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Limb Loss Awareness – Removing the Stigma

I remember when I first found out that I was going to lose my leg. I immediately became hyper focused on losing my mobility and became fearful of how others would view me. Would they look at me differently? Would they stare? Would they feel sorry for me? Would they be afraid of me? Am I going to be treated differently? Am I going to change?
I was scared. Scared of losing myself physically and mentally. I did not want to lose ME.  I was scared that I was going to become a new version of myself that did not resemble anything like the old Jenn.
Before my amputation, I remember wanting so badly to hide my leg.  I remember going online and ordering 20 (yes, 20) maxi dresses for life post-surgery. This was partially because I knew a dress would be more comfortable than pants after surgery, but it also gave me a chance to hide.
Soon after my surgery, my story soon went viral. At first, it was terrifying. Then, I realized that my story becoming so public was a blessing in disguise. It didn’t take me long to realize that my story could be used for awareness. It could be used to save another person. It could be used to normalize living life with a prosthetic.
Post-surgery, I woke up and realized that I felt like I could breathe again.  I think the actual surgery was so terrifying to me, that once it was over, it was as if part of the burden was lifted.  My chest was no longer tight.  I felt less anxious.  It was time to MOVE forward, heal, and get back to the old me.
Losing a limb is really hard. During my recovery while I was learning how to walk, run and be myself again, I realized that what I really wanted to do was to help normalize limb loss for others and to change the stigma. I may have lost a limb, but I was still me. I could still do everything I did before. I just had to find a new way to do it.
Also during my recovery, I realized that I was no longer the same person I was before my surgery.  I was a new and improved version.  The one who challenged herself to do more physically, who didn’t hold back, and who pushed herself.  I no longer sit on the sidelines.  I jump in and I am not afraid to fail.  I am also more empathetic than I was before to those dealing with trauma and anxiety.  Most of all, I helped show my community that limb loss doesn’t mean a loss of life, spirit, or determination.
For me, mindset is everything.  When I can focus on embracing change and challenging myself, I know that I am capable of ANYTHING. I want others with two legs, one or none to know that living with limb loss can be challenging, but you can DO IT!  I want people to look at me and think, “She can’t be stopped!” While learning to live life without a limb has been a learning curve, I have embraced what life has thrown my way. However, I still have hard days from time to time. I am human and it is expected.
The change in seasons can be hard. I was just telling a friend the other day that with summer approaching, it takes me about a month to get comfortable and confident wearing shorts and bathing suits again. Mentally, the first few weeks of spring and summer are draining. As I ease into a new season’s wardrobe, by mid-summer, I feel ok with myself again. I hate that those experiencing limb loss or limb differences have to go through these emotions each season. However, please know that these feelings are NORMAL and VALID.
Many people close to me don’t even notice my prosthetic anymore because it has become a part of who I am. Others that don’t know me as well may still stare or give inquisitive looks. While not everyone may feel the same, I welcome those with questions to approach me. I love engaging in conversation with people who may not be used to seeing someone with a prosthetic. It is another way for me to remove the stigma, spread awareness about sarcoma, and become even more comfortable living with limb loss.
Moral of the story?  Embrace others for who they are and what they look like.  Don’t feel ashamed of the battles you worked hard to win. A leg prosthetic is not something I EVER thought would be a part of my story, but it is a constant reminder that by choosing amputation, I chose life and I won. Why should I ever feel ashamed or less than for that?  I now know that I shouldn’t, but a reminder doesn’t hurt!
The next time you see someone in a prosthetic in your community, remember to smile at them. Remember they are just a regular person like anyone else. They may have endured some hard traumas to still be here. Remember that accepting others and teaching those around you, children included, to accept others as they are is so important. It is ok to ask questions in a non-judgmental and open way. Do your best not to stare. Engage in conversation if you want to and you feel the time is appropriate. Educate yourself. And lastly, if you ever have questions regarding prosthetics and amputation, you know I am an open book.
This Limb Loss Awareness Month, I ask you to help me destigmatize limb loss. Remember that people are people with feelings, emotions, stories, and trauma.  We just might not all look the same or have the same story.
Bring awareness.  Ask questions.  Normalize people being people, regardless of how different they may look.