Monday, August 27, 2012

A Family Legacy

Marie Cooper
Writer, MS Renegade

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
 


14 comments:

  1. This is beautiful. My mom passed away after a long fight with MS, and I recently started writing letters to my (future) children about her. I want them to know all the amazing things that she did. I think this is such a great idea. Thanks for sharing your story!

    ReplyDelete
    Replies
    1. Karyn, my mother also recently passed away. She had been battling MS since before I was born and the last two years of her life were a constant struggle. It still doesn't seem real, even though I know it is. Anyway, I like your idea. This might be a good way to help keep her memory alive.

      Delete
  2. One of the recurring issues for me has been losing the ability to speak. In mid-sentence my voice can just check-out. Sometimes there is warning, for a day or two my throat might feel a bit tight, the sound not quite as dynamic as it usually is when I'm jabbering about any thing at all. But then the jam-up occurs and I'm done until time (sometimes just an overnight) or steroids does the job.

    One time this happened and my grandson, just five years old and accustomed to hearing me say "I love you" and "Don't do THAT" and "Let me see you ride that bike again," didn't understand when he asked me a question and I could only shrug. His mother explained that I was having a spell, and assured him it would pass. His response?

    "Say something."
    I shrug.
    "You're lying."

    I think my heart would broke into a million pieces.

    ReplyDelete
  3. It saddens me to see so much suffering. However, no-one is interested in my story.. ie good news.. I have tried the UK MS Societies and been met with disinterest in how I conquered MS simply without drugs. It seems that the MS organisations are all about propagating profits for the drug industry and keeping the MS support organisations in business. I can tell you how my frontal lobe lesions completely disappeared and my symptoms with them, enabling me to resume a normal life with no relapses for almost 7 years now. And now how a few others, who are are doing what I do, are successfuly following my lead.

    ReplyDelete
    Replies
    1. Please tell me how you did it. I am not taking any drugs for my MS. Can you send me a private message on facebook? June McCants Williams.

      Delete
    2. I am also interested in how you are conquering MS, my husband has just been diagnosed with it this week and we refuse to let it take over our lives, we have just set foot back in to life again after numerous ilnesses and a major back injury in which robbed us of 10 years, we are willing to try anything to stop this in its tracks, if it can be done , or at least delay it form becoming debilitating for as long as possible.
      Would you be interested in helping us out?
      email - dogmatic525_9@msn.com
      facebook - kirsty mackenzie

      Delete
    3. Well, I'm sure interested. Has it anything to do with a wholefood, plant based diet??

      Delete
    4. Highland Lassie, if you are truly conquering MS without drugs, why aren't you posting the information here on this website for all of us with MS to see? Why the mystery? Be forthcoming with what you know. I tend to be skeptical when something just sounds too good to be true. Are you trying to bilk unfortunate MS patients out of their money, which in many cases is only a disability check?

      Delete
  4. My mom was also diagnosed at 50. She passed away a couple of years ago at 69. The grandchildren were a struggle for her. She couldn't be the grandmother that she wanted to be, getting down on the floor and playing with the kids. I love the idea of the letters. None of my kids remember her completely healthy and the two youngest only remember her in a wheelchair. One of my favorite picture of her is her sitting in our sun room in her wheelchair. The girls were about 7 or 8 and had draped a blanket around her, and were playing hairdresser. They all had a great time.

    ReplyDelete
  5. My mom was also diagnosed at 50. She passed away a couple of years ago at 69. The grandchildren were a struggle for her. She couldn't be the grandmother that she wanted to be, getting down on the floor and playing with the kids. I love the idea of the letters. None of my kids remember her completely healthy and the two youngest only remember her in a wheelchair. One of my favorite picture of her is her sitting in our sun room in her wheelchair. The girls were about 7 or 8 and had draped a blanket around her, and were playing hairdresser. They all had a great time.

    ReplyDelete
  6. Marie, thank you for the inspiration. I was diagnosed at 53, 11 years ago. This past year has been the most physically debilitating for me as I have moved into a progression of walking difficulties. I have started talking to my granddaughters (9. 10 & 11) about my MS and how it is effecting me and what it will possibly be like in the future...Fortunately, I have had the luxury of being able to run, play, and roll on the floor with them when they were infants and toddlers, but as things are changing it is important to me that they understand why I am no longer able to participate without limits any more. Last month they all witnessed a fall I took while we were walking on a visit to State College, PA...it was very scary for them...it was then I decided it was time to start talking to them about MS...and it was the reason I decided it was time for a cane. Thanks again for sharing your story.

    ReplyDelete
  7. Marie,
    Thank you for the letter idea. My grandkids mostly know me as being limited in activities that need a lot of nrg and being on my feet. I try to compensate with other activities. I'm lucky enough to still be able to do other things with them like get down and do puzzles on the floor, prepare popcorn together, bake together, draw together, teach them things through playing, read their favorite stories to them. They're great about "helping" me when we have walking to do, washing a few dishes, helping with kitchen stuff. They're the best when their parents (our daughters and their mates) aren't around. I will, though, start writing a journal that they can read when they want and/or when they're really ready to understand. We can all be great grandparents despite MS, no matter what our limitations. Thanks again, Maris

    ReplyDelete
  8. So beautifully written...had my husband read it, and my son and his wife. Thank you!

    ReplyDelete
  9. Thank you everyone for all your kind words and generous compliments. I am actually having fun writing this little 'memoir' for my grandchildren, just doing a few sentences a day so it is not a chore. I hope this idea has inspired you! Your family will be so grateful to have your remembrances.

    ReplyDelete