scrabble tiles that spell out "hope"

By Ellen Lenox Smith

I have never felt the world around me so out of control. Along with this, I also face aging, two incurable conditions, and a husband recently facing a progressive and also incurable condition. So, do we crawl into a hole and give up or find creative ways to keep fighting? 

That hole sure looks tempting on those days that feel just out of control, but then those reasons to not give up creep into my fighting soul and keep encouraging me to take those steps forward. And then on a better day, I think about how giving up would affect so many in my life. 

So, what are some reasons I can’t give up?

  • I don’t want to set a poor example for our sons and their families. What would that be telling them if their own mother gave up as they, too, are trying to cope with our upside-down world
  • If I give up with my complicated condition called Ehlers-Danlos Syndrome (EDS), I couldn’t imagine the discouragement it would pass on to those also trying to cope with this. Being an older woman living with this has positioned me as being a person others have reached out to for suggestions, support and compassion. I  just couldn’t imagine the confusion this would cause so many. Do I want to give up these things I care about on my bad day?
  • I have tried to educate others about EDS in hopes that one can get diagnosed in a timely manner, unlike me waiting to find out what was wrong at the age of 54, despite being born with this! With correct diagnosis comes the journey of how to try to improve the quality of life. This mission and the responsibility on my shoulders helps me to hold onto purpose and meaning despite an out-of-control condition. 
  • If I give up, then those that have judged one like me will think they are right—that this condition has been in my head. Those of us with this diagnosis have had friends, family, and medical staff look at us and assume we are fine and just dramatic and seeking attention. Most have no idea how much we have to go through each day to make it a happy one despite living with pain.
  • If I give up, I would end my sharing and spread of correct information about the use of cannabis and CBD. So many have shied away from using cannabis due to a lack of understanding and the stigma society has put onto it for so many years. My battle to help correct these wrongs is not over and there is much work left to do. I have to fight for this option of pain relief that can’t kill you and is able to offer an amazing improvement on the quality of life when used correctly.
  • I am in awe of all those around me that have taken on severe losses yet have learned to live life with dignity, purpose, and meaning. From lost limbs, being confined to a wheelchair, living the rest of life with a colostomy bag, coping with the loss of sight and so on, there are such heroic people out there. If they can find the will to still find purpose and meaning in life, then we all need to draw from their courage.

We all have choices throughout our lives to decide how we want to take on the challenges we must face. We can choose to give up! But we need to remind ourselves of the reasons as to why this choice would possibly not be how we would want to be remembered in life. 

Life with chronic pain and the chaos around us is overwhelming. May you find the strength to step forward on those days of despair and find a light that will help guide you forward. And for those that have friends and family that did give up, please know there is no judgment on my part but just sadness that the next day with more hope didn’t make it their way. 

May life be kind to you.

 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.