By Suzanne Stewart.
I wanted to write something about my experiences this past weekend when my husband and I went to Connecticut. I was invited to go to a weekend seminar to learn how to be a “support group leader” and how to host an “in-person” support group for people living with chronic pain . I was a bit nervous at first because going on even a short trip is difficult for those of us who live with debilitating chronic pain on a daily basis. We worry about being in pain far from the comfort of our recliner, bed or even our own home. There are worries about taking medications or durable medical equipment on a trip or to a hotel. Then we worry about the airplane ride or the long car trip and the ensuing pain it will inevitably bring. But guess what? It is always worth the extra effort because our home, bed and recliner will be there when we return.
The U.S. Pain Foundation and their program called “Pain Connection”, hosted this two day workshop in Connecticut, not far from the U.S. Pain Foundation home office. As with everything else that I’ve ever done with or for them, I was never alone. They walked with me through each and every step of the trip and the workshop. The main thing about any trip is the pre-planning. It makes everything easier if you can call the airlines and arrange for a seat placement that gives you the most amount of comfort. You can do everything from your bed/recliner and home. All you need is your computer or a telephone. I got an employee of the airport to assist us to the gate, get me and my wheelchair onto the plane ahead of everyone else and all it took was a phone call. They needed the height and weight of my wheelchair and that was all. Everyone was very kind and cooperative. They let me take my wheelchair all the way to the door of the airplane, they took my chair and then assisted me to my seat. It was much easier to take only “carry on” luggage. This way we had nothing to “check in”. I brought my gum, headphones, music and smartphone. Everything went smoothly and all of the persons involved were accommodating. I even spoke to the staff where I had to be “patted down” because of my pacemaker. I’m not able to go through the scanner or have the wand put around my body because of my implanted medical devices. I told the staff member that I have a nerve disease and she was very cooperative and kind. She very gingerly patted me down and I was not in any discomfort. You just have to be prepared, verbal and have a kind attitude yourself.
We arrived at our hotel which was a wonderful accommodation and again everything was great! They even had a coffee machine in the lobby with my favorite and special kinds of coffee. We arrived on Friday evening and my husband went to the pool, while I sat at the pool area and rested from the day’s journey. We had a more comfortable bed than mine at home! I slept a whopping 6 hours and the most I ever get is 3 to 4 hours of sleep at home! I’m not sure if it was actually the nice bed or the fact that I was exhausted? Either way I was rested and ready for the day ahead. On Saturday we went down to a conference room and to my elation, there were several beds ready for takers; along with nice and comfortable tables and chairs. I had my wheelchair with me, but I quickly snatched up one of the beds and would have gladly shared if anyone had needed it or asked. We had introductions and proceeded to be trained to work with people who live with chronic pain and their families in a group setting.
Some of the tools that were taught included: relaxation, the “treatment tree” plan, self-compassion, meditation, self-massage and more. We learned the Psychosocial stages of chronic pain, the grief process and we had a question and answer period with discussions. We watched a couple of videos and did role playing on Sunday. We laughed and cried with each other and truly got to know our peers. I formed many new friendships during those two days. These are persons who literally live what my husband/caregiver and I both go through on a daily basis. The leaders were so wonderful and they too, laughed and cried along with us. We learned some techniques of Acupuncture and Acupressure and how to lead successful groups. One part of the weekend that especially touched my heart was when the caregivers did their presentations. These were the caregivers to the leaders of this training program. They spoke about how families are affected by chronic pain. Then we had a group discussion. Again on Sunday we learned even more about things such as: guided imagery, breathing techniques, pacing & respecting limits, how to maximize group member engagement and then we learned about flare-up relapse prevention.
At the end of the two days full of enrichment, learning and building friendships; we all received our certification for “group leader training”. We were called up individually and sat on a chair in the middle of the room. It wasn’t intimidating in the least! It was exhilarating to hear the kind words that were said about each person. They went around the room and everyone said something kind and wonderful to the person sitting in the chair. Maybe it was something they learned from them during the weekend, or it may have been something about their personality that was especially positive? Either way we laughed and cried again, together as a group and individually, personally. There were polished stones laid out on a table. Each stone had a word carved or painted on it. Some of the various words were: Courage, Hope, Love, Kindness, Healing, patience and so on. Everyone chose a stone that had a special meaning to them and that is when we sat in the “hot seat” and we were given positive feedback from the weekend.
I always felt comfortable to eat, drink or get up and move. I even wasn’t embarrassed when I fell asleep for a few moments during the comforting music and guided imagery session. When does a pain patient get to feel so relaxed and comfortable? It is when we are together with others like ourselves and feel comfortable enough to share, laugh and cry together. I know that many of us were so happy and felt very accommodated and comfortable during this workshop weekend. Even though I was “wiped out” from the day on Saturday, my husband and I did something that we had never done before! I called an “Uber” to take us out to dinner with some of the staff and other friends who were there. We had a fun time of chatter and more laughing and much sharing. We went back to the hotel and crashed after that, but it was worth it.
We arrived home but returned with many tools, more knowledge and several new friends. I now feel that I have the tools and am more confident to start and run a support group near my home in Michigan. I want to give special gratitude to the U.S. Pain foundation and their program called “Pain Connection”. I also wish to personally say “thank you” to Paul Gileno, Lori Monarca, Gwenn and Malcolm Herman and Cindy and Marty Steinberg. I encourage anyone to be more empowered and try to do things that you think you cannot do. Lastly, I would like to say that whomever wants to know what the U.S. Pain Foundation is all about, read this article again. You can visit their website and become an Ambassador and have a more fulfilling life. There is so much that you can do right from your own home. You can even use tools such as Skype and “Google hangouts” to connect with more people. I encourage you to look for a support group near your home and if there is not one available, think about trying to start one yourself. Helping just one person, reaching one person’s heart is worth its weight in gold.
Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor. She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation.
For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).