff type "street" photos, which was previously my preferred style. Now,I've been forced to take a more deliberate approach, although I still try my best to capture images of spontaneity. Shooting isn't as "automatic" as it used to be, but in some ways I think that may be a good thing…

      Keep Fighting the fight, and I'd love to see some of your shots. The best way to contact me is at WheelchairKamikaze@gmail.com.

      I'm not really new one for Facebook, though I do have a pageThat I hardly ever look at. Better off contacting me through e-mail.

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    2. Matt,
      I was just reading your blogs and I like both yours and Marc's attitudes. I am 41 and was diagnosed 4 years ago. My first symptoms appeared when I was 21 though. I have been "retired" from work for almost 2 years now and do have problems with cog-fog and have trouble walking. I really try to keep a positive attitude. I was lucky enough to see/experience all I could, when I could. No regrets for me - and you are right - I still feel like an 18 year old - trapped inside the body of a much older man.

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    3. "As for that hourglass hanging over your head, keep in mind that everyone has one, but because we've been forced to look our mortality in the face we see that hourglass oh so clearly."

      I do not fear death, I just worry that I won't be able to get this giant list of things I want to accomplish now done before I am unable or too old. MS has made me want to do so much with my life and it has made me realize how much potential i had growing up that I threw away and may never get the chance to renew when it comes to art, drawing, sculpting, etc.

      But now I know how to look at my abilities and squeez every last drop of potential out of them so NONE is wasted! I want to make an impact in the MS community some how, wether it's helping just that one guy or making an impact in politics, I'll do something!

      Haha but anyways, nice camera, I shoot with a Canon EOS Rebel XS and I am currently trying to switch over to a 18-135mm lens as it would work much better for wedding than switching between a wide angle lens, zoom lens, and portrait lens. It doesn't work especially when you have clumsy hands.... I have dropped my camera TWICE since I got it, the first time broke my switch jack and the second tme made it so my SC card doesnt click in and out, you have to slide it in and slide it out "manually" if that makes sense. Can't afford to service it right now.

      Anyways if you want to see some of my work I am trying to rebuild my portfolio website but despite the fact that it looks like garbage right now you can just follow this link:http://mattallengphoto.blogspot.com/ As far as my artistic stuff goes though, still not sure where I want to share that so yeah IDK haha working on it.

      AND RICK - NO REGRETS, that is an attitude I have worked so hard to achieve because I was being swallowed whole by my regrets, the past was a common dwelling place for me, and it was HORRIBLE. But I have escaped that finally and am trying to look forward now!

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  20. Why do you say 'I first received my MS diagnosis (which is now in question)'? I was diagnosed with cerebral vasculitis in 1994 and in 2008, the diagnosis changed to MS. With the latest episode last year, the radiologists and the neurologists are totally confused - they are not able to decide what I have. It is not of much significance to me nowadays because I have learned to live well with my limitations. Thanks for your posts.

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    1. My diagnosis isn't actually a question, it's in doubt.after being examined by the specialists at the National Institutes of Health, I've been told that I very likely do not have MS, and that I am a real medical mystery. Though the doctors severely doubt that I have MS, they can't come up with a viable alternate diagnosis.

      It's estimated that between 5%-15% of MS patients are actually misdiagnosed, as there are many diseases that can look like MS. You can read more about this, and my peculiar case, in an older blog post of mine, which you can find here:

      http://www.wheelchairkamikaze.com/2011/02/misdiagnosis-of-multiple-sclerosis-and.html

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  21. Marc,
    I appreciate you. Your words are heart wrenchingly true. Thanks for sharing.

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    1. You're very welcome, Nicole. Thanks for your comments.

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  22. Hi Marc,
    Thanks for some lovely thoughts. I find I like saying MS has made me a better person if only
    because viewing life optimistically is better than the alternative.
    I like reading your blog; thank you very much.

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    1. Funny, I do like myself better now than I did before I got sick. I feel like I'm sure to myself now, not forced to play roles demanded of me by the expectations of society. Being sick also forces you to live in the moment, since it's quite uncomfortable peering too far into the future. The simple act of living in the now generates a natural sense of contentment, I find. For instance, sitting here answering your comment, all is well and good. If I stopped and started worrying about whether or not my left arm was going to be working in 5 min., not so good. Better good then not so good. Sometimes it just comes down to simplicity of thought.

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  23. I may not suffer from any serious diseases, and of course I have no way of knowing what your every day must be like, but I do know one thing, and that is that you are an inspiration to people, not just the sick, ill, or what have you but everyone.....
    I got really lazy with out realizing it was happening, I was finding my self staying at home, and not going out, just sitting and not doing any thing, but seeing and reading your blog has given me the kick in the ass I needed, I am wasting my life just sitting here and doing nothing, so I have decided that today I am going back the way I used to be, more active and to grab life by the short hairs and ride it for all I am worth..
    Thank you....

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