I posted a video on Instagram recently saying how I like to think of people with ERBS are
E - Empowered
R - Resilient
B - Brave
S - Strong
I had an amazing email sent to me a couple of weeks ago from a lady called Stephanie, who opened her heart to me about living with #erbspalsy which is something she'd never done before. Erbs Palsy effects us all in different ways both physically and mentally. Personally I'm focusing on the physical side of things, but I'm conscious there are emotional issues I need to deal with. Some people can't get to deal with the physical issues, because the mental issues are stopping them. It's a vicious circle for some people and one that needs to be broken. Stephanie was so incredibly #brave to talk about her issues. She was #strong to make that first step. After that first step is taken she will feel #empowered and through that she will be #resilient in beating her anxiety...
My name is Stephanie and I have Erbs Palsy in my right arm due to a shoulder dystocia at birth. Up until recently, I never knew of any other person with this condition. I’m not sure how “severe” to classify my injury, though looking through some other people’s stories on the internet; it seems to be on a moderate scale. I cannot lift my arm from my shoulder at all. I can move my forearm in and out to some extent, though it will not completely straighten, even with force. If I keep my wrist flexed inward, I have decent use of my fingers. If I try to straighten my wrist, besides being difficult to do, I lose the mobility in my fingers. My wrist also sits at a downward angle. If I tilt my head down, I can touch the top of my forehead or ear. I cannot reach the back of my head at all, nor put my hand behind my back.
As far as the effects on my daily living, I would say that I have minimal physical issues. Since my arm has been paralyzed since birth, I have just learned my own way of doing things and I don’t know any differently. Sort of like, if an alien landed on Earth with three arms, they would think everyone was at such a disadvantage for only having two. But people wouldn’t see it that way, because they are all used to having only two arms.
Yes, there are some things that I need to do differently. Usually, I don’t even notice that I am doing them differently, unless I see someone else doing it the “normal” way. I lean on the counter to put my hair into a pony tail. I reach over the steering wheel to put the keys in the ignition and start my car. I balance objects on my head while getting things off a high shelf. I type just fine with one hand. While I have found a way to compensate for most things with my good hand, there are the times when there is something I just can’t do myself. It’s not nearly as often as one might think though. I’ve accomplished lots of things, some might say in spite of having a disability, though I think they are all pretty great things to do regardless. I graduated in the top five percent of my high school class. I played the violin in my school orchestra. I was an editor for my high school newspaper. I was a member of student government. I double majored in physics and education and went on to get my master’s degree in technology. I am married to my high school sweetheart and we have four beautiful children. As a military spouse, I have done the “single parenting” gig many times, as well as moved households every year or two for over a decade.
"Whether it was seeing the way my arm bends in a picture, looking for the pair of lefty scissors in the class bin, or shaking hands with someone. Even the littlest things could send my mind into overdrive. It was such a relief to find other stories of people going through the same things as me."
Other people feel the same way
While the physical limitations are real, they do not affect me nearly as much as the psychological issues I have about my condition. I was shocked to find there are other people out there with the same thought that I have. I truly believed that I was the only one with these crazy, irrational thoughts that made no sense. For my entire life, any time anything even remotely related to my arm was brought up I would get this terrible, horrible, no good, very bad feeling, to paraphrase Alexander. Whether it was seeing the way my arm bends in a picture, looking for the pair of lefty scissors in the class bin, or shaking hands with someone. Even the littlest things could send my mind into overdrive. It was such a relief to find other stories of people going through the same things as me. I share my experiences here in the hopes that others can find that same connection.
I have many irrational thoughts about my arm. I remember not wanted to play in my school orchestra for fear that teachers would see me playing the violin and think that I was “faking” my disability. I do not like to exercise, even just going for a walk, for fear of looking “too athletic.” If I keep up the unathletic appearance, then my not participating in anything involving arms can be attributed to my lack of athletic ability, and not my physical disability. Growing up, despite being very bright, I would always question in my mind the validity of my academic grades as soon as I knew a teacher was aware of my arm. I was convinced I was getting pity grades. I am significantly overweight, and despite trying to lose it, I can’t seem to succeed. Subconsciously, I would rather be known as the “fat girl” than the disabled one. I am aware that all of these thoughts are ridiculous. I can see that, but the thoughts are still there despite my logical mind telling me that they don’t make any sense. I’m not sure how to change them, but I am hoping that expressing them will at least start the process.
I can vividly remember any time I have had to tell a person about my arm. I avoid it like the plague. No, that’s not true. I would rather run toward the plague than talk about my arm. So when it does happen, it is a big deal. At least in my mind it is. I feel like there are a ton of bricks sitting on my chest. Anxiety rakes through my body. I then avoid the person who I spoke to for days, weeks, even months at a time. In my mind, I need to give them time to “forget” what I told them before I can interact with them again. Again, totally irrational, but still happens. I will think about the interaction in my head, replaying it over and over, creating that terrible, horrible, no good, very bad feeling that lasts for way too long. If I think about any of those times, even now, I get that same feeling as if it just happened today.
Needless to say, I try to prevent that feeling by never talking about my arm, to anyone. It’s sort of an unspoken understanding with my closest friends, who have been a part of my life for almost three decades. I’ve never come out and told them that I have Erbs Palsy, but I’m sure they know something is wrong with my arm. I’ve even gone to therapy for my anxiety and still managed to skirt around the issue and not discuss it. I told my husband in an email, before we started dating, and never mentioned it again. In the 17 years that we’ve been together, if I do need to deal with my arm about something, I talk around it, never actually saying the words. My children (ages 10, 8, 5, and 1.5 years) are getting old enough now to start to question why my arm looks different. I might have brushed it off with a quick “because it is” and suggested snacks to redirect their attention. My parents never talked about it. They had good intentions. I think they pretended it didn’t exist, so that others would act the same way, meaning that I wouldn’t be treated any differently growing up. While I can understand that, it created a sense of “taboo” about the topic. I think that I am so uncomfortable talking about my arm because I was never shown how to. I haven’t had any examples in my life to know how to talk about my feelings dealing with my arm. I have only lived the “pretend it doesn’t exist” mentality. Thanks to reading some really great posts from people like you, I can see that it’s time to change that. I have to acknowledge that I do have a disability, accept that, and stop fighting it. I hope that there are some people out there reading this who are able to relate and gain some peace from the knowledge that they are not alone.
I'm so proud of Stephanie. To be be brave enough to now share her story with the world is inspiring. If you connect with this story, then know that other people feel the same as you. You are NOT alone. As I've said before, we are a team and we are in this together, through the hard times and the good.