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Welcome to the March 101 Friends Newsletter

February 28, 2013

IMG_4062It’s been an incredibly busy and kind of intense month.  My mom, after years of incredible health and lots of gumption and independence, has been on a downward spiral for the last few months.  We went hiking in October; in November she had to move to a place with more care; in December she broke her hip and a long-time internal issue blew up on her a week later.  The only reason there’s a newsletter this month is because our self advocate friends reminded me!  Thanks!

There have been lots of lessons as I’ve spent time at the hospital and tried to support my sister, who is carrying the bulk of things, back in Alberta where my mom has ended up.  My mom has never asked for help for anything and even now, after nearly passing away half a dozen times, she’s not going to ask.  Argh.  So this means that the nurses go on to all of the other things that they are busy with…

We realized quite quickly that the hospital system was seeing her, as systems sometimes see our friends with disabilities or, indeed, any of us who find ourselves requiring support, in ways that are reductive and not really “true.”   They saw an elderly woman fading away after horrific illnesses, losing her grasp.  So we started to tell stories.   We know about the power of stories from our work.  We told them about how she raised four kids on her own, and learned to drive, and turned down some great jobs that would have meant she could spend less time with us, and took us on the kinds of adventures that she could afford – she would pack up all the laundry and all the kids and take us to a different laundromat every week, sometimes going into the United States.   She and my aunt split the cost of a small circus tent and took us camping every year.  We pinned up pictures of her baby-sitting her great-grandchildren and wrote under them “Four months ago!”   Every time a nurse or a Doctor stopped we would tell them a story.  Sometimes when we’d go back to the hospital a nurse we hadn’t met would come up and ask us about some part of the story, that someone else had told them.  Soon, people wanted to meet her and talk to her…  they would come in and sit with her, while she was semi-comatose, because they felt they knew her, a little…

I’ve been embarking on a new research project at the same time for a class I’m taking, looking at the literature and research around support networks, and a thing is clear in the research that has been clear in this situation too – it’s not enough to just be present, people must be known and their stories must be shared.   Our roles have to include actively negotiating not just being present in community but being known and heard.

And now she is talking again, a little, and we spent part of the week going through old photos of things that matter in the end – friends, family, adventures big and small.  Picnics, she said.  A lifetime of picnics and the hope that we will be able to go on more.



6 Comments leave one →
  1. Ellen Walker permalink
    February 28, 2013 11:26 pm

    Thank you so much Aaron – your story is very powerful….and I want to know your mom! What a beautiful time for you amidst the challenges you are facing. With love, Ellen


  2. Roberta Bower permalink
    March 1, 2013 7:01 am

    Wonderful post, Aaron. I thought about stories as I read yours… and time I spent with my dad in Canada last fall after he had a stroke, and the stories that came back to me as I walked through his apartment. Everything in it reminded me of stories – stories that are my life. What a gift to be able to spend time with your mother and share hers. After all, that is what life is – stories about how we touch one another.

  3. March 1, 2013 9:47 am

    Aaron, what a wonderful story about stories, the power of stories, and the importance of taking lots of photos of people doing the things they love with the people we love. I know so many people who have gaps of years in their lives that are forgotten, no one holding their stories, no pictures to remember. I’ve taken something here. And what a wonderful and blessed family you have… Thank you for sharing. ❤

  4. March 1, 2013 9:56 am

    Our stories are out legacy and it is so wonderful that you have shared your story with us Aaron. I really appreciated hearing it today.

  5. stefanie permalink
    March 1, 2013 12:26 pm

    Thank you for sharing this story!

  6. Agnes permalink
    May 29, 2013 7:40 am

    Your story is a great wake-up call Aaron. We also all know stories we think we should be recording somehow – stories that often need fill-in-the-blanks e.g. questions you should ask loved ones while they’re still around. We often neglect to do it until it’s too late. Thanks for the reminder.

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