I want to be an inspiration, said the liar.

A discovery, found tucked away inside a long-forgotten folder, under a pile of old papers, at the back of a drawer, filed under nothing in particular. I thought it was a piece of mine from years ago but I quickly realized it was not. My friend Alyson Vega wrote it in 2012, and posted it on her blog, T.B.I. To Be Invisible. As I read, I understood why I was compelled to keep it, why I decided to type it up, and why I left it in a folder to rediscover one day. I’m glad I did. Thanks, Alyson, for letting me post it here.


Alyson Vega, from T.B.I. To Be Invisible

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.

Why So Blue, Ava? -A. Vega

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.

Alyson Vega, April 2012

* go to: countdown2brainsurgery.blogspot.com/2012/04/i-want-to-be-inspiration-said-liar.html

9 thoughts on “I want to be an inspiration, said the liar.

  1. Jasper Hoogendam December 23, 2020 / 9:20 pm

    I met someone 3 years after my TBI who I had known for a number of years. Her response when I mentioned my injury was, “But your fine now.” To me it sounded like a command.
    I decided there was no point in mentioning some of my on going struggles from the injury. On reflection I concluded that she did not know how to deal with or respond to the fact that I have a TBI. Glossing over the experience and basically denying the reality was her comfort zone.

    Liked by 1 person

    • laurienyc December 24, 2020 / 12:02 am

      You may be overstating how astute and intuit your situation enough to deny the reality of your injury. Many people don’t know enough – or really listen attentively – to others. But for whatever reason, I find it most helpful for my own frame of mind to let go of other’s ignorance, avoidance or negligence, and move on with my life, how it is.

      Liked by 1 person

    • laurienyc December 27, 2020 / 6:24 pm

      Jasper, I’m not actually sure what I meant by my comment (especially the first sentence?), whereas yours is clear and on target. Thank you.

      Like

      • Jasper Hoogendam December 27, 2020 / 6:31 pm

        That first sentence does read awkwardly but i think I’ve intuited your intent. 😀

        Liked by 1 person

  2. R. Kowal November 6, 2020 / 8:31 am

    To me, we brain injured, can longer sugar-coat, or fake our daily reality. The brain injury removed the ability to fit into the “sugar-coated normal.” Which, when most “normal folk” encounter brain-injured or other disabilities it’s hard for them to face our realities, without sugar-coating it to their satisfaction.

    Liked by 2 people

  3. AMY ELIZABETH HENRY November 5, 2020 / 11:16 am

    I love this. I find so much kinship in it. I am happy when people find success in their recovery, but that happiness is shielded by a whole bunch of pissed off. Because this new life is so hard. I’m flailing around, trying to live normal, when I’ve had a life with a whole bunch of bullshit (outside of my injury). In fact, when I came around, my first word was “figures”. Maybe it’s me, but I’m more inspired by the struggle of others who are like me, fighting tooth and nail to get to “fair”. I don’t want others to suffer, but I wish people could see how much suffering we hide to get to where we just exist.

    Liked by 3 people

    • laurienyc November 6, 2020 / 12:16 am

      thanks so much for your reply. I’m with you – as so many of us are. That’s why I kept Alyson’s piece for so long and was blown away by it when I found it years later. I’ll pass on your message (and hope it starts a longer chain of responses from others… deserves to)

      Liked by 1 person

      • Amy Henry November 6, 2020 / 10:42 am

        Laurie, if anyone or yourself want an email penpal, I’d love to talk to someone who is in the same boat. I find it hard to find my way back to forums, etc. But it’s nice to see my reality reflected in other’s experiences. I’m 3 years in…and having symptoms of worsening. Which is concerning, right? Be well and I have bookmarked and subscribed to this….Amy

        Liked by 1 person

        • laurienyc November 9, 2020 / 12:38 am

          this is now posted on the blog comments so other people will se it and maybe take you up on it. ai’m just continually beat…

          Like

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