Thursday, November 12, 2009

Thanks for Your Concern

Viktor Vasnetsov: A Knight at the Crossroads (...

Image via Wikipedia

Since my last post, I've received some heartfelt and deeply appreciated expressions of concern from several readers, both in the comments section of that post, and in private e-mails. I'm sorry it's taken me so long to respond, but I've had a bit of a hard time recovering from my recent cataract surgeries. Seems that my body just doesn't take to being poked and prodded these days, the result of my neurologic crap and some endocrine dysfunction that I'm lucky enough to have to deal with on top of it.

Anybody care to trade bodies with me? Please, no need to rush the stage, just line up single file, and take a number...

In my last post, I mentioned thinking about, and planning for, the "end game". I suppose that since such thoughts have been rattling around in my brain pan for a while now, I've forgotten how sensitive the subject can be. As a society, we tend to reflexively pull back from open discussions of death. It doesn’t make much sense, really, when you consider that our ultimate demise is the only thing that every single one of us can be sure of.

The recognition of the reality of my own mortality has gone a long way towards helping me deal with the day-to-day rigors of my disease. That may be counterintuitive, as it may seem that being aware that my incurable disease could very well progress to "unbearable" would fill me with unending dread. To be completely honest, sometimes it does. But more often, the concrete realization that my time is finite, and therefore incredibly precious, makes me determined to make the most of each day, while I am still able.

As I've said before, happiness is not a choice, but a million choices, made each and every day. I could certainly decide to curl up into a ball and not get out of bed, righteously bemoaning my fate, and no one could blame me. But that would be a waste of whatever quality time I have left, be it a single month or fifty years. Instead, I fight the impulse to implode, and mindfully make the decision to get up and make the most of it. That decision is matched by countless others in the course of a day, each one directed at avoiding misery and seeking some measure of contentment.

Today is the only today I'll ever have, and if I choose to spend it in misery, it's a wasted day. I'll never get it back. The same sentiment holds true for every living person, as long as they have not crossed into the "unbearable". Healthy or not, we are all on this earth for a finite number of days, making each of those days infinitely dear. As those days add up to weeks and months and years, the time left only becomes shorter, and thus time is a commodity that becomes more precious with each tick of the clock.

When healthy, it's easy to ignore this reality and nurture the illusion of immortality. Once given a serious diagnosis, though, that illusion crumbles, and it's up to each of us to decide what reality we will build out of those shattered illusions. I decided soon after the onset of my disease to stare this beast straight in the eyes, and every once in a while spit in its face. Some patients choose denial, and if that works for them, great. I felt the urgent need to strip this thing to its bare bones, and to see it for what it is. I have a chronic, progressive neurologic disease. Presently, there is no cure for this disease. I've gone through toxic therapies and unpleasant procedures in an attempt to stop its onslaught. I've put myself before some of the best doctors in the world. I will continue to fight this thing until I have no fight left in me.

The reality, though, is that left unchecked, eventually this son of a bitch will take me to a place that I could very well consider unbearable, and unbearable is a place that I simply will not dwell. I've had quite a ride, and though I'm not anxious to get off, if it becomes clear that the ride will soon end with my lying helpless in bed, unable to move, it will be time to leave the amusement park.

Don't worry, though, I'm not on the verge of heading for the exits, I'm just trying to deal with my disease with clarity and strength of mind. I'm not speaking out of depression, or even desperation, just from a cogent assessment of my situation and an accounting of my eventual options.

There is constant research being done attempting to conquer the disease, and new discoveries are made daily. Recently, my entire diagnosis has been called into question (now there's a teaser for a future post). I'm hopeful that I'll never approach that unpleasant fork in the road, but I'm determined to be prepared if I do.

Woody Allen once said, "More than any other time in history, mankind faces a crossroads. One path leads to despair and utter hopelessness. The other, to total extinction. Let us pray we have the wisdom to choose correctly". Though those words were meant to be sardonic, the chronic progressive patient understands the truth that they hold. The disease takes such sentiments from the realm of abstraction and places them squarely into the world of hard fact. That's neither a good or a bad thing. Like all things in life, it's really just a matter of perception.

Reblog this post [with Zemanta]


  1. Death and Taxes - two things we can all be sure of. Dear brother takes care of my taxes and having an incurable disease helps makes us aware there is an end. The ones who suggest vitamins and certain stuff will help stave off the end for anyone drive me crazy, but hey that's just me. Like SIL says (a cancer survivor but she said this before cancer) "who wants to live to a hundred?" The planning and awareness of possibilities that made you a success in your professional life are being used now by you in your personal. I see for DH and my kids, I do need to be aware and make plans, financial and personal. I will not be caught with my pants down so to speak (although due to their complexity with having only one hand, I seldom wear them during the day.) Mark, you have undiagnosed "Marc" Disease. Might be better than MS! Or worsem whon knows? In some way, the bell will toll for us all, some are just more aware. Jeez, a rose by any other name is still a rose. "There ain't no answer. There is no answer. There never has been an answer. THAT'S the answer." Gertrude Stein."

    All best thoughts to you Marc. MS or not, I like you.

  2. The people of Oregon understand what you are facing. Wish other states had laws that allow death with dignity when the time comes.
    Thanks for stating all this so eloquently.

  3. Hi Marc,
    I too have thought and planned my 'end game'was not nice to have to do but better to deal with than have it rule me.
    I hope it won't be for awhile yet treasure each day.
    Have a good day tomorrow.

  4. Hi Marc,
    This is Shah from MSWorld. I was wondering where you were until i read your posts. Hope the recovery is going well. not sure if you are following the Slavin thread but Todd and I are showing continued improvements. I miss your informative posts. Hope to see your posts on MSWorld soon,


  5. Marc... First, I hope with each passing day, you're feeling a bit better from the cataract surgery.

    Second, your post reminds me of something I read in a Dr. Laura book: "At these times you can curse the coming darkness or praise the available light."

    Anyway, I'm deeply moved and uplifted by your strength of mind, clarity and optimism. Lastly, I just want to thank you for being an inspiration and for reminding me in so many words, to live while I'm alive.

    Wishing you and Karen an extra helping of happiness at Thanksgiving. :)

  6. I can't think of anything wise or pithy or brilliant. So I will just remind you I love you my friend. And Karen too.

  7. It appears to be just one more thing adding to the mixture of who you are and what you choose to make of the next malady. I am asking permission to quote you. Aarcyn

  8. Marc,
    I only recently discovered you and your blog via braintalk where I enjoyed your eloquent and entertaining dismissals of some of the utterly annoying right wing lunatics who are one of the reasons that I am an infrequent visitor there.
    It is a joy to come accross a funny, liberal and recently, scarily honest American.
    In the past I have been guilty of mearly being a lurker but you have caused me to take part if only to say thank you.

  9. Hello Marc, I am sorry you had to have surgery. It really raises cain with your body. Hope you feel better soon.
    I have seen death from many perspectives. The US has many hangups and this blocks us from sensible choices. Your blog and others are a model for physicians and politicians to look for answers to how people with chronic illnesses really feel.When you have choices other than Morphine overdose (wink..wink) (stop breathing-that's no fun either), your choices can calm down your fear of what is coming and You have control which we all seek. Your poetic writing never fails to bring tears to my eyes and later a sense my feelings too were expressed in some way. Best wishes to you and yours. Mary Gerdt

  10. Thanks again to everybody for your comments and kindness. They are very appreciated, and very humbling.

    I've been late in responding to these comments due to the physical toll that my recent surgeries have taken, and the fact that I'm still struggling to stabilize my vision. I'd like to respond to each of you individually, but right now that's kind of impossible.

    I do read each and every comment, and take all that is said to heart. Thanks for reading, thanks for responding, and I'm gratified that there are those out who read my scribblings can take the time to stop and record their thoughts.


  11. Hi Marc:

    Just wanted to let you know, I think you are a very talented writer and this is one of the better blogs that I read. Few people can express their thoughts as clearly and vividly as you do. That was very well written. Thank you.