Massage

I haven't done physical therapy in a long time but my mom always makes sure I'm paying attention to my shoulder and doing something to keep it stretched and strong. Like I've said, yoga is one thing I do a lot to help open up my shoulder and build its strength. There are also certain stretches I try to do often that help. It's important to be aware of what I'm doing with my shoulder because brachial plexus injuries often cause pain or problems when you're older and that is one thing I'm sure I don't want. As unmotivated as I am most of the time to do anything for my shoulder, I know I have to. I've become accustomed to my shoulder how it is but if ignoring it means issues when I'm older, I'm willing to give it a little extra attention every now and then to avoid that.

The main action I take for my shoulder is massage. It's not just any ordinary sort of massage and it's not for everyone but I just want to share my experience with it. A while back my mom found a lady who did shiatsu massage and I did that for a while. I don't know a lot about it but I knew that I felt great afterwards and she was very confident in the progress I was making. She ended up moving away and my mom couldn't find anyone else similar so we kind of forgot about it for a while.

Eventually, a long-time friend of my family's who is a masseuse offered to help me. He did a lot of research on brachial plexus injuries and he knows an extensive amount about the body so even before my first massage, he knew what he was looking for and what he was going to try and do to improve my shoulder's comfort. Once again, I found that the massages felt great and my shoulder seemed looser after. He's been giving me massages for a few years now and he's done a lot for my shoulder. He's also given me stretches to do and suggestions for activities that could further improve my shoulder's condition.

Overall, massage has made my shoulder feel better and has also made me more conscious of how I am treating it. I'm confident that my shoulder would be in a much worse state without it and I would be much less aware of how it is doing. He always explains to me what he's doing and what's going on with my shoulder. It's given me a greater understanding of my arm's abilities, limitations, and improvements. Even if it's not massage, I believe it's really important that people are very conscious of their brachial plexus injuries so that they can prevent future (as well as current) discomfort.

The Little Things

Every day you wake up and get dressed and shower and eat breakfast and brush your teeth and do your hair and gather your stuff for school. But maybe your mom helps you get your shirt over your head or one side of your hair doesn't get shampooed very well because it's hard to reach and then your ponytail ends up on the side of your head for the same reason. Or maybe you add in some stretches for your shoulder every morning or you carry your backpack on one shoulder because it makes your other one sore. Or you have to ask your dad to reach the cereal because you already have the milk in your right hand and your left arm can't quite make it. Or maybe you do all of these things and more I haven't stated or maybe you do none of them or maybe your morning is completely different because you've changed it around to work for your brachial plexus injury. No matter what, I'm sure that every day you wake up and can't escape the changes you have to make with the little things.

Growing up, my mom would have to do my hair and dress me every day. I couldn't get my left arm up enough to do either. Showering was a pretty much one-handed struggle. I had to and still have to constantly ask for help with one little thing after another. It's hard. Asking for help can be really hard. Everyone is raised to be an independent person and when you have to constantly ask people around you to do a simple little thing that everyone else can do, it's a bit of a defeated feeling. Guaranteed, when you're little, you need help from teachers or parents or whoever a lot of the time anyways. They're always right by you and helping you before you even ask, no matter if you have a brachial plexus injury or not. But as you get older, asking for help seems more and more childish and less and less normal.

Through physical therapy and my surgery, my arm became stronger and more useful as I grew up and as it did, I learned altered ways to do my little things. They weren't always normal but I tried to figure out ways to do them on my own because that helped me feel better about myself. My ponytails were often slightly on the side of my head and I had to tilt my head to shampoo in the shower and I would need to put the milk down so I could reach the cereal with my good arm. I had to put bras and shirts on a little differently and I usually carry a purse on my right shoulder to keep from straining my left. But I could do it. Most little things I could compensate and figure it out. Of course I need help many days or people look at me funny when I do things differently but that's okay with me.

Now, I understand that your morning probably looks a lot different than mine and everyone's brachial plexus injury allows that they can and can't do different things. But I think as you get older you'll see that there is often a way that will work for you to braid your own hair or put on your favorite sweatshirt by yourself. And I'm always open to any questions about how I do that or how I think you could. But even if you can't do a lot of things by yourself, it's okay. Asking for help is not weak or embarrassing, it's brave. I know it's hard but I can say that most people are happy to help. Most people will think nothing different of you, so you should think nothing different of yourself. We're raised to be independent but there are rarely big things in life that we accomplish alone. Famously successful people did not get there by themselves. So if you start asking for help with the little things now, you just might be even more successful when you get to the big ones.

Sports

Sports are amazing for so many reasons. You get great exercise, meet new people, find strengths you never knew you had, feel like a part of something, take a break from the day, feel accomplished, and with a brachial plexus injury, find something you can do just as well or better than everyone else for once. I've slowed down with sports recently, quitting softball and only playing soccer on the high school team, but that doesn't mean they weren't invaluable to me growing up or even still now. At an age where time and energy are endless, sports are the perfect activities to start young. And with my BPI, they made sure I felt normal sometimes.

I played basketball from third through fifth grade, softball second through ninth, and soccer ever since I was four. Of course I tried other sports here and there but partially due to my BPI, these are the ones that stuck. That might sound weird considering basketball and softball are both pretty much sports you play all with your arms, but I figured out my own ways and made it work with those two because I liked them. I didn't quit either for any reason related to my BPI. I wasn't very fond of the uniforms in basketball and it seemed more of my brother's sport than mine so I let him have that spotlight. I lost interest in softball mostly because of the environment it creates because of the people involved including coaches, parents (if you ever really want to get to know someone, go to his/her daughter's softball game...that's when the truly crazy side comes out), and players. It's kinda sad cause I did enjoy it but I don't miss it much.

Soccer has always been my sport I think. I've played it the longest and enjoyed it the most. It is convenient that since I'm not a goalie, my BPI doesn't affect my performance at all besides throw-ins (which I do a pretty good job at avoiding) but I like to think it's mainly a coincidence that soccer's what I've ended up with. I never chose or stuck with it for that reason, I just love soccer because it's soccer. And I think that's how it should be. Through soccer, I've met great people, made great memories, and felt great about myself. And I think those are all insanely important things to have in your life.

Don't choose a sport because it's easiest for you or you're best at it or your parents want you to do it or it's what your friends play or anything like that. Don't let your BPI choose your life. So what if you love volleyball but you're not very good at it because of your brachial plexus injury? You can have even more fun than the varsity girls by playing at a rec level and I guarantee you'll meet super fun people. There are always ways to compensate or change things around so you can be happy doing what you love even if you're not ending up in the Olympics. Granted, I've never been a very competitive person but honestly I see no reason for you to waste these amazing years of your life being unhappy because you think you're being forced into only running track when in less than twenty years you're gonna have a job that leaves you only running every now and then for fun anyways. You have to start the fun now whether that means starting varsity football all day every day or rec soccer once a week! Choose what's best for you and makes you happiest, not the sport that everyone else is telling you will be the only one that works. I think, with an open mind, everyone should at least try sports because they can only bring you amazing opportunities and amazing people.

Friends

I've never really had a friend with a BPI or anything like that and sometimes that can be hard. Most people, especially kids, don't understand what it really is and even if they do, no one except the people with brachial plexus injuries really get what our lives are like. Most people I know don't even know about my BPI and the ones that do often forget. I've explained it to my closest friends but it still doesn't really make sense to them and I get that. It must be difficult to imagine what it's like to live without two arms that have nearly equal ability because they've never known anything different. But I do.

Sometimes it's really hard to live knowing how different I am and how much harder so much is for me just because my doctor messed up when I was born. It's hard to look at my parents and my friends and my teachers and my cousins and wonder what that feels like to freely lift both their arms over their heads, to easily reach for something with both their hands, to stretch their arms behind them. And no one really gets it. No one gets how much it hurts sometimes to know my life isn't normal and never will be and to know that I'll never know what all that normal-ness really feels like.

It's not easy to talk about this with people like my friends and family who don't feel the same way. But what I do know is that they will listen if I need them to and even if they don't really get it, they understand how much it might hurt just based on the fact that they can't even imagine it. I think knowing someone and having someone to talk to who mostly understands the feelings that this life provokes can be really helpful. I wish I had established that relationship with someone with a brachial plexus injury also when I was growing up and I encourage anyone to do so.

I'm not very good at sharing my feelings so my friends have no idea that it can be hard for me. Sometimes they laugh when I do something differently or my friend will accidentally hurt my arm by grabbing it in the wrong way. I always laugh it off and try not to let it bother me but there are definitely days where it does. That's when a friend who understands what I'm going through could be really essential. Even if you don't have someone like that, I hope you all have family or other friends that you can turn to. Don't let the fact that you're different scare you into turning into yourself about this and not turning to someone else. Let somebody listen to you. I guarantee that someone will and sometimes that's all anyone needs, someone to listen. And I hope that anyone reading this knows that I am here to be that listener too.

Surgery

BPI's can often be improved with different surgeries, and for that, we are lucky. I've had one surgery on my shoulder. I was in kindergarten when I had a tendon transfer to improve my range of motion and just overall function of my left arm. That surgery is one of my very first memories. Now, this story isn't meant to scare you. I want to show how it can be very frightening if everyone doesn't approach it in the right way, but ultimately it is a very simple situation with no reason to be afraid. The memory is pretty foggy but there are parts that I remember clear as day.

I remember sitting in the waiting room with my mom and one of the nurses and the nurse kept talking to me like I was a baby who had no idea what was going on. She would lie and embellish what they were going to do to my arm and I knew she wasn't telling the truth, and that's what ultimately scared me. Until then, I was fine. And just as the panic was setting in, she crouched down and murmured in a baby voice, "I'm gonna take your mom to get changed really quick okay we'll be right back." That's when I lost it. I wouldn't let them take my mom away from me for one second. Finally my mom escaped and quickly returned in a nurse gown and cap and everything. I remember not being able to let go of her after that.

 Finally, another nurse came out and she had this little dollhouse with a doll that acted as the patient and she showed me what was going to happen to me on the doll. That's when I calmed down. Now that I knew what was happening and that no one was deceiving me, I was fine once more. It relaxed me immensely. Well, for a little at least.

When it finally came time, they brought me into the operating room and put me on this metal table where they had to put the anesthesia mask on me so I would fall asleep. Once again, I freaked out. It took multiple nurses to hold down my writhing enough so I could take a breath from the mask. The next thing I remember is waking up with a giant cast on my arm that was held up by a wooden pole attached to another cast around my waist in order to keep my arm up. It was over, and I was okay again.

I was 5 years old and for that reason, yes, it was a little scary. What kept me sane, though, was having my mom with me and knowing she wouldn't let anything bad happen to me. Even more, the nurse who was honest with me halted my nerves because I knew that there was nothing to be afraid of once I knew exactly what was going to happen and that everyone was on the same page. After the surgery, my mom made sure that I felt incredibly proud of myself for getting through it. We made the wooden pole into a giraffe's neck and that always gave me something to smile at. When I returned to school, my whole class had written me cards and gave me a giant stuffed bunny. I felt really special knowing that I had been so strong by getting through my surgery and that I had such an amazing support system.

The surgery improved the limitations of my shoulder, especially with physical therapy. My arm is still very limited and my mom and I have been looking into further ones that might help but so far, we haven't found anything we're confident in. If you aren't ready or prepared or comfortable with anything regarding the surgery, figure that out first. No matter how old you are, surgery can be terrifying and the only way to avoid that is by first making sure you are fully prepared for the journey ahead.

Daily Activities

My PE teacher tells everyone to put their arms over their heads. I have to reach to hand a pencil to my friend in class. Someone goes in for a high-five. Putting my hair up for soccer. Just a few of the daily activities that no one thinks twice about. Except for me. Just a few things that are difficult or uncomfortable or awkward or potentially embarrassing. Some activities that spark the questions..."um...what's wrong with your arm?"

And they're things I must do everyday. No one realizes how much I have to compensate. How much harder it is for me to shake your hand with my left hand. No one even gives it a thought because they can't imagine having to alter their lives just to experience daily functions. I've spent my whole life figuring out how to adjust and how to hide it. I hate answering the questions. It's hard and it's repetitive and sometimes painful to see people's responses to the answers.

It's a completely different idea when you have an injury that affects your simple daily life than having one that you can work around and only really affects you every once in a while in specific activities. I deal with this every day. Every day I am reminded that I'm not normal, that I'm different, that a lot of stuff will always be harder for me. Sometimes it's things I don't even notice anymore, like putting my hair in a ponytail. Other times, like when I reach to hand my classmate a pencil, it makes me cringe because it means someone else notices and I have to answer the dreaded questions and avoid the confused looks.

I really try not to have a negative outlook on all of this but sometimes it feels inevitable. Other times I'm really proud of myself for figuring out a special way to do something new or when I stop and realize how different I've been doing something than my friends are (like putting my hair up) but still getting the same results. That's the feeling I love. Because most everyday activities are possible for us, it just might take a few tries and some extra practice with a strange strategy. Don't ever think of a different way as any worse because it just means you worked that much harder, making the result that much sweeter :)

P.S. Please contact me on the side of my blog if you have any questions about specific daily activities or anything else! I'd love to hear from you all!

When People Tell You "No"

BPI's have significant consequences that often stop us from being able to do things we want or even just things everyone can easily do. I've spent much of my life being told "no" or "stop" or "you can't do that." At times, I understand and I accept that it's something I simply cannot do because of the way I was born. On occasion, but less often as I've gotten older, I realize it's something I can't do, but I still can't help but resent how different my life has been because of my BPI and I get pretty upset. But even more often, when people tell me I can't do something, I deny it. I keep trying and tell myself I don't have to let my complicated birth stop me from leading a normal life of doing normal things.

An example of this most frequent reaction occurred just a few weeks ago. I do a lot of yoga (it's good for my shoulder!) and one day I was at a yoga class with an instructor I've never had before. She could see that I had a shoulder injury, and during a pose that was visibly difficult for me because of it, she came over and told me to just stop, that it was too much for my shoulder and I should just do something else. This really upset me. She had no idea what was wrong with my arm, yet she talked to me like she was the only one who knew what was best for it. I have been to dozens of yoga classes and had plenty of difficulty because of my shoulder, and I've learned to adjust myself when I need to. All my life, people have talked to me like they know what's best for my shoulder and I've never understood why no one gave me the responsibility myself to figure out what's right for me. If I'm the one with the hurt shoulder, shouldn't I be the one to decide when it's too much in yoga? So, I sat there for a little bit and then I realized this. She had no idea what I could and couldn't do. I would not sit there and just accept that I needed to stop when I myself knew that I was doing just fine. Sure, it was a little hard on my shoulder, but that's why I go to yoga. To work the shoulder that I rarely use otherwise. She didn't know this. I did, and therefore, it was my decision. So I got up and continued the practice. And I felt great afterwards.

Now, I realize that this can be a dangerous approach in certain situations. If you're hurting your arm and trying to do something that's just not possible right now, you should stop. But often I think we need to just listen to our own bodies and make our own decisions. We are the ones who will always live with our BPI's. I don't always deny people's help or suggestions or deny that I can't do something. Because I know that there will always be things I will have to sit out and people who will be able to help me make that decision. But as we grow up, it's important that we make some of these decisions ourselves because we understand our own bodies more than anyone else will ever be able to. It's okay to get upset sometimes when you can't do something. We all have and we all will. Because it's hard. It's hard to watch everyone else succeed at a task you can barely try. But because of my BPI, I am unique and I am strong, and I refuse to ever forget that.