Photo credits, Jenna Lindqvist
In my two last posts, I’ve written about the psychological effects of what it is like to live with TBI. I have chosen to write because it helps me. It helps me process what I’ve gone through, to understand what TBI actually is. At its worst, it is living hell and at its best, well, it’s the best thing that has ever happened to me. However, unlike other injuries there is no way anyone can tell that I’m suffering from TBI. Unless, someone asks why I wear glasses again. Therefore, I think it is time I let you into, not only what my psychological repercussions are but also what physical challenges TBI brought along. My decline in motor skills. My inner struggle of feeling like I’m a tourist. A tourist, trapped in a body, that just fucking won’t do what its been trained it to do, during its 31 years of existence. Once again, you might want to get that cup of coffee and please, feel free to laugh. Smiles and humor is the way I’ve been able to cope with this. Even though it’s, at times, the darkest humor.
This is Part 1/3
The Physical Effects of Traumatic Brain Injury
It is noteworthy, that you’ve been injured a bunch of times, often it’s been a clear cut case. Meaning that the injury can be explained by a picture, healed by rest and throw in the occasional cast or medical support of some type to remind you, that you are injured. At this point, your entire family is pretty used to seeing you with some type of injury. Broken thumbs, arms, legs, migraine attacks that last for days, sprained ankles, bruises the size of watermelons, swollen fingers, toes and feet, broken vertebra, internal bleedings, concussions. Okay, point being: hospitals and recovery are not unfamiliar to you or your family. So why does TBI differ from the previous injuries?
After countless hours of pondering how you can describe TBI in the simplest of ways, the only analogy you can come up with is: imagine flight control at Heathrow airport, one day, just decides to go home. No notice. No replacements lined up. They just drop their pens and what not and leave. Bugger off! Mosey on home! The airplanes would pile up one by one on the landing strips, crash mid air or try to take off and/or land all at once. One person would never be enough to clean it up and it is the same with TBI. And the worst part is, it would take a long while before anyone noticed what the real problem was. The root of all chaos and havoc.
The flight control of your body is the brain. It coordinates everything. That elusive thing all passengers and people take for granted. Yet every time one gets on an airplane or does something, flight control ensures that you take off and land safely. Things just work. And so they should. But when they don’t, entire families are left to suffer the consequences. And that is exactly what happens with TBI. It takes a village to piece a TBI patient together again.
It took a long time for you to understand the impact your TBI had on your family. And how they tried to help. How they tried to reach out. How they time and time again, asked if there was anything they can do. How they had spent countless hours worrying about you. How it, actually, has been harder for them, to stand beside you for months, trying to understand what you are going through. But how do you explain what you are going through, when you don’t have the smallest clue, of how bad things actually are. Let alone what you are suffering from. All while you don’t see, how they have had to control their own emotions, hold back and resist to tell you how bad it really is. Not to mention how much you’ve changed due to TBI. A transformation from the happiest, most extrovert and loudest person, into the complete opposite: a hermit with nothing to say.
Physically there. With them.
Psychologically. Gone. A million miles away. Alone. In a dark hole. The abyss.
All of this, was caused by the 8 cerebral haemorrhages and a whiplash injury you suffered. The biggest bleeding was 8 millimeters in diameter, the MRI scans showed it pressed on your corpus callosum. No sweat, no one should have to know what the corpus callosum is, unless you’re a doctor. In simple terms, it’s the data cable between left and right brain lobe. You’ve never thought 8mm is very big or significant, but this is how it physically changed your life.
You’ve always been a fast talker. Usually, it’s a matter of being so excited that you just have to get everything out. All while, well aware of the fact you might be interrupting or even waking up the neighbours. You were probably most baffled by your noise skills, when you spent the night playing poker at a friends place, you were five people. Keeping a friend with a broken leg company, not even drinking. An hour later, the police rang the doorbell and wondered what kind of party was going on. It was commonly agreed that you alone had caused the short police visit.
But you’ve changed. Never mind the awful headache and nausea. You can look at a object, an object as clear and mundane as ever. And you know what it is. However, there is no way you are able to say what it is. What you at this point experience is something you’ve never experienced before. Your brain is working on overdrive, but nothing is happening. You can’t open your mouth and get the words out. You feel slow, slower than usual! Haha! The one other thing you’ve been good at, expressing yourself has grind to a halt. The process is broken. You are broken. You are 30 years old. And you feel like a child. And not in a good way.
You feel embarrassed. You start avoiding people. You start hiding at home. You start working out ways to cover this symptom. You start to slowly hate yourself. Hate the new you. And you are scared to death that you can’t deliver sarcasm, wit, irony and phrases that provoke situational comedy. Or worse, you will from now on deliver all of the above, just that second too late when the moment has passed. A bit late. A bit slow. A bit awkward. And then suffer the looks. And maybe even provoke laughs out sympathy or worse, out of pity. Laughs that are not of joy or even genuine. So you decide it is better to be quiet. Sometimes you even laugh inside, at something you could’ve said a few minutes ago. How crazy doesn’t that sound?
A practical example of this is, when you were evaluated by the neuropsychologist, in order to determine your cognitive skills and assess the possible damage caused. It is evident to point out, again, that you had no idea of the severity of your injury at this point. Ignorance was truly bliss in this case. Because what was about to hit you next, was a freight train.
The cargo on the train? Read on. It will be explained.
Before you were put through the battery of tests which, took about three hours, you were briefed on what they can include. They ranged from tasks like: name as many animals you can beginning with S; look at this picture (resembling a picture from a children’s book) and name the object in the picture as fast as you can; a picture of a figure will be shown to you and you have to put these pieces together as fast as you can, in order to match the figure shown; pictures will also be shown where you have to identify what is missing; a sheet of symbols (+, -, %, €, & etc) will be shown, each symbol has been assigned a number and these have to be deciphered according to the instructions here, then filled out on this sheet; you will also hear a story, read a story and then you have to recite them back to the neuropsychologist; together you will also go through a few basic math problems. Most of these are timed.
You’ve always been very adamant about not being cocky, but you’ve been self confident. As you here these instructions, you can’t help the feeling of giddiness rise. The exact thought was: Jeeze Louise, another test you are gonna ace. These are children’s things.
Enter the freight train! Cargo: humbleness, back to down earthness, humiliation, shame, frustration and asphyxiation.
Destination: your face. Right between the eyes. The head shot.
You struggled from the start. Looking at pictures going: horse, pig, fence, SILENCE. You sit there looking at an instrument. Something you’ve seen before. Something you know. Now someone might think ”I have blackouts all the time”. And it’s usually followed by the confidence of :it will come in a minute. A familiar feeling. But this was different. This was not a blackout. This was like a horror movie. The dream of becoming an actor has come true. Finally you were playing the main part in a movie. A horror movie. Except, this is live. And you hate horror flicks.
Q: Have you seen this before?
Q: Do you know what it is?
A: Yes, I do.
Q: Well, what is it?
A: I have no idea.
Q: Don’t worry it will come. Do you want some more time?
A: Yes, yes please.
(Fighting to save face you don’t even know what this group of things are called. Music is made with them. You love music.)
Minutes of silence later.
Q: It’s a harp. Have you
A: (Bam! you interrupt!) Yes! Yes it is! (Enter super compensation mode, loud voice, hands flailing about) It’s a very nice, nice. It’s one of those… (Just fucking say something) Those things that make music with and it has a calming noise when played well.
Q: Is it okay if we move forward? (Totally calling my bluff)
Next you are instructed to point out and say out loud what is missing from the following pictures. The first few are easy peasy, lemon squeezy. Self confidence returns, smile returns. Picture of forrest is shown. You point out at the missing thing and proud as hell you lean back with a smile.
Q: So tell me what is it, you’ve only completed half of the task.
(Dear Mr. Lindberg, welcome back to earth. Here, we are held accountable.)
A: Well, it’s one of those things that has leaves on it.
Q: And you’ve seen this before?
(Woman, please! You’ve crashed snowmobiles into these things! Please! You’re 30 years old, for Christ’s sake!)
A: Oh yeah, they can even have needles instead of leaves. (How cool are you right now? Acing this botanical thing right over here. Mental shoulder brush.)
Q: Good, well then you can probably answer exactly what it is. No worries. We have time.
A: (Total silence. And freight train. For minutes.)
Q: Well it’s a tree and a tree trunk. Right?
A: Yes. Yes, it is.
This was when it hit you. You sink into that uncomfortable public place chair. You know one of those that everyone really hates sitting on, consisting of some sort hardly padded plywood and the narrowest backrest ever. The entire thing screaming “FIIIIINE, sit on me but not for too long”. You sink into it like it’s a Lazyboy. Except. It isn’t but you just physically shrunk a few feet. You are not okay. You are broken. You are in fact, brain damaged.
And you need some answers. All while putting on a brave face. Fighting, tooth and nail, not to show any signs of weakness. There is a good chance you might get them here and now.
Next task! Here you have a picture of a shape, with these small cubes (half red, half white) you are to form the shape that matches the picture on the card given. The first few went like a walk in the park. But then you were presented with a red triangle on a white background. No, nothing weird, just a simple triangle. Symmetrical, with the base at the bottom and peak at the top of the card. So there you sit, half confident half anxious but fully determined. Away you go placing piece after piece. Certain you place every piece where it is supposed to be. You see, you have a plan. A vision. What you didn’t know then but know now, is that you had no idea what you actually were doing. And this became obvious, once again, when the entire triangle was assembled but just didn’t look right. 16 pieces, four columns, four rows. There was something wrong, and you were given time to figure out what it was. Yet, no matter how hard you tried, there was no clue you knew what you were supposed to do. Kindly, you were asked if you wanted a hint. After quietly nodding, the neuropsychologist placed her finger on a piece. Moved it out out from the outer left row, around the entire thing. Calmingly placing it on the same row, just on the opposite side.
In retrospect, the injury had caused you to loose the ability to form images of shapes in your head. But you are learning about your injury. And knowledge is key in an injury that is, in my case, totally invisible.
“What you do for yourself dies with you when you leave this world, what you do for others lives on forever.” -Ken Robinson
End of part 1
This is the third post regarding my recovery process and TBI. Pictures and videos of this process can be found on Instagram @8MMSQUAD . The next two parts are already written. Therefore, I can promise that the second part will be posted next week and the third part, two weeks from now. Stay tuned!