Common Misconceptions About Limb Loss by Osteosarcoma Survivor, Alex Boutte

The following blog was written by our friend and osteosarcoma survivor, Alex Boutte aka limbitlesssunshine. All artwork also belongs to Alex.

"Despite more than two million Americans living with limb loss, assumptions stemming from misinformation make up most of what the average person knows. Below are a few things the limb loss community would like you to stop assuming. Pretty please with a cherry on top.

Our life as we know it is over - We lost a limb, a part of ourselves, so how could we possibly carry on with our lives in any productive, fulfilling way? There goes our social life, our sex life, and any form of joy able-bodied people get to enjoy on a regular basis. Here's the thing, we still get to do all those things, thanks to modifications and accommodations. If anything, the only thing keeping us from soaking up all the world's adventures is lack of accessibility. Which is exactly why disability awareness is incredibly important for the fair and equal treatment of those living with limb loss and thousands of other disabilities. The more people understand what it's like to live like us, the more we can live like everyone else. 

We all wear prosthetics - Amputations and congenital limb differences can vary greatly. Lower limb amputations can happen at the foot, calf, knee, thigh, or even at the hip. Although prosthetics have come a long way since the wooden peg legs of the middle ages, they aren't always the best option for everyone. Some people prefer to use a wheelchair or arm crutches as an assistive device due to pain, discomfort, and/or instability with a prosthesis. In other cases, the cost of advanced prosthetics is simply too high without premium insurance. You might be surprised to know that lower limb prosthetics can range in price from $10,000- $100,000.

We want to tell you our story - I hate to break it to you, but there is no such thing as a beautiful story about how we lost our limb. It wasn't a sunshine and rainbows moment when it was detached from us either by traumatic force or a surgical cut. The key word here being traumatic. Most of us will be dealing with the mental health side effects of limb loss, to some extent, for the rest of our lives. Sharing our story should ALWAYS be our choice and never forced upon us by someone's curiosity. You may simply be wanting to get to know us, but please understand that you might be triggering deep-seated emotions that we have worked hard to leave in the past. We will tell you what we want when we are good and ready to do so. 

We are ashamed of how different we look - We can count. We are aware that you have more limbs than us. Sometimes clothes fit us differently, and when we wear shorts, you might see a big hunk of metal coming out of them. When you stare in disgust, it says so much more about you than it does about us. This is our normal. Don't assume that we aren't just as confident as Micheal Jordan on a basketball court in 1991, and please look us in our eyes when you speak to us. Children are the exception, and I personally look at their curiosity as an opportunity to educate them on something new that will help them understand more about disabilities as a whole.

Learning about one another only makes us better, more compassionate humans and leads us to a future where everyone has equal access and value. In the words of Lizzo, "If I'm shinin', everybody gonna shine."

For more information about limb loss, I highly recommend the following non-profits, organizations, and businesses. ROMP Global, Move For Jenn Foundation, The Amputee Coalition, The Liner Wand, Living With Amplitude Magazine."

What is osteosarcoma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can then spread to other areas of the body. Osteosarcoma (also called osteogenic sarcoma) is the most common type of cancer that starts in the bones. The cancer cells in these tumors look like early forms of bone cells that normally help make new bone tissue, but the bone tissue in an osteosarcoma is not as strong as that in normal bones. (American Cancer Society)