By Ellen Lenox Smith
Each one of us has challenges we must learn to cope with throughout our lives. But no matter what we have to face, having each other to turn to for support, sharing, and love in our moments of defeat and success is vital to our capacity to cope with these challenges. Trying to take on life alone—along with not searching for peace and purpose despite the challenges—can become too overwhelming and for some, a reason to lose hope.
My biggest experience of darkness came as I suffered from an undiagnosed condition without answers for endless years. This condition was finally given a name about sixteen years ago, at the age of 54—Ehlers-Danlos syndrome (EDS). It was finally discovered that my condition, invisible to others, actually was real despite all the skeptics. I was born with it, yet no one was able to figure it out sooner. And then a year later, a second diagnosis was added on top of it.
I had spent years living with pain, losing the ability to walk for four years, managing breathing issues, and even having catatonic episodes. I had to wait for answers, but when they finally came, they weren’t the ones I had hoped for.
So, in hopes of beginning the quest for a life of better quality, I chose to apply for a service dog. This decision brought a miraculous change into my life that lasted for 12 ½ years—I was matched with a NEADS service dog named Maggie who was my lifeline, companion, and helper in so many ways. Most importantly, she is the reason I am still here. Six days after coming home from my training with her, I had stopped breathing and she, without being taught this, jumped onto the hospital bed and repositioned me until my breathing returned.
I lost her in September during the pandemic and have had to learn how to live life without her help as I await my next match.
So, I had to move on to learning to live life permanently with chronic pain with two presently incurable conditions that have required 26 surgeries. Each day requires a calculation to keep safe and attempt to minimize pain levels, often leaving one on edge and, unfortunately, sometimes waiting for the next shoe to drop since there will be no end to the chaos brought into life by my medical conditions.
Coping with my dark issues, I continue to find those moments in my life that help to shut down negative thinking—like when I kick in the pool and my mind shuts off or when I try meditating each morning and run through what I am grateful for. It does not come for free to focus on the positive while working to attempt to eliminate the negative. We all need to work hard to quiet our minds so we can believe there are better moments ahead. I always remind myself that tomorrow will be a new day and has a chance of being better than the one that I am struggling with.
We have to allow ourselves a chance to mourn our losses when they first hit our lives, but we also then have to eventually pick ourselves up and remind ourselves that this is our life—the only one we get to live.
So, one has to figure out how to regain purpose and meaning. For me, that process began by writing over 100 poems to express my horror, sadness, and confusion over my diagnosis. About a year later, I began to learn to accept this was the life I was to live now and it was up to me to figure out what I could do to regain purpose and meaning. I wanted to have my husband, children, grandchildren, and friends look back at me as one that didn’t cave in but instead chose to accept and move on with life. And believe me, it would have been easier to not try so hard to meet this goal, but that just wasn’t in me!
So, my life became filled with new passion through advocating and I want to share some experiences of advocating that has continued to bring amazing moments to our life:
Spreading the word
Not wanting another diagnosed with my condition to also have to wait for answers, I chose to help share all that I am learning on ways to find some control with an uncontrolled condition by writing and speaking. This effort has led to national conference engagements and published articles through the years.
One specific example is centered around my strong desire to educate the medical field about Ehlers-Danlos syndrome (EDS) so I could share how important it is to listen to and show compassion to those of us affected by these complicated syndromes. That wish came through thanks to an experience attending a meeting in Providence, Rhode Island.
My husband Stu and I arrived early and there was a woman there from another church. Upon conversation, I just happened to mention to her, when I heard her husband was a doctor and professor at the Warren Alpert Medical School of Brown University, that I was hoping to someday get connected with the person that sets up the curriculum for the med students and asked if he might know who that person might be—and to my shock, I heard her say that he was the person!
Since that day, I have presented to the Brown first-year med students in their second week about living with EDS in hopes to spread the word that this is a real, terribly misunderstood and misdiagnosed condition. Through the years, we have met some of these students in the community who have remembered that talk and looked forward to the challenge of taking this condition on.
Another example of how things can be taken on by using your voice and finding a purpose again began in 2016 for me. The medications I need have to have dairy removed from them to be able to metabolize in my system, which is not covered by insurance. I am forced to pay full price for my medication due to having to remove lactose.
I couldn’t sit still and watch this happen so I wrote to the FDA, received responses that they were sorry I had to deal with this but had no other complaints. That set me off to create a survey that received responses from across the country. Still, no action.
But I’ve kept fighting, and this year, after a Zoom meeting with Congressman David Cicillini for a rare disease event, I again brought up this concern. Today, he is creating a bill that would include coverage for compounding. Will it go through? Who knows, as working with any form of legislation is a long, slow process.
I have also worked to help others that could possibly benefit from the use of cannabis to help them overcome the stigma society has put onto its use through education.
A simple night years ago at the Rhode Island State House to support a cannabis bill has opened up so many opportunities in our lives. We have continued advocating in our state and across the country, as co-directors for the Medical Cannabis program at the U.S. Pain Foundation, educating about how to use cannabis safely along with helping to bring laws into their states so others could also have this as a choice for their medical issues.
Articles have been published, TV interviews and talks at conferences have been given, invites to be part of Americans for Safe Access Advisory Committee were sent as part of the Collaborative for CBD Science and Safety, and we were recently invited to work with a small committee to improve the wrongs in the Rhode Island medical program. The future of recreational cannabis use is coming soon to our state.
But through all we do, one of the biggest gifts I can offer is to drop what I am doing when someone in need calls or emails with concerns. I know how lonely it can feel to cope with these medical issues. Nothing becomes more important at that moment than to respond and try to comfort them. I have learned that compassion—even from doctors who can’t even cure me, along with friends that will listen when I reach out for support and family—offers a form of immeasurable relief.
Recently, we are again going through this process of uncertainty, unknown, and questions as to what the future is bringing. This time, it is about Stu, my husband for almost 48 years. This amazing father of four, grandfather to five, and a wonderful man to spend my life with has been struggling with his health. So, our life is filled with many new doctor appointments, tests, and possible diagnoses that need to be ruled in or out. We’re waiting for answers, again.
We hold on to each other with hope and determination that answers will hopefully be found along with ways to improve the quality of his life. But, we also hold on to the reality we have had to face with my diagnosis, that there may not be an improvement and only more deterioration. So, we try to remind each other to remember all the good we have had in life along with what we can still hold on to. And we bask in the family and friends in our life to remember we are not alone and we can still care about others while living the life we have been challenged with.
As we have all learned all too well, life is not easy. Especially lately, we are all struggling to make sense of life—trying to understand blatant hatred, lies, uncertainty, climate disasters, shootings, and so much more. Despite the craziness around us all, we have to find our inner circle of peace. That begins with sharing our lives with each other and showing support for both the good and the bad.
When darkness comes to life, may you have success with training that mind to shut off the negative. May you find the courage and light toward finding purpose and emphasizing our common humanity. Strive for your new normal with purpose in life, despite your challenges. And remember, You matter, have purpose and meaning. And, remember, you are loved.
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 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 teacher.