A while ago, Danny, a friend of mine, commented on my writing, “You need to stop obsessing over the bloody brain. It's time to move on.”
At that time, the little he knew about brain injury he had learned from me.
About a week after my third (and hopefully last) brain surgery, I started writing about the bloody brain because I wanted to raise awareness about brain injury through my own experience. Since that nightmarish time, as I continue on my journey to recovery, as I continue to see the need, my conviction to raise awareness keeps growing.
I want to remind caregivers, families, and anyone else who comes in contact with brain injury survivors, that it doesn't go away. I want them to know that we are not malingering or over dramatizing, that our issues are real. I want them to understand that though we may look or seem fine, we are not fine.
I want newly diagnosed brain injury survivors to learn that they're not alone, that some of what's going on is actually a normal effect of the injury, that they are not dealing with their injury inadequately. I want them to realize that they don't need to be upbeat all the time, that it's okay to grieve for their losses. I also want them to know that for many of us, there is a light at the end of the tunnel and it's not an oncoming train.
Life is harder than it was before the injury, the nightmare doesn't disappear. But for many of us, it does lose its rawness. Things do get easier in time. Though it may not seem that way in the early days, the future doesn't have to be bleak. We may have to travel less, or cut back on adventurous activities, but many of us become more aware of our surroundings and see more beauty in it. Because we have to slow done, we have time to smell the roses.
In order to pass these messages along, I have to revisit my journey, through the dark times and the light. In doing so, am I obsessing? Am I preventing myself from moving on? What does it mean to move on? Is the expectation that I should put the bloody brain behind me, behave as though it never happened? Tell myself that it's over?
But it's not over. I'm not fine. I can't pretend it never happened. There are constant reminders.
To me, and to many other brain injury survivors, and various other survivors, moving on doesn't mean leaving it behind. It means learning to live with it.
We brain injury survivors learn to compensate for residual deficits. Some of us take copious notes to help us remember. I use a GPS to get around because I can't follow directions that involve more than a couple of steps.
We learn coping mechanisms to handle deficits for which there are no compensation techniques. All of us learn to slow down, to prevent fatigue as much as possible. I have to avoid situations where there is a high volume of sensory input.
We take meds for headaches or seizures, for depression and anxiety, for trouble sleeping.
But none of these methods are foolproof. The meds don't always work, I can't always avoid crowds. We tire all too easily get tired. Sometimes, even with a good night's sleep and a nap, exhaustion stalks us. And when fatigued, deficits triumph.
There are also deficits that I can do nothing about, they just are. My balance is bad when I'm tired or overwhelmed. Vertigo sometimes limits my movements. Occasionally, my eyesight becomes blurry.
Every so often, we can't help but become discouraged, we grieve, we get frustrated, and scared. In time, the frustration and the grief occur less frequently. But they never disappear altogether. Brain injury is forever.
For us, acceptance is learning to live with it. We learn to compensate and to cope. We learn to see good as well as bad. We learn to laugh.
Moving on is an ongoing journey.
I'm moving on.