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

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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

Coming back to BIST’s peer support program

BY: MARK KONING

I recently went through a re-training session to once again become a mentor in BIST’s peer support program. It felt good, returning to a cause that is both helpful and important.

After a two-year stint as a peer mentor, I needed a break. Now, a year and a half later, I am stepping up to the plate again and returning to the program. It feels like the right thing to do,  I have things to offer from my experiences both as a survivor, and as a caregiver of a brain injury survivor. The partners I was matched with in the past were pretty awesome and I think things worked out beautifully.

BIST peer support program

So why did I leave? Why turn away from something I enjoyed and I knew was making a difference? Because I needed to take action for myself.

We often think of ‘taking action‘ as doing something to benefit others or society as a whole. But I think we often forget to take care of our physical and mental health.

I know this is a difficult thing for me to do. As a survivor, the ABI I carry around like a shadow often makes me forget about self care. At the same time, I am fairly certain it is also my brain injury and experiences from it that have given me this type of feeling of social responsibility. This social responsibility is something I have heard other survivors experience as well. It is probably why most mentors are survivors.

Experience has taught me a lot, and I continue to grow and understand as I move forward. I cannot be afraid to take action and step back, especially when I am doing something such as mentoring, which affects others.

Peer Support Program

The BIST peer support program is a great thing to be involved in, but I think taking a leave (from anything really) can benefit ourselves and whatever it is we are doing. In this case, I think it can only make the program stronger in the long run if partnerships remain successful.

‘Taking action’, both inwardly and outwardly, is something that always needs to be considered. Because even if at first glance it may seem as though we’re moving backward,  if we are really cognizant of what we are doing, we are always moving forward.

Do you feel like it’s the right time for YOU to become a peer mentor?
We have a training happening this spring – ABI survivors and family members welcome!

For more information, contact our programs and services coordinator, Kat Powell at: connections@bist.ca or 647-990-1485.


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 headache and heartache of romance

BY: MARK KONING

As Valentine’s Day approaches, love is (supposedly) in the air, but what does that mean to a brain injury survivor? Personally, I’m not a Cupid fan favourite. Are my feelings brain injury related? I don’t know.

heart that says 'stay single'
PHOTO: ANTI-VALENTINE’S DAY

The thought of recognizing a shared love with close family and friends basically sits well with me. But the celebration of romance? That just gives me a headache. I don’t have anything against the concept of a relationship between two people – whether it’s in a marriage or a ‘going steady’ deal – but the idea of personally entering into a romantic relationship with someone causes an intermittent cranial pain.

I find just the idea of cramming liaisons between two partners into one day overwhelming. I understand that romance is a blossoming thing that is not just about one calendar day, but still…

I’ve experienced a few relationships throughout my life which have resulted in happiness and heartache as tag-alongs. Some of these I’ve written about in my book, Challenging Barriers & Walking the Path.

Nothing I’ve gone through has grown into a long, lasting, relationship. These experiences have, however, lead to feelings of discomfort. I’ve been faced with not knowing what to do or say, and seeing as how I’ve grown up not knowing what to do or say, the feeling scares me. I’ve had, and still have at times, difficulties understanding myself, so trying to understand the opposite sex can result in a spinning effect.

It has taken me some confusion, and heartache, to understand and feel comfortable with who I am. I don’t know if I am ready for anything else.

This ABI has presented so many difficulties, but I think, for me, has also offered so much clarity. I’ve learned to work hard and take things in stride, so perhaps my Valentine is still yet to come.


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.

 

Brain injury in the family: then and now

BY: MARK KONING

In 1978, when I was six years of age, I was admitted to the hospital with a viral brain infection, known as encephalitis. Encephalitis is inflammation of the brain, caused either by an infection invading the brain (infectious) or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis).

Mark Koning and his mother
Mark Koning and his mother

It was a seizure that alerted my parents to the fact that we needed to take a trip to the hospital, and then another seizure which told the doctors I needed to be admitted. After this, I draw a few blanks. There were many tests, I was in a coma for two weeks, and I received rehabilitation during the course of my stay at this medical facility that acted as my home for the following months. While there was some therapy that I continued to endure for another little bit after I went home, that was it, I was done.

Fast forward 23 years later to 2001 when my mom had an accident and fell, and I see a world of change. After my mom was placed onto a gurney in the hospital, it took only a matter of hours to diagnose the subdermal hematoma/blood clot that my mom had suffered. They first had looked into whether or not it was a stroke which had caused the fall, followed by tests for an aneurism. Turns out it was just a plain old, bad, fall.

My mom went into surgery that night and found herself sleeping in a coma for the next month. When she awoke, it took her quite a while to find the mobility to physically move her limbs, and it took even longer for her to find her voice. A physical therapist helped with her movement, a speech therapist helped with her aphasia and a cognitive therapist helped with everything else. The nurses were great and the doctors took good care to explain things that my sister and I needed to know. My mom was prescribed the appropriate medications to ease any discomforts. Therapy followed us home and soon the Community Care Access Centre (CCAC) got my mom, among other services, a personal support worker.

Currently my mom attends an aphasia program once a week, an ABI program once a week and has a March of Dimes rehabilitation worker come out once a week. She also involves herself in many social activities March of Dimes offers. And her doctors, even though different from years ago in the hospital, treat her very well.

Mark Koning
MARK KONING HOLDS A COPY OF HIS LATEST BOOK, CHALLENGING BARRIERS AND WALKING THE PATH; PHOTO: MERI PERRA

There is quite a bit of difference between our injuries. I was pretty young when I acquired my brain injury,  while my mom was just approaching her 60th birthday when she fell. (Though she would say 49  and holding.) And as much as I don’t want to seem ungrateful for the care I received, I can’t believe the tremendous difference compared to what my mother has access to compared to what I had, back in 1978.

Times have changed and regardless of my occasional questioning about my past, I have no complaints about change when it is for the better.

The one main difference between my mom’s accident and mine is traumatic brain injury (TBI)  versus acquired brain injury (ABI). My mom fell and suffered a TBI where as I was struck with a viral infection from within; no trauma, no physically-seen damage, no bleeding from the head. Does make a difference? I wonder.

To find out more about my life growing up you can do so by reading my book Challenging Barriers & Walking the Path, found here: http://www.markkoning.com/ChallengingBarriers.html


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.