year 2006, Two years later, I was diagnosed with a condition called Ehlers-Danlos Syndrome, I wrote a poem (below) to establish some ground and normalcy in my life. It was a long, unacceptably long wait until I was told I had an incurable disease that would keep getting worse, a diagnosis, and a huge slap in the face. Writing is a form of therapy that helps me grieve, accept and figure out how to manage and live this new life.

Lost and found

lost
Clear mind
normal use of the body
Swim a few laps in the lake
sleep in any position i want
digging in the garden
trek through the woods
Satisfaction with yard work and housework
eat whatever you want
touch

set up
accept rather than blame
Incredible inner strength is given to tap
compassion and genuine friendship
Reasons for seeking and receiving help
growing family circle
A deeper relationship than imagined
Priceless Family Bonds
The beauty and gift of life
my rules have changed
I’m lost
But more importantly, I found
Have you checked the lost and found recently?
— Written on October 20, 2006

today, almost 17 years later, I stumbled across this poem and was amazed at how true it was. I did find that I struggled to not focus on the mounting losses and instead focus on the good in my life. I find strength in being alive each morning and be grateful that I am equipped to face the next day. The days are constantly rocking as I try to stay positive through the tough days, and I don’t always succeed. I am human and have to remember to take the time to grieve myself again.

But at 73, I realize how lucky I am to be alive, out of a wheelchair, and still at my own pace advocating for the American Pain Foundation, exercising in the pool, and walking near the beach. I still feel the joy of gardening, admiring the beauty of new plants and harvest season all around us. Family and friends are very important to me, they help give me direction and purpose. Despite losses that occur every day, there is good in life.

Somehow, I hope you too can find peace in your changed life. I know it’s not easy not being able to do everything I could do before, but you’re still here reading this. Your life will be more worthwhile if you can find hope and purpose. List those losses, and then start listing the good in your life. I hope that if you continue this process, you will realize that you have a reason to be here. We need to feel that life has purpose and meaning, and maybe you are sitting right in front of you celebrating despite your challenges.

May life be kind to you…