Who am I?

 

When battling a chronic illness occupies the better part of a lifetime, it is tempting, though a trap, to use health issues as the focal point to focus the camera on your own life.  What do you do?  Oh, I have multiple sclerosis. But what do you do?  I have MS.  That’s a fulltime job, pal.  For the many who feel doctored to death, it sure does feel that way.  The idea that we are trading in a broader identity can be lost.  Pity.  We can lose sight of who we really are.

I am the husband of a beautiful, successful woman.  Our identities have merged, and we take from each other.  Our bodies, too, have come together, and we have given to the other.   Who are you?  A guy with MS.  Perhaps I am missing something here

Who am I? you ask.  Well, a father, I say.  I have three who are young adults.  The oldest works in Shanghai.   He works building nuclear power plants and is fluent in Mandarin.  His brother is a television reporter in Spokane, his sister studying in Prague now.  If you ask them who I am, they will say a New York Times best selling author or simply a pain in the ass.  I doubt the letters MS will cross their lips.

I, of course, do not lose sight of all I no longer can do.  Those limitations stare me down and wear me down.  I am less than I was and feel doctored to death.  People like me spend too many hours in ruts and no longer see ourselves for who we really are.

I am legally blind, having endured too many bouts of optic neuritis, which steals vision from many in broad daylight.  Also, I am blind in a more far reaching way.  No longer do I see myself for what I am.  I am a captive of loss and can only see what is missing.  What is intact and still there is around the bend, out of sight and sadly beyond memory.  Another connection broken.

7 Responses to Who am I?

  1. Nancy Cincotta November 30, 2013 at 2:38 pm #

    Very nice. I am a mother of two young adults.they keep me connected and are my big reason for trying to stay whole.

  2. Mimi December 13, 2013 at 8:02 pm #

    It’s been nine years since I have been diagnosed with M.S. and I still have a difficult time accepting the fact that being disabled is my reality. I no longer am able to walk and have lost function in my right arm and hand, but I still wake up and go to work everyday because my mind is strong even though my brain has rebelled against me.

    So your words, “I have M.S. That’s a full-time job, pal,” struck a nerve with me. I work full-time in a professional job and also work full-time as the manager of a chronic progressive illness. I’m a wife, and a mom of two young adults, and I spend an inordinate amount of time feeling guilty because I can’t do any of these roles justice.

    I should devote more time to work, but I’m tired. I should spend more time in physical therapy, but I’m too tired because I work. Moms’ Weekends at the universities my children attend? Nope. I really don’t want to be a burden. The list goes on.

    My limitations “stare me down and wear me down”, too. The trite saying,”I may have M.S. but M.S. doesn’t have me,” is just not true. It has me by the short hairs and won’t let me go.

    So I too ask myself, who am I? It’s hard to answer this question because I’m still grieving the loss of who I was.

    • Richard M. Cohen December 21, 2013 at 10:10 am #

      Always remember who you were. Most of you is still there.

      R.

  3. Marilyn December 13, 2013 at 8:33 pm #

    How did you handle your diagnosis? My son was diagnosed almost two years ago but doesn’t seem to realize what may happen physically. He suffered a severe head injury
    as well How can i help him?y

    • Richard M. Cohen December 21, 2013 at 10:08 am #

      Love him and show endless patience.

      R.

  4. Marilyn December 13, 2013 at 8:37 pm #

    I think the short term memory loss causes him to lose track of the frequency or severness of any pain he has. He doesn’t grasp the idea of what MS can do to him

  5. Mimi January 23, 2014 at 12:13 pm #

    Thanks for clarifying my job(s) description(s). I am a full time Curriculum Director, a full-time mom and wife, and a full time manager of this stinking chronic progressive illness that has robbed me of my ability to walk and write (thank goodness for assistive technology).

    And I wonder why I’m so tired!