I was fifty years old when I was diagnosed with MS. A bout of Transverse Myelitis landed me in the hospital and I found out I had probably had MS for years, as my spinal cord was riddled with old lesions.
But those previous years had seemed healthy. Irrationally, I truly believed that was because I had refused to ever be sick. As a single working mom, I had neither the time nor the patience for illness. I was crazy enough to believe I actually had control over it! So my children’s image of me was (and ironically, still is) that of a strong and indefatigable parent. There was never a day I wasn’t up before them and in bed after them. I never ‘rested’ or took naps. My type-A personality kept me driven and constantly on the move, always juggling a dozen tasks at once. This is just who I was to them. That was my normal.
I was big on educational trips, so we tramped through the streets of London, New York, Washington, Philadelphia and local towns and parks and museums, while I kept a running commentary on what we were seeing. (My penchant for turning every drive into a history lesson became a family joke as they got older.) Sometimes we would take a tour trolley or bus, but mostly we walked. I felt walking was the best way to absorb the atmosphere of a place, feel its energy and see its historic aspects close up. And besides, I loved to walk. The kids would often be grumbling behind me as to when we would reach our destination. “Just a few more blocks!” I would cheerfully reply, whether it was two more or ten.
Then I got sick. And everything changed.
By the time I was diagnosed, the children were all grown. They had experienced me as a healthy individual for their entire lives. But over the past six years I have acquired three beautiful grandchildren. I could still walk when my first grandson was born in 2006, but he doesn’t remember that. And my two newest little ones will only know me to be significantly disabled.
A friend and I were recently talking about the legacy we will leave our grandchildren. Not tangible things, but the essence of who we are, what we value and what we want to provide as a model for a way of living. I loved the stories my grandparents told me about their childhoods and youth at the beginning of the last century, stories that made them real to me as human beings, not merely my elderly Grandma and Grandpa. Knowing those details about their lives is a real gift now that they have passed away.
My friend told me about a series of letters her father had written to his grandchildren. They treasured these pieces of history and connections to him. That inspired me. I want my grandchildren to have a more three-dimensional image of me. While it is good for them to be accepting of my limitations and to be understanding about people with disabilities, I don’t want to just be the Grandma in the Wheelchair. So I decided to start writing to them, telling them stories of my life before MS.
I will tell them how I ran and played as a little girl, just like they do. How I took care of their mommy and daddies when they were little. How I ran their parents ragged through cities throughout the world. How we had fun as a family before we had to learn to have fun in different ways after I became more disabled. I will also share some of what it has been like to have MS, so hopefully they will keep up the fight.
I am keeping it simple. These aren’t Pulitzer Prize contenders. The kids might not even be interested for a while. But someday it will be nice for them to understand that I was a multi-faceted person. Hopefully it will help us stay connected as a family for years into the future, and be something that they can share with their own children. It will be part of my legacy to them, one that is a true reflection of the whole and complex person I am.
Learn more about how MS affects the whole family in the Fall 2012 issue of Momentum.