Tuesday, November 3, 2009

Disability Mind Games

Difícil Decisión / Hard Decision

Image by juanignaciosl via Flickr

This last week has been kind of rough. The combination of the wear and tear from my trip down to Bethesda to visit the NIH and my first cataract surgery (the second is scheduled for this morning) have pretty much knocked me on my ass. My neurologic symptoms have ramped up, the avascular necrosis in my joints has become excruciating, and I'm just plain worn out.

While it's easy to catalog all of my physical discomforts, what's harder to convey are the constant mental gymnastics that those of us who deal with chronic disabling illnesses have to perform.

Receiving a diagnosis of multiple sclerosis (or any degenerative disease) carries with it an intense emotional burden. You're left to not only cope with the your present state of disability and the knowledge that you have an incurable, progressive disease, but also with the unpleasant realities of what very well could be an increasingly disabled future.

Immediately, a newly diagnosed patient is confronted with some mindbending choices. All of the approved MS therapies carry with them some serious side effects, and in the case of some of the most effective therapies, potentially deadly ones (fatal brain infections). Thus, the newly minted MS patient is hit with a double whammy. First told they have an incurable, potentially crippling disease, then asked to go ahead and pick their poison. What a choice to be given to a person whose world has recently been rocked to its core, huh? Choose a drug that has been shown to sometimes dramatically improve the quality of life of MS patients, but carries with it the threat of a horrible brain infection, or forgo it for less effective therapies, each of which also has its share of unpleasant side effects? The pharmaceutical companies paint a decidedly rosier picture of things, but it is what it is. Not exactly like picking chocolate or vanilla.

As the disease settles in, there are dozens of less momentous mental calculations that increasing disability forces upon you to just make it through the day. As disease progression slowly whittles away at strength and dexterity, what had been simple acts become exercises in difficulty and frustration. Lounging around in bed watching TV, and your feet get cold? Well, silly, just go put on some socks! Yeah, right. My right arm and leg are useless, and avascular necrosis has put a painful limit on my range of motion. Putting on socks, when possible at all, hurts like a bitch, and watching myself struggle to complete such a formally mindless act is gut wrenching. Many times, that mental hoop just seems too uninviting to jump through, and I decide to simply live with the cold feet.

The same mental calculus repeats itself over and over throughout the day. Surfing the Internet on my desktop computer, I might get thirsty, but the kitchen is now a long and painful stumble away, and getting into the wheelchair to travel the 30 or so feet to the fridge is a disheartening pain in the ass, so instead I go dry. Besides, if I did embark on the journey to the kitchen to fix myself a beverage, thanks to neurologic bladder dysfunction, I'd have to pee (quite urgently) in 10 minutes anyway, meaning yet another struggle to get up and drag myself to the bathroom.

When I was a kid, my mom used to make me laugh when she'd see me fidgeting and doing the little boy "pee pee dance" by jokingly singing, "Hasten, Jason, get the basin... Plop, plop, get the mop". Yes, mom is quite the cutup. Now I find myself silently reciting that little ditty as I struggle to get to the loo, only these days it's not so funny. Quite often, like the delight of warm feet, the pleasures of a glass of OJ just don't seem worth it.

These kinds of considerations grow exponentially when I'm thrust into social situations either at home or (gasp!) in the outside world. I'm a social person, and love time spent with family and close friends, but the physical and mental toll of such socializing is exhausting. Entertaining people at home is infinitely easier than venturing into the outside world, but still, sometimes I'm just not up to putting my disabilities on display. I can put up a brave front and slap on my happy face, but four or five hours of suppressing a grimace when my hips bark, or pretending not to struggle when trying to eat with only one hand, or attempting to unobtrusively stumble or wheelchair my way to the bathroom before disaster strikes, exacts a physical and emotional toll. A night spent with friends most often leaves me spending the next day simply recuperating. One can't be a hermit, though, and the benefits of spending time with those dear to you usually do outweigh the negatives. Nevertheless, I'm forced to put all of these variables into the equation, and ration my time accordingly. It's as if life can only be lived in small, easily digestible portions.

This leads us then to the ultimate mental calculus, that of the end game. It's never pleasant to think about, much less talk about, but as disability progresses the reality of your own mortality becomes crystal clear. Inevitably, you begin to ponder the imponderable: just when is enough, enough?

There are those who will suffer every indignity simply to remain breathing. I am not one of them. This is perhaps fodder for another post, so I'll keep it short in this one. Suffice it to say that no one here gets out alive, and for me it's all about quality, not quantity. I've no intention to spend much time as a fully conscious mind trapped in a prison of completely useless flesh and bone. This is the ultimate calculation, then, to decide just where to draw that line in the sand.

I've spoken to other patients in much the same boat, and we've all shared similar thoughts. Some have taken the actual steps necessary to facilitate their exit, laying in the necessary supplies. I've not yet reached that juncture, but I do have a clear picture of my point of no return. I fervently hope that I never get there, but simply going through this mental exercise has changed me in fundamental ways. This, perhaps, is the deepest and most intractable psychic wound progressive illness inflicts. I do believe that it's an insult that can never heal...

(Please bear with me while I recover from my second cataract surgery. I'm not sure how long my vision will keep me from the computer. I'm not expecting too long an absence, though. You'll not be rid of me that easily...)

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  1. I hope to see you back (when you're ready) with some great shots taken with your new camera! as seen with your cataract-free clearer vision. I also hope that the positive end result from these surgeries makes your pain much less oppressive.

  2. I've always been struck by your intelligence, kindness, bravery, and depth of soul. You don't know me, and I only know you from the internet, but I want you to know that you are one of the people I remember in my prayers. You are a great human being, and my heart is with you and your wife.

  3. Dittos Anonymous! Bless you, my dear Marc.


  4. Hey Marc,

    Very sorry to hear about these latest troubles. Let's talk soon...

    Love, Jon

  5. I think it is intelligence tro have an exit strategy planned while you know you can think it through, do it if physically handicapped, etc. It's not depression last minute decision, It's thought out. No, I am not suicidal or a Dr. Kovarkian follower, but if (and hopefully never needed), I know what I can do, how, etc.
    Now that that's over, I can can concentrate on the present without distraction. I am organized, a skill that has always served me well. Knowing when (as in most things) is the really hard part.

    Marc, I wish you were at least not being poked and prodded. I hope good comes from everything.


  6. Jeff and Joan just wanted to say hey, Marc...we continue to root for you and think you're one terrific photographer, writer, and articulate philosopher, as well. Healing thoughts for your eyesight, and a big hug to Karen-thank you for sharing your life with us.
    j and j

  7. You caught it, exactly. And matching how I feel today, caught between the hooks of "I wanna" and "it's not worth it!"
    Hope the surgery goes well. Love your blog.

  8. Marc,

    I am sorry to hear that your are in physical pain and so much mental anguish. It sucks to be a briliant mind trapped in a useless body. I hope you find what you need to get rid of your pain so you can go back to being you. I feel terrible for you and think of you often.

    Bestadmom Michelle

  9. Marc,
    So seldom in life do we get to hear words so honest and searing in their vulnerability. You have a gift for allowing a clear view into the exhausting minutiae we negotiate moment to moment as we meet our progressing disability. I am tired. You are tired. All those you love and are loved by have also to deal with these changes. I watch the people in my life grow weary of the helplessness they feel. They want us back! As you and Karen arrange yourselves around this latest adventure, I send you both my blessings for patience, strength and the courage it takes to get going once again. Who you are clearly has quite an effect out here in the world. You matter.

  10. marc- you hit several nails on the head. all the way from first diagnosis and getting one's head around the "this is as good as it's ever going to get," to contemplating the end-game. thank you for sharing your life so openly. best of luck with the surgery.

  11. This is one of the few places realities in the life of having MS can be read and expressed. Those in my life without MS do not want and really can not discuss what this life is like. I don't have to talk about it all the time (and really, I don't) but certain realities can not be glossed over and ignored. I need to acknowledge certain possibilities, like it or not. It's not gonna be "FINE". A little hope but some reality too.

  12. Marc:

    My husband struggles with PPMS too. Although not as advanced as others with this crummy disease, he now walks (if you can call it that) like a very old man. Our once active life has been seriously curtailed.

    That said, he is an unrelenting optimist who refuses to dwell on the negative. That means we don't discuss end of life issues. That doesn't mean that I don't think about it though. Even looking five years down the road is scary and lonely.

    It's hard for me to have hope about any of this, but when I look at my husband enjoying his music or a good film on television, I realize that life is probably best lived in the present.

  13. Marc,

    As others have said, almost everything you write is eloquent and right on target. This posting, however, goes beyond -- right to the heart of many targets. Although, I have no problems with my eyes at present, the rest of my physical limitations are much like your own. Lately, I have been asking myself, "What's the point? Is it worth it?" Right now, I guess it still is. However, like you, there is a certain point beyond which I would not want to go.

    For both os us, I hope that point never comes.

  14. Hi Marc, your post brought back memories of discussing/planning the "end game" with a dear friend who had AIDS. He eventually choose how and where he wanted to die and his parents and friends felt grateful that he had been able to do so. Thank-you for describing so eloquently the psychic toll this type of planning takes on a person.
    On a lighter note, whenever I hear this song the words I remember from someone's cutup of a Mom go "There's someone I'm longing to see, I know that he- Has to pee pee..."

  15. Just wanted to thank everybody for all the thoughtful comments and kind words. The last few weeks have been a little bit rough, have had trouble getting over the eye surgeries, and had some momentous news from the NIH (all of which I've posted about, so I won't go into details here).

    Your comments are thought-provoking and touching, and mean the world to Karen and me. Just know that you are all very appreciated...

  16. Thank you for writing this. When friends (or family members) don't understand the thousands of tiny calculations that go into negotiating the simplest events of a day, sometimes I feel like I'm going crazy. My feet are cold, but I can't go put on socks, because then my soles are too slippery to get around my apartment. Sitting at my computer, I am thirsty, but the idea of making it to the kitchen and then lurching back to the computer with my cane while holding a drink in my hand is exhausting just to contemplate. And forget going to the bathroom; that's even further away than the kitchen.

    So thank you for writing about this. It helps to hear from someone else who lives on this weird planet.

  17. It has seemed like no one understands and I don't even try to explain anymore. It was good to read this. I don't want to try to hang on much longer.

  18. Yes, we calculate every move, and most people really try to be empathetic, and our life is painfully different. The endgame subject comes up with me every time my MS attacks my brain, but I know it will pass. I know! Some kind of 48 hour rule. At the time, it seems stupid.

  19. Hay, me again. Just wanted you to know your my hero and I mention it a lot on my blog site. I always say to myself if Mr. Kamikaze can do it so can I damn it! I need someone to look up to, or down to if your in a wheel chair. I am hugging Secondary Progressive today. And it is so hard to get my mind around it all, as it relentlessly creeps upon me. My idea of a good time would be to meet you and your wife.