Tuesday, August 26, 2014

The Problem with Progression, Revisited

English: Cropped version of :Image:Domino effe...

English: Cropped version of :Image:Domino effect.jpg (Photo credit: Wikipedia)

The good folks who administer the website MultipleSclerosis.net (click here) and I have reached an agreement to publish 20 essays from the Wheelchair Kamikaze archives on their site. MS.net is a wonderful resource for MS patients and those who love them, filled with the latest MS news as well as insightful articles and essays by folks dealing with the disease in all its forms. Lots of good stuff there, all of it high-quality. Best as I can figure, the fact that they decided to include some of my essays must be due to some sort of clerical error.

The initial WK essay published on MultipleSclerosis.net is a post that first appeared on this blog in July, 2009, entitled “The Problem with Progression” (click here). Back then I’d only been writing Wheelchair Kamikaze for about six months, and had been in a wheelchair for one full year. At the risk of stating the obvious, the essay deals with the progressive nature of Multiple Sclerosis disability. In it, I state that “the problem with progressive neurologic diseases is that they progress”, a sentiment which may seem self-evident but carries quite a wallop. When I was first diagnosed I listened in a befuddled haze as the doctor talked about the need to try to minimize something he kept referring to as disease progression. I’d no idea what he was talking about, but I sure would find out in the months and years to come.

Even in those early days it was clear I had progressive neurologic disease, with few if any viable treatment options available. Since then, new disease modifying therapies and even some alternative approaches have proven to have significant positive impact on many afflicted with the relapsing remitting form of MS, but though the attention of researchers is finally shifting to progressive disease there remains precious little in the way of effective therapies for us “progressives”.

The roughly 6 years between my initial diagnosis and my writing “The Problem with Progression” had seen the disease wreak havoc with my life. I’d gone from having a slight intermittent limp to requiring first an ankle brace, then a cane, and finally an electric wheelchair. I’d been busily employed in a high profile industry but was now 2 ½ years into my forced retirement, had seen my social life diminish from flame to flicker, had witnessed my body betray me in ways I’d never thought possible. Such a tremendous amount of upheaval in such a relatively short amount of time, my body caught tight in the grip of a seemingly insatiable beast, my mind buffeted by an emotional whirlwind, my intellect left to desperately try to sort it all out.

Given the alarming rapidity of my disease progression, I wrote about the difficulty of processing the losses already visited when the prospect of losses to come loomed ominously on the horizon. The flipside of looking back to mourn the wounds already inflicted is looking forward and anticipating the insults yet wrought, leaving little room in which to find some measure of solace.

The opening paragraph of “The Problem with Progression” talks about the realization that I’d very likely soon need to use my wheelchair inside my apartment, when at the time the mechanical monster had been used exclusively out-of-doors. Well, that little prediction did indeed soon come to pass, and now the notion of my walking from the bedroom to the living room seems about as likely as my being elected Pope (quite the long shot for a Jewish guy from Queens).

Later in the essay I talked about how annual events had become markers of my disease progression, times when I could look back one year and assess the damage done over the previous 12 months. I used the example of the Super Bowl, wondering if and when I’d no longer be able to watch it from the comfort of my living room couch, or even be able to manipulate the TV remote. It’s now been at least four Super Bowls since I’ve watched the NFL championship game – or anything else, for that matter – from that couch. Instead, all of my TV viewing these last few years has been done from the vantage point of my wheelchair, which is at once both a constant reminder of my imprisonment by the demented captor that is MS, and the key that keeps me from being completely swallowed up by the dungeon of disease.

The six years that preceded my writing “The Problem with Progression” witnessed MS completely reshape my existence in dramatic fashion. The five years since, though, have seen the changes become much more incremental, but in some ways perhaps even more insidious. The psychological hurdles presented by being forced by the disease to totally change almost every aspect of my day-to-day existence in the half-dozen years following my initial diagnosis were big-ticket items, readily identifiable monoliths with which to emotionally grapple.

Now, although the disease continues to progress largely unabated, the changes are more discrete, much less apparent to anyone but me and my closest observers – increasingly clumsy fine motor skills in my one still usable hand, a sometimes crushing fatigue, muscle spasms that pound away in the dead of night. Most of the blatantly obvious milestones have already been reached, but each passing year finds me still weaker and less able. Creative adaptations allow for a semblance of equilibrium in quality of life, but at some point, barring some much hoped for intervention, the mounting deficits will defy adaptation. The difference between the earlier, more obvious stages of my disease progression and that of these later years is kind of like being dragged under water. Once your head goes under the surface, all anybody looking from above sees is that you’ve submerged. The only one who can feel the increasing pressure and mounting darkness of being dragged deeper and deeper into the murky depths is you, the marvels of fresh air and sunlight drifting off as if they were only half remembered fragments of a long-ago dream.

It’s testament to the power of the human spirit that life beneath the waves still holds elements of wonder, sparks that continue to shine brightly once the effort is made to clear away the shade. Though the disease progresses so too does the desire to defy it, to stake a claim in a world turned upside down. I may not get out and about as much as I used to, even in the wheelchair, and the rigors and stresses of the disease – both physical and mental – may dictate submission to constraints I long to throw off, but I’m still here, dammit, occasionally licking my wounds but nowhere near willing to raise the white flag. Dragged under the sea of disability I seem to have managed to grow gills, and though I acknowledge and accept that there are depths below which there can be no survival I maintain hope that somehow, someway, I’ll break the grip of MS and once again bob to the surface. In the meantime I’ll simply do the best I can, even if this year’s best pales in comparison to that of only a few years ago. The problem with progression may indeed prove to be unsolvable, but it won’t be for lack of trying.

29 comments:

  1. Marc, your articles are so insightful and succinct. They resonate and could easily be my thoughts put to paper. I know I am not the only one who feels this way and I salute you for using this gift of writing to reach out to so many of us. Congratulations and thank you.

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    1. Well said and I second that, Tami!

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    2. Tami and Ed, thanks so much for your generous words. I only wish there weren't so many who can so closely relate to the topics of my essays. Dealing with this disease conjures up so many emotions, it can be difficult to untangle them all and even more difficult to express them. In many ways writing this blog is a form of therapy for me, helping me sort out the jumble of thoughts and feelings brought on by MS. I'm glad you find my blog helpful, but in I'm sorry at the same time…

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  2. As Neo said..."because I choose to." Great post Marc, and congrats on the MS.net thing. Thank you and have a great day!!!

    JE

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    1. Thank you, it is nice to be included on MS.net, and I certainly hope my essays are a positive contribution to the site.

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  3. Congratulations on the gig for MS.net!
    "Dragged under the sea of disability I seem to have managed to grow gills..." I love that line! You CAN make a silk purse out of a sow's ear. I give thanks for you and your blog; you help me to remember I'm not alone in my struggle.

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    1. You are certainly not alone in your struggle, although I know that it can often feel like we are battling this disease all on our own. It's hard to imagine what life must've been like for MS patients in the pre-Internet days, when finding others sharing the struggle was infinitely harder. I'm often unsure as to whether or not all of our new technology has helped or hurt society, but in the case of patients struggling with various diseases, it's definitely been a boon. Thanks for contributing to the blog…

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  4. (I was referring to MS as a sow's ear, not you! Hope you knew that!)

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    1. Believe me, I've been called things much worse than a sow's ear…

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  5. Well, speaking strictly for myself, some days I am a sow's ear! Seriously, congrats on the MSnet thing--I'll have to check that out. Wonderful piece, as usual!

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    1. Thank you Daphne, and thanks for your continued comments on WK. Much appreciated… And why do sow's ears get such a bad rap? I think they're kind of cute…

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  6. I am very happy if more people get to read what you write!!!

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    1. Well, as they say, the more the merrier. I think some MSers, especially those early in their diagnosis, find some of what I write to be kind of scary and dark, but I just try to tell it like it is. Not that it will necessarily be that way for all MS patients, or even for most MS patients, but it seems that those of us with more advanced disease tend to get shoved under the rug. It's great that some MSers do indeed climb mountains, but I only wish half as much attention were paid of those of us who can't even climb a step!

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  7. So happy that many recognize the value of your writings. I look forward to and enjoy them always, dear friend. Thank you for writing what is in our souls and heads for us. You are the best and well-appreciated.

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    1. Thanks so much. Glad that I can express what so many are feeling, but as I said before, I only wish that so many didn't have to experience such feelings.

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  8. I feel the despair of sinking at times, yet rarely do I ever see anything that shines brightly, as I watch my body worsen and of course with absolutely NO treatment or the remotest hope of any in sight. It is a knd of torture actually.

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    1. Yes, there's no denying that watching yourself get lost to the disease can indeed be torturous. Still, when I look back even two or three years I find myself wishing I had taken more advantage of the abilities I still had back then that I don't have now. Which reminds me to try to maximize whatever abilities I still have left. Don't forget, time is finite for everybody, and life is a terminal disease. We are experiencing a concentrated version of what even the most healthy person eventually has to go through, not that there's all that much solace in that thought. Bottom line is that, to some extent at least, we can choose our own reality, and can avoid a perpetual state of misery by consciously deciding minute to minute not to dwell in a state of despair. Easier said than done, I know, but if quality of life is to be maintained then the effort must be made.

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  9. Your descriptive and all too insightful wording is wonderfully uplifting, even as I pass through the earlier "using the electro mechanical monster inside my house, when it's been exclusively out-of-doors". I'll borrow them to pass off some understanding to my therapist of the joys I'm treading through without having to expose myself entirely. Thanks and keep up the fight.

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    1. For some reason using the wheelchair inside the house was a tremendous mental hurdle for me to get over. As with most of the mental hurdles MS has thrown my way, though, once the deed was done it wasn't nearly as traumatic as expected. The emotional horrors we imagine, thank heavens, rarely come to pass in reality.

      Would love to know what your therapist makes of my essay. I've had too many therapists to count over the course of my life, some great and some terrible, and I only hope my writing helps yours to "get it"…

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  10. "...Dragged under the sea of disability I seem to have managed to grow gills...." And for that you deserve a Nobel prize, though I am not sure if it would be for biology or for peace, at least inner peace.

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    1. Or at least I deserve an Oscar for special effects. These goddamned gills make me look like the Creature from the Black Lagoon.

      Is that too obscure a movie reference?

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  11. Marc,
    Good job! WELL deserved recognition.
    Tom

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  12. As a caregiver I truly appreciate your insights into what my nephew is going through. He is such a joy to be around although all of the adaptations he has had to make. I pray everyday for a breakthrough for relief for this devastating disease. I cannot imagine what it actually is like, but watching is also very heartbreaking. To all of you with MS, I will forever keep you in my prayers and for the caregivers, I will also pray for your strength. Please continue to write. Love.

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    1. Thank you for being such an empathetic caregiver. Those of us going through the disease process certainly have it rough, but in some ways I think, at times, our caregivers have it rougher. There isn't enough praise in the world for those who stick by the side of people going through this terrible disease. The spotlight shines almost exclusively on the patient, leaving the caregiver in the shadows, but I for one know that I'd be lost without kindness of my wife. So here's a toast to you and all of the others who give their love and support to those struggling with chronic illnesses!

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  13. QUERIDO AMIGO,
    QUISIERA COMPARTIR CONTIGO Y LOS LECTORES DE TU PÁGINA ESTA CANCIÓN DE RAFAEL AMOR QUE CANTA NUESTRA QUERIDA MERCEDES SOSA: CORAZÓN LIBRE.
    UN ABRAZO DEL ALMA.
    AQUÍ ESTÁ EL LINK:
    http://www.youtube.com/watch?v=vjV_ZGjyPXw

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    1. gracias por la maravillosa música , que es mensaje es válido en cualquier idioma .

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  14. Marc, about those gills...
    Your words have reached me over and over, taught me how (and sometimes why) to keep breathing when it didn't seem possible. There's not another blog on the web that marries so much comprehensive information, analysis and informed opinion with so much philosophy, psychology and humanity. Suffering can destroy, but it can also create.The excruciating irony is not lost on me, but I hope you have some idea of how, and how many, you continue to help.

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  15. Sorry for the long delay in responding to this extremely kind comment. It is quite humbling to know that my words have touched others traveling down similar roads to the one I've been forced to follow. It is a great comfort to know that we are not traveling alone, and this comfort runs both ways, from writer to reader and back again. Ultimately, of course, each individual experiences their own particular brand of MS hell , but sharing the load certainly does help reduce the burden. Thanks for your comment, for contributing to this blog, and for helping me as I try to respirate beneath the waves of MS.

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