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!

Thursday, May 1, 2014

Hiking Boots

We like to say that life is uncertain. But the moments when we tangibly know that we have absolutely no idea what will occur next are rare.  And in these moments, I wore hiking boots. Not soft, light day-hikers. Hard leather, with a steel shank in the footbed, a sole that wraps over the toe and parachute cord laces. 

I bought these boots and a three-season down sleeping bag with my high school graduation money in 1999.  In my 18-year-old mind this was an investment in the foundation of an adult life. I'd always have a place to sleep and dry feet to get me there. 

They made me feel grounded and strong and ready. Rain, wind, snow, heat, sand, rocks, cobble stones, mud, trail, sneaking though woods in the dark, standing for hours on end, running, climbing, schlepping, building. I never stubbed my toes. Lacing them up was my ritual of embracing the unpredictable, loving the idea that anything could happen. 

I was wearing them when a road trip ended in a dubious San Francisco apartment with blood on the walls and no bathroom door.

They were on my feet when I boarded a plane to South American alone, having no idea where my host family lived or who (if someone) would collect me from the airport when I arrived at an hour when, by all accounts, gringas should be tucked safely indoors.

I didn't have as many adventures as I thought I would. I fell into school and work but my boots fell with me. I can still feel the tread's vibration against the college's anti-slip stone-in-concrete paths as I walked in fine, misty Oregonian rain. Smell of soaked brick and foliage.  I feel the clunky movements I made waiting tables on the bistro's kill-your-back painted concrete slab floor. And then the illness came...

My boots are dusty now. My feet do not have the strength to lift them. The uncertainty is now always palpable, pressing like humid air. And yet... it is the uncertainty of confinement rather than that of freedom. There are no shoes for this. My challenges are not kind a person can walk/run/climb away from. Supposing a person could do these activities, they would simply carry the problem with them.

I don't know if I save these boots as a trophy or a memory or an embodiment of a hope that I will one day, again, live a life of problems solved by actions of rugged footwear.