Portrait: Axel

A little bit about Axel 

My name is Axel, 29, born 1993, raised in Stockholm, Sweden. I’d like to share my story. 

 

Winter is coming 

I grew up like a normal boy, playing video games, building Legos and teasing girls. 2004 was riddled with suspicious, migraine like, vision blurring, nauseating headaches. December was when it all went south. The headaches got multiple times worse and became a daily occurrence. Everything I ate left my stomach the way it entered, eventually turning me into skin and bones. Frequent visits to the hospital did not solve the mystery. If we had done a scan of my head, we would’ve discovered a giant aneurysm, located at the right vertebral artery, level with pons, living rent-free. A few days after Christmas, minding my own business, as I was on my way to the bathroom for my daily morning vomit, oblivious to the life-threatening predicament, I experienced the famous baseball-bat-to-the-head phenomenon.

“AJ MITT ÖRA” (Swedish for “AAWW, MY EAR”), I screamed and collapsed unconscious.  

 

I beat the odds and survived 

Sporting a freshly coiled artery, I survived my subarachnoid hemorrhage remarkably well. However, I joined the hydrocephalus club and required a shunt. A couple of months followed of physical and cognitive rehabilitation. I was released from the hospital with, what I felt, a brief explanation that now my energy would be limited. One year later, with a lot of rest, I appeared like any other 12-year-old (maybe slightly cooler than average). I developed the skill to fool everyone, including myself, that my brain was normal, ignoring the fact that I was mega fatigued all the time.  

 

Quite the entertainer 

Somehow, I got to experience ordinary teenage years. I loved to entertain on stage. When an opportunity presented itself, I acted, danced or played drums on it. The laughter and applause from the audience was intoxicating. Even though I enjoyed those things immensely, they drained massive amounts of energy. After a performance, weeks of resting and accomplishing nothing followed, haunted by the thought that I was lazy. Perhaps in another life, I would’ve had a successful career as some sort of stage-based entertainer.  

 

There is no fooling biology 

Don’t ask me how, but I graduated high school. (That and my two marriages are about the only things I’ve finished). Even though my body gave me plenty of signs that I had to slow down, I thought that I could take on higher education with willpower, noise-cancelling-headphones and caffeine. In January 2020, I landed an internship at a video game studio. One of my proudest achievements.

One month later I paid the ultimate price for neglecting my condition for over a decade. I crashed. Hard.

Every drop of mental strength spent, resulting in me being bedridden for months. I became like a child. Seldom leaving my room. Super susceptible to sensory overload. I’m still recovering from this exhaustion. It’s taken a long time, but I’m slowly regaining my strength. Now I can do an activity for one to two hours a day. I’ve picked up piano, mini-figure painting and I am learning Japanese. These activities keep my brain stimulated. I still mostly lay in bed though, but I am enjoying life. 

 

Source of support 

Above all, my faith is my source of comfort. It has given me the mindset that we all experience challenges and have to suffer in our lives. It’s up to every individual to let it either destroy or refine you. Because of this I’ve never truly despaired. Still, I’ve had moments of great frustration. The runner up is the support of my loving family and award-winning friends.  

 

Advice to myself and fellow survivors 

Brain injury is differently tailored for every individual, yet, this advice might not just apply to me.

Embrace your new limits. Accept that you won’t be able to keep the same pace as the world around you. When I accepted this, I became happier.

Try practicing gratitude. Be thankful for small and big things. Like having a roof over your head, food on your plate, access to internet, friends, that you are able to shower, that you live in a peaceful country, that you can listen to your favorite music and watch Emilia’s lovely smile. Making this a habit will change your default mental state. It’s enough that you live life with a damaged brain, you don’t have to also live life in a bad mood. 

 

Final reflections on my life with brain injury 

You’ll have more success explaining what salt tastes like than explaining life with brain injury. It can only be truly understood if you’ve experienced it for yourself. Combine that with a deceptively normal exterior and others, maybe even yourself, may perceive you as lazy. I’ve finally realized the truth, that I’m not lazy and the judgements of others do not change that.  

Life hasn’t been too bad. I’m grateful for what I’ve been able to do, despite my limits. My injury has not inhibited me from experiencing what life has to offer. I’ve been able to dance, enjoy rewarding work, travel abroad, make lasting friendships, know the satisfaction of seeing my talents grow, feel the embrace of a woman I love, overcome heartbreak. These things do not come free of charge though. And now, after years of avoiding the irrefutable truth, Mr. Brain has come to mercilessly collect my debt. 

What I need to master now is how to balance all the factors of life in a sustainable way, and choose what those factors are going to be, because the cold hard reality is that I can’t have it all.

My finite energy reserve will not tolerate any disrespect. You might think that by now I should’ve gotten my act together, sorry to disappoint you dear, good-looking, reader. I will do better! Check up on me in a couple of decades and I might’ve gotten the hang of it. 

Thank you for taking the time to read my story. Imagine I bought you ice cream to show my appreciation.