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Sunday, November 30, 2014

A Stolen Memory: Parents With MS

How will my children remember me?

Isn't that a question every parent asks themselves? We want to set the best example for our kids, leaving a legacy behind when we are gone. Often, this is one of the main reasons people choose to become parents in the first place.


One of the first fears in the minds of parents who are diagnosed with MS is: "How will this disease affect my ability to parent?" Followed soon by "how will my young children remember me when I was healthy?" MS often strikes in the prime of adulthood, when most people are finally successful in a career, finally married, or starting new families. This is the cruelest aspect of the illness, the theft of young optimism.

We want our children to recall these years of health and vitality, energy and strength. We want them to remember vacations, playing ball, swimming, and dancing with us. We want them to remember us as young, beautiful adults who never failed them. MS interferes with that image, and creates an image of illness, inability, dependence, and weakness. Struggle and sadness replace the happiness and health, failure and decline replace the image of success and achievement. 


My grandmother had 7 children during her life, and the oldest children recall her vividly as an energetic, beautiful woman with strength, endurance and a zest for life. The younger children, who were born when the decline had set in, may not have the same image in their memories. This is the true tragedy of MS, the highway robbery of our children's recollections of their parents.
My grandmother in her younger days

The responsibility of passing on memories is left to the healthy spouse, friends, and other relatives. Photographs became an essential part of life for my grandfather, and he spent many days documenting the important life events for future generations. My grandfather was also a writer, and he spent months writing a 300 page manuscript detailing the life they shared before MS. These photographs and written memories are priceless for my grandmother's children and grandchildren, those of us who never knew her when she was well. I imagine my grandmother would never want us to remember her only when she was ill. She was an amazing woman, a veteran of WWII, a world traveler. She was so much more than MS.


My grandmother, horseback riding, long before MS
Those who have not experienced MS greatly underestimate the social impact of the illness. The physical symptoms (which can be absolutely devastating) are only one portion of the true impact. The stolen identities, the lost vitality, and the lost memories of parents and grandparents are incredibly painful. My own experience with MS has shown me that this illness is like a slow torment, taking tiny, sometimes imperceptible pieces of me away as the days roll on. Each day brings a new loss, and with recent cognitive and memory changes, I wonder if I am slowly becoming a different person altogether. Will anyone remember me as I used to be? I will depend on my husband to recall.....


Photographs are amazing things. We take pictures to document our life experiences and remember particular, specific moments we would otherwise forget. Photos are a powerful way to create and establish memories, never to be forgotten. My grandfather's hundreds of photographs lived in a dark closet for many years after he passed away, and I was determined to take them out, scan them, and share them. These are virtual memories of time standing still, recollections of the way things were on one second of one minute of one day, many years ago. Priceless, lost moments we cannot retrieve.

My grandparents, mother, aunts and uncles, 1950s

I would advise every MS patient to begin a life documentation after diagnosis. If you enjoy art, draw your memories. If you enjoy taking photographs, document every moment. If you are a writer, write your heart out until you have purged every thought and emotion onto paper. These are the memories your children, family, and friends will be able to see forever. These will live on forever, no matter what life brings, for generations to come.

It is absolutely essential to me that my children remember these happy moments. The laughter, the smiles, the joy and the love. These are the moments that need to be remembered. These moments are the reason we are alive. Don't ever allow them to die.

Lake Tahoe, 2011
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Las Vegas, 2010

Masters graduation, 2012

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