Those of us who have been on this journey for a while realize when a teachable moment occurs. It can happen quite organically. Sometimes you have to “read” the other person to determine if they will be amenable to that education. Sometimes it works, and sometimes it blows up in your face, but at least you tried.
Recently, I had a conversation with a friend; we were just chatting, and then they brought up a subject that raised my eyebrows and had me taken aback a bit, had they seen my face. (Yes, we actually used the phone as a….wait for it….phone!)
This person could not understand why in the world any amputee in their right mind would have an elective procedure to lose a limb. Why be anything but whole? They had heard several times, “Having elective amputation gave me my life back.” They just couldn’t wrap their head around that statement and asked me why many of us say and think that.
Here’s the kicker – this person is also an amputee. But here’s where perspective becomes important. I immediately went into CPV (Certified Peer Visitor) mode and tried to see their point of view. That was fairly easy because I knew their story, which was, in many ways, the exact opposite of mine.
Their amputation was not a choice – it was that or die. Pretty easy choice. But their journey was so much different because of that lack of choice. They were forced to make incredible life changes that had a tsunami of ripple effects. Independence, gone. Why me? How do I make a living? Can I make a living? How will other people react to me? Will people think less of me? Will my family and friends still accept me? Support me? And the list goes on and on. Have we all dealt with these issues? Yes, but we look at them through very different lenses depending on the circumstances of our amputation(s).
My LBKA was mostly due to Compartment Syndrome and a flailed left foot and ankle (“to flail” means “to exhibit abnormal or pathologic mobility”). In my situation, it meant paralysis. I spent over 14 months with a “dead” leg. I was fitted with an AFO (brace) that went the entire length of my leg and ended with my shoe incorporated into the end – think Forrest Gump on steroids. In order to walk, the AFO locked at my knee, and I had to swing my hip, using a walker. I think a snail could have slithered faster than I walked with that contraption. It was awful.
As I started to answer their question, I began to stumble because I wanted to make sure there was no judgment of any kind in my reply. I understood that question from an able-bodied person, but because it was from another amputee, I had to frame it differently. In writing, we call that “knowing your audience.”
The reason I stumbled with my answer is that I have friends who are permanently in wheelchairs or use other ambulatory devices (like me); they lead independent lives in every sense of the word; I wanted my friend to understand that being in a wheelchair/using ambulatory devices should not have any stigma attached to it in any way. At that point in my journey, I would rather have been in a wheelchair than use that AFO contraption with a walker. I did think of those tsunami ripples that would occur in my life from that decision, and yes, I’m aware that I HAD that choice. How would I function at home? How would my partner deal with this? What would life be like for us? How do I achieve MY best quality of life? If I hadn’t had that choice of elective amputation, I would have chosen the wheelchair. And guess what? My quality of life is made by the choices I make, not by the way I physically navigate my world. We all achieve that quality in our own way and on our own timeline. And of course, no one lives on an island.
I asked this person how they would feel if they were in pain for months, or even years. I asked them how they would feel if they had to have surgery after surgery after revision surgery without any measurable results. I asked them how they would feel if they weren’t able to be anywhere as near as independent as they could be with a prosthetic. I asked them what the emotional and psychological toll would be. At what point would that break them?
Lastly, I told this person that the bottom line for me, and for many of us, is that quality of life. We want the best we can have considering the hand that was dealt us. This person’s quality of life was prescribed by circumstances that were not under their control, whereas mine was. Once I explained all this, there was a very long pause. “Oh, I get it now. Thanks for explaining that to me. I never thought of it like that before.”
Offering other perspectives is important, be it someone who genuinely wants to understand the amputee community, as well as working towards understating each other. When this person hears another amputee state that it was the best decision they ever made, they will understand that other person’s perspective much better.
My point is that no matter who it is, education is the key to understanding, – education with ourselves, with the abled, and with the differently-abled. Same, same, same. Education leads to acceptance, and acceptance leads to inclusivity – and inclusivity is what we all want, isn’t it? .
And remember: you never know how much strength you have until you are called upon to use it.