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.