Tuesday, July 28, 2020

Final Diagnosis. Who am I now?

There is a great danger in assigning who we are to what we do.
What we accomplish. What our profession is, what our successes are and even
what we fail at. I am now living proof of that. My entire life was geared toward
what I do. What I accomplish. What I am going to achieve.
There was always that unspoken feeling of not being enough by 'just being'.
So from an early age of 12, I started to push myself to my limits. I decided I didn't earn the
privilege of eating so I assigned myself goals to earn it. I could eat one cookie
if I ran around the block a certain number of times. I could have french fries if I did
100 sit ups. I could watch a movie if I reached a certain weight on my bench press.
I didn't feel worthy enough to allow myself to have these simple luxuries unless
I did something to earn it. I eventually channeled that type of thinking in my
career aspirations. I would set a goal and not feel worth anything until I accomplished
it. Some saw this as being driven. In a way that was correct. But when you're driven and
don't feel valuable until or unless you succeed that is a dangerous tightrope to walk.
What I didn't know 45 years ago that I know now is I've been walking around
with a brain that wasn't formed correctly from the start. I didn't know that it was
just a matter of time before the rug would be pulled out from underneath me. I would
no longer be the person I was nor would I be capable of achieving what used to come
naturally. To a person that has identified themselves by what they accomplish,
hearing the words 'Major Neurocognitive Disorder' from a Psychologist is devastating.
I walked around in a daze for a couple of weeks. I went through the stages of grief-
denial, anger, apathy, sadness and I'd like to say I'm at acceptance but I don't think
I am there yet. I am breathing. I am getting out of bed, getting dressed and trying
to be ok with my new normal. I've felt the way I do now for a year at least but now
it has a label. Now the thing I have been feeling is undeniable. It has been exposed,
I have been exposed. The world now sees. So who am I now?
I don't have that answer yet.
I had a conversation with my step son today. He told me that when he first met
me 4 years ago, he didn't think I was capable of much. (Gotta love the honesty of an
8 year old) He continued to say that hearing stories of what I accomplished in the past
has surprised him and changed his view of me. He says that I am stronger than he thought
I was in the beginning. This prompted me to tell him more stories and reminisce of things
I have achieved. But then, I go into a room where it's quiet and the voice inside me asks,
"Who are you now?"
I am a woman that was born with a damaged brain. I am a woman that was born with
fetal alcohol syndrome, hydrocephalus, brain atrophy and a partial corpus collasum and
I survived. I made it through birth, infancy, the terrible twos, teenage angst, tumultuous
adulthood to a half of a century. I am no longer wheelchair bound, I am not bed bound as before, I am
not comatose, I am not in a vegetative state.
I am that once in a life time type of miracle.
So now, when I think of all that I have accomplished,
I realize that sometimes 'just being'
really is enough.

8 comments:

  1. You are an amazing woman Jana! An inspiration to all! XOXO

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  2. Very well written sis. You are more than enough, you are perfectly you. Love you very much!

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  3. I know I read this before-but you know the story-it's like that movie, 50 First Dates. This writing is amazing, it flows off my mouth as I read it. So who are you now? You are an amazing woman with so much to give the world-regardless of what the label says. Today, you are alive, functioning and having good and bad days, like the rest of us. You're not...and you're not...never let this or that define who you are.....Unless that word is awesome, then you run with it, girl and raise your head high!

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    Replies
    1. Thank you Jen! I appreciate your words and I will definitely follow your advice :) Love you girl!

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