BY: MARK KONING
“Dear Santa, all I want for Christmas is… the latest and greatest from Twentieth Century Fox!”
I use popcorn at Christmas, but not to string around the tree.
Mark Koning
I. Am. Awareness.
BY: MARK KONING
Here we are into the month of June and Brain Injury Awareness Month.
Every year I wonder of its impact. What minds are being awakened and new things learned? Do people come to an understanding of what it’s like to live with brain injury? Are folks even paying attention?
Are all of those awareness campaigns ever enough?
Over the years I have attended various conferences, and volunteered as a peer support mentor. Of all the survivors I meet and all of the voices I listen to, the common theme I hear over and over is of people feeling alone and misunderstood.
I am misunderstood, often. I feel like people hear me, but don’t listen.
“Hello, is anybody out there?” I want to scream. “Do you get it?”
But when I really think about it, contemplating my own thoughts and replaying conversations, I realize: isolation is not winning. Hopelessness and ignorance do not always come out on top. People care, learn, and adapt.
I am a graduate, I am honoured with diplomas, I own a home and have a good job. From everything I have accomplished, and through all of the challenges I have faced, I have learned.
As a brain injury survivor and advocate, people applaud my presentations; they enjoy my blogs and value my mentorship. A written memoir of my life and challenges with brain injury has gotten respect and admiration.
I. Am. Awareness.
Everyone who speaks up and moves forward is awareness.
Life is awareness. It is happening all of the time, more often than we, or I, may think.
Is it enough? I don’t know the answer to that. Is there ever a time we should stop moving forward? To stop learning and teaching?
Helping to create brain injury awareness is part of me and who I am. It is part of a lot of us. And it is all of OUR legacy, being aware, creating hope, understanding, and inclusion.
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.
That time of the year, again
BY: MARK KONING
This time of year, I often find myself singing along to that old Christmas carol, ‘It’s the most wonderful time of the year.’ Having said that, I also often find myself asking if that’s really the case.
We are in a season that can be full of cheer and magical moments, but as a brain injury survivor, the season can also be stressful and tiring. I feel more isolated during the Holiday Season than at any other time of year. It is a tug of war as I go back and forth, I enjoy the festive times, but they take their toll.
I look forward to the memories and experiences the holidays bring; an ‘Ugly Christmas Sweater’ party, watching Die Hard (what I consider the staple Christmas movie), the Santa parade (which, in my home town is done at night where you can get an awesome effect from the lights regardless of how much snow is on the ground), a Christmas Open House and hanging beautiful lights outside my house. I cherish these things, but I also need to pace myself. If I am not careful, it all can become too overwhelming, depressing even.
Where is the snow I remember as a youngster and into my teens? The kind I could build forts from, have snowball fights with, and make snow angels in. It seems to be few and far between.
Maybe I just don’t have the energy I used to. I get a little impatient with an overabundance of too many Christmas tunes, but at the same time they can get me rockin’ and into the festive mood.
I love this time of year, and I also dread it. What is up with that? Is it the familiar territory of my brain injury not knowing what direction to go in? I can tell you I’d rather believe in Santa and his reindeer than deal with this ongoing fatigue and confusion.
I love seeing the smiles from my niece and nephew after they unwrap their gifts, but navigating large crowds at the mall can be frustrating and painful. My head can only handle so much, so I try my best to avoid the consumerism of the season. The fact that there seems to be so much build up only to have it all go by so quickly can also be disparaging.
Is it simply the time of year? The lack of sun, the cold and the damp, these elements do not help my fragile mind. Christmas in July then? Perhaps. But maybe I just need to carry this spirit of the holidays with me all year round. Maybe I should put that in a note to leave with the cookies and milk I put out by the fireplace on the 24th. Hmm.
Merry Christmas and Happy Holidays to all!
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.
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.
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.
But 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
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.
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.
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?”
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
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.
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.
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
