Written By: Beth Hudson, LBKA
Marianne is a quad amputee in my tribe. She lost her left arm at the wrist, the fingers and most of her thumb on the left, and all of her toes, due to septic shock as a complication from the flu. When I asked Marianne to elaborate for those who aren’t familiar with Septic Shock, she said, “Septic Shock is an infection in the blood that takes over the entire body. If the person is not revived, then vasopressors are needed. Vasopressors bring blood from the extremities to the heart, lungs, and brain, which is why hands, toes, and feet are lost in the process.” Three years later, she is still learning her new normal and working to become as independent as possible. The physical and emotional growth I have seen in this woman truly inspires me to continue mine as well.
Something happened to both of us that was akin to, metaphorically speaking, being in the cockpit of a rocket at T minus 0. We took off! And the fuel that got us off the ground was attending a conference.
I went to the Amputation Coalition Conference in San Antonio in August of 2019. Everything I did, from arriving at the airport to arriving home, was a new experience for me. I was nervous, but I was pumped. I looked forward to everything - the flight, the hotel, the restaurants, the pool, and the conference workshops. At the time I had just received my second leg and had not graduated from walker to cuff crutches yet; everything was a challenge and I had to figure out lots of “procedures” by myself.
My biggest concern was being in a hotel room by myself overnight. My anticipational anxiety tried to get the best of me, but I shifted that anxiety to overcoming any challenge that came my way. Glad to say I figured everything out and had no problems.
The conference itself was mind blowing! So many amputees with so many stories, so much to learn! I was even able to contribute a bit, even though I had only been in the club for a year. The camaraderie and the unconditional acceptance, coupled with laughter and tackling some difficult issues that are unique to amputees, gave me the kick in the ass to accelerate my ability to set higher goals and obtain them.
To say it boosted my confidence and broadened my horizons is an understatement. And so it was with my friend, Marianne, who just returned from the Skills for Life Conference 6.0 in Texas. This conference is specifically for folks with upper extremity limb loss/limb difference and their caretakers.
Marianne was on the fence about this conference. She truly wanted to go, but going as a quad created significant planning. Because Marianne still needs care, she currently lives with her parents and has outside caretakers as well. Her parents (who are lovely people whom I’ve met) had serious reservations about such a trip as this. How would she navigate the travel and the hotel room? How would she get help if she needed it? So many unknowns. Marianne had concerns herself. Her biggest concern was not the physicality of the trip - that was secondary. Her biggest concern was going to a big gathering in Texas after what happened in Uvalde in May. What would keep someone coming into a large conference hall and doing the same thing? She realized that she had to live her life and that staying home was no way to live that life.
To help her physically, she needed a caregiver - enter Melissa DeChellis - founder of Adaptively Abled Amputees (RBKA herself). Melissa offered to go with Marianne as her caregiver. This was a new role for Melissa as well, but the two of them decided to go for it, and go for it, they did. For the first time, Marianne “drove the bus” and Melissa took her cues from Marianne and helped her only when she requested it. Melissa had her horizons expanded by seeing what it was like from a caregiver’s point of view.
Marianne had so many firsts! She hit balls at a driving range and improved her swim techniques. Other workshops gave her “light bulb” moments. More than anything, the conference boosted her confidence which led to her tweaking her goals. She now is more committed to learning to use her prostheses better after having them looked at by professionals from the company who built them. Visiting with the manufacturer was one of the highlights of the conference for her. Marianne also realized that learning daily living skills from an OT is one thing, but learning from other UE amputees is another. She came back with many more skills in her “tool box. The most important skill? Learning to get back up after a fall - it is inevitable that one will fall, and knowing how to get back up relieves a great deal of anxiety.
Melissa recently told me that my going to the Amputation Coalition Conference “woke me up” and allowed me to see that life as an amputee could be anything I wanted it to be. After attending the Skills For Life Conference, Melissa saw that same spark in Marianne. For both of us, it opened up our worlds a bit wider and allowed us to make connections with people just like us.
If you have a chance to go to a conference, do it, and do it for yourself; you are worth it. Immeasurable gains and a change in your perspective will catapult you into learning how to live your best life.
And remember: You never know how much strength you have until you are called upon to use it.