Dear Brain Injury,

BY: MARK KONING

Dear Brain Injury,

Where did you come from? I never asked for you. You snuck into my head and caused a great deal of damage when I was a young boy, defenceless to your attack. You tried your best with your seizures and placing me in a coma. You robbed me of memories, physical strength, speech, and understanding. You made me feel trapped.

You tried to pull me into the abyss, but I would not go. I would not surrender.

With all that you stripped of me, I somehow made it back.

Photo of a journal: Secrets of a Brain Injury Survivor
PHOTO: MARK KONING

Maybe it was the love of my mom and dad, or my little sister who wanted her big brother back. Maybe it was my friends who wrote me cards and drew me pictures while I was lying there, motionless. Maybe it was something you just could never quite take away; my heart and my soul. My character.

Somehow you managed to shield yourself from my awareness and understanding. You did this for quite some time. And while I knew something wasn’t right, I just didn’t know.

I want you to know that despite trying as hard as I did and always, sometimes blindly, moving forward, you still made life growing up, difficult. Challenging. Torture.

But I kept moving.

I never wanted you.

But I kept moving.

People didn’t and still don’t, understand. I don’t necessarily understand.

Dear Brain Injury, when you knock me down I get back up. I will ALWAYS get back up. - Mark Koning Person wearing a grey hoodie, from the back, looking at the oceanBut I keep moving.

You are an unwanted guest, still lingering after all of these years. Hiding in the shadows like a monster. In my weakest moments, or sometimes when I’m just not paying enough attention, you unleash your poison. You bring about the pain, the fatigue, the frustration and the tears.

It is hard for me to know that others don’t see my unwanted guest. It is hard for me to know that you refuse to leave. But despite these things, despite how tired and angry I get, I know. I am the strong one, you are the weak. This is my path; and in a weird and strange way, you are the one who is now trapped.

Because I realized something that I don’t think you ever intended; it is NOT the end. I am a Survivor. Not just of the initial impact, of my time in the hospital, but every day. I survive; I thrive; I learn; I grow. And when you knock me down, I get back up. I will ALWAYS get back up.

Truly, NOT yours,

Mark


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

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The waves of ABI-related trauma

BY: MARK KONING

If you ask me, any type of brain injury is traumatic, whether it is acquired by a motor vehicle collision, an aneurism, a viral infection etc.

Living with the challenges of ABI, which can include headaches, nausea, fatigue, chronic pain – among other countless symptoms – can be brutal, and this brutality often comes in waves. Brain injury is often invisible, episodic, and quite often, not understood.

Sometimes I think the real trauma of acquiring a brain injury comes after the actual injury itself. I think many survivors of brain injury handle the initial challenges of their injury better than the ongoing aftermath, the reactions from others to their injury, and their own mental well-being.

Sometimes I think the real trauma fo acquiring a brain injury comes after the actual injury itself - Mark Koning

I am happy for those that try, for those that don’t turn away. I am lucky to be in the position I am and to have the support I do. Nevertheless, at times, it feels as though the trauma continues.

There are times I think it is my fault: for pushing myself too hard, or for not saying enough. There are other times I simply want to yell and scream. Sometimes I even get confused and scared simply by looking in the mirror and questioning my own feelings.

I don’t want to explain what fatigue means for me, I don’t want to justify why or how it is that I just know my headaches are not the same as yours, I want to stop feeling stupid every time I forget something and I see that look on the faces of others.

The trauma lives on.

I am doing the best I can.

I don’t want anyone to feel sorry for me, I just want them to understand. Because if others can start to do that, perhaps I can keep moving forward without feeling like one step up means two steps down.

Then maybe, I can put the trauma to rest.


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

Lights, Christmas, Action!

BY: MARK KONING

I remember lying in my hospital bed and looking out of the window at the smokestack that illuminated a soft purple glow when it got dark. I was six-years-old and recovering from encephalitis which had landed me in a coma for two-weeks.

outdoor Christmas Lights
Lights outside Mark’s home

Low level light therapy (near infrared) may have beneficial effects in the acute treatment of brain damage injury.Dr Michael Hamblin   

But, it is documented that: a number of individual cases in which patients with chronic mild brain injury showed marked improvement in cognition, executive function, memory and sleep with light emitting diode (LED) treatments. – BioFlex Laser Therapy: Shining light on brain injury – Benjamin Yuen, DC, MSc, MCC(UK); Fred Kahn, MD, FRCS(C); and Fernanda Saraga, PhD
Source: Meditech International Inc.

Fast-forward almost 40 years, and I still find comfort in lights, especially at Christmas.

I enjoy hanging Christmas lights around our house (though I try to finish it up before the weather gets too frigid and I freeze my hands and fingers.) Once they are all plugged in, I find it calming and almost mesmerizing to look upon them in awe.

Is this brain injury related? I don’t think Dr. Hamblin and the others were referring to Christmas lights when they spoke about light therapy. But they are a comfort.

We’re big on Christmas at home: our house explodes with Christmas decorations, we host an annual open house, I do the lighting inside for the tree and fireplace mantle, but my favourite are the outdoors lights.

I am no Clark Griswold in National Lampoon, but I like setting up a fair decent amount of lights on the exterior of our home. I may even think how to out-do myself, every so often.

I like the glow that shines in the darkness of night. Wrapping the lights around our flag pole like a giant candy cane, outlining the windows and doors with colour and thinking, yes, “What can I add this year?”

Mark Koning and his mother Ria
Mark and his mother, Ria

Maybe there is something to the effect of lights like this on my damaged brain, I don’t know. Or maybe it is the memory of the purple tower that I am drawn back to, something that made me feel safe and secure during a very vulnerable time of my life.

But maybe, too, it is simply the festive time of year.


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

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Fatigue and the heat wave

BY: MARK KONING

There is a saying, ‘no two brain injuries are alike.’

This is true, every acquired brain injury is indeed different. But these horrid ABIs share some commonalities, and one in particular is fatigue.

people walking on a busy sidewalk in the summer
photo credit: Holographic Circus Wume / Aural States via photopin (license)

Similar to brain injury, fatigue is invisible. I find it to be hiding in the corners of my brain, lurking in the shadows. It seems to be ready to jump into action at any given time of the day. A nap, or extra rest, does not cure it.

Fatigue:

extreme drowsiness, typically resulting from mental or physical exertion or illness.

I’m not sure if people understand the effect fatigue has on someone living with a brain injury. I find it comes in waves and at various levels of low, mild and extreme.

It is a silent paralyzer, and never a pleasant experience. It is disorienting. One could almost wonder how much worse it possibly get?

Remember last summer? 2016 was the hottest year on record. This summer we have some relief, but the heat and humidity persist on most days, and they are a lethal instigator of fatigue.

Close up of an outdoor thermometer reading 100 degrees
photo credit: jo3design [DSP] May 18: Heat Wave via photopin (license)
While I’m not sure what is the best way to beat this devastating duo of fatigue and the heat wave, I know there must be a way to deal with it.

Perhaps it is inner strength, or knowing how to slow yourself down and breathe. Maybe the answer is to go for a nice cool swim or take a cold shower. Regardless of how staggering it can get, like with many things, I will get through it and survive.

I’m sure any of us who come up against these monsters can do the same. (And remember, fall is just around the corner.)

But sometimes I wonder, which is harder? Dealing with the fatigue or dealing with the fact that others don’t understand why I’m dealing with the fatigue. Maybe it is me not always telling people that I’m trying to deal with the fatigue.

Wow, that’s confusing, but that is also brain injury.

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

Feeling what you cannot see

BY: MARK KONING

As I lie in my bed I breathe in and out while staring at the ceiling. I can feel all of the bones in my body as I stretch myself awake. I rub the sleep from my pupils and rise to a seated position.

Five fingers;

Five toes;

I extend and wiggle.

I climb to my feet and slowly shuffle my way into the bathroom.

The mirror on the wall stares at me.

Two eyes to see with;

One nose to smell with;

A mouth full of teeth.

Mark Koning in a hoodie, looking down
Mark Koning

There are no physical scars or indentations on my head. There is no numbness to my face. My arms and legs have full motion, so there is no need for a wheelchair or use of any other kind of assistive device that can be seen. I know that not all injuries are the same, but still…

What is wrong with me?

Do they know what they cannot see?

Do I?

I feel the skin on my cheekbones and look toward the mirror with pretty clear vision.

I sometimes feel that part of me is forever hidden.

Shadowed; unseen.

Maybe it is not what they don’t see, maybe it is what they don’t understand.

While I may live with a brain injury, my brain lives without borders, and what I mean by this is that my limitations only go as far as I let them bother me. For me, one plus one may not always equal two, and what I need to do is come to the conclusion that this is alright. There is no shame in it. It hurts me to know that not everyone else can find this same reasoning.

Because of it though, I still often find myself waking up only to look into that mirror and wonder. What is depression supposed to look like? Is this chronic fatigue that I feel, this confusion and frustration, this struggle to retain information, this cognitive search for words that quite often get lost, this uncertainty that I am challenged with, the extra time I require and need to slow down, are these things real? Are these things a result of my brain injury?

But I know the answer to these questions. And even though it is a continuing struggle between what I feel and that which cannot be seen, I know. I know of the strength and of the beauty and of the patience. I know of the possibilities, the potential, and the greatness that lies within. I know that if you only allow your eyes to see, you can end up missing out on a lot.


During Brain Injury Awareness Month this June, Mark Koning is donating  50% of the proceeds of his book, Challenging Barriers and Walking the Path to BIST! Contact Mark over Twitter or Facebook.

The passage of time after brain injury

BY: MARK KONING

Time flies over us, but leaves its shadow behind. ~ Nathaniel Hawthorne

Being a brain injury survivor sometimes feels as though I have both lost and gained time. My injury occurred when I was six-years-old, and it is as if those first six years of my life have been erased. (It is hard to say for certain, because, well, I was six.)

Screen Shot 2017-03-24 at 2.23.51 PM
PHOTO: MARK KONING

I have some ideas of what things were like in my early years, mostly because my Oma (Grandma) shot many home movies and my mom took tons of pictures, plus all the stories I’ve heard along the way. It’s hard to tell what is my own memory, and what has been planted there by someone else.

It wasn’t until many, many years later, that I was diagnosed with an acquired brain injury. (You can learn more about that in my memoir ‘Challenging Barriers & Walking the Path’)

Growing up without the knowledge that I had an ABI, but at the same time sensing something was wrong, I often wonder if I spent too much time questioning things or if I was spared certain other anxieties. Ignorance is bliss, right?

Regardless of my past, I can say this about my present: while I might seem to have enough time to get things done, I do not. I do pretty well, but there are things on my list that don’t get checked off. No matter how much I have trained my brain, and knowing my need to slow down, it can still be frustrating to not get stuff done!

My accommodation for work, and life in general, is needing extra time.

In some ways, taking things slow and affording yourself more time is good, but I still only have 24 hours in a day like everyone else. You see? Frustrating!! I do what I do with the time I have, just like we all do.

I feel pretty lucky, regardless of time; and I still cherish it all. As much as I may need things to slow down, taking things at a calm pace allows me to appreciate those little things I think sometimes tend to get forgotten or taken for granted.

For those of us who have come to appreciate a cautious approach to life offer a unique ability for the serene. ~ Mark Koning #challengingbarriers

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

Mistletoe madness

BY: MARK KONING

I spent most of my childhood and young adult years feeling out of place; I didn’t think of myself as a normal kid. I could not understand why I had such a difficult time with things that seemed to come so easy to the others.

pexels-photo-25866

I was six-years-old when the viral infection made its way into my brain, and it was many, many years later that I was diagnosed with a brain injury. Living within the unknown made things that much more challenging. Bottling up my emotions and refraining from telling anyone about these difficulties didn’t help much either.

There were many things I thought of that might give me some of that ‘normalcy’ in life, but I could never figure out just how to go about getting them.

Enter the mistletoe, a small leafy object that got its recognition during the Christmas holidays. I had witnessed its use in movies, on television, and even in person. I had read and heard stories about its magical aura. As per whychristimas.com:

The tradition of hanging it in the house goes back to the times of the ancient Druids. It is supposed to possess mystical powers which bring good luck to the household and wards off evil spirits. It was also used as a sign of love and friendship in Norse mythology and that’s where the custom of kissing under Mistletoe comes from.

So getting kissed under this cheery decoration, I thought, would signify my ‘normalcy’. Well, at least it was a step toward becoming one of the guys, right? I mean getting a kiss, a girlfriend, that’s what being one of the guys means, right?

The idea of some amazingly cute girl kissing me with her lovely lips was a beautiful thing. It was also scary – very scary in fact! So why did I become obsessed with making sure we had this small plant in our house every year?  To this day, I’m not exactly sure I know the answer.

pexels-photo-170383See, I would make sure this delicate Christmas object of affection was put up in just the right spot, and then, I would do everything I could to avoid that spot. I’ve said nothing about this to anyone until now, despite I repeating this ritual for several years.

It was somewhat counter-productive when I look back on it all. It was as if something in me was saying, ‘This is how you become normal,’ while another voice inside said ‘That’s a load of crap!’

These days I no longer bother with the mystical object meant to garner a kiss. I know a kiss won’t make me ‘normal.’ I don’t need anything to make me normal, because  I am normal already.

A kiss is not going to turn me into a prince

A kiss is not going to make me a better person.

But, that doesn’t mean I would refuse a lovely lady.

 

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