Today’s post is by a man who, like myself, as been on both sides of the brain injury coin. He was a young boy when he contracted a brain injury which undoubtedly changed the course of his life. And later he witnessed his mother go through the pain of a traumatic brain injury and began caring for her.
MARK’S PASSION TO LEND A HELPING HAND, OFFER ADVICE AND GIVE BACK, HAS DEVELOPED INTO A MORAL AND SOCIAL RESPONSIBILITY WITH THE GOAL OF SHARING, INSPIRING AND GROWING, FOR OTHERS AS WELL AS HIMSELF. HIS EXPERIENCE AS A SURVIVOR, CAREGIVER, MENTOR AND WRITER, HAS LED TO HIS CREDIBILITY AS AN ABI ADVOCATE AND AUTHOR OF HIS LIFE’S STORY, CHALLENGING BARRIERS & WALKING THE PATH. FOLLOW HIM ON TWITTER @MARK_KONING OR GO TO WWW.MARKKONING.COM
The Long Road.
It has been quite a journey for me over the course of my life, from memories of my folks taking me and my sister to Marine Land, African Lion Safari, trips to Florida, all of those school years, right up to where I am now. Quite a few of those memories from my younger years come from stories shared, photographs and a few home made movies. A lot of my earliest moments are stored, within something tangible, not exactly within my mind.
At the age of six a viral infection erased everything previous and left me in a two week coma with my parents clutching at their child’s hand. When I awoke I had to rebuild my speech, my understanding, my physical strength. Because of my young age I think my recovery sped along. I was home within months but remained sheltered from returning to school and much of the outside world.
Growing up with a brain injury.
Like with having to fight for an understanding with the doctors to admit me to the hospital (they saw no problems until seizures returned), my mom had to fight for me to return to school. I had missed an entire year because of this illness, the teachers could not understand, they questioned if I was ready.
Throughout my public and high school years, and even in college, I faced many challenges. I failed, I was made to repeat, I was occasionally ridiculed by others for not being able to keep up. “Stupid” was a word I was labelled with, “What’s wrong with you?” was a question I often faced.
It was a question I often asked myself.
I may have lowered my head, but always, even if pushing against an unseen abyss, I moved forward.
My long road, my journey, was missing something. Well, to be honest, a few things. But the one missing thing I refer to, is a diagnosis. I never heard anyone refer to me as a kid with a disability, let alone a brain injury.
It was my passion for writing that led me to self-discovery. Wanting to create a story based on my illness, a small part of one of my Creative Writing courses. I began with questions for my mom (my dad had passed away when I was thirteen) and other family members. Symptoms were what I used to look online and, together with my feelings, find a conclusion.
Events that shaped a career path.
But it was my mom’s fall and her own acquired brain injury in 2001 that brought about my search for an official diagnosis. A strange deja-vu overcame me when I paced the hospital floors. I concluded right then that my own thoughts were not enough. So tests given by a Psychometrist and a consultation with a Neuropsychologist concurred with what I had earlier discovered about myself. And even though it was kind of expected, it was still shattering news. Part of it was having a brain injury. Part of it was that I had struggled for so many years unknowing.
Currently I work full time in a non-profit organization where I feel like I am giving back a little with the services that it offers. While I find the work good and satisfying, I struggle with fatigue. I require the accommodation of working at my own pace, being able to take breaks and step away when my concentration level blurs. The most frustrating of it all, in both work as well as most other things in life, is that this disability, this brain injury, is invisible to the naked eye. It is even episodic in the fact that some days or moments are better than others.
But I’ve come to a place where I am comfortable with who I am. If others don’t understand my energy level and pace, the occasional frustration, the on-off again word finding difficulty… well, that’s too bad for them because I have a lot to offer.
Over twenty-five years between injury and diagnosis. Misunderstanding from family and friends. Explaining my injury (now that I understand myself) only to have people forget, roll their eyes or conclude what I really meant instead of what I actually said. There are times I get pissed off with these things. But I’ve realized, and try to remind myself, none of this is my fault or my downfall.
I am Mark, not the brain injury. But I do live with it, and I have accepted living with it. The survival, ups, downs, accomplishments and needs for improvement. They are all me. And even if sometimes still pushing against an unseen abyss, I move forward.
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2 replies on “Guest post: Mark Koning on brain injury, the long road.”
Hello Mark, the place of acceptance is something I am working on at the moment, knowing I have made progress in my recovery from a brain tumour is good, but not enough.
I am still hopeful that I will continue to evolve and progress more with this brain injury.
I thought your last sentence was very powerful, ‘I move forward ‘ Wow such a simple statement, but exactly how I feel and have to be, to get to that place of acceptance, I move forward. Thanks for sharing. Joanne
Hi Joanne. Over time I have come to learn a lot, and one of those is that (self)acceptance and moving forward can only be accomplished by oneself regardless of what others may say or do to try and help you along. I wish you luck on your journey.