I love it when people with Erb's Palsy overcome their injury and go on to achieve awesome things. I like to think of people with Erb's as a team who are looking out for each other. Mesa Smith has brachial plexus injury, which led to a career as an occupational therapist. I found the following story very inspiring, hopefully you will too.
I did not understand how I was different until I was almost 7 years old. I remember learning how to do pull-ups in gym class, and cried because it was so hard and no one helped me understand why. I went home in tears, and my Mom helped to explain what was so different about me. We started to look through baby pictures, and I realized I had always been different. I learned to crawl on my elbows, had premature hand domination, and when I’m sitting down, my arm is flexed to my chest in a comfort position, or shoved down into what medical professionals call “the waiter’s tip” position.
I want to explain to you first that I am very fortunate with my #erbspalsy in that I have a pretty functional arm. I can do just about everything someone with two perfectly normal arms can do, just in different ways. Some people that have Erb’s Palsy don’t get movement at all in their affected arm, have high tone, have to take medications like baclofen, or wear crazy casts/splints that put your arm above your head in external rotation all the time. I am very lucky to only have involvement of C5-T1, and my injury actually gets better as it goes down. This means that my shoulder and biceps/triceps are pretty impaired on my right side, but my hand functions pretty well (besides having delayed wrist extension), and my sensation is impaired.
I also never had surgeries growing up, partially because we lived in a rural area with no real knowledge of what to do about my arm, and partially because my impairments were not as severe. I did not move my arm until I was a year old, and I still have limitations with my shoulder and arm, as well as high tone sometimes. I went to occupational therapy as a young child, and was lucky enough to have a stepmom who was an occupational therapist as well in my middle childhood years. Still, my injury affected me in both awesome and not so awesome ways.
"I try to get people to think about every single part of their day, and think about how their injury will get in the way. And then we work on ways of fixing that. I get to talk to new moms who have just found out their baby has Erb’s Palsy, and let them know it’s going to be okay."
I love silver linings, so I want to talk about the really awesome ways my injury has shaped me. I am an occupational therapist myself (I’ll give you one guess why!) and I get to work with people who have #brachialplexusinjury occurring later in life, as well as people who have had strokes or brain injuries. Often after a stroke or brain injury, patients will have upper extremity involvement, which makes it difficult to function in their day-to-day lives. I only had the drive to become an occupational therapist after seeing the difference it made in my life.
Erb’s Palsy isn’t about getting movement back in your arm once you reach a certain age. It’s about learning to function to the best of your ability with what you’ve been given. As an occupational therapist, I get to help other people function better with what they’ve got too. I think kids that have Erb’s Palsy as a result of a birth injury are some pretty resilient kids. They don’t know anything is different most of the time, and they find ways to make it work. It’s usually not until those same kids are a little older that they realize things are a little different, and even then, we just use it to make us stronger. Don’t mess with a BPI kid! We’re pretty tough because we have to be.
Dealing with frustration
On the other end of the spectrum, the people that I get to work with have always had normal arm function until their injury. I have patients look me in the face and ask me exasperated “how can I live alone if this arm doesn’t work?” They get frustrated, and don’t have the same resilience these kids do—yet. These adults who have been in motorcycle accidents, ripping out spinal nerve roots in their brachial plexus, or who have had a stroke and don’t have full return of their arm yet, are struggling to come to terms with the reality that this might be their new normal. I get to pick up both my arms, one only about halfway of what it should be, and tell them all about how their new normal goes. I get to tell them about the frustrating parts, like you can’t do things overhead if it requires both your hands. I get to also talk about the personal, more intimate parts of our daily lives, like you can’t put on a bra like you did before, or my personal favorite, try wiping your butt with your affected arm (but really don’t because that’s not the time nor the place to be discovering limitations).
I try to get people to think about every single part of their day, and think about how their injury will get in the way. And then we work on ways of fixing that. I get to talk to new moms who have just found out their baby has Erb’s Palsy, and let them know it’s going to be okay. I wouldn’t get to do anything like this if it weren’t for “nemo,” what I lovingly call my arm. I know it makes me sound like a superhero. But in reality, I just have Erb’s Palsy.
I love reading and sharing other people's stories about Erb's Palsy / Brachial Plexus Injury. It's so important to know that with enough determination and motivation you will be able to adapt and do the things you want to do. The fact that Mesa has gone on to be an occupational therapist is incredible, showing that you can use your injured arm to help and inspire others.
Thank you so much for taking the time to write this. You can follow Mesa on Instagram @mesablues
Much love x