DAILY LIVING & MOBILITY

Navigating Life with a Limb Difference

Congenital Limb Condition

Sarah Tuberty

What happened to your hand?

In being an individual with a physical difference, there always seems to be the encounter with people of daily life with the recognition and request for explanation as to why this “non-normal” aspect of my body exists. Almost every day of my life (and yours too I am sure!) there will be or has been this transaction. It used to generate so much anxiety that I would go to great lengths to avoid people in public, attempts to hide it and as Goffman (who developed a Social Stigma Theory) states in my attempt to “pass as normal.”

There's Always a first

This past week as I was getting ready for work, I was painting my nails, reflecting on the first time I had a professional manicure. I believe it was for my 8th grade graduation. I got square French tip acrylic nails with a little pink flower rhinestone on my ring finger (can you tell this was 2004???) I walked into the salon and sat at the counter and was incredibly shy. The shy part being a pretty common aspect of my younger years. The nail artist asked me to bring my hands up onto the table, so I brought up my right hand. She cleaned off my cracked obnoxious colored nail polish. She said ‘next’ prompting me to bring up my left hand to do the same. At I just sat there keeping it hidden in my oversized sweatshirt. She looked at me, repeating the request. I said ‘um.. uh.. only the 1 today.’

Internal struggle with my limb difference

Immediately embarrassed and somehow ashamed. My mind raced and my anxiety heightened as my 13 year old self tried to decide how to explain myself. Truthfully dreading the fact that I do feel like I have to explain myself and that there is always something “wrong” with me, that it seems unfathomable that someone can simply exist like this. People seem to be surprised, and confused and often have a lot questions. I wished that I could navigate my life without this constant conversation, sometimes it can take forever! The regret I felt for even wanting a manicure in the first place, as at this moment I just felt stupid. These thoughts fought against the want for the social participation in being a girl who can get her nails done, feeling like this is some basic activity that I should be allowed to experience. While navigating through this internal battle, on the outside I just sat there.

So what do I do?

The nail artist looked at me confused and said ‘you only want one hand done today?’ At which I replied ‘um, yes, only the one.’ Do I show her my hand? I should right, that would make this make sense? But I didn’t want to, why don’t I want to? Show it? Not show it? Ahhh! She stared at me for a second. I kept my left hand in my lap and probably looked down, ashamed of the whole ordeal and wishing it would get resolved quickly. She then said ‘Ok, one hand.’ I don’t believe that I ever took my left hand out of my lap. This was how my 13 year old self chose to deal with this situation. It was effective I suppose, I was able to get my nails done and they looked great! However, I keep thinking “there could have been a better way!” Maybe this is true with everything.

What happens next time?

I know these interactions will continue with all of the people we interact with in passing who won’t necessarily be cast in roles in our lives. How do we best navigate these conversations? It can be exhausting to continuously explain myself all of the time, unsure of how people will respond. Sometimes people are really friendly, sometimes people don’t notice, sometimes people aren’t as nice as they could be. There were times where I felt it was my responsibility to explain myself. My fear of this conversation prevented me from using my hand more, and I wore sweatshirts in the heat in the summer time in efforts to pass as “normal.” However, as I got older and worked through my insecurities and asked myself a lot of self-awareness questions, trapped in endless “why do I feel this way?” and “what about this experiences makes me want to avoid this?” I was gradually able to come out of the fear of these types of conversations.

Nails on fleek

Now, it is a part of me. I feel comfortable and confident in using my hand for the things I need to and want to. Sometimes people ask and then I explain other times people don’t ask and I don’t explain. It all depends, however I am not afraid of that interaction anymore. I can now comfortably walk in nail salons and get a manicure if I wish. I put both hands on the table and sometimes the nail artist will massage my left hand as well as the right. Sometimes I get discounts.

Endless Why's lead to self discovery

I really believe in the power of the “why” question. I think about that a lot, “why am I anxious right now?” Keep following these whys and there will be some great self-awareness, recognition, acceptance, and potential for change if you find the answers to your whys don’t match your desires. Also important on how we ask about other people in our lives. Everyone has something they are working through. I believe in mutual respect!  I would love to hear how you navigate these hard conversations!

Photos

I was actually sitting on the toilet clipping my nails and reflecting on my first manicure. I then thought I needed to share this, I believe in the authenticity of it. I then moved into my room and painted my nails on my desk. It is hard to video tape yourself haha! Any recommendations to make iPhone cameras easier to use for this blog would be greatly appreciated!

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