ABI Candle Lit Vigil Speech

I sustained my brain injury from a viral infection that creeped its way into my head while I slept on a November night in 1978. You could say that I never really woke up from this nightmare that shadowed me throughout the years while I grew up, at home, in school, at the various jobs I held.

I’ve dealt with failure, depression, discrimination, fear, isolation, frustration, anger, feeling stupid, being called stupid.

These things still lurk around the corner. I am easily fatigued, I tend to have trouble retaining information, I work at a different pace than most, and I require certain workplace accommodations.

Trauma touched my life again in 2001 when my mom fell and hit her head, and brain injury re-introduced itself. Her life has been altered ever since. She lives with Aphasia, she is unbalanced, and she can no longer drive. She seems to even deal with the same weight lose that I do.

Brain injury, I think, can be defined as episodic, focal and diffuse, varying. It affects everyone differently, but in many ways, exactly the same.

Let’s face it, life with a brain injury, whether it is two months after the initial incident or thirty years, can suck! It can suck big time!! But, life without a brain injury can also suck just as much, if not more.

I am a guy who likes to see the glass half full, even when looking into the deepest, darkest abyss. Okay, I haven’t always been like this. But over time I have come to learn that the barriers my brain injury has brought into my life, while very frustrating at times, can also be my greatest assets.

I still get scared, I often feel lonely and confused. But a part of me has also learned to embrace that vulnerability. I have grown strong and become wise. And just like me, I think we should all have the courage to be imperfect. It can be argued too that imperfection and vulnerability are two of humanities greatest traits.

Brain injury has led to all of us feeling some sort of loss I think, a desire to get back to something. I say let go of who you think you should be, and be who you are. And don’t misunderstand; this is not the easiest thing for us to do. It took me a long time of thinking I had to be a certain way, someone that I wasn’t, to fit into the so called “norm”. I still think I get caught up in that every once and a while.

But I’ve realized something. Regardless of any mishaps or horrors, regardless of this dreaded thing, brain injury, that has become part of my life, it is my life, and life is the “norm.”

********

So, now it is time to stand up, take control of who you are, and move forward; even if it is by inches. Because this is the moment.

As I stand here, in the back of the Loyal True Blue & Orange Home, on this beautiful June day, Friday the 3^rd of 2016, I take the time, even while I read these words, to appreciate and listen to the quiet noise around me. You, me, all of us; the birds, the cars, all of it. 

I think about how no one is back at home except for my dog who has probably jumped up and sleeps on my bed;

his peace being snuggled into the place where I close my eyes and have often gotten lost in dreamland. Getting lost.....mentally anyway...... something that is not too terribly hard for me to do.

It is not difficult for me to lose focus and have my brain drift off track, and so I work hard from day to day to keep it and myself on course. Often when I am alone I allow my thoughts to wander. Today I am not alone, but I still allow my thoughts to wander; and it is all good. Because this is the moment I realize that we can make our own changes to our own lives.

There are many times that I have allowed frustrations to run wildly through my body over silly things, things I don't have and things I cannot control. But when the wave of emotion rolls into the quietness of the after moment, I come to see that I don't really need more than I got and shouldn't worry about control because it will either all work out or it won't and I'll do what I have always done..... survive and keep trying.

This is the moment when you and I should take time to close our eyes and realize that we are all superstars and that we can love as much as we can be loved.

This is the moment I remind myself that happiness and success are measured and valued wrong, because they come from within ones soul and are NOT checked off from a sunshine list. And I wonder if I have reached my capabilities, my peak, or if more is coming.

Because whether it is or not, I am always going to be reaching for more.... more knowledge, more acceptance, more skill, more love, more peace.

This is the moment I stumble upon the revelation that even in my darkest hours I am surrounded by more beauty than I often acknowledge....... I think that applies to most of us.

And this is the moment I feel in my heart that I still love this sometimes angry and depressed world and I will never stop.

When I was younger, like I've already mentioned,I faced some very difficult challenges and barriers that I still see shadows of today and I know that with time they will get better but some can also get worse.

This is the moment when I can let my inner calmness fill my entire body and head so that I can breathe because there are certain factors that will make me forget but also allow me to recall on occasion.

This is the moment to laugh and to cry, to believe, to learn; learn to share, accommodate and accept. This is the moment to realize that it is alright, alright to slow down and catch a breath, to fall behind a little, to be afraid, to be different; there is nothing wrong with being different.

Frustration will come again along with its buddies confusion and depression and it is okay. The struggle sometimes felt within is just that, a struggle; neither bad nor good and only we can let it go. Let it go.

It is a time to know that forgetting and then reminding oneself of these moments, these feelings, is part of life; it is part of discovery, vivid and glorious! These moments, they can occur every day if we let them

This is why we need to cherish our moments, however small and short lived or big and stretched out; because they are all beautiful and they are all worth it. Stand tall, and be proud of who you are. Brain injury; the ups and downs; and everything that comes with it.

The Wild Ones

Some may question “the Wild Ones?”

As a group we never actually hung out…. Not really. Each of them may have crossed paths and interacted on the occasion for brief moments, but mostly their lives and friendships with me remained separate from one another. In my mind though, this awesome lot of super dudes and I walked, and still walk, among each other quite often. The prerequisite for these guys to be classified by me as awesome consisted of “Hey Mark, let’s hang out.”

I mentioned all of these dudes in my Memoir, “Challenging Barriers and Walking the Path”, as they were all significant to my life in one way or another, helping to fill this confused and shaky life with some cherished memories and what I think of as great adventures and fun times.  Peter, the Finn, Surfer Dude, and Kevin.

Where are they now? The Finn is still in my life, I occasionally correspond with Surfer Dude, Peter has moved onto his own big moments, and Kevin I remain connected to through memories and family. But I often feel that we are all still together and always will be.

They have all meant more than can actually be put into words because they have helped this lost boy grow and accept. I am comfortable with my life for many reasons, but these boys, they gave, and continue to give, (even in absence) a calm comfort.

Music, theatre, dreams, fun, laughter, rebellion, mischief.  

Sitting on the surface of a half built foundation to a home while crackin’ jokes; lounging by a campfire in the rain or stacking on more and more wood to raise up the flames; singing along with eighties tunes belting out from the car radio at one AM in the morning; baking in a sauna and then running out into the dark and jumping into the cold water; surfing Styrofoam boards on three inch waves; taking a long journey into never land to recover a theatre set with little knowledge of our return and therefore throwing caution to the wind. The list of memories is long and in my heart they all run deep.

This foursome brought into my life times that presented me with laughter, clarity, meaning, excitement, tears of happiness and acceptance. They helped me rise from mistakes, overcome challenges, and feel comfort through sadness. Regardless of where we’ve gotten to now in present time, the impact is still strong. For me, these are the "Wild Ones".

Buttons

I have an assortment of buttons in my room, different sizes and shapes and colours. No one button reminds me of a particular person, per se, but looking at them does take me back to a time of a little discomfort and embarrassment. Though it is one that I also do not wish to forget.

I remember the brown shades of the gymnasium floor during a high school dance, the lines that ran from one side to another. I had been staring at it probably for most of the night which would be why I remember it so vividly, though I’m sure most gym floors pretty much bare a resemblance to one another. My heart palpitated as I worked up the courage to ask her to dance, and even though her explanation was more than one word, all I heard was “NO”. After she spoke my gaze fell back to my feet and the surrounding floorboards as I returned to hugging the wall from where I came. My eyes remained looking downward as I did not want to see the laughing faces that I knew, or thought of in my mind, were watching.

The rest of that night was a blur as the morning, and my return to the same school but in a different location, came to quick. The torturous teasing I endured from some of the boys in that hallway of being shot down the night before brought me to tears.

*****

It is many years and moons later now that I realize those tears were a defining moment, a challenge and a building of an inner strength. Those small boys I recall in my mind I imagine are still in that hallway laughing at other people’s expense and making crude fart noises with their lips. I grew up and I learned. My tears became my memories and memory of that moment in time became my first button.

The girl from the high school dance, a beautiful angel from my mid-teenage years, is now most likely married and living a good life. Since that time in history I have crossed paths and acquired new buttons, but none will ever be the same as the first. Perhaps I will eventually encounter another button, and that button may become THE button. Maybe that time has come and gone. Who really knows? But I keep walking a path with my head held high, cherishing the experiences I’ve gained along the way.

Since understanding and coming to terms with the brain injury I now live with, I have learned to feel, carry and appreciate every moment and every button, even if she turned me down and brought on sorrows. Because maybe the sorrows were meant to happen; they made me realize I can be stronger, even with tears. I can grow. The emotional rain I had felt, then and over the years since, has helped in laying the foundation of who I am.

Though I do not physically carry buttons with me, they are there in my mind; and she is still there. Whether I ever come across another button like the one I offered up courage to on that old gymnasium floor, I don’t know. But those small boys, my streaming tears and everything since that moment, has taught me, all of it matters only as much as you want it to. It is your choice and if you want it to mean anything or nothing at all.

Some things I let fizzle away; certain Buttons though, I hold dear.