Sunday, September 22, 2013

Peace, Wholeness, and Dignity

After missing nearly every school function for the three years since my brain injury, this year, I went to Parent Night, determined not to miss out on my child’s life any longer. I hired my neighbor to drive me there and pick me up, the expense adding to my fire and determination to be there, meet the other parents, and get involved.


The room was abuzz with parents talking, and a hundred conversations going on at once. The overstimulation and noise was a recipe for instant brain scramble and more than I could handle. I left the room, doubting my decision to come, and waited down the hallway. Feeling more than a bit foolish and anti-social every time someone walked by and told me the parents’ meeting was down the hall. “Yeah, thanks.” How long could I pretend to admire four student paintings for? Apparently 30 long minutes.


Finally, the noise dimmed down, the meeting was beginning. This was the cue I had been waiting for, and I walked in, wearing huge dark glasses and balancing with my trekking poles. The only entrance was in the front of the room, there was no hiding. The entire faculty and 150 parents watched me enter. The emotional stress of all those eyes staring at me, and all the psychic stress of all those thoughts coming at me were enough to put my brain into complete overload. The circuits went down. I was completely lost and frozen. I had no idea where my body was or where the floor was, I stepped into mid-air and my foot fell through it, like stepping down a stair that wasn’t there. I stumbled and then froze awkwardly, unsure where my body was. I had no idea how to move. Time froze with me in that eternal moment. I always sense time freeze when the shock of my injured brain dawns on people. This time it seemed multiplied by the numbers of people watching me.


In that eternal moment I could see through every person there. I looked at the crowd and saw that the room was equally divided. One third of the crowd was absolutely terrified by me, and at a loss for words. It was a look I had grown accustomed to. I represent the vulnerability we all have to brain injury and that horrifies people... me included. One third of the crowd was in judgement and disdain, wanting nothing to do with a weirdo like me. The remaining third were full of kindness and compassion and were ready to jump to help. The kind faculty saved the awkward moment, dashing towards me offering assistance and bringing chairs. It took three teachers to get me to a chair four feet from me while the entire parent body stared. This wasn’t the kind of “being a presence at my son’s school” I had in mind.


I should have been embarrassed and mortified. I should have wanted to run and hide. Here’s the amazing part: I didn’t. I would not have minded if that frozen moment actually did last forever, because in that moment of eternity I realized that I was at peace with me. No one else in the room might be, but I was. This was the moment I realized I had finally learned to accept this new me. There was peace in my being and a joy in noticing that not only had I learned to accept the new me, it was a deeper acceptance than I may have ever felt. I felt whole. I could have stood in that moment forever.


You see, the old me would have been concerned tonight about not knowing anyone, dressing right, looking right, saying the right thing, and needing to fit in. The new me does not have the mental energy or ability to have those concerns. I am concentrating on how to walk and how to see. That keeps me in the present moment, and in the eternal moment of NOW, there is no energy to waste on such silliness. The new me knows that I am different, I can’t fit in even if I want to. There isn’t even any point to trying to be like everyone else. I am free from that human plague: the deep desire to fit in. Not that I don't have the desire, I just don't have the ability, so I can't waste energy on it.


Later that night, in the math classroom, a geometry problem was posted on the board. The math teacher called on me to read it out loud. Of all the parents, he called on me. I sat there for a minute, trying to make sense of the bouncing hieroglyphics on the whiteboard. Florescent lights, bright white, and my visual processing don't get along anymore. The harder I tried, the more my brain couldn't translate the squiggly lines into any meaning. Long silence. “Um, I can’t read”.
He had called on the wrong mom. Trying to hide his discomfort, he kindly read the problem for me, and then asked how I would proceed. I had no idea what he was talking about.  My brain was not processing information right now. Another long silence. “Sorry, I don’t understand numbers either.” 

I had just admitted to the parents of my child’s classmates in this highly academic school, that I am an adult who not only couldn't figure out where my body was a moment ago, but who often can not read or understand basic numbers. Great. What’s a girl to do? Run and hide and never go out in the world again? Or hold your head high. Sometimes I run and hide. Going out takes courage. Always I chose dignity. I’ve had lots of opportunity to practice dignity in the last few years.

I have learned to carry myself with dignity in the most undignified moments. I have learned that dignity comes from deciding that loving yourself is more important than caring what other people think. I have let go of the curse of perfectionism, and embraced that being human means that you are an ever-evolving being and that you are not supposed to be a perfect finished product. We are never done evolving. And we are all imperfect, despite the image we portray to the world. Maybe our imperfections are lovable too.


I am moving forward, out of the house and into the world with dignity. Because dignity comes from the inside regardless of our incompetencies. Dignity is an inside job. It comes from a decision to learn to love and accept ourselves just the way we are, warts and all. If I can do it, so can you. Hold your head high. You are good enough, just the way you are, and that knowledge will make you whole.


Monday, September 2, 2013

I'm Three!

This summer I passed my third anniversary. When you acquire a Traumatic Brain Injury, you also acquire a new unforgettable date. Added to your annual markers of time (birthday, anniversary, and Christmas) is your TBI anniversary.

Survivors honor that significant date with a strange mix of melancholy, and reverence. 

This is the date that we learned that no matter how smart, or witty, or hard we try, we do not control life. That illusion of control is forever shattered, and deep humility takes its place.

It is more like a “death date” than a birth date. We all have the day we will die, that we pass every year and we don’t even know it. Having a TBI, we actually know our death date. On that date the person we knew as “me” died, and a complete stranger with the capacities of a newborn showed up in its place. We became a newborn baby all over again. Dependent and incapable, a stranger to ourselves and to our families. Like any newborn, it takes years to get to know this new person. We obsessively observe ourselves the same way we once observed our newborn babies for clues to who this person is.

Among my brain injured friends, I have seen process unfold like the stages of grief. The first year: sheer terror and confusion interspersed with a heaping dose of denial. “I don’t have a brain injury!” The second year:  more terror, and depression and despair as the un-ending reality begins to become apparent. “I have a brain injury and it’s not going away.” The third year: beginning acceptance and rebuilding a life with what you’ve got left. “This is my life. Now what??”. Now I understand all that I can't do, so what can I do?

Past my three year mark now, I am improving enough to start seeing a world beyond TBI. I can see myself re-joining the world one baby toe at a time. I can now imagine a future worth living and am grateful for my constant intense focus of the last three years "just keep your body alive and don't let the depression drown you". Not easy for someone as seemingly drunk, disoriented, and visually impaired as I am. I have kept my body alive long enough to see the light.

I feel like a toddler, nervous and excited to be off to pre-school and to see what the future holds.