Power of a Good Life

MS along with other illnesses is a big mind game. I have written that thought, uttered those sentiments countless times. Patients in wheelchairs, folks on walkers or hobbling along on canes might choose to differ. Allow me to deconstruct the thought; understanding you never should take me too literally.
Clearly, the war with our physical selves rages. There is no denying that. The physiological underpinnings of multiple sclerosis become all too well understood as we fight to remain on our feet. But standing tall and maintaining equilibrium are long-term objectives in the psychological wars we must survive.
For those of us who know progressive illness, we live with limited options for therapy. For some, that really means, no options at all. Cell therapy is a great experiment. We sit atop a restless horse, jumpy and ready for the race. The track is long. So expectations must be tempered.
I believe that leaves us to contemplate the battles fought “in that exotic place north of the neck,” if I may be brash enough to quote myself. We are in control of attitude and demeanor. No physiological force, no disease process that cannot be stopped controls us. “When we are no longer able to change a situation, we are challenged to change ourselves,” psychiatrist Viktor E. Frankkl wrote of his years in Nazi death camps.
“Everything can be taken… but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” An extreme analogy, perhaps. But the truth of those words applies to surviving the struggle with disease, its own brand of torture.
Maybe we can win, even as we are losing. We are not going to beat the disease. Pollyanna is a stranger to me. I do believe how we choose to comport ourselves as we relate to loved ones and an indifferent world speak loudly about who we are. There is a measure of satisfaction to be taken from living well, even when life is unkind to us.

31 Responses to Power of a Good Life

  1. dale March 20, 2015 at 6:33 pm #

    Outstanding. Just the ticket, Attitude is Everything. Love this Richard, not a spec of whine. It’s the first day of Spring, it’s snowing again, we woke up on the right side of the grass, life is good.
    Its Friday, perhaps a nice single malt scotch to enjoy today’s attitude adjustment thanks to another blog entry by “The Boss”.

    Cheers,
    Dale

    • Richard M. Cohen March 20, 2015 at 8:06 pm #

      I’ll be right over.

      R.

      • dale March 20, 2015 at 8:59 pm #

        No Zamboni Ice. Promise.

  2. MB March 20, 2015 at 7:24 pm #

    Frankl’s message was powerful but I don’t find his life in a concentration camp paralleling the life of a person with a disability.

    If Frankl would have emerged from his torturous existence unable to walk, see, and think clearly while at the same time being marginalized by a society who pities the disabled, then maybe I could relate to his message of attitude if it still existed. But instead, he lived for fifty years after being liberated from the concentration camp in the role of a husband, a father, a grandfather, and an award-winning author and lecturer. His unimaginable experience eventually ended, where those of us with chronic progressive debilitating illnesses continue to live within the prison of our own failing bodies with a slim chance of escape. He had hope. Me? Not so much.

    Believe me when I say that I don’t think I have it worse than a concentration camp survivor because that existence is the theme of nightmares. But I know that I would endure three years of a debilitating disability hell if I knew that I would emerge as a healthy able-bodied wiser woman.

    A good attitude is important and it makes those around me want to be around me. But they liked me when I had a bit of an edge, too. That same edge is perceived to be bitterness when you have a disability and no one wants to hang with a bitter bitch. 😉

    • Richard M. Cohen March 20, 2015 at 8:10 pm #

      Got it. As I wrote, an imperfect analogy. In the hierarchy of suffering, take your choice.

      R.

    • Louise March 21, 2015 at 1:36 am #

      I hear you, MB. And we’re back to hope and/or its lack!

    • Jan March 21, 2015 at 3:30 pm #

      Richard, a thoughtful and inspiring post—for sure you have at least one more good book in you.

      MB, creatives don’t just work while at the computer—we think, learn, interact all of the time, often from everyday experiences, news—your reply has been on my mind…

      Per Richard Miles, “If you can’t change your condition, then change your perception,” he said, “And that changed my whole life. I started looking up.” (At the birds, blue sky, and sun in this context, though “up” has more meaning, too). Many deal with a lot, though varied. See: http://goo.gl/yQvU2M

      Yes, easy to endure much with a known light at the end of the tunnel. I do not think you were out of line re your comment about Frankkl in that many of us would likely endure a short-term hellish cocoon if we know we’d emerge well. I’d be more interested in what Frankkl or Miles had to say when in the thick of it. And I’m glad they emerged. But I also know of sad endings: a friend’s 50-year-old husband dying of cancer, Sergei Grinkov (healthy, you’d think), Bob Simon, the movie, “Life is Beautiful:” http://goo.gl/DtQa

      I don’t know where the path of my MS story will ultimately lead, yet I’m not bitter. I choose a different perspective to live right now (kind of like the humor of Guido, the guy in the movie), with a future hope (of dealing with whatever may come my way, though I work toward a definite preference), and an eternal hope (that I believe in, yet don’t fully comprehend).

      Richard’s themes of perspective and grit encourage. But I ultimately have to make the choices. Not what happens to me necessarily, but what I choose to do and the attitude with which I go about it all.

  3. Joan Z March 21, 2015 at 10:11 am #

    Richard,

    Bravo, well stated! In 20+ years of living with MS, the only things I know for sure are that complaining never fixed anything, there’s always someone worse off than I am, and gratitude will always improve my mood and my day. Thanks for reminding me.

    • Richard M. Cohen March 21, 2015 at 7:38 pm #

      It os true.

      R.

  4. Hilary D March 21, 2015 at 12:26 pm #

    I might have 20 lesions on my brain but my life is great. No boo hoo me. Don’t tell me you’re sorry that I have MS. I take prayers but not “sorrys.” It could be worse. Yes, I am always in a world of pain. MS has made me stronger and smarter. I know better than ever how awesome a life God gave me. The bourbon helps too.

    • Richard M. Cohen March 21, 2015 at 7:39 pm #

      Long live the bourbon.

      R.

  5. Yvonne March 21, 2015 at 3:26 pm #

    That word “hope” again. Honestly right now I do not have hope that any disease altering therapy will come along for me much less a cure. We chase stem cell therapy in a society that still can’t agree or decide when life begins. 2015 and people aren’t comfortable with IVF or so called “test tube” fertilization outside the womb. Many of the things that can help us are hindered by the fusion of politics and religion. Maybe in the next quarter century or so things will change and hope will easier because there won’t be as many barriers. Not a bitter bitch but my hope window is very small. I just want to be able to adjust to these changes faster because change is inevitable and I am a sourpuss right now. It will pass…eventually. Iironically, I pointed out to my mother the other day the wonder of perspective. We saw a homeless man walking down the street picking up cans and loading them into the basket on his raggity bike. She remarked how sad that was and she felt sorry for him. I looked at her and said, as she hobbled on her can and I pushed the walker, “Do you think he looks at us and feels sorry for us as we can neither walk nor ride a bike on a beautiful day?” Perspective

    • Richard M. Cohen March 21, 2015 at 7:42 pm #

      Indeed.

      R.

  6. Rob M March 21, 2015 at 9:50 pm #

    Bravo and thanks for your post. I’m bookmarking it. When the limping, bladder issues, brain fog, fatigue and other MS-related maladies get me down, I’ll refer it. This post reflects our best instincts. I’ve had MS for almost 20 years. A few years ago based on some research, I radically changed my diet (no meat, no dairy) and committed myself to regular exercise and vitamin D in an attempt to stabilize my condition. I feel a lot better and my walking/endurance is better, but I still have symptoms. I try to approach my MS with humor and grace. It ain’t easy. I’ll keep trying, not only for myself but for my wife and kids, because as you elegantly stated “how we choose to comport ourselves as we relate to loved ones and an indifferent world speak loudly about who we are.”

    • Richard M. Cohen March 22, 2015 at 11:53 am #

      Easier forme to write than live. This is a challenge for all of us.

      R.

  7. dale March 21, 2015 at 9:53 pm #

    Heidi Sutter was a victim of domestic violence. She lived in her car for a year. Now she lives in a cabin in Alaska surrounded by dogs, made enough beaver mitts and fur muffs to send her daughter to Italy as an exchange student, teaches learning disabled kids and has the nicest outhouse in the county.

    She is about to complete the 1049 mile Iditarod for the first time. A number of other mushers have scratched. A lot of kids are following her hoping she finishes. She says she runs for those kids. But the more I exchange with her, I realize she runs for us all.

  8. Desinie March 22, 2015 at 12:51 am #

    Oh, perspective a word that comes to mind and is said aloud at least once daily to those around me. 15 and 1/2 years after my diagnosis and 23 years after my first exacerbation, it’s one of the two things I know for sure also. Perspective is everything and it could ALWAYS be worse. And if I wasn’t diagnosed with Multiple Sclerosis I wouldn’t have come across so many, inspiring, intelligent people who are the voices in my head helping me to keep pushing on my hardest days. Thanks for the platform to share our thoughts,Richard. I wish there was a like button not only so I could like most each and every one of your blog posts, but also the comments of many of my fellow MSer’s.

    • Richard M. Cohen March 22, 2015 at 11:55 am #

      We are a community.

      R.

  9. MB March 22, 2015 at 10:15 am #

    Perspective is one of those “gotcha” words because regardless of what woe or ailment a person voices, there’s always someone out there who has it worse. But on the flip side, there are many who have it better, too. When you compare yourself to someone who has it worse you most often express gratitude. If you compare yourself to someone who has it better, you’re viewed as being envious or greedy.

    Maybe I’m never going to be at peace with this illness and the toll it’s taken on my life because I don’t compare myself to Annette Funicello at the late stages of her life with this disease. I’d be more inclined to compare my current state to her teen idol beach party days because of her ability to walk on a beach. See what I mean? Gratitude vs. Envy.

    I have a good life, but it would be a hell of a lot better if I didn’t have this disease. I guess it could be a lot worse if I had this disease while living in a third world country. The reality though is that I have lived my life MS-free and it was great.The “worse than me” case scenarios don’t really do anything for me because they are “what-ifs.”

    I don’t like that I’m the chronically healthy person’s perspective check-gratitude inducer (“Whoa. things could be worse. I could be like MB.”) Just typing that makes me cringe.

    • Richard M. Cohen March 22, 2015 at 11:59 am #

      I spend very little time comparing myself to anyone. We live our own lives. Worse or better haveno meaning for me.

      R.

      • MB March 22, 2015 at 1:39 pm #

        That takes a lot of inner strength. The comparison I make now is between MB pre-MS and MB-MS which serves no purpose at all but to make me sad.

  10. Jan March 22, 2015 at 2:05 pm #

    MB, yes, a lot of inner strength at times. (That’s where, for me, God, family, and a few great friends come in).

    I agree with Richard and don’t compare myself (been there, done that = unproductive envy or pride). I really can’t know what someone else is thinking, but I can control what I’M thinking. And I do not think of myself as deficient. What I lack in movement I’ve gained in experience, empathy, and perspective. It’s a strength, not anything to be pitied. (It doesn’t come overnight, so be easy on yourself).

    Not saying that I’ve exactly made peace with MS: I just deal with it as best as I can and make peace with living my life as best as I can and under my terms.

    Sure, I’d rather have my old physical capabilities back: http://goo.gl/gMnNTT (why I know about Zamboni machines). It will forever be a part of me. But the thought has occurred to me that in years to come, I could look back and pine for today just as I could pine for yesterday right now. So I aim to appreciate “today” and not waste it.

    I aim to learn from the past, live in the present, and plan only as needed for the future.

    Also know that I don’t do that perfectly. I do miss much about my pre-MS me. But when I get sad, I choose to focus on what I CAN do, not what I can’t. I CAN “skate” in the swimming pool, even if that may look silly. (But wipe-outs don’t hurt!), I can sing (rather loudly) to fun music while on errands or alone at home, and I CAN still appreciate some kind of joy in each day (even with college kids who don’t love to listen to me). Perspective. Choices.

    • dale March 22, 2015 at 6:32 pm #

      Wow Jan, that is really neat. Skating was a great love. That and skiing, nothing like that kind of wind in your hair. But this is way beyond hat.

      My mind has mr skiing the best slalom races of my life in the MRI. It’s how I get through it.

      I have not made peace with MS unfortunately. Not yet at least. I think I finally understand Robin Williams and his unfortunate (certainly for us) decision to take his own life. The fear of progressive Parkinsons may have been too much to bear.

      I do count myself lucky as my college kids will still sing Bohemian Rhapsody loud and proud with me in the car. Sometimes even Cowboy Sweetheart. Just to experience the pitiful yodel at the end.

      • Jan March 22, 2015 at 11:03 pm #

        Yes, true Zamboni ice 🙂

        In my MRI days, for me it was similar to toward the end of “Raiders of the Lost Ark” — close your eyes, and you will live through it!

        Instead of fear, I work to trust and have hope. I can talk about MS; I just can’t “think” about it too deeply (so I don’t).

        And enjoy those sweet moments with your college kids. Know that you are important to them.

    • rmcjourneyman@gmail.com March 23, 2015 at 1:48 pm #

      You have learned not to make yourself crazy.

      R.

      • Jan March 24, 2015 at 7:52 am #

        Yes, Richard, I suppose I have (mostly). Also know that I share many similar thoughts as expressed on your blog–and it is then, especially, that faith, family, friends, and even a smile at the grocery store can help me on this rather daunting journey.

    • rmcjourneyman@gmail.com March 23, 2015 at 1:48 pm #

      You have learned not to make yourself crazy. Congrats.

      R.

      • Jan March 24, 2015 at 7:58 am #

        Oh, and (trying to rush this before the headline news comes on…) and a giving back in some way, a purpose–be it for my family, small amount of work, volunteer work. Trying to do for others works wonders for me.

  11. Jan March 22, 2015 at 11:29 pm #

    I just turned my computer back on because I know I won’t sleep if I don’t say this (and will because, Dale, your reply was in reply to mine).

    It truly seems to me that your Robin Williams comment was one of understanding and empathy (and many of us could relate, even with similar thoughts).

    But if there is anyone out there reading our thoughts here and seriously taking action along the lines of Robin Williams, please get help. Help is out there, and you are worth it and matter.

    • Ann March 23, 2015 at 3:14 pm #

      A couple of disclaimers: I do not have MS, I have recurrent, chronic ovarian cancer. No, I am not going to be following in Robin Williams footsteps.

      With that said, I do have some thoughts on this. I too totally understand why Robin did what he did, if it was that he feared facing a progressive illness.

      I am facing an illness with no cure. Every single day I have to wake up and face down the fact that ovarian cancer is one day going to kill me.

      The mental torture comes in not knowing when it will happen, or how. It doesn’t help when people say to me, ‘well, we are all going to die someday’. Even my own doctor has said that to me. Yes, everyone dies. But for everyone else with good health, it is off into the distance, and in the meantime, they can live a full happy life. The rest of us have to battle with these diseases each and every day, with the full knowledge that the disease is going to take us out in the end. I’m not a pessimist, just a realist.

      I think Robin chose to control his ending and not face the inevitable decline he was going to face. I am very sad that he killed himself, but I understand it. It takes nerves of steel to see a terminal illness through to the bitter end.

      • rmcjourneyman@gmail.com March 23, 2015 at 8:16 pm #

        You are right. And no one should d are to judge another. You are the master of your fate. Shame on anyone whlo judges.

        Best,

        R.