By Julie Gagnon Prior
Last week my 34-year-old cousin Chucky shared this on Facebook, “It really sucks I can’t get close to anyone because of my own stupidity. I can’t just blame everything on the brain injury. I really wish for clear thoughts and love. I’m really sorry for hurting anyone.”
His words struck me like a bolt of lightning to my core. After reading and re-reading his post countless times, I eventually broke free from my computer to organize my thoughts, only to be drawn back to re-read it several times again. I then reached out to him and asked if he wanted to be part of a piece for the Islander that I have wanted to do for months but have not had the courage to complete.
“Cuz” readily agreed and put his story down in writing for me. I am so deeply thankful. Unknowingly, he is paving the way for me to confront and share some of my own issues that have been killing my spirit slowly and painfully. By only changing one word, I am able to use the rest of his words to share with the world what I have been feeling so long. Here’s my version, ““It really sucks I can’t get close to anyone because of my own stupidity. I can’t just blame everything on the Lyme brain. I really wish for clear thoughts and love. I’m really sorry for hurting anyone.”
See, Chucky and I have always been kindred spirits. We both love to have fun, enjoy nature to its fullest, and we are both quite talented at hiding our pain on the inside with a full smile on the outside. It turns out we are even more similar then we originally realized, now that we both have “brain quirk” badges.
Here is some of Chucky’s story: “The first of my struggles after the brain injury was confusion and fear. My normal world was connecting with others and helping out friends, for it was the day after Christmas of 2017. I was headed northbound on 105 to visit my friend in Enosburg. I made it to Swanton before an oncoming Subaru was hit in the rear and flew into my lane. Smash! My face hit the steering wheel and my knee hit the dash as my body remained fastened luckily.... I woke in the smoke. Frantically, I looked for my friends outside the vehicle. They were okay. The ambulance was already there. I hobbled on to the cold pavement and hopped to the ambulance in sight. That was just the beginning of the survival horror.
After being hospitalized and transported to Burlington, my primary concern was my friends’ condition and my shattered orbital plate in my face. Many faded faces tried to speak to me in the hospital, but I couldn’t quite comprehend all of their words or begin to read the paperwork I needed to fill out in order to get financial and recommended assistance. Very frustrating. My brain always wanted rest. I would typically sleep over eight hours, then wake for a few, only to go back to sleep for another 3 hours uncontrollably. I rested at home for a long while as paperwork from the hospital piled in.
It was nearly impossible to convey my situation over the phone, as my speech was greatly affected by the accident. Anxiety and depression weighed heavy on me. I was quite worrisome and somewhat delusional. All that stuck with me was that I was “lucky.” But I was scared that I’d never be the same. And I had a fear of fear. Many of my emotions blew up into tremendous stress. Many conversations and situations I couldn’t/can’t understand.
This brain injury rocked my world! It continues to shape my world into a confusing lifestyle at times. I’ve learned to write everything down such as plans, groceries or any tiny reminder that can simply be forgotten within a matter of seconds. My greatest motivator while having a brain injury is patience. Because I have come a long way to get a little bit better. Letting go of unhealthy stress and taking a necessary break from a noisy world has been the greatest help.
I am most thankful for family and friends who stuck by me and reminded me what love and life truly was.
Many things are still overwhelming almost two years after the accident. I focus on routines and relaxing in order to get through every day. Now I am strong. I survived horrors of confusion and I am conquering my fears one day at a time. I still tear up telling my story because it’s the greatest pain I have ever conquered and I am so thankful to feel and live.”
It’s by clinging to the coattails of his courage that I now writing this piece. It’s been hanging over my head like the cloud that hangs over Eeyore. I too am scared, confused and heavily afraid of hurting others. I’m also one who used to live to have fun with others and help in any way I could.
Now I stay close to home as possible and live in fear of exposing my brain short-circuitry to others. Familiar faces, names, and memories can all be so overwhelming. My brain knows very well that it should remember all of them but it just can’t fill in the blanks. I fear that people will think that I am rude, standoffish, or a jerk because I don’t remember even the most basic things that a normal brain would. And just like with Chucky and so many others with cognitive challenges, the struggle isn’t obvious (like a leg in a cast for example).
If we add into the mix, a personality that is well adept at concealing pain of any kind… well that makes the puzzle even more confusing, misunderstood and lonely.
I live in conflict with balancing “the old me” with “the now me.” My heart wants to be out there helping others and playing as it’s always done. But my brain is now cloudy, confused, anxious, scared and very easily overwhelmed. My coping mechanisms are so defunct that the smallest challenges that should be molehills are steep, rocky mountains.
My purpose for writing on this topic it to share a reminder with others…. Please be patient. This world has become so fast paced and challenging with of the ever-changing technology. Add on to that the political, social and environmental conflicts and a perfect storm is created and can swallow an injured brain into the fog.
Please try to keep in mind that a large number of people who you encounter on a daily schedule may have these challenges.
The brain is an amazing thing, but also so fragile.
A traumatic brain injury, drugs, birth defects, dementia, illness, PTSD, and so many other conditions affect a person’s cognitive abilities.
Please, be patient, don’t judge if someone if having difficulty with even the simplest tasks. We are all only human and in human bodies. And were we can’t be expected to know or even understand what someone else is dealing with… we can at least be open minded, kind and again… Patient.
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Julie Gagnon Prior
Julie Gagnon Prior resides in Grand Isle with her partner Carl and their 5 dogs. Prior has been battling Lyme Disease for several years, which she