By Ellen Smith.
For those of us who live with chronic pain, we must somehow find a way to live the life we have been given, despite the often overwhelming challenges we confront on a daily basis. Those suffering with chronic pain often face a lifelong challenge knowing that medical science may not find effective treatments for their condition in their lifetime. Chronic pain patients must accept their altered life circumstances and then adapt by searching for mechanisms to find purpose and meaning and yes, fulfillment in their lives. I am guessing we share that feeling that if we don’t feel like our life matters, it is hard to cope. So, I chose to search for what will work for me and not hurt me, no matter how many doors are closed in my face.
Diagnosed with two incurable conditions, Ehlers-Danlos Syndrome and Sarcoidosis, I had to figure out how to move forward despite the horrors that were my new reality. How would I be able to live like this? I was losing my ability to continue to teach, to be a master swimmer, a high school swim coach, walking any distance, walking on any uneven ground, including the beach sand that I loved, lifting anything more than five pounds, digging and planting in our organic garden, twisting, turning, for examples. It was both horrifying and heartbreaking to learn about the possible future with these conditions. I became overwhelmed for this was pushing too many buttons. Eventually, I found that turning to writing and advocating, created an outlet for my emotions and my intellectual needs. I now have developed new tools to cope with the dramatic changes in my life circumstances. My goal was to learn how return to being the happy, productive person I loved and wanted to be.
I eventually learned to live by four rules:
- All people have something they have to learn to cope with and this just happens to be the “gift” I was given.
Really opening my eyes to others lives, I saw divorce, deaths, suffering, loss of a child, damage to homes and lives from hurricanes, earthquakes, fires and tornadoes, terminal conditions, etc. and realized this just was what I had to learn to cope with but was not alone. No one gets through this life with no burdens. And, I realized I was actually lucky when comparing myself to others. I had a family, a happy marriage, loved life and had passion in what I chose to take on.
- I would waste my time if I got stuck on “why me”. People really don’t want to be around whiners, so that act had to be cleaned up quickly or I stood the chance of losing the friends I cared about.
I have learned not to share with every person I meet. When a friend sincerely wants to know the truth, then I open up. But for the others, I have learned to joke that there is no point of complaining since “nobody wants to hear it”! And it’s true – since everyone is coping with something, you have to find the right person that really wants to listen to you. Having chronic issues creates judgement from others and can get very isolating. So we need to be careful to hold on the those that truly care and try not to burn them out with our burdens.
- I never stop being a parent, so although my four sons are now grown and out of the home, they are still observing how I handle this and each of them has a 50% chance of having EDS – so I need to be strong and continue to be a positive parent model.
I decided that I want my children, grandchildren and friends to remember my smile and passion for life instead of the gory details of what I have to face. I want them to remember my accomplishments, not my sorrows. My Dad was my role model – he kept that smile and interest in others and life in general with him at all times despite his battle with cancer. He suffered from prostate cancer, lung cancer, kidney cancer and then for seventeen months, suffered with bone cancer before passing. The night he passed, he had been joking with dear friends in the retirement home he lived in. He made us comfortable being around him instead of scaring us away and I so value and turn to the lessons he was showing us. This is what I hope to leave for my children, too. I even applied what I learned from observing him when I spent about four years in and out of a wheelchair. I realized it made people uncomfortable to see me like that so learned to lighten the air when around them. Don’t get me wrong, I hated being in that situation, but it was the life I had to endure.
- This is it – the only life I get to live so I can choose to be miserable or move forward despite this. Happiness is an attitude – we either make ourselves miserable or happy and strong. The amount of work is the same! I choose life!
I found out quickly that when I got rid of the “why me attitude” and “this isn’t fair”, I found a way to again enjoy my life, find acceptance and vowed to keep fighting and not stop looking for answers. Even if what I find out isn’t going to change my course, due to my age and damage already done from a late diagnosis, it is satisfying to know it might improve the next generations future, coping with what I face. It is heartbreaking to have your “normal” change in life, but we still need to live that life the best way we are able. I do, however, find it interesting how a smile can also be misunderstood and judged by others. Many assume that if you are happy and smile, then all must be fine. I have been shocked myself to hear others stories of what they carry with them daily and still find a way to be pleasant, grateful and caring about others. An example of this for me was when a home care nurse came the first time after my 24th surgery recently and in she arrived with this warm smile, filled with compassion for me. As we talked, I found out she had lost her only child to a car accident followed by the loss of her marriage brought on by the grief. She eventually remarried to twenty-eight days later losing him to a heart attack. Here she is now, taking on the care of her elderly mother and working as a home care nurse, giving to others. I so respect that courage and I would rather be misinterpreted as being fine than seen as that poor lost soul that never was able to find peace with life.
I’ve learned to start each day with taking a moment to be silent and run through my mind, all I am grateful for. Some things I think of are very simple but important for me – waking up each day with my husband and service dog in my life, using my legs to walk, using my arms, healing successfully from my now twenty-four surgeries, having our four sons, four daughter in laws, and four grandchildren in my life along with family and friends, new and old. It is a wonderful practice to try – find what you can be grateful for. I realize that I have more than many ever get to experience, despite my conditions, so I need to remember that daily and be grateful.
This process of acceptance and how to live this life despite the horrors I have to go through, took a good year to establish and it has constantly been enriched by new ideas. Give it a try. Get your diagnosis, get your pain under control and then find what you can be grateful for. You can do this, but it is requires hard work and discipline. There will be days you slip backwards emotionally and physically. This is so heartbreaking and feels so unfair as you try to be positive and make the best of a difficult situation. Don’t beat yourself up when that hits but also don’t allow yourself to stay in that mode. I keep reminding myself that my husband has chosen to stay by my side and help me with the ins and outs of living with two conditions, but I do feel I have a responsibility to be as pleasant as I can be for his sake, too. Like me, he didn’t ask to have to be part of this change to our lives either.
I miss the life I was living. I miss all that has been taken away from me, but I am still here to live life. Try to live your life with passion and that smile the best you can and know you are not alone trying to cope. It is the biggest challenge you may have to take on, but let’s hope that you, too, find your peace with what you have to face. You are on a difficult journey with pain, but try to not let it define you.
Ellen Lenox Smith is Co-Director for US Pain Foundation Cannabis Advocacy and an RIPAC board member who frequently contributes to the National Pain Report.
She is the author of: It Hurts Like Hell!: I Live With Pain – And Have a Good Life, Anyway