In 2006, two years after being diagnosed with a condition I had actually been born with called Ehlers-Danlos Syndrome, I wrote a poem (below) to establish some grounding and normalcy in my life. It had been a long, unacceptable wait to finally receive the diagnosis followed by a huge slap in the face when learning I had an incurable condition that would continue to progress. Writing was a therapeutic way to help me grieve, accept, and figure out how to manage and live this new life.  

Lost and Found 

LOST
Clarity of mind
Normal use of the body
Swimming laps in the lake
Sleeping in any position I want
Digging in the garden
Long walks through the woods
Satisfaction with yard work and housework
Eating whatever I want
Touching

FOUND
Acceptance instead of blame
Unbelievable inner strength is given to tap
Friendship filled with compassion and sincerity
Justification to ask and receive help
A growing family circle
A deeper relationship than ever imagined
A family bond that is priceless
The beauty and gift of life
 My rules have changed
I’ve lost
But more importantly, I’ve found
Have you checked out the lost and found lately?
            —written 10/20/06 

Today, nearly 17 years later, I stumbled across the poem, surprised at how true so much of it still is. I do find that I have tried not to focus on the losses which have continued to grow, but instead on the good I have in life. I find strength each morning in being alive and am grateful I have the ability to take on the next day. Days waver constantly as I try to stay positive on the rougher days, and I do not always succeed. I am human and have to remember to take time to allow myself to grieve again. 

But to reach the age of 73, I realize how lucky I am to even be alive, presently out of the wheelchair, still advocating for the U.S. Pain Foundation at my own pace, working out in the pool, and walking near the beach. I still feel the joy of gardening and appreciating the new growth around us and the beauty of harvest season. And family and friends are dear to me and help to give me direction and purpose. There is good in life despite the losses that occur daily. 

Somehow, I hope you, too, will find peace with the changed life you are expected to live. I know it isn’t easy not to be able to do all those things you could before, but you also are still here reading this. If you can find hope and purpose, life will be more worthy for you. List those losses and then start listing the good in your life. I hope if you take this process on, you will realize you have reasons to be here. We need to feel purpose and meaning in life and maybe yours is sitting right in front of you to celebrate despite the challenges you have been given.

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.