Realizing and Reacting, Reconciling and Reaching

The Spiritual Side of MS is a brief blog that I invite you to read before reading this entry; it caught my attention today on Facebook. In the opening paragraphs, the author refers to people who say that MS, or Parkinson’s, or other chronic debilitating disease has brought an appreciation of life to them, a better sense of compassion, and of love.

I appreciate the author sharing this personal perspective ; I cannot say that mine is in alignment with his. It is very difficult for me to separate out the diagnosis from the other events that took place during that time period in my life.  It is challenging to look back through the lens of time and interpret those past perceptions from the different perspective of the present.

Just as our national expression of grief around the terrorist attacks of 9/11/2001 coincided with the coma that foretold my father’s impending death and my own personal grief and distraction during those days, the diagnosis of multiple sclerosis followed years of elder care in my life … and the decade leading up to that diagnosis was one filled with not only physical mysteries and cognitive gaps, but also confused and conflicting responsibilities and loyalties.

To teach is to learn  to partner and to parent, at many levels. To parent is to partner and to learn and teach as well. To partner is to learn to both lead and follow as circumstances warrant. Of this, I am certain. I became a partner when I was most alone in my life, in the middle of a large family without a clear purpose or an expected identity, and I love the man who taught me to be me. I became a parent twice in life, during different times of my life,with the same partner but with distinctly different children in distinctly different times, and I loved both of them equally and yet differently. I became a teacher the hard way, and I loved who I became; I could not be a teacher without first having been the partner and the parent that my life led me to be.

I would not call my thoughts here spiritual, but rather cognitive and reflective. Having spent years studying childhood development and assessing progression through milestones in such development, it was with recognition that I watched my parents experiencing  neurological conditions of Parkinson’s and Alzheimer’s  dementia, regressing back through those hard-won levels.  And it was with realization that I would  soon need to reconcile with my own beginning regression that seemed to begin as theirs came to an end.

MS has brought me physical changes: age might have brought some of them to me on its own, but in partnership with MS they seem to happen more swiftly.  I have no memory for people’s names or faces, other than those I have known for years or more recently have had frequent personal contact.  I have less sense of the passage of time now and little to no memory of recent events in a logical sequence. There are days when I awaken from a dream and wonder what season it is now, and what year it has become, and whether I am still a teacher and late for school.The changes in the structure of my brain include lesions, or scars left where myelin has been removed from my nerve axons, and ‘black holes’ have developed where lesions were once active. My sense of smell is near to nonexistent, and with it taste has diminished as well. I can rarely make a quick decision, even on the simplest level, such as what to eat, or whether I am hungry or not. I can feel very cold and shiver when my skin surface feels warm to others, and feel overheated when my skin  surface is cold to the touch. I can spend an entire 12 hour day without needing to go to the rest room at all, and the next day need to eliminate water almost every hour on the hour. I can walk three miles or more when called to do so for a fundraising event, and the next day feel like the earth’s surface is embedded with magnets holding me in place and preventing almost any horizontal movement. I can receive a painful injection and not feel the pain until a moment or two later, because my nerves carry messages erratically due to the damage done by the lesions.

My formal diagnosis of MS did not come until after my parents had passed away. I am grateful that I never had to explain MS to them, though had they known, more of who I was might have been understood. I spent an unremarkable childhood and early adolescence in the city, and finished high school and began college in a small town setting. I did not fulfill my expected family role as a high school graduate who went to work full time and helped support younger sisters and brother, but rather was allowed to break the female mold in my family by attending a two year college before working and earning.  My housekeeping skills were never to meet the expected standard as my energy was more often dedicated to athletics and academic study. and while this difference was tolerated, it was never respected by my mother or her friends. I was different, and did not know why I was different. My setting was radically different than what I had been raised to expect, and so those expectations were never realized … the differences between my career goals and my older sisters’ family-centered goals were never discussed. MS was developing as I struggled with unfamiliar expectations and unrealized recognition. But the label would not appear until much later.

Retired now, and having time to cognitively try to process and understand the results of those dramatic differences  causes a great deal of reflection and realization. I did, as the blogger aforementioned, realize my own capacity for compassion for others, but it was during the years of eldercare, not during my own diagnostic period. With sixteen years between our two only children, it was during our second passage of parenting in a different set of decades than our first passage that I recognized my capacity for compassion in different circumstances … and different societal norms for both parents and their children.   I have realized  retroactively that the differences between me and the others brought up by the same parents are differences of age, of setting, and of societal change. I have accepted that, had I been born two months earlier I would be a child of the forties and not of the fifties and would have been accepted as part of the older rather than the younger half of the family.  Had I remained in the city in my sister and brother-in-law’s care to finish the last two years of high school with the nuns I would never have met the public school guidance counselor who would advocate a different role than my two older sisters had fulfilled, and I might have experienced more acceptance than I did as the established mold-breaker in the family.

And I realize that, if those life changes had not occurred, I would have had a different future, and now present. I would not have found and married the love of my life; I would not have had the children and grandchildren that I have and love dearly; that I might not have lived locally  to take on the responsibility for my parents daily needs, and my in-laws need for a family. I may never have taught, nor owned my own quilt shop in retirement. I would still have been diagnosed with MS, and perhaps, in the absence of all that had built a recognition of my capacity for compassion, MS would have brought me to that realization. Family relationships would have been so very different for me. I would not be who I am. I would not be the different one.

And I am happy with who I am. I am loved and love those who love me. And I realize, with compassion what I can no longer be –  a teacher with a good memory and organizational skills and students who benefit from my work.  I realize with compassion what I will one day be, the lady in the chair with no memory, no talent and no skills to share, but a sense of having been loved, and loving. I know that I will still feel happiness as my parents felt happiness in the absence of the difficult memories and challenges.  The black holes of MS will see to that, if age does not first.


  1. Renee Jones

    With all the struggles you have had to experience before your diagnosis, you already realized the importance of living and appreciating each day.
    Since your MS diagnosis, you have had to make unplanned changes to your career but in my opinion, you are as successful in helping people and improving the quality of the lives of the people you share your life with as you were as a teacher. It is true that MS has taken a lot from you. It is also true that you have not let MS win. You are a survivor and my hero ❤

    Thank you for being you.

  2. Really a beautiful post. Thank you for sharing the more personal side of this journey. It’s good to hear the sense of peace you have found with it all. Not that I wouldn’t give up my diseases in a heartbeat, but I too have found peace in where I am at and with who I have become because of it. It’s a good place to be – and not without a tremendous amount of emotional work to get there! Thank you again for sharing!!

  3. Thank you Terry this is very touching, but we will all overcome this challenge!

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