All in our Heads

We have sounded a group lament over shared physical limitations. That is a powerful and highly emotional subject to visit. And maybe we are not just visiting. Many of us seem to live there. We cannot let go of what was and is no more. Absent any context, I want to share the words of an old and wise friend. The thought was offered years ago in a simple declarative sentence at a time of loss.
“Who you are is in your head.”
Think about it. Our identities are an amalgam of our thoughts, beliefs and values. The ability to ride a bicycle, to jog on a path and climb two steps at a time only are side shows. We focus on life’s small successes and make more of them then than is warranted. I have not driven a car in many decades, in fact, only was able to drive for twelve years. It took twice the time to adjust to that particular limitation. Sometimes I believe that task never will be completed.
Is turning a steering wheel and pushing a pedal to the metal an accomplishment that matters? Do I envision a headstone that reads, He Drove a Car? Navigating the highways we travel on our long journeys strikes me as having more meaning. I, for one, have made a habit of mixing up what matters with what is symbolic and, at the same time, highly trivial. Maybe we think with our emotions too much.

36 Responses to All in our Heads

  1. Jan March 24, 2015 at 8:25 am #

    Very well put, I think. And I, for one, do think too often with my emotions and do better when I take a step back (in my mind).

  2. lindsey March 24, 2015 at 9:40 am #

    Thank you so much for sharing this. The idea that things we can no longer do or that we take as extreme losses really don’t define us. I continue to struggle with things I can not do as a 30 year old woman, but I try to keep telling myself to focus on the things I still can do and to cherish them. Thanks for giving me another perspective on this!

    • rm cohen March 24, 2015 at 1:15 pm #

      I think all of us need an occasional reality check.


  3. Dale March 24, 2015 at 12:06 pm #

    Retreating to my stories is a cathartic endeavor. I have a ton from living like an animal around the world for a few decades. But everyone has stories, and most get better in the retelling.

    Sometimes the bigger the disaster the better the story. Like weddings. The most memorable are the ones with the most stories.

    My stories have a Bill Bryson-esque quality to them. Like being interrogated by New Zealand customs as to why a parking meter was sequestered in a crate full of odd looking science gear. Or the layer of cans of evaporated milk under a gas chromatograph. Or the bizarre things the Danes routinely make schnapps out of.

    So yes, so much of our wellbeing really is in our mind. But everyone should write down their stories. Especially the ones that get better in the retelling. And look forward to collecting new ones. There’s something new every day.

    • Linda March 24, 2015 at 12:20 pm #

      Isn’t it nice that we’re living to tell our stories? Some day I will be remembered for my stories. Maybe somebody will laugh. I will.

    • rm cohen March 24, 2015 at 1:17 pm #

      I think you have some good ones., Keep telling them.


  4. Jeff March 24, 2015 at 4:09 pm #

    Interesting stuff. When you really think about it, we (as a society) tend to let others define things for us – success, beauty, happiness, the list goes on. Reality is what it is, it is our perception of this reality that is either bad or good. If we can redefine our perception, we can redefine our reality.

    Heavy stuff, and difficult to do, but it is important to remember what is truly important to us in order to keep that perspective where we want it. I know for me at least, dwelling on what I can no longer do has never made things better, but when I reflect on everything I am grateful for, I tend to be able to deal with things a little better.

    • Richard M. Cohen March 24, 2015 at 8:27 pm #

      Perception sp eaks lo uder than truth.


    • Jan March 27, 2015 at 9:10 pm #

      Jeff, I agree. I made the decision (though not often easy) to be grateful. It beats being stuck, and what good is that? Choices. Perspective. Defining who I really am, and what I truly have to offer to positively impact another along my (often difficult) path.

  5. Geof March 24, 2015 at 4:19 pm #

    We live in a material culture where we too easily identify ourselves by what we do and own. As MS strips us of our ability to do and our joys in owning, maybe what is left is how we should have defined ourselves all along.

    As I read your post and the responses which seem to dissociate our ability from the true us, I can not help but think of this quote from Einstein that takes it a bit further,

    “A human being is part of the whole called by us universe, a part limited in time and space. We experience ourselves, our thoughts and feelings as something separate from the rest. A kind of optical delusion of consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and to affection for a few persons nearest to us. Our task must be to free ourselves from the prison by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty. We shall require a substantially new manner of thinking if mankind is to survive.”

    • Richard M. Cohen March 24, 2015 at 8:29 pm #

      Great quote.


  6. David March 24, 2015 at 5:58 pm #

    I believe that turning a steering wheel has little importance indeed.There are so many things that are physical and meaningless in most ways but are still driving us crazy. Its what these things take from us that matters the most

    You don’t know what you have until its gone.We take so much for grated until its gone.

    In the world of disabled we have a keener appreciation for such trivial things. I guess we have a perspective that we never wanted.

    Every one of us has problems and all suffer in some ways,all of us.

    I hope my having MS has made me a kinder person and less judgmental.

    MS cannot take away our compassion, maybe give us more,there’s an advantage.

    • Richard M. Cohen March 24, 2015 at 8:30 pm #

      I am with you, though I see through it.


  7. MB March 24, 2015 at 6:14 pm #

    “We cannot let go of what was and is no more.”

    You made me cry because that’s me.

    • Dale March 24, 2015 at 9:35 pm #

      Awww hugs MB. With ya on that.

    • Richard M. Cohen March 25, 2015 at 8:46 am #

      You are not alone.

  8. Mike J March 24, 2015 at 6:31 pm #

    Was it Henry Ford who said “History is bunk”. The past is gone, there are no rewind buttons in life. I sure wish there were but we all have to play the cards we have been dealt.
    So until something better comes along, I’ll fold this hand. Let’s face it best case a cure will be there for our children. I’d take that.
    Be Well, until next time…..

    • Richard M. Cohen March 25, 2015 at 8:47 am #

      Agreed. I will do fine. Just spare my kids.


  9. Dale March 24, 2015 at 11:08 pm #

    OK so what are we looking forward to? Everyone needs to have something to look forward to. The anticipation is often the best part.

    Richard they are already registering boats for Figawi. There’s usually one for the Wounded warrior project and there is at least one handicapped boat, a guy from North Falmouth. First the Charity Ball then the race and weekend long cocktail party on Nantucket. This is seriously something you guys should think about. Even if just for the stories and the smell of island air before the tourists arrive.

    • Richard M. Cohen March 25, 2015 at 8:49 am #



  10. Louise March 25, 2015 at 12:21 pm #

    Hmm.. I hate to be a downer, but I read this, try to take the positive message… “Life exists above the neck…Who you are is in your head”. But then I think “but I have a disease of the brain” right?

    • Richard M. Cohen March 25, 2015 at 2:02 pm #

      Yes, but the battlefield mostly is south of the neck.


  11. michael March 25, 2015 at 7:03 pm #

    Our thoughts control our emotions. We can think ourselves into joy or depression. Feeling sad or happy does not just happen.

    Thank you Richard and all for sharing your thoughts and feelings. You are helping me begin to understand my wife’s journey. The more I know about the private battles you all face the better I will be as a partner.

    • Dale March 25, 2015 at 10:33 pm #

      Wow good for you Michael. It’s always hard to truly get what’s happening with something invisible like this. I’m pretty much going it alone and sense my husband’s resentment from time to time as I’m not doing some things as well as I used to. But cleanings vastly overrated anyway. Having love and support and hearing ‘Hey your doing great’ is a real gift.
      Even the cheerleaders need a cheerleader sometimes.

      • michael March 26, 2015 at 10:01 am #

        Thanks Dale, I’m pretty sure your husband is a bit lost. Hang in there, and communication is vitally important for both . It’s a long road but far better when traveled together:)

    • Richard M. Cohen March 26, 2015 at 7:21 am #

      Go for it. You will be glad you did.


    • Richard M. Cohen March 26, 2015 at 7:22 am #

      Good for you. You will be glad you did.


  12. yvonne March 25, 2015 at 10:52 pm #

    Michael-that’s the best thing I heard all day. That discussing our experience isn’t whining, or complaining, or just plain bitching. It helps outsiders of our disease understand our struggle. Thank you.

    • michael March 26, 2015 at 10:03 am #

      Thanks Yvonne, if I had MS I would probably be the king of complainers!

    • March 26, 2015 at 11:01 pm #

      I never think of you guys as whiners or bitchers. Now, me? That’s another story. Please keep contributing. Your voices are real.


  13. Dale March 27, 2015 at 10:35 am #

    When uncertain,
    When in doubt,
    Run in circles,
    Scream and shout.

    OK, well ‘run’ is relative.

    Yet to call the Waaaaambulance on you Richard. You need to work on your whining.

    • Yvonne March 27, 2015 at 2:05 pm #

      It’s raining my legs aren’t cooperating today because of the weather and I feel like crap. Also Why couldn’t the sesame seed leave the casino?
      A: Because he was on a roll.

      Always try to serve a little cheese with your whine. 🙂

    • March 28, 2015 at 10:27 am #

      I am trying. You need to hear my shrieking voice.


  14. L March 28, 2015 at 10:13 am #

    Good post. If only I had the command of language and thought assimilation you do…I could have communicated this point without offending.

    There is so little exchange of ideas to make our conditions/existence better. I would guess there is a wealth of helpful tips garnered over the hundreds of years of experience here. Maybe sharing those tidbits might help shift perceptions and quality of life for the better? I dunno. I’m a doer, a fixer. I always feel better when I’m working at a problem. Maybe that’s just me.

    Oh, and your bluebirds might be conditioned robots…mine have hope (and have learned to cram three whole almonds into their greedy little beaks). 😛 There’s that perception again.

  15. Dale March 28, 2015 at 10:24 am #

    I love snow. I hope it’s the rain that’s the problem today, I should keep track. Can’t tell if it’s that or the continual stress that seems to surround everyone lately.

    i never remember ‘stress’ being in our vocabulary growing up though.

    Thanks Michael, nice idea but my issues with MS aren’t on other folks priority list right now. But you keep it up.

  16. Lorraine May 12, 2015 at 5:04 am #

    You have shed a ray of suhsnine into the forum. Thanks!