Empowered Stories

Susan Bailey

​​Condition: Above-Knee Bilateral Amputee

Solution:  ComfortFlex™ Socket System and C-Leg® Microprocessor Knees

Susan begins on stubbies to learn how to walk on prosthetic legs.Susan’s Story

In July of 2007 I was enjoying a leisurely summer with my husband Josh and our two young sons, Will and Paul.  I’d been feeling under the weather for a couple of days, but on Saturday I pushed myself to go out with my family to a baseball game and fireworks.  When I woke up the next morning feeling worse, Josh took me to the emergency room where I was treated for stomach flu and dehydration. Later that day, I became delirious and ended up in the hospital’s critical care unit.  My family sat by my side for weeks as I drifted in and out of consciousness, fighting deadly E. Coli bacteria that had invaded my bloodstream and progressed into septic shock.         

Family is Key

When I finally began to wake up, my husband had to tell me that in order to save my life, both my legs were amputated above-knees. It was difficult for me to comprehend what had happened but one thing was clear:  I was grateful simply to be alive.  With the help of God, my family and my medical team, I faced many weeks of illness, infection, fever, dialysis and in-patient rehabilitation. After three months I was able to go home from the hospital.

Lucky for me I had a proactive family that began doing research about prosthetics right after my amputations.  A physical therapist at the hospital gave my husband an encouraging magazine article about a bilateral above-knee prosthetic user who had lost her legs in 2001.  After I regained consciousness, a woman who was a below-knee amputee came to see me at the hospital and showed me her residual limb and prosthesis.  That really helped me and I knew then that talking to other amputees was going to be important.  A few months later my prosthetist showed me a video of a young man named Cameron Clapp who had two prosthetic legs and one prosthetic arm. Not only was it amazing to see him walk so well, he also seemed happy and “normal.”  For the first time I believed it would be possible for me to walk again.

It Was all About Attitude

My first visit with a Hanger Clinic prosthetist was in May 2008, about nine months after my amputations.  I was wearing “stubbies” (short legs without knee joints) and using a wheelchair to get around. I knew I was fortunate to be sitting in an examining room with Kevin Carroll, a well-known prosthetist who traveled around the country working with lower extremity amputees.  He took one look at me sitting there and said “Let’s see how you’re walking,” and even though I was afraid of falling, I slid off the edge of my chair and took a few halting steps. Yep…I fell, but what matters most is that I got back up. And I began learning about the importance of pushing myself and facing this challenge head-on.  That’s the day I realized that it was all about my attitude.

Susan stands by her fireplace on her prosthetic legs.

Two months later, Josh and I attended the annual Amputee Coalition of America (ACA) convention in Atlanta.  I met Heath Calhoun and Roland Paquette, two U.S. service members wounded in the Middle East, and both bilateral amputees like me.  They gave me so much good information and inspired me at a time when I needed it the most.  Cameron was there too and I was glad we had the chance to meet.  The entire experience was a turning point, one that motivated me to wear my stubbies every day and try harder.

Following the ACA convention, Kevin really pushed me to do regular errands wearing my stubbies, like going to the grocery store or out to eat.  He stressed that it was essential for me to practice navigating everyday obstacles like curbs, stairs, slopes, and getting in and out of a car. I learned that being committed is what makes the difference, and after a couple of months, I sent my wheelchair off to storage and became a full-time walker.  After several months on stubbies I was ready to begin using full-length legs with computerized knees.

I had to face a new sort of obstacle though when my insurance company denied coverage for the C-Leg® microprocessor knees that my prosthetist had recommended.  Hanger Clinic continued to submit one appeal after the next but each time, the insurance company issued another denial.  It was frustrating to be told I could not have something that I truly needed and so I decided to try another approach.  I contacted ABC’s “Good Morning America” about my insurance problem and they told my story on national television.  A few weeks later I learned that the Virginia Bureau of Insurance was requiring my insurance company to approve a pair of C-Leg microprocessor knees. November 12, 2008, was an amazing day for me---the day I gratefully received my new prostheses and literally began walking towards the life I wanted.

Ten months have passed since then, and with a lot of hard work and physical therapy, I now wear my prostheses all day. Things are not perfect---I still have hypersensitivity in my residual limbs---but I have come so far and I believe my situation will keep getting better.  My life is pretty full with my family, my church and even some public speaking engagements.  And it’s great to be able to chase after Paul and Will, who are now 6 and 7 years old. Recently I’ve done a little traveling with Hanger Clinic, working with Kevin and a physical therapist as they give clinical presentations that are followed by one-day clinics for amputees.  For me the best part is getting to meet so many different people at the amputee clinics. I try to be positive, encouraging them to focus on what they can do today and not get too worried about the future.  I’m also a trained peer visitor for Christian Amputee Support Team (CAST).  In July 2009, two years after my amputations, I attended CAST’s amputee water skiing clinic and rode on the adaptive sit ski.  On September 16, 2009, I flew to Washington, DC for an ACA lobby day, talking to legislators about the importance of requiring insurance coverage for standard prosthetics.

I guess nobody ever expects to become an amputee, but my life went this direction for some reason and I’m determined to make it as positive as I can for myself, my family and the other amputees I meet along the way. ​​​

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