A Learning Curve

I just framed multiple sclerosis with a label that should seem self-evident, if not obvious. I wrote that MS is a marathon, not a sprint. Duh. But I am sitting here thinking about my flare-ups through the years. My first bout of optic neuritis, when I lost all vision in one eye, came almost exactly 42 years ago. Losing vision has been a defining dimension of the disease for me.

Much has followed. You know the drill. The passage of time is stunning and what many of us have endured, quite sobering. This is worth thinking about, not in terms of earning martyr merit badges but to understand what we have learned about the need for resilience and patience. My skills for the former are more polished than my history of projecting patience.

It should not be seen as self-serving to say we have become strong, even if we did not start out that way. Many people living with a multitude of threatening illnesses must realize all of us are much stronger than we imagined we could be. I think sometimes we surprise ourselves. Not much about my health scares me anymore. Been there, done that.

The downside of enduring so much is how much it has to sadden anybody. So many have lost so much, and there is no way to gloss over that reality. I am fully aware of how important my family is, not for the practical everyday assistance they offer but for the comfort of the unqualified love they offer.

I am lucky. I cannot speak for anyone else. So far, I am OK, though I frequently wake up wondering if today will be the day. Flares seem to come in the night. We have been condemned to a life of uncertainty, knowing that progressive diseases progress, and there is more to come. So what have we learned?

I have elevated my tolerance for living with ambiguity. I have learned what is most important to me. I do not to sweat the small stuff. And on and on. I am reminded of a wonderful quote from Aeschylus.  “He who learns must suffer. And even in our sleep pain that cannot forget falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God.”

We are not alone.





14 Responses to A Learning Curve

  1. Christopher October 10, 2015 at 7:58 pm #

    No, we are not alone.

    “Adversity has the effect of eliciting talents, which in prosperous circumstances would have lain dormant.” -Horace

  2. Christopher October 10, 2015 at 9:24 pm #

    When you are weak, find shelter and actively seek assistance. That is freedom from fear and inertia. Don’t worry about reciprocity… that will come in time when appropriate.

    When you are strong, learn to practice gratitude, humility and delegation. That is wisdom.

    • Richard M. Cohen October 11, 2015 at 6:18 am #

      I fear inertia most. That is the easy way out. “Not to decide is to decide.” Harvey Cox.


    • Sue in TX October 11, 2015 at 4:12 pm #

      I think it was an eventual acceptance or submission to the effect of MS on my body and mind that led to a quiet humbleness. I am more at peace if I accept my deficits, as well as my strengths. Even if others do not see or recognize these traits. I believe This is True humility. And I think gratitude naturally builds from ones humility. I am thankful for those who help and guide me and those who need me.

  3. Jan1 October 10, 2015 at 9:39 pm #

    Thank you.

  4. Yvonne October 10, 2015 at 9:55 pm #

    I am so over being perceived as strong. I am weaker every day but no one sees because I must not let them know for fear people will watch for every slip and perceive it to be MS related-a memory lapse, a stumble, exhausted will elicit”the look”. Poor Yvonne. Hell, sometimes I forget stuff, am tired and am clumsy and it has nothing to do with my disease. If people knew I wasn’t as strong as they thought they would look at me differently and I don’t want that from friends and family. I get it from strangers when I struggle publicly but I don’t know them so I don’t care. How strange we progressive incurable disease having humans are. Dare I say we are cloaked and exposed by our disease in so many ways.

  5. Jan1 October 11, 2015 at 7:07 am #

    By that “thank you,” I meant that I personally appreciated all of the thoughts.

    Resilience, yes; patience—harder. Sadness, pain (a daunting lot of it), wisdom, family comfort yes—but also “the look” that stings does come more from those closest, and it can be frustrating. Only I can truly define my stress, needs.

    And Yvonne, I think it’s okay for others to not remember something because of age or whatever normal occurrence, but hearing “MS” is like a thorn amidst just trying to smell whatever flowers exist in my life.

    • Richard M. Cohen October 11, 2015 at 2:05 pm #

      A lot of forgetting is attruted to MS. I forget how much, but the disease can become a convenient target for blame.


  6. Jan1 October 11, 2015 at 3:13 pm #

    Yes, true. And while MS itself can be a target, it’s just hard for me to not take it personally, housed in my body and affecting other as it does.

  7. Sue in TX October 11, 2015 at 4:23 pm #

    Yes Jan, I too take MS personally. I feel a real sense of betrayal by my body. How could it hurt me, attack itself? Was I not good enough to my body? Certainly Normal aging is an easier foe than MS, but how can one really know which one lost my keys, forgot a name, or can’t find a word?

    • Yvonne October 11, 2015 at 5:24 pm #

      So true Sue. And we don’t want to be like our Dr. and blame it all on MS!!!

  8. Jan1 October 11, 2015 at 10:50 pm #

    Others, often well-meaning others, can’t truly know what it’s like and often understandably don’t notice many things because I work so hard to hide much (though lately the cane is more than a subtle hint).

    Today, a very nice woman at the grocery commented about the scooter I took, saying that she had to use one when she broke her leg. When she asked, I said that my issue is permanent. I can still see her surprised look. (She was very pleasant, so I was willingly chatty).

    Do people enduring other maladies kind of torture themselves as much as we do emotionally with MS? I deal with world’s view (jobs, etc.), my own fears, frustration of being pushed onto quicksand with an inability to walk out of it, and searching for a definition of “hope” that I can, or rather want, to grasp.

    At church today (different context here; and I’m not preaching to anyone), the pastor spoke of being transformed, of growing, within our playing field’s boundaries. With my health boundaries more narrow than others’, maybe I’ve been crashing into the boards when trying to skate larger when I should instead cool it and seek purpose right where I am, hard as that can be. Hmm.

    Makes me think more in-depth about how I define “hope.” MS and pain are tragedies, indeed. But for me, God’s grace is pure good. (I just may not always get a whole understanding of it, especially if not on my terms. But that’s okay).

  9. Kat October 14, 2015 at 7:30 pm #

    Since we seem to be doing quotes. I like this one. “Believe in yourself and all that you are and know that something inside you is greater than any obstacle.” I’m sick and tired of relearning how to function after the function has been taken away.

  10. Nan October 15, 2015 at 10:30 pm #

    Dr.Sadiq’s stem cell trial just profiled on local New York Fox station. They interviewed a young woman who was unable to walk without a cane until stem cells. Now she can periodically walk without it and generally feels better.