There are moments in my daily life when I get a feeling of anxiety and potential loss, wondering how I could possibly get by without my husband, who is also my caregiver. We are both now in our 70s, living with incurable conditions. Like all dealing with the aging process, we live knowing life will come to closure, and most likely, not at the same time.

Allowing myself to even think about this scenario creates a feeling of panic. As I live with Ehlers-Danlos syndrome, my husband has been taught how to do some manual techniques that help me have better quality days. Each morning, he is now able to reposition a subluxated hip, shoulders, sacrum, and upslips.  The beauty of starting a day with the body in a better position is magical for me. So, can you imagine what my life would be like to wake up alone, not receive his treatments, and know that the body will continue to sublux throughout the day without correction? Add on the deep loss and grief of missing the love and companionship of the person I have spent nearly 50 years with. It all just seems too overwhelming.

I have had to learn to accept this is the life I am expected to live, to not give up, and be open to searching for ways to improve the quality of life with my incurable condition. But, it has always been with the love and support of my husband by my side. I wonder frequently how anyone is able to cope with chronic conditions totally by themselves. My heart breaks for them having to dig deep to find their peace and happiness under these circumstances. It sure seems like a tall order and one that not everyone is able to take on and work with.

So, as I remain the lucky one that is able to receive this daily help living with my EDS, the best I can do is to remain grateful and celebrate my good fortune. When and what comes next in life is not in my control. All I can control is my attitude. May we all find the inner strength to learn how to cope when loss comes our way.

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 48 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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