When I was growing up, excitement was in the air as a snowstorm approached.

The wooden slat sleds were retrieved and waxed, as we anticipated the opportunity to slide down those hills. Plans were made on the design of the snowman we would create in the front yard.

It was a moment of joy, waiting each winter to have these opportunities outside again. I never once had to think about what these activities would possibly do to my body, despite being born with Ehlers-Danlos syndrome (EDS). It was the only body I knew, and I had no idea for years that there was something strange going wrong.

I am grateful I had no idea at the time that I had a medical issue that would progress in the future, for I can look back on sledding, ice skating, biking, swimming, twirling, walking on the sand and so much more. Those activities have now all become massive challenges or have been lost for my future.

Today, when the meteorologists start talking about an upcoming storm, my emotions go in the wrong direction. I don’t mean to do it, but I start to remember all the challenges with mobility a storm brings into my life living with EDS.

I can no longer walk on uneven ground without paying the price of my feet subluxing. So activities like playing in the snow, or walking on the ground after it is shoveled and then develops uneven freezing patches of ice, create a problem with my feet.

Sledding sounds like such fun, but how do I manipulate the sled and get back up a hill without subluxing my body? I am one to push myself, but I also have a limit on how much extra pain I am willing to take on for that magical moment of feeling like my younger self again! 

So do me a favor and enjoy these storms for me, too. I at least get to hold on to my memories of having these experiences in the past, and I am grateful for that. I will always miss those activities, and at times I have to fight the emotions of feeling left out when I have to skip a family activity that will increase my pain.

However, I am also grateful to be alive and living my life. Instead of wallowing in my losses, I try to look around, recognize all those around me who face much more serious challenges, and enjoy what I can still do. So go enjoy those beautiful storms, and treasure what your body is allowing you to take on!

May life be kind to you… 

–by Ellen Lenox Smith

About the Author:

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for the U.S. Pain Foundation and is a member of its Board of Directors. She is also active with the EDS RI support group.

Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 50 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim coach.

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