Aly's Angioma. I had a concussion when I was 11 and then 4 years ago a cavernous angioma bled into my brain. I had brain surgery to remove the tumor from my brain stem. In this, my second life, people do not see ME anymore.
Something very cool happened today. I struggle to express my frustrations here on my blog. It helps but I end up still stuck with the same question. How can I explain how I feel when the part of me that can explain how I feel is damaged?
Tonight I watched a short film made by David Anthony Alvarado called Indelible Mark. It was an incredible experience because it articulated so well exactly what I was trying to say on Thursday. After the viewing someone asked the film maker what drew him to the subject of brain injury and he said it started as a philosophical question. Who are we if not our brain?
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.
Yesterday I went with some new friends from the New York City Chapter of the Brain Injury Alliance (BIANYC) to see an artist discuss her work. Elliette Markhbein's show is called Whack'ed ... and then everything was different: Portraits of Traumatic Brain Injury Survivors. The artist suffered a brain injury 8 years ago and started painting during her recovery (like me). When she was first injured, she told us, she felt alone in her struggle. She barely understood what she was going through and once she did, she could not imagine that there were others who were like her. The TBI survivors viewing the show echoed that sentiment.
A therapist, in the months after my surgery, said something I will never forget. I felt so powerless trying to express what I was experiencing. I just wanted to explain it to one person, find one person who could understand what it was like to have brain surgery and then struggle to complete basic and previously mindless tasks. The therapist said, "Nobody will ever understand." I tried to accept those horrifying words, but it turned out she was wrong.
Most of the brain injury survivors I've met were abandoned by friends and family members. I am no different. None of my relationships was untouched by my experience. I am one of the lucky survivors to have a husband and daughter who love me enough to make a tremendous effort to understand. I am also so grateful for the other survivors I am meeting through the BIA.
This brain injury is part of my identity now. Everyone is shaped by his or her experiences, needs to process the changes, and may find solace in the company of others with similar pasts. Recognizing change, reflecting on experiences, and articulating frustration is hampered, or in some cases impossible, when the organ responsible for doing these tasks is damaged. Try wrapping your head around that one.