Each year, several volunteers work behind the scenes to bring to life National Conference. Three particular community members play an integral part in the conference planning and Amputee Coalition took time to recognize their dedication and contributions in this featured article. These volunteers shared their personal stories about how they have evolved on their limb loss journey and have learned to reach out and help others.
On November 10, 2010, my life changed forever. My husband of 41 years died suddenly because of complications from exposure to Agent Orange when he served in the Marine Corps in Vietnam. My heart was broken, and I didn’t know if I could go on. A month later, I contracted MRSA in a knee replacement. I became septic, and they had to amputate my left leg above the knee to save my life. I was 62 years old. After suffering two huge losses, all within a month of each other, I didn’t know what my life would look like going forward. My kids were so supportive and surrounded me with love during this time of grieving and loss.
I had a decision to make as to whether I would give up or go on, and I chose to live. My faith was strong, and that saw me through the worst of it. I wanted to start a support group for fellow amputees because there weren’t any in my area. Along with my prosthetist, we founded the COP Amputee Association (COPAA) in the fall of 2011. I contacted the Amputee Coalition for guidance and resources to help me get started. The staff were wonderful, and I felt more confident after talking to them. We started COPAA with just three people sitting around a table, and now we have over 90 members and two sites. We became a non-profit in 2013, and I currently serve as president.
With a renewed sense of purpose, I became active in doing many adaptive sports, such as skiing which I had always loved. I took up waterskiing, surfing, wheelchair tennis, cycling, and kayaking. There was no stopping me now.
In 2013, I successfully completed Amputee Coalition’s first certified peer visitor training course offered by Spaulding Rehab in Boston. I developed a new appreciation for my role and responsibility in helping fellow members of the LLLD community. I learned ways to communicate effectively with new amputees, guiding and supporting them as they started their limb loss journey. The training gave me a whole new set of skills for my toolkit, which I could then share with others as a certified peer visitor. These skills also carried over to my role as support group leader. I went on to become a lead advocate in 2019.
As I became more active in adaptive sports, I met many members of the LLLD community. I was able to offer encouraging words, be a shoulder to cry on, or just be a confidant. It was a wonderful feeling knowing that I had skills that enabled me to encourage, support, and lift up others who were struggling. All of this has helped me heal and find joy in my life after my husband died.
In 2015, I joined the education and conference committees of the Amputee Coalition. I’m currently serving on the National Conference planning committee, helping to transform ideas into actions. Helping to plan an event as significant as the National Conference has been a responsibility I don’t take lightly. I knew from having attended conferences before that this was a daunting task. People from the LLLD community are drawn to national events for many reasons, but probably the greatest reason is connecting with other amputees from across the country and, in some cases, beyond our borders. The ability to share with others, develop friendships, and attend educational sessions is perhaps the main reason people should attend. It is also a time to laugh, a time to cry, and a time to relax and have fun. The latter is priceless. The many clinics and workshops allow attendees to take home valuable information that often translates into a greater understanding of their potential. Participants go home knowing that they are not alone in their journey, and I am proud to be part of that effort.
In 2007, I was riding my Harley and was hit by a track hoe that fell off a semi-truck. I made it through the ordeal but am forever without a right leg. The incident resulted in my instant retirement at the age of 49.
I needed to find something to do, or I was going to slide down into a pit that wasn’t going to be easy to climb out of. So, I started classes at John Wood Community College and fell in love with learning. I moved on to Quincy University, completed my bachelor of science in psychology, and minored in theology, graduating magna cum lauda in 2017. I am very proud of that. School was never on my radar and was only possible because of this accident.
It was during this time I found the Amputee Coalition. I loved the whole idea of what the Coalition stands for when I found it on the web. I attended my first conference in Kansas City in 2012, and I was hooked. At this point, I didn’t know many other amputees, and I was in awe of what was available at this conference. I didn’t know what to do first! It was simply amazing, and it did impact and change my life forever. I knew right then that I wanted to be a part of this organization.
I learned how to swim at conference and still swim every week. I love the freedom of movement it gives me. I have made true friends from all over the U.S. from attending conference! I travel a lot and visit them when I go through their area. I also love the exhibit hall for all the new devices and products.
At conference, we see others just like ourselves and don’t feel so alone. There are sessions that are for each level of amputation, and we can meet others and ask about their devices, liners, and see the newest devices available and just feel a bit freer than when we walked, rolled, or crutched in.
After my first conference, I was in the first class to go through the lead advocacy program that met in Austin, Texas. I have also been to D.C. four times to speak on the rights of amputees to my congressmen and representatives. I spoke at the Medicare hearing in 2015 when Medicare attempted to take away new technology affecting many of us. I was then asked by the Coalition to speak at a congressional briefing on this very subject. There’s a saying that I say weekly: it takes a village! We must help each other, we must listen to each other, and we certainly must be there for one another. Community is everything.
My journey recently changed now that I am in a wheelchair most of my day. I use crutches, but the wheelchair is my primary mode of getting out and about. I now will be looking for others at conference that cannot wear a device for one reason or another. We must not be made to feel like we are doing something wrong because we choose the chair. It’s about living our lives to the best of our ability and conference will be a safe place to talk about that. Each year, there are many amputees who talk about how the event has changed their lives. I can’t wait to see you all there!
Mike St. Onge
While there are similarities to everyone’s limb loss journey, we all have unique perspectives and life histories. I lost all four of my limbs from pneumococcal pneumonia, sepsis, and gangrene. My journey started with spending five months in four different hospitals and two months in a drug-induced coma. The amputations and most of my skin graphs were done while I was asleep. I woke up this way; there was no going back or foreknowledge of what happened. The extraordinary thing in my life that gave me a tremendous drive was the birth of our daughter Samantha six months before my illness. I always felt there was something larger than myself to live for. I wanted to be alive and be a father and husband.
My journey in getting involved with helping others started out slow. In the beginning, I was a peer visitor and later became a lead advocate. Then, I served on different Amputee Coalition committees such as the upper limb advisory and the education and conference (now called events) committee. Finally, I was invited to join the Scientific and Medical Advisory Committee (SciMAC). I became profoundly and personally aware that the Amputee Coalition is just that, a coalition. We are a group of amputees with professionals in the industry that work together to amplify our voices. We fight for each other. We teach and learn from each other. The ultimate goal is providing acceptance and success for ALL OF US.
Another way I got involved was attending my favorite workshop by Enhancing Skills for Life (SFL) during National Conference. SFL is a nonprofit, triennial workshop focused on the upper bilateral limb loss community. It is the only nonprofit in the world that has a sole focus on upper bilateral amputees, and brings them together, face to face, to learn and share with each other. I wanted to discover how other people like me accomplished their ADLs (Activities of Daily Living). How do other bilats feed themselves, get dressed, and bathe? All the “normal” things we do every day.
First, I was just an attendee at the SFL2 conference. I saw the organizers could use extra help, so I volunteered to run errands. Then I made friends, and they were like, “Hey! do you want to be on the planning committee for SFL3?” Next thing I know, I’m on the Board, the conference planning, scholarship, and makerspace committees. Apparently, I have a hard time saying no.
My expertise is that I’m not an expert. I’m just a normal guy that has been fortunate enough to be around passionate people who want to help others that look like me. One thing I want to emphasize is the value of Amputee Coalition’s National Conference is immeasurable. When you fully participate in everything that’s offered, it can be life-changing. It made a simple guy like me want to do more and become more.
The experience is so unique, and every time I attend, I run around like a maniac meeting new people, laughing, joking, and having a great time. Attending sessions to learn new thoughts and ideas, visiting the exhibit hall floor to see new products that could improve my life, and talking one-on-one with manufacturers are some of my favorite conference activities. Just all of it is the best thing ever!
After conference every year, I’m left feeling amazed, inspired, and filled with a renewed passion for life. I just want to do it again and again. That’s how much fun I have. Do you want to join me?