Thursday, April 26, 2012

I want to be an inspiration, said the liar.

A philosophical question came up when I went to the art exhibit with the BIANYC group. Elliette was describing why she chose to make a portrait of one little girl from a famous nanny/shaken baby case over another equally famous case. She said something about the positive vibe she got from the first family. It probably affected the girl's recovery, she posited, not focusing on the loss and the anger.

I understand the sentiment and I do my best to see the positive in every situation but... sometimes it is annoying. I don't mean that it annoys me to be positive or that positive people annoy me. What bothers me is that the poster person for any ailment is the inspirational individual who overcame the worst circumstances and emerged a ray of sunshine.

Okay, don't jump on me just yet. I love puppies and birthday parties and sunshine. I am human. It's just that sometimes when I am really angry, I would like to hear about someone who had a crappy day. I want to read about someone who woke up in the morning and realized they still had a brain injury and it still sucked. Do I want them to wallow and suffer? No, but I'm calling bullshit on the happily ever after story.

There is beauty in the pain and the ugly side to the struggle. I think I just wanted to see a portrait of a real person on a real day facing brain injury without a smile. It is hard. It takes a lot of effort to maneuver the day remembering to eat and rest, to leave the house without pissing someone off or forgetting something important. A person who faces obstacles and endures, with or without a smile, is pretty good in my book.

After my brain surgery, people called me "brave." I do not think it takes bravery. What was the alternative? I guess I could have taken my chances and risked living with a bleeding cavernoma in my brain stem. I could have kicked and screamed and cried with fear as they dragged me into surgery. I just lay their on the table oblivious while they cut off my ear and peeled it back so they could burrow in and take out the tumor. I woke up and that was how I knew I was alive.

It was five years ago today. It is my second birthday. I lived and here I am but it has not been fun. It has been a nightmare that I could not believe at times. I lost my joy in my job. I was loved as a teacher and then I was loathed. It made no sense to me. I was trying so hard. I do count my blessings and I am grateful for what I have. I have made some really wonderful brain-injured friends who get it. I am still frustrated, still working at being okay with what happened. That struggle, that reality, is what I find a comfort and that is what I want to see in art, in life, in memoirs, in documentaries. Who is representing that guy? I feel inspired to find a way to tell my story, not to inspire others, but to acknowledge that I am.


Crystal said...

I understand what you're saying. Sometimes, you need to hear someone else say 'you know, this sucks, this really flipping sucks.' Everyone needs validation of their suffering, it needs to be acknowledged.

The reason many flock toward the positive with any type of injury is that it gives hope. What is the alternative? Hopelessness? Despair? And when we have no hope of any sort, there is no point in getting out of bed, loving someone, cooking a favorite meal, seeing a friend...what is the point of anything?

We have to not have the victim mentality. It isn't fair that this happened to you. Yes, people misunderstand you because of the injury. Understand that they misunderstand. Don't blame others. Don't be a victim. You're far too vibrant and strong; you have too much to give.

Aly V said...

I totally get that. I appreciate your encouragement. I don't feel like a victim. But, hope is a tricky one. I think what I am trying to say, the feeling I want to distill, to articulate, is this: smiling, happy people do not give me hope.

When I saw Diane Sawyer interview Gabby Gifford, it made me so angry. First of all, it is so amazing that she is alive! She was clearly a positive person who smiled a lot even before she got shot. Her husband is awesome, standing by her in the public eye. What bothered me was Diane Sawyer's pressing questions, "Do you think you will go back to Congress?" WTF! The woman is learning to talk again and she is working so hard to do that. Are you out of your mind, Ms. Sawyer? Give the woman a chance to celebrate this victory!

That is the kind of hope that I do not find helpful. Yes, work and dream big. The difference is accepting your limitations and working within them versus going around saying, "Nobody can tell me what I can and cannot do," like Locke from Lost. That was me for the last five years. I did not stop teaching because somebody had it in for me as much as I wanted to believe that. I stopped because I have a brain-injury and could no longer do my job.

Crystal said...

Oh yes! You are totally right! I was reading a magazine in the waiting room for one of my appointments and saw an interview with her - I hated how the writer tried so hard to make her appear 'normal' waiting until the very end of the article (which most people don't even get to) to note the many obstacles she still had to tackle and how she could only say a handful of words.

People just do not understand a brain injury. I wish there was a machine that mimicked it without any damage done to the person. Just so people UNDERSTAND. It's indescribable. People see you and think - she's fit, looks healthy, she's just using a brain injury as an excuse!

And yes- acceptance is so important. I found that helped me most in my recovery! And btw, Locke was my favorite character :)

Laurie said...

I forgot your description of the horrible Diane Sawyer interview! I can never get it out of my head. Dianne was condescending, talking to Gabby in that sing-song-y voice, "and are you angry?" She turned to Mark for any substantive questions assuming Gabby had nothing to add. but he held his/their ground.I'm sure he's tough with her & himself, but he treats her as a him she was the third person in the room - the one who's story it was, and he just helped with expressing her words.He is straight with her, without pity or hovering. Just love and confidence, and knowing life's hard. My opinion of him shot up as diane went down the toilet.