Live Life to the Fullest: Chapter 1
Sometimes, when people are talking to me, I hear the words coming out of their mouth but I have no idea what they’re saying. “Wah wah wah…” is all I hear. Then eventually I catch a piece of the sentence and infer what was being said. I’m not being rude, really. There’s just a chorus of other thoughts in my head trying to get my attention while your thoughts are being spewed into my brain, trying desperately to be processed. I know this happens to everyone, but when this happens to me, I want to scream because my brain just won’t work. I have a brain injury caused by an Arteriovenous Malformation *AVM) that I was born with. It burst when I was 10 and I had to have emergency brain surgery. I want my brain to work. It’s not that I’m not intelligent enough to understand what you’re talking about. I need time to process what’s going in my brain. Some days it works great, others- not so much. The best and worst part of this whole thing is that unless I told you, you’d never know what was going on.
People say “It’s a miracle that you’re alive!” “You do so well!” Not many of those people had to live with me or see my daily struggle. I was told to learn coping mechanisms so that I could live like everyone else. To this day, I still wonder why because I’m not like anyone else. None of us are exactly alike. I developed my own way of dealing with life, just like you.
I tried to hide my struggle for years, and at times, my life seemed like a fraud. I’ve achieved all this stuff, but I have screamed and cried through it. Does that make my achievements more or less meaningful? Every step I took in my life has required me to learn the best way for me to deal with whatever I needed to do.
“Live life to the fullest.” “Live everyday as if it were your last.” “Life is too short.” These phrases have always boggled my injured brain for much of my life. I hate the month of July. I don’t sit around and sulk in my red white and blue cupcakes, but July makes me anxious. Something stupid always seems to happen. One year my car was stolen and was totaled. Let’s not mention that July is just hotter than hell. This all goes back to that first event that changed what July was for me forever. An event that could’ve turned out much worse than it did, but sucked nonetheless. On July 25, 1997, when I was ten years old, I had emergency brain surgery to repair the AVM in my brain. I almost died, and a lot of things were taken away from me at a young age. I wish I could make it all go away and forget it, but it haunts me. I live with the after effects of my surgery every single day. At the same time, for years, I have listened to the world tell me to, “Live life to the fullest.” Part of the journey is accepting that the “full” life each of us leads is very different.
The day that I had brain surgery is a time of celebration and joy because I’m really thankful to be alive. I have overcome so many obstacles. I’m a “miracle,” according to some. I want more than anything to “live life to the fullest,” but I’ve been told that I was “too stupid” to be in a certain class, that I will “never get it,” so I should just “give up.” I’ve been told, “Something just seems a little off about you.” I’ve been told that I’m, “good, but just not good enough for this job.”
I wonder…I wonder what every single one of the painful situations in my life would have been like had I never had brain surgery; if I were actually given the ability to “live life to the fullest.” I know that I live a “fairly normal” life, but the world doesn’t get it. No one has to be me on a daily basis and face trying to live a “normal” life with a brain that works just a little differently than everyone else’s.
I still wonder:
Would I have made more friends if I had a “normal” brain?
Would I have been able to achieve even more in school if I had a normal brain?
Would I have a different job if I had a “normal” brain?
Would I have spent so many hours crying, if I just knew what it was like to be “everybody else?”
Part of me says that I would never change where I am or who I am, but another part of me asks, “Why?” and “What if?” There’s no great definition for normal, but many times I feel lost in a world that will never understand. The older I get, the more I resent the struggle of living with an injured brain. There are plenty of great things in my life, and great things that I have accomplished. Did I accomplish them because of my brain
injury, in spite of my brain injury, or was I just lucky? For better or for worse, my brain injury is a part of me. What I have learned is that it doesn’t have to define me. All I really can do is live every day, and do the best I can. I certainly have learned all too well, too soon, that any day could be my last. I also know that “making the most of everyday,” is impossible sometimes. That being said, after living much of my life in fear, I’m never going to pass up a chance to get on a roller coaster, or jump out of a plane. I spent too many years being scared of life.
I used to play it safe, because I was dealt a crappy hand without even placing a bet in the first place. Life is freaking hard whether you have a brain injury or not. There’s no formula. All the positivity in the world can’t make every day good. The next time you tell someone, “Life is too short,” think of me. Think of my uphill climb, where I’ve been pushed down so many times. Think of all the people with injured brains, who continue to get up day after day and fight.
Any illness is unfortunate, but a brain injury is one that will never truly see an end. It just is. There are people who have died from the same brain injury that I suffered. That’s what gives me the drive to keep fighting. I’m here for some reason. Maybe it’s to tell the world exactly what it’s like to live with a brain injury.
I wanted to write about my experiences in hopes that I could help someone else who might be struggling. We live in a society obsessed with fixing things, especially ourselves. My experience with brain injury has been one where I have discovered that there’s a difference between healing, coping, and living. You can live well if you understand the difference between them all.
Most illnesses have a definitive outcome: either you will live or you die. Brain injuries are one thing that can be a “gray area.” You can survive, but life will never be the same as it was before the injury. You can live in the bounds of your brain injury, or you can test them. Neither choice is easy. For me, I’ve carried out the majority of my life with an injured brain. I don’t really remember what it felt like not to struggle.
This collection of stories was going to be a book. Yet, a book felt too formal. As someone who works in social media and who has talked to countless AVM survivors, I felt that Medium was an excellent format to share my story- to share our story. My hope is that the world may become a little kinder of a place if we all can come to understand that we all have struggles, even if they’re never seen. I hope you’ll find some value in the stories we share here. These are stories of how seemingly everyday life events can be just a little more difficult when you’re living with a brain injury.
