Wednesday, April 23, 2014
I’ve come to realize that in some ways my illness has had a similar effect on me. As my creeping paralysis has progressed, leaving me less and less able to take part in the ordered chaos of the world at large, I find myself increasingly alienated from the life I once knew, my space in the existence I used to occupy now almost totally erased. I’m still here, of course, part of the world but also apart from it, more spectator of than participant in the game of life. The never ceasing whirl of activity outside of my metaphorical and physical windows continues on, but the threads that once tied me to the self-perpetuating clamor of everyday life have largely been cut, putting me in a sort of conscious state of suspended animation. The gears of the world grind on, but more and more, they grind on without me.
The most tangible examples of this are the changes that have come to the industry in which I once earned my living. I spent 20 years building a career in TV and video production, which culminated in my heading up the DVD Production Department of a huge multinational music/entertainment conglomerate. My group was responsible for the programming and mastering of hundreds of discs, some of which sold hundreds of thousands of copies. When I first started in the position DVDs were such a brand-new technology that most people hadn’t even yet heard of them. Within a few years, though, DVDs exploded, and just as my disease was forcing me to to “retire”, Blu-ray discs had started to emerge as the next generation of consumer media. Now, over seven years later, streaming video (à la Netflix) is all the rage, a development I'd long anticipated but never got the chance to play a hand in.
The changing landscape of video production and consumer consumption has marched on without me, and the technological infrastructure to which I was a native and used daily to earn my keep has in short course become archaic. If I were to be suddenly cured and tried to reenter the workforce I’d be so far behind the curve that some snot nosed kid just out of college would put my once formidable technological knowledge to absolute shame. As far as my former industry is concerned, I might as well have spent the last seven years on a spaceship in suspended animation. Ground control to Major Marc…
The shock of my diagnosis created a seismic shift in my existence, and that shock reverberates still. You’d think that 11 years after my initial diagnosis, and over 15 years since my first symptoms started cropping up, I’d have somehow gotten used to the idea of my illness and its destructiveness, but no, several times a day I still find myself smacked in the head by the realities of my predicament. This perpetual state of shock has left parts of me petrified, in every sense of the word. Petrified as in scared silly, but also petrified as in unchanged despite the passage of time. I was officially diagnosed at age 39, and now, at 50 years old, parts of the inner me have been left untouched by the intervening years, stuck in a kind of stasis, in much the same state that they were when the disease first took hold. It’s kind of a diabolical case of arrested development; even as my body becomes ever more decrepit, parts of the me encased inside of it have been untouched by the passing years.
Almost all of my old hopes, dreams, and desires stand frozen, as if parts of my very soul have been put on ice (apologies to Eldridge Cleaver). Now, instead of propelling me forward in an effort to fulfill them, those old longings and expectations only serve to put an exclamation point on just how much the disease has cost me. The physical toll is obvious but the psychic not so much, camouflaged by copious amounts of effort spent trying to maintain a sense of stability and even contentment in the face of this brutal and ceaseless storm. Will I really never get to have my breath taken away by the artistic splendors of Florence, or purchase some ludicrously luxurious and fast automobile, or get stinking drunk on ouzo while carousing on an idyllic Greek island? While healthy, there was always the hope of erasing old disappointments with new successes, of paving over past mistakes with future achievements, but now those previous failings have been transformed from works in progress into set pieces, dioramas in the museum of my mind.
Yes, I dreamed big, and dreams die hard. In fact, I don’t think they ever die at all, but my old dreams now lie fixed behind a set of more humble but – barring any medical breakthroughs – much less achievable desires. To simply stroll through the springtime air, or to hug my wife with two strong arms, or to mindlessly jot down a note with my now-defunct right hand. In my long-ago life I amassed extensive collections of antique cameras and vintage wristwatches, both of which I took much delight in putting to good use. Now they sit gathering dust in boxes, physical remnants of a life suspended, the impulses that lead to my possessing them still existent but now also packed away by the distressing actualities of my stark new reality.
Much like those science-fiction spacemen, I awake to an environment that is resonant with echoes of my past. This new life is often incredibly difficult, to be sure, but the challenges it presents are also opportunities. Though some old friends and acquaintances have drifted away, new ones, fellow travelers on these uncharted waters, have made the journey much less lonely. The loyalty of my wonderful wife alone is reason to have faith in humanity. By extracting me from the hue and cry of my old healthy existence, my disease has afforded me a sense of perspective that informs my day-to-day life, and, I hope, might even help some of my comrades both healthy and ill to better navigate their own winding roads.
I’ve learned to not sweat the small stuff, and that most of what I used to consider gut wrenching problems are in reality small stuff. As my disease continues its infernal progression, finding contentment in what I have rather than what I once wanted or have lost has become a mechanism of survival. As the Buddha discovered centuries ago, desire, or more accurately attachment to desire, is indeed the root of all suffering. Despite the undeniable hardships within which I find myself stuck, I laugh just about as often as I used to, the sheer absurdity of my situation fodder for more laughter than tears. My mom is dealing with her own sense of suspended animation, courtesy Parkinson’s disease, yet somehow our telephone conversations often find us convulsed in hilarity. We both have more than a touch of the rascal in us, and the juxtaposition of our old pre-suspension hijinks with our new more sedentary and sedate forced existences serve to highlight the farcical nature of our puny little lives. Taking oneself too seriously is perhaps the gravest mistake a person can make.
Don’t get me wrong, despite the lessons learned and perspective gained, there’s virtually nothing I wouldn’t do to regain my health. As my creeping paralysis continues its increasingly destructive march, my tolerance for risk in my search for answers has become almost boundless, but despite my precarious situation there is still satisfaction to be squeezed out of these undeniably frightful circumstances. The old me is indeed in suspended animation, hopefully one day to be roused once again, but there is still life to be lived in this strange new world in which I find myself. It’s certainly not a life I would’ve chosen, but like it or not, it has chosen me. Despairing over my losses is only natural, but giving in to that despair would hand victory to the cosmic pranksters that conspire to make me the butt of their joke. I still have a middle finger capable of being raised, and with that raised finger I’ll continue to poke those pernicious little fuckers right in their beady little eyes. The joke's on them, for although part of me has been put into suspended animation, I'm still full of piss and vinegar…
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Your writing is fantastic.ReplyDelete
Apologies for what may be a question you've answered, but what are your thoughts on diet? I'm sure you've heard of the Wahl's (?) and Swank diets...they claim to have amazing results.
Thanks for the kudos, CrankyPants. I am familiar with the diet protocols for MS, and just like all things MS, I don't think there are any one-size-fits-all approaches. I'm sure that these diets do some patients a world of good, but others likely won't see much improvement. I've tried several of the MS diets myself, and never saw any significant benefit. Of course, proper diet is important for everybody, but eating is one of the few pleasures I still have that hasn't been touched by the disease, and if I'm not going to see any tangible benefit, I can't rationalize depriving myself…Delete
Yes, I can certainly understand wanting to hold on to something enjoyable (eating). The Swank diet has been a tough adjustment, and I don't adhere to it religiously, so I'm probably just depriving myself without getting the "miracle" results the diet promises those who don't cheat. In for a penny, in for a pound "should* be my attitude...Delete
Thanks for your input. I really enjoy your blog.
Love "Taking oneself too seriously is perhaps the gravest mistake a person can make."ReplyDelete
Your description of "suspended animation" to describe the physical imprisonment MS causes is thought-provoking. Hope springs eternal. Posted a poem today that's in the same vein of thought. We must be feeling introspective.
Best wishes for all good things to you, my friend. Onward through the fog.
Dear Ms. CrankyPants - MS 101 is down the hall to your left. Please don't trouble the Professor with such questions. Google harder.
Wow! Just asking a question of someone whose blog I like...and I happen to be trying the Swank diet.Delete
No need for snarky comments unless I ask something objectionable on *your* blog, and I assure you I won't!
GP, glad that you liked the post, I do think that suspended animation is an apt description for what the disease has done to some parts of my inner self, and I only wish I could put the physical part of it into some kind of stasis. Instead this freaking thing just keeps progressing, and, really, enough already!Delete
I must say that your comments to crankypants were a little harsh. I don't mind answering anybody's questions, and I appreciate all comments. Not trying to be a scold, as I know that you are a good egg. We are all in this mess together, though, and I like to try to help my fellow MSer whenever I can…
MsCrankyPants, sorry to offend. The comment was meant to be jovial, but I can also see why you took it in a different way. I forget that we aren't older and jaded yet. I encourage you to pursue any avenues that keep you healthy and strong.Delete
Marc, I promise, I'll behave myself.
I'm nothing if not gracious :)Delete
Your post opened on an interesting concept. Another "what if" game.ReplyDelete
What If... you could go into a sort of suspended animation where you wouldn't age at all. It would be similar to being asleep (or possibly in a coma). But you would become "re-awakened" when a cure for the Disease was present? What if you could also bring your wife into it with you?
Would you? If so or if not, why?
My own answer is to say no. Granted, I'm not as far along in the cycle of this disease as you (and I may never be), but I still wouldn't want to. I'm 32 years old, with a lovely 30 year old wife and a 2 year old daughter. I wouldn't want to miss ANY part of my daughter's growing up, even if it means being healthy as a result. At the same time, it wouldn't be fair of me to suck them into the future just because "daddy" wants it for himself. If I were younger, or even if my daughter hadn't been born yet, I probably would have jumped on a chance to say yes.
I would have gone so far as to convince my wife that she NEEDS to go into suspended animation, just because it would be better for "us" if I were perfectly healthy. It's a selfish idea, but I've learned a lot about my past motives since my daughter started becoming a real person. By real, I mean having a personality. She was still a "thing" that I loved for the first 3 months. It was probably the first smile that made her more than that. Like a light switch flipping on.
Wow, did I ramble a lot in this message. So, yeah. I wouldn't do it. But how about you?
Well, if I could take my wife along with me, I would definitely do it. I would have to include her in any decision-making process, but she might be okay with it if I went into suspended animation myself to wait out a cure. I'm sure she's not looking forward to watching the disease continues its relentless progression, but then again, life without such a fantastic fellow like me might be unimaginable. Ha ha.Delete
I am intensely interested in what the future will bring, though with the way things are going it seems there's a good chance I could wake up into some kind of dystopia. Kind of like Woody Allen in "Sleeper". Well worth a watch if you haven't seen it, very funny and very much in line with the premise we are discussing.
I don't have any children, so that doesn't play into the equation. If I did, I can see how that might be the only consideration. Thanks for the comment, interesting thought exercise…
Oh well, I used to change ponds about every 10 years anyway. I like to think that the MS environs is just a further step in my evolution!ReplyDelete
Yes, it is all part of our personal evolution. Not that I'm particularly thrilled with this stage of development, though. Would have much rather evolved into some kind of, oh, I don't know, grand high exalted mystic ruler of the universe. Never saw Wheelchair Kamikaze coming, but we can only play the cards that we are dealt…Delete
Thought you might enjoy my profile of a musician with MS. I profiled her for my podcast, "Day Job: How Musicians Pay The Rent." I went into the interview knowing she was a successful lawyer. Only once there did I learn about her struggle with MS. But it has me thinking more about the condition - which is very common in Seattle, where I live. Would love to know what you think about the podcast episode, as an artististic type with MS. Here is is: http://bit.ly/1ig52hhReplyDelete
Thanks for the link to your podcast, Joshua. Very well done, and fascinating subject matter. Lesli's story is compelling, and her experience with redefining her definitions of self and success are something with which many if not most MS patients can definitely relate. I also really liked the music…Delete
BTW, I was the lead singer of a post punk band in Boston during the mid-1980s. Way before MS ever crept into my life, but my experiences playing in the band made your podcast all the more relevant and enjoyable.
Thanks so much for your comment…
The middle finger is a serious piece of equipment I hope always to have the use of. If that turns out to not be the case, I will need always to be accompanied by a tiny crane, so I can continue to succinctly express myself.ReplyDelete
Heather, yes, a middle finger crane would be a definite must should I ever lose the ability to signal FU at will. Glad that you like the essay…Delete
Ah, Heather, I laughed out loud picturing that tiny crane. I salute you and Marc both (and not with my middle finger).Delete
OMG, Marc, you have outdone yourself. Suspended animation, indeed. That is so incredibly brilliant. I found especially apt your description of what could happen if we were suddenly able to be full participants in our former job environments. I who used to run departments with multiple highly skilled employees might not have the skills to do even simple clerical tasks. Technology and practices have changed that much. Very humbling, that is. Yet, at the same time, your post is a demonstration of how our altered circumstances have also created new ways of contributing meaningfully. And, yours is a meaningful contribution, indeed.ReplyDelete
Judy, you're words are very much appreciated. Technology moves so fast these days that I think even a "break" of six months might be crippling (pun intended), nevermind the seven years since I last held gainful employment. I often wonder where my career may have led had I not gotten sick, but such thoughts are such a waste of time. Doesn't make them any easier to quell, though, but I also remind myself that I wasn't completely satisfied with my career, despite whatever success I did achieve, and not to get seduced by a rose-colored reverie.Delete
Thanks for the kind words, it's nice to know I'm making some sort of contribution to the cause…
Beautiful writing and beautiful piece with lots of thought provoking ideas. I have heard of work but had never read it. Now, I am ravenous to read all of your blogs.ReplyDelete
Your photographing is amazing and thought provoking as well!! Quite a talent sir!
That should be photography!ReplyDelete
Thanks, Ren. I hope the rest of my blog lives up to expectations. Appreciate the kind words about my photography, too. I haven't posted any photos in quite a while, but I'm working on some that I shot last summer and never got around to processing (yes, MS sucks). Hoping to have them posted soon, might even be my next blog post.Delete
Thanks again for your comments…
It wasn't your technical knowledge that made you a leader, Marc. It was something very special about you. WHEN you get better you will be successful again. That is the beauty of now. You can come back. I see it, and I only got to know you after you became a cripple like us........ReplyDelete
Frenchie, your very generous words are comforting. Back in the day, I definitely wasn't your typical "boss", and tried to be more a friend and mentor to the folks who reported to me than some kind of commandant. I tried to model myself after one boss I had in particular, who was more interested in me the person than me the worker, who probably doesn't know quite how much I appreciated her and the impact that she had on me. I guess I should tell her, huh?Delete
Certainly hoping your words are prescient, and that WHEN I get better I can look back and say, "hey, Frenchie predicted it".
Marc, I keep going back to the part where you talk about the disease preventing you from "erasing old disappointments with new successes." I think this starts to happen to many people at our age, the realization that you no longer have the world spread out before you, with unlimited possibilities. Granted, you've had it shoved in your face, harder and faster than most people. My professional world has gone out without me, too. Just don't forget to acknowledge the tremendous achievement that is here, the virtual home of the Kamikaze.ReplyDelete
Keep on keeping that middle finger limber. I'll do the same.
Thanks, Lisa, I think you are absolutely correct in that many of these feelings come part and parcel with getting older, but I think being stricken with this beastly disease acts as a multiplier. Thanks for your pointing out my blogs success, which continue to leave me humbled and astounded.Delete
Please do keep that middle finger limber, it definitely comes in handy…
Enjoy reading your blog. I have a question.
Dysphagia Swallowing problems in MS
As disease progresses will swallowing eventually become impossible? Seems like a problem... I know they are trying to treat the symptoms and slow the disease, but is there a progression you are managing things to here, or is it all case by case and we hope for the best? I tried looking this up, but the internet answers seem very vague, or nonspecific... get into bands of this and that, or this or that symptom, and not into any progressivism discussion -which may indicate it is always unique?
Joey, some MS patients do indeed eventually have problems swallowing, and some even require a feeding tube in order to get their daily nourishment. Try not to dwell on such possible eventualities, though, as each patient's experience is different, and there is definitely no one size fits all prognosis.Delete
In the meantime, try to focus on what you still have, and live life to its fullest. If there is dark at the end of the tunnel, worrying about it won't put it off. Do your best to keep yourself educated and to self advocate, and don't stop looking for answers. Wishing you the best…
Thanks for the insights, Marc. I haven't been to your blog site for a while---major fatigue forces me to minimize my activities. But today I had a chance to read through your post and I really appreciate your words. Last week while in conversation about what I'm not able to do any more I realized I felt good about what I had done. As an ex-curator for visual art exhibits, I realized how glad I was to have chosen the path that was my calling (career-wise) even if it was hard to earn a living. I don't have to wonder what if I had tried to follow my dream----because I did in fact follow my dream! I can't work as a curator any longer but I've come to accept that now. Best to you,ReplyDelete
So glad that you were able to follow your dream, there are scant few who can actually say that. I'm thankful that my blog was helpful to you, and I hope it will continue to be. Keep dreaming, though. If you don't have dreams, you have nightmares…Delete