I’ve always been a dancer. My ballet training started when I was three, and from there, I went on to modern and jazz. Today, at 66, I’m an avid “barroom” dancer. But there was a time, from my early twenties to mid thirties, when I stopped dancing entirely because I had a serious, but undiagnosed and untreated, pain condition that only lessened during my three pregnancies. Without any medical guidance (no one I could find was addressing chronic pain at that time), I decided that I couldn’t and shouldn’t dance. In fact, I hardly moved at all because I believed that it would hurt me more. I became a “kinesiophobiac”— a person afraid to move. And, as a result of that, my body weakened and I became more and more fearful and depressed. I was stuck in a self-perpetuating cycle.
Then, in 1982, while nursing my third baby with horrible pain shooting through my neck and back, I heard a woman on a morning television show talk about chronic pain and how meditation could help. That was a turning point for me. Suddenly, it didn’t matter that I could have pain for the rest of my life. I was elated knowing that I was no longer the only person on Earth with such a bizarre and unexplained condition. For the first time in years, I had hope. I not only started meditating after the show (it was worth a try), I started moving again. Gradually and consciously, I moved and stretched my body as much as I believed I could. I did this meditative dance almost every day for more than a year. Little by little, my tightened body loosened and strengthened, and I began to feel well again. I still had pain, but it had lessened and was less a focal point of my life. I was back to being a woman, who could get dressed without help, sleep in a bed, and above all, enjoy her family.
By the early 80s, I was traveling back and forth to the former Soviet Union doing youth exchanges; and, by the mid 80s, I was working at New York City’s PBS station producing live children’s programs in the New York metropolitan area. By the early nineties, my pain was almost gone, and I returned to WNET after being away for several years. This time, I was in charge of national outreach for two shows that changed my life: Before I Die, a program dealing with care at the end of life (including pain management), and Bill Moyer’s addiction series, Close to Home. My work on those programs eventually led to a position as Director of Communications and Advocacy for the newly formed American Pain Foundation (APF), an organization that provided information and education for people with pain—something I knew about from personal experience! In 2006, I joined the American Academy of Pain Management (the Academy) as the Director of Communications, and in 2006, I became the Executive Director.
By 2009, the Academy, which had been interdisciplinary from its inception, changed its mission and embraced an integrative model of pain care—a model that focuses on wellness rather than disease and emphasizes the importance of good food, exercise, and mindfulness exercises.
So, here’s where my personal physical story gets interesting. What I didn’t mention earlier, is that although my pain decreased throughout the years, my body had been seriously damaged by years of limited movement and holding myself tight. My clavicles were pushed up, my shoulders shortened, my shoulder blades were flattened, and I lost range of motion in my neck and arms. But, until I started working with integrative pain clinicians who encouraged body strengthening and movement, I never thought that I could regain those functions. At the age of 60, I decided to start going to a gym and I found an extraordinary female trainer (in her fifties), who had survived cancer many times throughout her life. She really understood her own body and she understood mine. And, lo and behold, after all those years, I regained my ability to move in ways I hadn’t been able to since my twenties, and it didn’t take that long.
Today, at 66, I am moving and dancing more than I ever had in my adult life. Actually, I’m movemaniac. Something I never thought would happen in my, gulp, senior years.
So, readers, I would greatly encourage you to turn on some joyful music and move what you can and as much as you can—right now!
Thank you for your story. I really related to this. With my fluctuating pain levels I’ve decided the true measure of “good day-ness” is whether or not I’m moving forward. As long as I’m moving, I figure I’m moving in the right direction. Once I let go of the “must rest up” mentality that came with my diagnosis, I found I had much more energy and felt much better. It took nearly 10 years to recover from a horrible injury that left me flat on my back for 13 weeks and unable to walk more than a few steps for a couple of years. Now I wear a pedometer to count my steps and know that I will feel better once I cross that 6,000 steps threshold each day. If I make it to 10,000, 12,000 or even 15,000 I know I’m moving forward and into a better head space even if my body is a little sore. I’ve developed a better balancing skills to open up, breathe and even meditate while moving. Life is a dance.
Lennie is an inspiration, right? Coup: from one nurse to another, I would love to see you become one of our regulars in the community; we would love to be a safe haven for you. I am proud to hear that you are working on your DNP. (jealous too) Nursing research on effective pain care—especially around integrative techniques and wellness is desperately needed. If you are not involved with the American Society for Pain Management Nursing (ASPMN) or the American Academy for Pain Management (AAPM), your colleagues are waiting for you there too. Nurses who live with pain have a powerful voice and can speak to the public in unique ways. WE NEED YOU!!
Hi Coup. It would be great to have you join us and talk more. Come to chat or we can start a forum if you prefer
Hi Coup,
It is nice to meet you. I read your message above and wanted to invite you to the live hosted chats here at The Pain Community. It is a wonderful way to start the day and also to meet new friends who truly understand the journey of chronic pain.
The chats are Monday – Wednesday – Friday at 11 AM Eastern Time in the chat room here on the website. You will find the chat room under the tab “community” the same place that you find the discussion forums.
We look forwarding to chatting with you here on the discussion forums and hope to see you in chat.
TPC YaYa
TPC Community Moderator
The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.
Lennie Duensing,
What a wonderful story about finding life again. It is amazing how we can find things along our journey with pain that is positive. I loved reading your story as my pain also started in my early 20’s and I had 3 small children at the time, all under the age of 7.
Movement is wonderful, some days it is harder to move with the pain but I agree that we have to try. We have to fight the pain and movement can be one of our best treatments.
Thank you for your story. I’m laying here in pain but I’m reaching out to belong and find love and support. How can I connect with the organizations and find support for a physically changing future. I am going on for my DNP ( doctorate of nursing practice) at least I am at the point I’m still trying everything I can to stay focused on growth as two years ago I could not have due to pain…. I’ve been blessed with a second breath. Maybe I can do something for my doctorate with the pain organizations you mentioned. Should I just call them? I will . Any advice. I have found mindfulness helpful, have read manage pain before it manages you, catastrophe thinking . If I could help others I would feel so satisfied. I would love to make pain research a part of my education for my personal benefit as well. I am a mom of 7, 4 still home. 13-19 a home. We r a team. I would love to hear from you.