Speak for Yourself

Whether you’re in your rookie season as an amputee or a seasoned veteran of four decades like myself, the ability to advocate for yourself is a really important spoke in your wheel of life with limb loss. Self-advocacy comes in many forms, and it doesn’t necessarily have to stem from your voice. A friend or family member or caregiver can be that voice for you if need be. What’s most important is that your needs and concerns are heard by your healthcare tram, prosthetist, therapists, insurers, employers and anyone else who can affect your quality of life.

I learned about the importance of self-advocacy from my mom and dad, at a pretty young age. Four decades ago my parents compassionately led me into a dusty horse barn on the outskirts of town under the cover of the night. Maybe I was 12 years old, but for sure I wasn’t provided with much of an explanation… not so much for my own protection, but for the vocational safety of the man we would meet in the stables that night. My parents prayed that he could help.

“Doc,” as my dad called him, had agreed to try. He wiped a smattering of hay stocks off a massage table and ordered me to climb up. With little bedside manner, he adjusted a swinging overhead lamp that smelled of burning dirt particles. It spotlighted his work area, in an otherwise dim shed… a perfect TV set for modern-day crime scene shows. A nervous horse nickered over my shoulder. Doc pulled out his needles… his acupuncture needles. Old West doctoring meets Far East medicine.

Doc was a vet, as in veterinarian, as in licensed to practice on horses and not on humans. I was really suffering from phantom limb pain – throbbing in parts of my body that were no longer there – a phenomenon associated with amputation.

This was the late 1970s. My parents were rookies. Young parents thrust into a new league... a new league with no coaches. Back then, there were no instructional DVDs, no magazines like this one. You couldn’t Google “child with an amputation” or “phantom limb pain.” In fact, the medical community itself had no real explanation for the agony I was experiencing. A parent does what a parent has to do.

And so, I laid still as the animal doctor began to work his magic. He left his long needles for his equine patients and tried magnetic therapy, a form of acupuncture designed to restore proper energy flow throughout my body from focal points on my ear. Nothing invasive. Nothing criminal. But unconventional nonetheless.

Did it work? Maybe a little. Walking around school with magnets taped to my ears was a little awkward though. But the results were in the effort. My parents came to learn that an open mind would be their new game plan. Things have changed for today’s parents of kids with a disability, but one thing for certain remains constant, and that’s the impact of attitude.

“We cannot change the inevitable,” preaches evangelical pastor and author Chuck Swindoll. “The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10 percent what happens to me and 90 percent how I react to it.” I think my horse doctor would have agreed 100 percent.

Developing strong advocacy skills can be a tremendous help to you as you navigate your recovery from amputation and then move forward in managing your life’s course with limb loss. Advocacy refers to your ability to express your needs, desires and concerns in relation to your health and the care provided to you. It’s about ensuring that your goals and aspirations are met. Even though there are many resources available to amputees to assist you in the physical and emotional aspects of recovery, you still need to be proactive in finding resources and identifying the ones that best meet your needs.

Sometimes, services and programs available in your community are available through different agencies and are not listed under one umbrella. It might require a little investigation on your part to find them. Other times, you may need to advocate for yourself with insurance companies or healthcare providers, since even those providing you with care cannot know all your needs or all of the resources and options available to you. In order to achieve the best health outcome possible, it is helpful to establish solid relationships and open communication with your providers.