Five things about living with Erb’s Palsy that you probably won’t find on Google

by Guest Blogger on May 27, 2014

Kailyn Looby is 16-years old and has Erb’s Palsy; an injury suffered at birth that resulted in the permanent damage to nerves in her neck and shoulder. Despite the physical limitations of her disability, she enjoys soccer, hiking, swimming, rock climbing and kayaking. She loves music and wants to travel the world someday.

I’m a 16-year-old high school junior with a left brachial plexus injury (BPI). This injury has always been part of my life, and things got rough a few years ago. Here’s what I learned:

1. You need a good support system.

Kailyn Looby resize

You also need to surround yourself with supportive friends. I haven’t always had understanding friends, but when I got to high school, I met five of the most amazing, supportive people ever. That support makes all the difference. It makes everything easier knowing that you’ve got someone to back you up.

2. Meeting other kids with BPI is hugely important.

This injury has led me to connect with so many amazing people through organizations like the United Brachial Plexus Network (UBPN). I’ve met Paralympians and a man who summited Mount Everest. The other kids that I’ve met at Camp UBPN are so inspiring. I’ve made some lifelong friends. We compare hair styling techniques or surgery experiences.

It’s important, for me at least, to interact with people like me. No matter how supportive your friends and family are, the only people who can ever truly understand what living with this injury is like are other people who have it.

I’m not afraid to put myself out there when I’m surrounded by people like me. I tried archery at the last UBPN camp. I would have been much more hesitant trying it back at home, because I’d look different. It’s not something I can put into words—how it feels to be around people who get it.

3. Find your outlet.

Unfortunately, you can’t be at UBPN camp 24/7, so there needs to be an outlet. This injury can be frustrating, and it can make you angry, and sometimes it just feels so unfair. Find a way to let all the negative energy out.

My outlets are writing and music. I wrote down everything I was feeling. Getting it on paper helps me sort out what I am feeling. Music is my stress relief. When I have a bad pain day or am just frustrated, I plug in my iPod and jam.

4. Speak up.

I think it’s important that I have input in the decisions made involving my arm and treatment. That can go both ways though. There was a time when I refused to try anything, because I was convinced it wouldn’t work. Everything I had tried thus far had failed and I ended up in pain, and the slight chance that the newest idea would work wasn’t worth it to me.

It was important that I had some say in the decision-making process, but no one could convince me to take another chance. It’s a hard balance to achieve.

Also, don’t be afraid to educate people about the injury. It’s important to advocate for yourself. You’re going to have to explain it a lot—to classmates, to teachers, to coaches. I’ve got the spiel down pat. Speaking up has opened up a lot of doors for me. I’ve had the opportunity to speak for the Understanding Disabilities program in my town for several years. Last year, I had the privilege to speak as part of a panel at the John Hopkins Symposium in Baltimore.

5. The forecast is foggy, but the future is bright.

There is no way to know what this injury will throw at you. It’s bound to not be very fun sometimes. It took me three years to find a solution to my pain, but I found a solution, and so will you. The road to getting to the solution can be frustrating. There will be questions, especially when it comes time to drive, apply for a job or apply to college. You’ll figure it out. I’m going to risk sounding extremely cheesy saying this, but you can do whatever you want to do. This injury won’t hold you back from doing anything, as long as you don’t let it.

1 comment

  • sarahemilyshah

    Kailyn, I’m your 6th grade English teacher. I couldn’t be more proud of you! Great post. -Mrs. (Maltzman) Shah

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