Sunday, May 11, 2014

May 12th for M.E. Awareness

A call went out for blog posts about what Myalgic Encephalomyelitis means to us in honor of May 12th Awareness Day. It has been a particularly rough year and the prompt catches me feeling raw, dramatic and afraid, in a state of hoping to hope. 


I grew up in summers at my grandparents' magical home that has been in our family for over a century. It sits at a deep canyon's edge, where the river feeds a glacial lake. The house is an old cabin winterized by a mining engineer with little capacity for aesthetics or safety and decorated with a bohemian hodgepodge of mismatched heirlooms, World War II (and I) surplus, art and oriental rugs. Every wall is lined with makeshift bookshelves. English gardens nestled between tall pines slope toward the lake where my cousins and I swam every day. Between gardening, splitting wood for winter and Grandpa's maintenance projects, we kayaked, hiked, waterskied. Some mornings, very early, the lake would be glass-calm and when the sun rose, the surface reflected the mountains so perfectly that it was nearly impossible to tell where reality ended and reflection began. It was infinite. Sky and mountains and sky. Skiing on that soft, calm water, I am convinced, is the closest any human will ever feel to flying.  

This place is beautiful and breathtaking and for much of my life it was my heart. When I got sick, the grandparents who had always been my rock did not believe me. They nagged incessantly about why I wasn't doing normal things. They scolded me for being irresponsible, lazy and "making my parents old." My grandmother and I shared a doctor; she told the doctor that I was malingering. The doctor believed her. And I became unable to leave my parents' house. 

I haven't been back to the lake in nearly a decade. The grandparents are feeble now and, like me, the place has fallen into chaos and disrepair. This is what I am told, anyway. We will lose it soon. As Silicon Valley barons came looking for mountain hideaways, the land became too valuable and property taxes unaffordable. Part of me thinks that even if I could return I should leave my happy memories untainted. And part of me can't imagine the idea that I would never visit this place again.

Sometimes I picture myself as an old woman wheeled out by a younger generation to see the lake one last time; they've begged the new owners to do me a favor. Then I realize that there will be no younger generation. Aside from having no children, I have been too ill to bond with anyone else's. I am "Mom's weird sick friend," of whom they are slightly afraid. And I see my future stretching out before me... a chain of square, white bedrooms, uninterrupted by the comfort of a wild and free outdoors.  

But I can still smell the earthy air on a summer evening: aspen, alder and thimbleberry... and the scent of wet rocks as the river's water rushes over them. 


This post was written for the May 12th Blog Bomb, an effort to get as many peoples' stories out as possible on M.E. Awareness Day.

Use #May12BlogBomb on Twitter, Facebook, Google+, etc. to find participating blogs or visit this list of participating blogs

Thanks to Sally Burch at for organizing it!


  1. Wow ... thank you. Your grandparents' place sounds amazing, but my heart breaks for you and how you have been treated by those who should have tried to understand. xx I'm glad however that you've kept the memories so beautifully alive, and that you chose to share them. Stay strong.xx

    Thank you so much for helping raise awareness by participating in the #May12BlogBomb.
    Over 90 posts resulted, and links to the others can be found here:

    Perhaps we'll try this all again next year!

    1. Thanks Sally! I think we absolutely should do again next year. I'm slowly working my way through everyone's posts and there's so much we all have in common. It's a great way to find blogs we might not otherwise have found and to really unify our community.

  2. Emily, I know where you're coming from. I have a beloved summer camp in my past in the Shenandoah mountains that I expect I'll never see again. This really touched me and I shared it on my blog's fb page. Thanks for writing it down. -Jocelyn

    1. I'm so sorry you've also felt this loss, Jocelyn. I hear the Shenandoahs are beautiful. Thanks so much for the share. I've been hoping to break into this blogging thing, albeit very, very slowly....;)