When you are young, life is full of promise and adventure. You tend to feel invincible with a future of seemingly unlimited opportunities. So much is innocently taken for granted, as many of us are fortunate enough to be protected, nurtured and guided by well-meaning family and friends. But, as you begin to leave the security provided by your family and transition to a life on your own, with real world decisions to make, you begin to see the world through a different lens. You realize, as you meet so many new people from a variety of backgrounds and experiences, that life presents many with challenges which often prove isolating and at times, physically and emotionally overwhelming, depending on what you must confront. Sometimes, you find you must redefine yourself with new purpose and meaning. Depending on your situation, you may need to adapt your lifestyle in ways you could never have anticipated. It then is necessary to face the challenge of reintegrating into society with changes that are often significant and difficult.
At one time in my life, living with Ehlers-Danlos Syndrome, I spent four years in a wheelchair. It was a tough assignment to take on and in time. I realized it was important to make those around me comfortable relating to me in my life circumstances which had been altered so dramatically. If I was able to show I was still living life and even adding humor to my predicament, it seemed to help others accept me in my new circumstances I realized that often, I needed to take the initiative to allow people feel comfortable with the “new me”. But, after many leg and foot surgeries, in time, I got a chance to gradually walk again. It was so weird to be in a hospital and be assigned to get up and take steps. I had to be taught how to walk again – something that had just been taken for granted. I remember hearing my rehabilitation physical therapist say: “Your steps are too far apart” or “Take smaller steps”. Who would think, in your fifties, one would have to learn how to walk again! So I went from learning to reintegrating into life as a wheelchair bound person and then again as a person learning how to walk again.
I was finally properly diagnosed at the age of fifty-four, with what I was born with, Ehlers-Danlos Syndrome and a year later, Sarcoidosis. I had to face one surgery after another. Of course, these all involved a lot of isolation, extra pain, tremendous discouragement and concern as to who I was to be in the future, assuming I had one. I struggled with this process, mourning my losses and eventually cleansing through writing. In time, I learned to find the positive in my life, not feel like it was only me having to live with pain and hardship. I came to realize that life was tough for so many of us but in different ways. The challenge was to face our altered circumstances and find a new method to cope with our issues, whatever they may be. It was a real trial for me to learn to adjust to being part of society as this handicapped person. It was not the me I knew, and I had to learn how to function as this different person. Yet, just this past year, I have had to again learn to readjust to a different life again. After twenty-four surgeries, adjusting diet, medications and daily physical therapy, I have again happily learned how to reintegrate into society. This time, I am returning to things that I thought were gone forever – driving, reading without dizziness and nausea and walking! It is thrilling but again, an adjustment to return to things that were once part of my life. The weirdest thing is having to work with the emotions. Actions that once triggered catatonic episodes, can still make me tentative, with the mind playing those games making me wonder if I am about to relive traumatic life-threatening experiences. So, once again, for a very good reason, I am now having to learn to adjust to society again as a changed person.
For those of us living with chronic pain, our lives can be like a roller coaster ride. One day you might be dealing with the social isolation. This so often, can be evident in the lives of the bedridden, one experiencing surgery recuperation, or one being so ill that you aren’t able to participate let alone want to be around others. Or, you can instead have moments of improvements, regaining some of what was lost. You never know what will come next. As a result, you may have a tendency to keep your guard up – sometimes doubting success, and often feeling at a loss as to where you now “fit in” and then facing positive chances after lots of efforts. As these changes come upon us, each time, we must learn to reintegrate into society to cope with the person we are learning to accept to be. May your transitions be towards a positive direction!
May Life Be Kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.
Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/