Excerpts from Rebooting My Brain:
“I believe things are worse for those who can clearly remember trauma than they are for those of us experiencing it firsthand. Our own memories often protect us from ourselves, but it’s a lot harder to strike those images from the minds of the loved ones around us.”
“By the time Scott got his first inkling of the situation, he was back in the hotel room, where Carrie was sitting on the bed. As he walked in with the phone glued to his ear, she felt a nervous energy in the air, and within seconds she was trying to decipher exactly what had gone wrong.
All she heard was his side of the conversation. “Yes. All right. Which hospital? I understand.”
“What is it?” she asked, but she was already crying, because she knew that whatever it was, it was life changing.
They sat in stunned silence for a few minutes. Then they called to cancel their trip home to Indy.”
A neuro ICU specialist then told him that he needed to drill a hole in my skill and insert a draining tube to flush out the blood and alleviate the pressure.
“Oh, yeah. Right. Of course,” Paul responded. Wait….what? Drill a hole in my wife’s head?
Paul later told me, “That was the point when things shifted from being bizarre and scary to becoming a series of routine check points. They were going to drill a hole in your head and I was expected to just accept that. After that, things that would normally have been extreme or strange simply became a normal part of the process we had to go through to make you better.”
That’s the amazing thing. We all think our lives and work are so busy and important and we couldn’t possibly take a break from them. We just keep running, running, running on the treadmill for fear it will all go to hell if we jump off. We check our voicemail every five minutes, we freak out if we forget our phone when we’re running to the grocery store, and―God Forbid―we decide not to check email while on vacation. But when tragedy strikes, time just stops. And you know what? People adapt. Nothing, nothing is so important that it can’t be worked around, no matter what anyone says.
…Unless, of course, they are performing emergency brain surgery.
The love and support around us was amazing and to this day still knocks the breath right out of me when I think of the countless acts―big and small―that people did…for us. It’s both humbling and overwhelming. Not only does your own life stop when there is a crisis, but others willingly put their own lives on hold for you as well.
Tears welled up as I stared in the mirror that day for the first time: my left eye was still red and swollen from eye surgery, my face was pale and gaunt from all the weight loss and my hair―my signature, my trademark, my one pride and joy―was hacked to bits. I realized for the first time what a tiny little “pea head” I had hiding under all of that hair. I felt so small, like part of me had disappeared.
Who was I if I wasn’t the feisty curly-red-haired girl anymore?
I guess I was going to have to find out.
Whoa, I thought. I have a helluva long way to go.
Looking back, I thought I’d be able to get back to our normal routine together in a matter of days. Naiveté can be a friend if you happily forge ahead with no idea how high the mountain is to climb. You just push forward in your ignorance and don’t stop to listen to anyone. I wasn’t thinking about my sight issues or the overwhelming fatigue I would have to spend months―and even years―fighting. I didn’t yet know about the depression, the forgetfulness, the frustration I would face in the times ahead. One step at a time—that’s as far into the future as I thought.
But patience―a virtue with which I’ve always struggled―finally had me by the throat and I was going to have to listen if I wanted to pick up my life again.
More importantly, I learned during the many months of recovery that having more patience and acceptance didn’t mean I wasn’t ambitious anymore. Rather, patience was simply something I was going to need more of in my life if I wanted to get off the explosive track I’d been on that had caused the aneurysm in the first place.
It dawned on me that this was the beginning of reframing the way I live my life―if I wanted to have a life to live.
I had not yet learned all I would learn about what was going on in my brain. Since I felt fine, could speak, could recognize people, and could read and comprehend, I thought this whole “getting back to my life” thing would be a piece of cake. Physically, I knew I needed work. But that was much more tangible. How do you tell someone they are not as good at “prioritizing” until they actually need to prioritize?
I’m not sure any other type of bodily injury can have quite the same impact on who you are as a person as a brain injury can. I mean, your personality defines who you are, no matter what you are physically capable of. If that gets altered in any way, are you really who you were? Or is your identity something deeper, in your soul? Aren’t we really just the sum of the personality traits we act on and the feelings that we have?
And at least now, my cognitive issues had names and I was aware they existed. Know thy enemy, they always say. Articulating my issues was the first step to conquering them.
Maybe emergency eye surgery was not so bad. I’d already proven I had the strength and acceptance to handle whatever else this crazy situation might throw at me. This was once again a slap upside the head to quit my bitching and to realize that I wasn’t even supposed to be here.
When you get yanked out of your life―by crisis, death, illness or catastrophe―it’s hard enough to get back on track. But when part of what yanked you out actually impacts your initiation, focus and mood, it’s like a double whammy.
I think the secret is part stubbornness, part denial and part pure gumption. And having a support system―and amazing resources―to kick your butt quite a bit along the way.
My point is, fight. Fight as hard as you can against the inertia, the self-pity, the doubt and the fear.
I’m not suggesting you fight reality like I did at first―it’s about accepting reality and working with it. But play to your strengths. Don’t listen to anyone who tries to define you by your deficits. Learn how to work around them.
Coddling and reassurance had worked for the early days of my recovery. But eventually that can just turn into your own prison as you hide from the world. Sometimes it’s better to face the fear head-on, over and over, and talk the talk until you finally relearn how to walk the walk.
Fake it until you make it, baby. It’s painful but it works.
Did I come back wiser, more thankful, more aware? I like to think so. Even when stress takes over and I’m overwhelmed, I try to at least take a second and say aloud, “You’re still here, Maria. Nothing else matters.” And I breathe again.
So I went to my appointment and then drove home. Eddie greeted me like a rock star at the door, wiggling his butt, wagging his tail, doing his little happy dance and demanding attention as if nothing had ever happened in our lives.
Gotta love dogs.
Even though I had a ton of things to do, I left the computer off so I could snuggle with Eddie for a while, smile at the sun on the patio outside my office, and thank God for not being ready for me yet.
And then I went back to work.