How dark can it get?

Parts of the following text, have been written on August 10th. August 9th, was to date the darkest day in my life. But, that’s how it is when you are dealing with TBI (Traumatic Brain Injury). And life for, that matter. You might want to get a (few) cup(s) of coffee. And please keep in mind, I have NO history of depression or mental illness.

How dark can it get?

Yesterday you did something, you thought you’d never have to do. You called your mother, in tears and asked her to come over. You kind of knew, you were going to have a dark day, it had been hanging over you for the past days. Itching in the back of your head. Like that pressure, you feel in the air just before a thunderstorm hits.

Well, yesterday the skies opened up. In your eyes. Literally.

It wasn’t the first time this happened. No, it was around the sixth time it happened. But this time was worse, it was way worse. This time, it felt so unbearable you couldn’t handle it alone. The times before, you just balled up at home and cried your eyes out. The times before, lasted a few hours and you kind of brushed them off. Casually mentioning, “oh it was one those bad days again. The ones I just have now and again”, to your closest family.

But this time it was bad. Worse. The worst. It was Hell. Living Hell.

It was so bad, you paced back and forth in your apartment. For an hour. Waiting for the only person, you thought, could help to get off work. Your mother. Mom. Why wait an hour? Because there is no way, you’re going to dump a bomb like this on your mom, with her being restricted at work. At this point you couldn’t stand being at home anymore, You just had to walk out the door. You put your headphones on, called your mom and asked where she was. You didn’t actually listen to what she said, you were so busy scratching the itch all over your body. It felt like you had spiders under your skin, you hate spiders. No, you can’t even fathom how much you HATE spiders. So much, that you even detest writing or saying the word.

You shot out the front door and walked to meet your mom, crying. You just couldn’t hold back the tears anymore, once again. You’re 30 years old and walking down the street with tears running down your cheeks, scratching your chest. Like you are possessed. You’ve got sunglasses and noise cancelling headphones on, so you think you’re doing a damn good job hiding the fact that you’re crying. But you’re doing a lousy job.

How do you know?

The first two people that walked past you, took a look at you and went pale as a doctors coat. Like they had seen a ghost. A 188cm/6’2, 85kg/187lbs sobbing ghost, frantically scratching his chest that could only recall the thought: dude must have rabies. The t-shirt you had on, felt like paper, like it was going to rip any second. In all your craziness, it was the last thing you wanted to harm. It was a gift from your orthopaedic osteopath and his brother. A gift, you had received that same day. The shirt was a token of gratitude, because you had helped them in their first triathlon, a few weekends earlier. You loved every minute of helping out, you also cherish that t-shirt. It has meaning.

Anyway, you decide to try not to scratch. You see, you somehow know, the itch you are feeling wasn’t anything else than psychological and that the crushing weight you felt on your chest couldn’t have been physical. Otherwise, you would have instantly gone from a tomato, into ketchup. So you quit scratching.

It lasted around 2 milliseconds.

Then you started again. Now scratching the inside of your left thumb, with your right thumbnail. You scratched until it went all red, it actually also hurt. But it felt so good. So. Damn. Good. This, was actually the first thing you were able to fully concentrate on, for more than 10 seconds. Since the hit, you haven’t been able to focus at all. It doesn’t matter what you are doing, writing, watching TV or having a discussion. Your mind wanders no matter how hard you try to focus. This is only a minor problem when you are alone, but it’s hell when you talk to someone. You see, you are alone, a lot. Because you can’t stand noises and lights. You don’t really interact with that many people, you actually prefer being alone. Therefore, it would be awesome to concentrate, for more than five minutes, when you do have a discussion with someone.

Some people who know you, will say you’ve never been any good at focusing. True. But you’ve always engaged in discussions with passion and effusion. And this part of you, has been absent since the hit. On the bright side you’ve managed to invent ways of hiding this, or at least you think so. You know you’ve become really good at covering up the fact that you don’t talk as fast as you used to. This is because you have real trouble finding words, due to the information not flowing between brain lobes as it used to. The words feel like they are on the tip of your tongue, but you just can’t say them out loud.

You’ve left your apartment. And as you walk down the street, you see your mother, you still have sunglasses, a cap and headphones on. But she can immediately see you are a mess. Mothers just know. She is the shortest one in the family but when she puts her hand on your shoulder blade, you know, you are safe. And this is exactly what she did, simultaneously nudging you forward in order to say: you’re in the safest hands now, but we need to get home and you need to lay down. You can’t fight the tears anymore and you don’t have to because; mom is by your side. So, the waterworks start for real. You start walking back home. And on the way home you see your friends mom. Your own mother is hesitant whether you should say hi or not, but she has helped you so many times, so it’s a no brainer.

You stop and talk for a minute, you hear that her brother and her friend have passed away in a matter of days. It kind of puts things into perspective. Here you are walking and talking, a mess but still. Walking and talking. You can tell that, although she is hurting, it does her good to talk. It certainly helps you that she is there too. She is even shorter than your mom and can make an elephant stampede, grind to a halt with a single look. And then she does what all moms do best, puts her hand on your arm and asks how you’re doing. Without going into detail, you just say it’s a tough day and she can see, how much you are hurting. She knows you want to go home and says: I’m here if there is anything you need. You only manage to get a thank you out. But you really meant it. 

Once at home, you sit down on your bed, your mom sits down on the couch. You choose to ball up and lean against the wall. And cry. Your mom, who loves to talk, sits dead quiet and just looks at you and how comforting that is, cannot be put into words. You feel like you could just fall asleep. You feel safe. You haven’t stopped crying. But you feel safe.

However, you know that she wants to ask what is really going on? Ask you, to let her, into your world. Give her a glimpse, into the ongoing chaos inside your head. You know she won’t force you to talk, but you both know it is better if you do talk. And on so many levels you want to. You want to and you feel the need to. But you also feel so lost. Like you’ve built up these huge walls and thick gates. The ones they used to have hundreds of years ago, to safeguard medieval castles. 

So, just like in the old days, you start opening those gates. You can picture those huge wooden gates and the sound of the old metal mechanism squeak as the cogs churn. All in order, to let your mom in. You know you need to let your mom in. You know you need to talk. You know talking now, is like taking out life insurance. You’ve had the sense to call her today. But what if it goes so dark, you might not call her next time.

You haven’t had any history of depression. Quite the opposite. But since the hit, you’ve come to realise, something that terrifies you. Something you thought you would never change your opinion on. Something you’ve condemned all your life. Something you still haven’t thought of doing. But you’ve come to understand why some choose that certain path. That certain solution.

You have been advised no to talk out loud about the following issues by a few professionals. Mainly for two reasons; 1) it could be seen as the start of mental problems such as e.g. depression as you’re being treated by the public healthcare system in Finland; 2) because these issues may raise the interest of your insurance company and not in a good way; 3) because you worry about a disease that has only been diagnosed for around 200 people in the world. 

But you feel the need to speak up. You feel the need to take massive action. You have always chosen to. Why function otherwise now?

You worry about a disease and it’s called Chronic Traumatic Encephalopathy, CTE in short. According to the Boston University, the definition of CTE is the following: a progressive degenerative disease of the brain found in athletes (and others) with a history of repetitive brain trauma, including symptomatic concussions as well as asymptomatic subconcussive hits to the head. CTE has been known to affect boxers since the 1920s. However, recent reports have been published of neuropathologically confirmed CTE in retired professional football players and other athletes who have a history of repetitive brain trauma.

Having read about CTE, you find out it usually starts to show around 8-10 years after the last blows to the head. But, it can also start within months. You’ve certainly had a few blows to the head growing up, driving motocross and snowmobiles, new school skiing, riding downhill bikes etc. One time at around 14, you woke up in the van. Your last memory was driving out of pit lane onto the dirt track. This was on a Tuesday and you raced the following Saturday. Why? Because, that was just how it was back then. Little was known about concussions, or how they should or needed to be treated. Your own estimate is that you’ve had 10 concussions, 5 followed with some type of memory loss (i.e. post traumatic amnesia). These are the ones that you’ve counted, because someone else has woken you up. You’ve been out. Unconscious.

On February the 5th, 2016, you are waiting to board a plane in Miami and casually scroll through your Twitter feed. One Tweet catches your eye: “Dave Mirra Dead: BMX Legend Dies At 41 From Apparent Suicide”. After all that has happened, you remember exactly where you were and how you felt when you read this. You were also speechless. For you, Dave Mirra was a hero, a hero in BMX and extreme sports. A hero, who later found the same passion for triathlon as you did. Someone that refused a so called “Celebrity Spot” to Kona, because he thought he should deserve to be there. Qualify for Kona, just like everyone else. One of the many reasons why you had nothing but the outmost respect for Dave Mirra. And Dave Mirra was diagnosed posthumously with CTE. Apparently, struggling with mental issues but acting as if everything was okay. Covering it up.

You see, what scares the shit out of you is, that during this recovery period. Fuck, I can’t even write it. Why? Because it scares the shit out of me. But fuck it, I want tell it as it is. Like I always do. Straight. No sugar coating. No bullshit.

After a period of what felt like hours and bucket loads of tears later, you open your mouth and begin to speak. You tell your mom what scares you. You tell her about CTE. What it is and what it does to a persons body. How one slowly starts to lose it. How you have felt like, you are slowly starting to lose it. To loose the one thing that you’ve always been good at: focusing on the relevant task at hand, i.e. being in control of your mind. Acting with clarity when it matters the most. Being able to push away the negative and unproductive thoughts. How you’ve felt, the only other thing you’ve ever been good at slip away, your coordination and motor skills. How you’ve felt like a tourist, in your own body. Trapped. With no place to hide from your thoughts. Or the fact, that you don’t feel like you are, well simply put, you.  

What you continue to tell your mom, is that you have had similar days every third or fourth week. And even though you’ve vowed to become the world’s best TBI (Traumatic Brain Injury) patient, you seem to have no control over your thoughts anymore. How the moments seem to get darker every time they come. How it feels like a cumulative process, that you can’t stop. How you can walk down the street, be so happy one second and cry the next. How you know and feel that you are on artificial high. How it feels that second before you come tumbling down. How it can happen anywhere. How it has happened anywhere. And how you don’t care. No, how you don’t have the capacity to care where you happen break down. You just do, where ever it might be.

How you’ve understood, why people chose to end their own life.

Your mother, shocked. Speechless. Frozen on your couch. As if you had picked up the remote and pressed pause.

So you continue to talk.

You explain that, the time the understanding of why people take their own life, always hits you at the same time and in the same place. To this day it’s happened five times. When you’ve been somewhere with friends and/or family, a feeling starts creeping up your spine.  When you get dropped off (you aren’t allowed to drive) or as you arrive at your home gate. A gate, that leads to the courtyard of the old apartment building you live in. You open the door in the gate and start walking up the small incline, through the tunnel that leads to the courtyard.

That’s when it hits you. Like a wave of emotions.

You now have to go home and be alone. The only place you would want to be in the world. The last place you would want to be in the world. A paradox. But at home you have to deal with your own thoughts. You have to deal with the fact that you are brain damaged. You have to deal with the ringing in the ears. You have to deal with the dizziness. You have to deal with being restricted. You have to deal with looking at all the pills you have to take. You have to deal with going to sleep. You have to deal with the fact of not knowing what tomorrow might look like. You have to deal with the fear of thinking what tomorrow might look like. You have to deal what the new you might look like. You have to deal with the darkness. You have to deal with all the light pouring in from the windows.

A dear friend asked you, if there are pills you could take to avoid these meltdowns. You instinctively answered: “No. Or there probably are but you feel you need to come to terms with these meltdowns, in order to get to know yourself. Naturally.”

There she sat, my mother, mom. And just listened. Struggling to keep her emotions in check. Which she never needed to, but forced herself to. Listening without the intent of formulating an answer. Listening, only in order to try to understand, learn and help. Something very rare in our world today. All you hope is, that she can somehow feel and understand how much weight you’ve just gotten off your shoulders. How much, just her shear presence has meant. How lucky you feel that she listened. That she showed up. How lucky you are, that you have someone who thinks it’s a given. A given to always show up. You also hope she doesn’t start carrying the weight you’ve just off loaded. Because it is unnecessary. Because it should be left there. Right there, right in the middle of your living room. There, for you to pick apart, ounce by ounce. For you to process. For you to rebuild yourself. So you know where you have come from. So you can one day know where you are going, weightless but without forgetting. Stronger and nearly invincible.

A doctor called all of the above Warriors Fatigue. Now that sounded awesome in your ears. Warriors are strong and they never ever give up. Neither will you.

So many people have helped during this process, thank you. Without undermining any of the people, that have helped me. There is no better way than to conclude with a quote, from a very wise man. A man, who struggled with his own mental health.

“All that I am, or hope to be, I owe to my angel mother” -Abraham Lincoln 

It is always darkest just before the dawn.

26 thoughts on “How dark can it get?

  1. Jenna says:

    Så fint och ärligt Robson. Du är jättebra på att skriva. Tårarna rann när jag hade läst färdigt. Jag tror att din text hjälper många att försöka förstå vad det innebär att lida av hjärnskada. Det är så värdefullt och hjälper nära och kära att hjälpa på rätt sätt. Ifall du vill processera dina tankar genom ett till medium som kanske inte är lika ansträngande som text så kan jag gärna ta lite foton med dig.

    • Robson says:

      Jenna, tack massor för att du läste och tack för dina komplimanger. Jag hoppas just att mitt skrivande kan hjälpa andra som går igenom liknande. Tycker att ingen skall behöva gå igenom något sådant här ensam. Om mitt skrivande kan ge stöd till ens en annan mänska så har jag uppnått mitt mål.

      Jag skulle gärna ta foton med dig! Det låter som en sika siisti idé! Jag skickar dig ett mail!

  2. Colette Simonne Heefner says:

    “Otherwise, you would have gone instantly from a tomato, into ketchup.” 😹😹

    Brilliant soul, anddddd brilliant writer ! 🤗😁

    So excited for you on this journey. This piece brought a huge smile to my face and I can’t wait for it to bring a smile and great peace to so many others ❤️

    Keep up the good work 😎👊🏻

    • Robson says:

      Colette, thank you for taking the time to read and write. It means a lot! And your feedback even more. So happy that it brought a huge smile to your face! Even though it’s dark there has to be some humour in it! No one gets out of life alive! 😉 Take care in Greece, you are doing very important work! Keep it up!

  3. Kiki says:

    Du är i våra tankar och vi hejar på dig Robson! Du är stark som fan, och styrka är också att veta att det är okej att känna som du gör ibland och möta det som du gör. Warriors fatigue är en bra beskrivning! Det gör säkert bra att skriva dagbok, och den är jätte inspirerande! Stor kram!

    • Robson says:

      Kiki, tack för att du tog dig tiden att läsa och ännu skriva. Tack för dina ord. Skrivandet hjälper mig massor och hoppeligen någon annan som också går igenom detta. Stor kram till dig också!

  4. Mikaela says:

    Robson du skriver så otroligt fint och bra!! Rörande text och mammor är bäst! Fortsätt kämpa på, you are on the right track! 🙂 -Mixo

    • Robson says:

      Tack Mixo! First things first, du har så rätt! Morsor är bäst! 😉 Tack för att du läste och tack för att du tog dig tiden att skriva till mig.

  5. Kari T. says:

    Tack igen för att du delar din resa till att bli världens bästa TBI-patient! Du har en otrolig styrka att ta dig an utmaningarna och dela dem med oss. Du är en verklig hjälte!

    • Robson says:

      Kari, tack igen! Tack för att du orkar läsa och skriva! Jag är ingen hjälte, bara en jappe med massa saker att säga och hoppas att jag kan hjälpa någon som går igenom något liknande. Samtidigt, hoppas jag aldrig att någon behöver gå igenom det här men vill också ge en inblick via skrift, i något som jag har så svårt att muntligt uttrycka. TACK!

  6. Koli says:

    Robson, du e en helt otrolig jappe. Har alltid älskat din attityd och ärlighet, dem ser man även nu efter allt det som hänt. Läste båda dina texter och åkte hård emotionell bergochdalbana. Kämpa på. Du e i våra tankar.

    • Robson says:

      Jonas! Tack för att du läste och skrev till mig. Har alltid strävat till att föregå med just dessa två saker du tog fasta på: en never give up attityd och sen ärlighet. Så tack för att du tog fast på just dessa två. Tack för ni att tänker på mig, hälsa Dani och lill-flickan! Hoppas ni alla tre mår bra!

  7. Cecilia says:

    Robson, Louise gav mig länken till detta och jag kan inte säga mer än tack. Tack för att du delar med dig. Ja jag grinade såklart också när jag läste. Du skriver på ett sätt som är tydligt och lätt att ta till sig. Något så allvarligt och personligt som går rakt in. Många av känslorna känner jag igen själv och det gör mig ännu mer motiverad till att ta hand om mitt välmående.

    Vi hörs inte särskilt ofta (ännu mindre nu när jag och Julius inte längre är ett par) men jag tänker på dig och jag tänker på dig med stor värme. Kram

    • Robson says:

      Sissi, det är nog jag som skall tacka dig. Det att du tog dig tiden att läsa och dessutom skriva så fint betyder mycket. Jag hoppas verkligen kunna ge en inblick i hur det är att måsta gå igenom en hjärnskada, kan jag dessutom göra det så att någon känner sig uppmuntrad att ta hand om sin egen hälsa. Ja, då har jag uppnått mitt mål! Ta alltså hand om dig varje dag!

      Det gör vi tyvärr inte. Men jag tänker ofta på hur roligt vi haft tillsammans. Och det kan ingen ta ifrån oss! Vi ses nog, vänta bara tills jag blir frisk! 😉

  8. Anna Gullichsen says:

    Robson, jag är så rörd och tagen. Du skriver fantastiskt om det hemska. Det finns en enorm styrka och vishet i dina texter, du lyckas ringa in det bräckligaste på ett filosofiskt plan. Du är helt enkelt en lysande skribent. Om du har funnit skrivandet som en slags väg att gå på, fortsätt på den vägen. Förutom att det hjälper dej, hjälper det många andra. Stor kram och innerliga tankar. Anna Gullichsen

    • Robson says:

      Anna, vad kan jag annat säga än, TACK! Tack för att du tog dig tiden att läsa och skriva. Du är själv en trollkarl när det gäller ord. Som liten har jag haft ett grymt privilegium, jag har fått lyssna på dig (och övriga medlemmar i APA) blanda humor och allvar på ett jätte intelligent sätt först i takt till musik, sedan i böcker och nu även i blogg format. Så jag kan inte annat än tacka dig. Tack för att du fungerat som en inspirationskälla och från ung ålder satt ribban högt.

      Jag har hittat ett obeskrivligt lung när jag skriver. På något sätt hjälper det mig och jag hoppas det även hjälper andra. Så jag tänker fortsätta.

      Än en gång, tack Anna!

  9. Wille Bergman says:

    Väldigt ledsamt att höra om din sjukdom, min gamle vän. Men fint att se att du hittat en ny talang – otroligt bra skrivet. Kämpa på!

    • Robson says:

      Tack Wille! Tack för att du läste och tack för du tog dig tiden att skriva. Det har kommit en massa gott ur den här skadan och en av de grejorna är att jag hittat ett lugn i skrivandet. VI kämpar alltid på! 😉

  10. Susssi says:

    Robson min vän, så du berör med din text. Förutom allt tungt du måste/ tvingas gå igenom med mind and health berörde du mig även som – en mor- man reflekterar även lätt till vad som hänt/ händer kring en med andra grejer. Fortsätt med din flytande penna- du är SÅ stark💪.Stor styrke kram Sussi

    • Robson says:

      Sussi, tack för de fina orden. Och tack för att du återigen tagit dig tiden att inte bara läsa utan även skriva. Dina komplimanger ger mig massor av styrka. Även om jag skriver för att det främst hjälper mig, är det otroligt fint at höra att det väckt dessa tankar hos dig. Jag skall fortsätta skriva, det lovar jag. Men kvalitet framför kvantitet. Alla är vi starka. Stor styrke kram till dig också!

  11. Gustav says:

    Otroligt bra skriver, rördes riktigt djupt! Jag hoppas verkligen att du blir den bästa hjärnskadade atleten någonsin. Önskar allt väl på din resa!

    • Robson says:

      Tack Gustav! Tack för att du läste och även tog dig tiden att skriva. Med hårt jobb och massor med envishet blir man vad än man vill! 😉

  12. Anna says:

    Hej Robson! Kollade just på efter nio. Fan va tuff du är. Been there done that. Lever med samma diagnos som du och vet precis om kriget inom huvudet! Ville bara säga att de va strongt att dig att gå med i programmet. Själv har det skrivits en artikel om mig på Yle och det var en stor grej för min process. Ps. Vet dock inte om du kommer att bli världs bäst på hjärnskadan eftersom jag också tävlar om titteln 🙂 mvh Anna

    • Robson says:

      Anna! Du är min idol! Jag har på allvar gått omkring och väntat på att någon utmanar mig angående min själv utnämnda titel som världens bästa hjärnskade patient! Och äntligen har det hänt! Jag har läst om dig lite och det är nog inte jag som är tuff utan det är du. Vad jag förstått har du några år mera erfarenhet än jag men jag vet inte hur man ger upp! So I say: Bring it on! Let the games begin! 😉 Hur vi skall avgöra det har jag sen ingen aning om! 😀 Skulle vara trevligt att träffas och tala. Du vet ju vad det handlar om.

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