The Physical Effects of Traumatic Brain Injury 3/3

Photo credits Jenna Lindqvist

Part 3/3

Inner map

This is one of the most interesting symptoms you’ve experienced. Remember those old video games played on a 386 or 486 computer? Well if you don’t or don’t even know what 386/486 is, then you might want to look them up. The games were, at the time, awesome and once you moved your character the graphics would open up as you got to a certain point. If the computer for some reason (there was many) tilted, you would kind of just look at a black screen.

Well, that is how it feels for you most of the time. The map you’ve had in your head just doesn’t open up. Routes you’ve had no problem in planning just don’t exist anymore. What has substituted the map, is just blackness.

You’ve driven, been driven, taken the bus/taxi to the airport thousands of times. And yet when you for the first time (post hit) thought of the route, to the airport, there was no way you could remember the route. It was all black. There was one building you knew, you pass on the way to the airport, you spend days trying to think about it. When you finally drove to see your osteopath, Google maps told you the entire way. This route happened to pass by that exact building you had been trying to remember. It was Suunto’s HQ, a place you’ve even (briefly) worked at. A no-brainer.

This is how it is on a daily basis. But how could you start coping on your own? Slowly, you started to trust that everything would work out in the end. You tripled the amount of time it would take normally to walk somewhere, pack your stuff, walk out the door with no clue of how you were going to get to your destination. But you started walking on pure instinct. Not being able to plan ahead more than what you saw in front of you. Once at a crossroads, your instinct would tell you left, right or straight ahead. Eventually you would arrive at your destination.

Only to notice that you’ve walked the the longest route in history.

Balance & Coordination

What the hell? Why in the world is this MRI machine rocking like a boat in wavy conditions? Is this a new feature? Maybe they need to make sure the injected dye serum goes from head to toe. Why don’t they trust the blood stream? That warm feeling, from top to toe, you get from the dye serum had already flashed through your body. Guess it’s a cost saving mechanism. More accurate. These machines have sure developed.

This is where you, yourself laugh the most. Personally loving to tell this story. Because. Well. Get a grip already. The problem is inside your head. Your balance is FUBARed. The problem is inside of you. Your head is screwing with you, major league screwing. Just to get out of bed takes 3-4 minutes. At its worst, every movement makes you feel nauseous. Sick to your stomach. Like hungover sick, with that tumble dryer effect. But you just never puke. You’ve never puked due to a concussion. You just feel sea sick. Something you’ve felt once in your life. And it’s constant. And the stupid medication ain’t helpin’.

The ritual to get out of bed starts with carefully considering if you really, really, really have to. If the answer is yes, you start by turning your head and waiting for the world to stop spinning. Then slowly moving your legs towards the edge of the bed, avoiding any rush movements that might send your perception of balance, into thinking you’re in the middle of the worst turbulence ever. Slowly placing the soles of your feet on the floor. Shifting your body, so that you have your body on the edge of the bed. Place your hands on the floor as you shift your body in order to land on all fours. Slowly, slowly, no even slower. Then one leg at a time try to stand up, all while clinging on the wall for support. Once you’re up, rest against the wall and wait for the rollercoaster to end. Simple. Isn’t it? 

The only thing that felt like you didn’t have to learn again, on some level, was swimming. Since the injury, you had been swimming once. Not knowing this was a big no no, you hit the pool for your prescribed 10 minute work out every other day. On the 19th of December, at 05:45am before the aquatics center opened, Sebastian Dannberg (8MMSQUAD designated swim coach) let you in. Accompanied by your mom, dad and closest training partners, Anni Simola, Basse Kindstedt, Timo Huhtisaari and Jenna Mäkinen photographer (with Bianca Mäkinen photography assistant) you walked in with no guarantees of actually making it into the pool. Tuukka Häkkinen (8MMSQUAD Swiss Army Knife/Orthopaedic osteopath in training) had made it very clear that all unnecessary noise, light and disturbance in the water was to be avoided (read waves, ripples and splashes). He made you promise, no swear, that you pull the plug, if you felt symptoms before you got into the pool.

Swim time, 10 minutes and max heart rate 130. (There will be a separate blog post on this.) However, in short, you were able to swim the entire 10 minutes. It was all fine and dandy until you got out of the pool. The same merry go round started that had become so familiar earlier, but fight took over the instinct of flight and no weakness was shown. Clear as day, but nothing admitted. A 10 minute swim and it took 4 days to recover from it. You spent the next four days at home, sleeping, feeling nauseous, spent, lousy. But so goddamn happy, content and proud.

Just getting the green light to go swim, was a huge milestone. And today, getting out of bed is only a 1 minute ordeal at worst. And today, this only happens on really bad days. 

Now this doesn’t tell the entire truth of how bad you balance was at its worst. Because it was fucked. The first balance exercise were very simple. No, simpler. You stood at the gym in front of the monkey bars, both feet on the floor, shoulder width apart, hands out with your hands around the monkey bars, ready to grip. The first time you did this it took 4 seconds and you were flat on the floor.

Why?

Because what happens is, your head feels like one of those tea cup rides in an amusement park. First, you feel a small oval like motion that pulls you to the side. Then a second one but a bigger oval. Then a third one. And BANG! You’re on the floor. And you have no idea how you got there. This is because the connection between your eyes and brain doesn’t work. It all happens too fast, so you black out. Hence, the hands out real to grip the monkey bars.

Yes, that is how simple it was at first. It took a good two months to go from 4 seconds to a few minutes.      

Eye sight

You were 6 years old when you got your first glasses, 7 when you got contact lenses. The contact lenses meant freedom to do anything and carrying on with sports like every other normal kid. Naturally, your mother thought the only glasses that would fit you, were the ones straight out of Harry Potter. Thanks mom! But that didn’t matter, because Paul Tracy (Indy race car driver) had the same glasses. My mom was, and still is, quick on her feet to make up for things like these.

Moving on. At the age of 14 your eyesight stops declining and settles in at a cozy -6 accompanied with some astigmatism. In practice, this means you’ve grown up reading Donald Duck with glasses on. Alternatively, sans spectacles, with the comic book resting on your nose. Further than that and everything became a blur. Cramming light in between comic and nose, challenging. Use glasses. At the age of 18, your father sends you to get your eyes fixed with laser surgery. Something you will forever be thankful for. That dude is tougher than the average bear and had his eyes done in 1990 and 1991. One at a time. Vaguely, you remember the pain and light sensitivity that was included in that process. You were in and out of the surgery in 20 minutes, with a bit of light sensitivity and 20/20 vision.

But nothing could prepare you for this aftermath. You see, what you don’t really get is that, the blow to your “cute little skull” was massive. Unfathomable. So hard, that it even gave your eyes a good shake and bake. The immediate effect, is that the functionality in the eyes was weakened, reducing the ability to adjust the pupil. Imagine, standing in the middle of a stadium, in the pitch black, lifted up in front of the floodlights and the floodlights turned on. Full blast. Non-stop. 24/7. You get the point.

At times, you would notice your left hand disappearing. Which is interesting. No pain. No blood. But no left hand. It’s like some one pulled the plug on the bottom half of your left eye. Often, the damn eye would just stop working. An interesting experience, especially since you are left handed. Or take this hilarious example, reading a book, tired, with a Petzl headlamp, red light on and thinking: why the hell would the publisher leave a Z formed blank space in the middle of a page. There isn’t even a picture. Is it for notes maybe?

Magically, the Z shaped blank space had disappeared the following morning. But your left hand had reappeared. However, it becomes increasingly hard to comprehend depth, like where your hand is in proportions to the cupboard of plates. Time after time, you jam your hand full speed into the cupboard door thinking: crap, is it really that close? Weird, it was a lot further away yesterday. Accompanied by the bumping into things, stubbing toes on furniture and the personal favourite: jamming that toothbrush full speed into your gums and teeth.

For 15 months you were only able to read with one eye. It would take 14 hours of intensive eye rehab in June 2017 with Mona-Lisa Möller, until you experience what it is like to read with both eyes. A fascinating feeling. The eye rehab made you feel nauseous, tired and dizzy, but it was worth it. By putting glasses and prisms in front of my eyes, Mona-Lisa could coax my body into reacting like I was on a rollercoaster. You all know that vacuum cleaner feeling in your stomach when the rollercoaster starts diving? Well, you didn’t have to leave the chair you were sitting in to get that feeling.

In June, Mona-Lisa puts you in contact with two guys specialised in eyesight related problems due to TBI at Karolinska Institutet. You fly over to Sweden to meet Tony Pansell and Jan Johansson. They check your eyesight  with those owl looking glasses, that all opticians use, and a bunch of other tests (more in a separate blog post). They’re conclusion is simple, nothing physically wrong with your eyes. The issues you have are in line with 40 top level Swedish hockey players they’ve examined. Nothing that can’t be fixed with rehab. Awesome news.

However, right at the end of the test, Tony asks you to put on the owl glasses and read a text. You’re not impressed, it feels the same. It takes a toll on your eyes and it’s annoying.

But then Tony puts in a pair of extra lenses, pulls on a smirk and goes: read, any difference?

Holy shit! Yes! A huge difference! Your eyes relax. Then your entire neck relaxes. The text is a lot clearer and your head doesn’t feel like a dusty attic because you’re reading. What did he do? He put in an extra pair of +1 lenses. At 31 years of age, you’re prescribed reading glasses. According to Tony, this is something many opticians miss because of limited knowledge of TBI. Tony continues and says the eyes, eye muscles and neck muscles are all connected. But you knew that. Because Tuukka has told you that.

I get to go buy a new pair of Oakley’s. A pair of reading glasses at age 31. How fucking cool is that?

Concentration

This one is actually pretty funny. If you know me, you’re probably wondering why this attribute is listed. My ability to concentrate was once described by a good friend as: the attention span of a fly. It’s true, but when you did concentrate, there was nothing that could disturb you. If you were interested in something, an engagement level of laser focus was activated. 

Today, you are constantly on your cellphone. Why are you not like all the other kids today? Because you have this uncontrollable desire to escape reality. This is nothing personal towards the people you spend time with. On the contrary, it’s the most embarrassing thing. You just don’t have the energy to participate in a discussion. For how long? This varies. Reasons? Anything really, a loud noise, a person that walks past or if your just drift off into your own world. 

Noise/light sensitivity

This is not unfamiliar territory since you’ve always had light sensitive eyes and later, at age 18, diagnosed with migraines triggered by light. It was more uncommon to for you to be seen with sunglasses than without. Yes, even when it rained. The ambient light does weird things to a migraine patient. Safe to say, some practice has been exercised.

Again, enter freight train.

The light sensitivity was so bad, you started wearing a ball cap and sunglasses inside. For months, you only had one light on at home. If you’ve ever been to Finland during March and April, you’ll be familiar with the overwhelming darkness. Most people, frantically looking for a light to switch on, feeling robbed of vitamin D. During this time, you had one light on at a time. Preferably, a light on in  the bathroom giving just enough light, with the door open, so you can see in the rest of the apartment. At its worst, you sit in your bathroom with the lights off. Since it’s the darkest place in you apartment. However, it needs to be darker. so you put on sunglasses. The pain in your eyes is excruciating. The pain is unbearable. You crack.

Fuck it. You brake into tears. Again.

Luckily the months of February and March are pretty dark in Finland. But sometime in April, some wise ass turns on the lights and the same asshole doesn’t switch them off until late September. The neuroophtamologist prescribes light blocking curtains. Two friends happen to be remodelling their newly bought apartment and don’t need the pitch black, dooms day curtains that came with the apartment. They are kind enough to give them to you. Cheap and practical, they haven’t come up since May 2016.   

Body

Trust in yourself

The things you’ve been doing in autopilot for the last 30 years, have suddenly, in the blink of an eye, vanished. The self confidence you’ve been working very hard to build up, fortify and develop has also, vanished. However, the interesting part is, all the signals are there. Screaming at you, waving red flags and honking the horn. Like a hard drive being erased before switching owner, all of your abilities and your instincts are wiped away.

Menu->Settings->Restore factory settings->DONE. Clean as a whistle.

Yes. That easily. Except, you were never asked if you really, really, really wanted to do this. If you in a matter of fact, wanted to reset everything. It just happened. Instantly. As soon, as your head hit that beautiful sheet of ice. The sheet, that has always brought nothing but joy. Yes, pain is also joy.

But since you’re one stubborn-ass son of a gun: there is no way you want to believe this. Instead, it starts showing in the most simple tasks. Waking up, reading, writing, walking, cleaning, standing up right, ability to think, produce coherent speech or text messages. There is no way you want to believe it. You are not surrendering. Laying down.

Instead, it comes in the worst possible way. The worst possible form. Creeping up. Slowly, but settling in like an army of lice. At worst. Irreversible.

Doubt. Self doubt. Constant doubt.

And it’s suddenly present everywhere. Clear as day. Screaming. At its worst, taunting. And at best, only itching in the back of your head. Just right where the bleedings were. Those wicked eight.

Just to make things clear. Although, it has been pure hell at times. If, someone gave you a presentation of all the things you would learn during this process, followed by the option: would you want to go through this? Your answer would not be yes. It would be, fuck yes! The only wish or demand would be that your family, your father, your mother, your brother, your sister and all of your friends would be spared from the pain and suffering they’ve had to endure. All because you haven’t been able to communicate what is wrong. No one, not a single person, should have to dig through the debris of a plane crash, in pure hope of finding something left of their loved one. No one should have to endure the uncertainty.

A lot of progress has been made. There is still a lot to be made. Bring it on.

You love one liners and if one would ask your training partners, they would say they are sick of hearing them. But you’ve never really cared about what anyone says. Therefore, you can conclude with a one liner, one you’ve chosen to modify. The original: Get knocked down 8 times, get up 9!

I got knocked down 8 times at once. So I made sure, I got up 10 times. All in 1 go!

“It’s not easy, but it’s simple” -Eric Thomas

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