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Memories of growing up with Erbs Palsy

I’ve been looking through old baby photos recently to see if I could find some pictures that show me struggling with my Erbs Palsy. One thing I noticed is that when I was a toddler, I really couldn’t tell! As I started to grow up and I lost the “puppy fat” my muscles started to develop and it became a bit more noticeable.

It’s strange how I have adopted an idea that I looked a certain way as a baby. When I actually took the time and looked properly, it wasn’t how I imagined it at all. In my head, I had an image of my arm being twisted up all through my baby life. I imagined people asking my parents, “what’s wrong with your babies arm?” I think life can be like this sometimes. We perceive things to be a certain way, we get inside our own head too much and start to believe things that simply aren’t true. We make up our own version of a story and we think of ourselves being a certain way, when actually people see you totally different to the beliefs you have fixed in your head. Many of the stories about me growing up with #brachialplexusinjury were told to me by my family members. Many of my memories are based on other people's perception and not my own, because I was too young.

It’s really opened my eyes and I’ve started re-thinking how I look at myself now. I can’t help but to look at photographs to see if my arm is noticeable, but I think it’s become a habit now. I need to break that habit and see it from a fresh perspective. This may sound a little mean, but nobody really cares what you look like. People are wrapped up in their own world and focused on what they are doing. I'm guessing 99% of the people we walk past on a daily basis won't remember us. That's not meant to make you feel bad, it's just that unless you're the queen walking past, people are just getting on with their daily lives and probably dealing with their own internal battles. Those people who do notice are probably just "people watching" and may think, "Oh, that person holds their arm differently. I wonder what's wrong"

"What I choose to think about will become my actions. My actions become my experience. My experience becomes my life and my life will become a memory."

Memories are a strange thing. They are fragments of an overall moving picture that are being perceived differently by each person viewing it. One person may remember one tiny detail from an event that lasts a moment, while others didn’t actually see that tiny detail and noticed something completely different. We are creating memories each moment of our life and how I view the world will affect my memories later in life. What I choose to think about will become my actions. My actions become my experience. My experience becomes my life and my life will become a memory. We need to make sure that the memories we create are ones that we can cherish, not ones that we look back on with regret.

I’m 34 years old and I’m starting a new journey with #erbspalsy. I have just started filming a documentary about living with erbs. It’s going to feature lots of stories from other people, be it positive or negative. It will document the emotional journey as well as physical journey, from young children to adults. I recently found an old video of me when I was approximately 7 years old. It showed my range of movement and me doing all the everyday tasks that a 7 year old boy does. At the weekend we started shooting the same thing as a 34 year old man. I think it will be interesting to compare and I’m excited to share this journey with you all.

Get involved

If you are reading this and would like to get involved by sharing your stories, please get in contact. I’m always interested to hear from other people with erbs palsy.

Much love x

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