Hi, I'm Sander
And I'm new to this community. I learned from other introductory posts that a personal touch is appreciated. So I'm going to share my most personal story. It all started about 17 years ago...
How (not) to skip finals
Imagine you're 17. Doing high school. Making music. Looking at girls. Worrying about finals. And then suddenly, faith hands you a way out of those finals. In one moment. Would you capture it, or just let it slip?
Let's just say that if life was a block-chain, the votes were cast by the stakeholders. I got to skip my final examinations. I got to skip a lot of things. And it wasn't until I was about 24 that I felt as recovered as I would get.
Summary
- I'm in my thirties now
- Intra-cerebral hemorrhage (ICH) at age 17 in the cerebellum (motor control)
- Physical revalidation 3 to 5 years
- Mental (social) revalidation 5 to 7 years
Immediate symptoms
- Everything malfunctioning: Relearn how to stand, walk, ride a bike, talk.
- Wheelchair and rollator (wheeled walker) for a couple of months
- Balance problems
- Fine motor skills gone
- Puking daily for an entire year
Sequelae
- Speech impediment when talking fast or tired; the "lalalala" ending in Luciano Pavarotti - Figaro is now impossible 😅
- Balance problems in the dark and when tired
- Alcohol causes "double damage" (motor control)
- Bigger latency in my right hand; no more playing guitar or holding the game controller upside-down as special skill when playing Mario Kart
- It took a while to
thinkcare about the future and plan for a career; it took me 7 years to finish my 4 year Bachelor of Art and Technology degree
So about a year after it all happened, I started writing my story down for my friends and family. In my native language: Dutch. And now, for your entertainment, I'll start translating these writings to English. If the community approves, I'll make this a two or three part story!
I wish a story like this existed when I was 17 for me to read. No one could tell me what to expect. At the same time, my GP told me that never in his career had he seen something like this happen to someone who is not either a baby or a senior. And in those cases, the story would be entirely different.
Keep in mind that this is all written by an angry 18-year-old. I'll edit in some notes, and remove profanity.
The shower
Some people ask me why I'm still in 11th grade, which is the last year of high-school in the Netherlands for "HAVO" (higher general continued education) at age 18. Almost weekly, I get asked why I have a bobby pin in my hair. (I had long hair at the time.) Some people comment on how bad I am at playing the guitar for someone who started six years ago. And every now and then people laugh at me for losing my balance in a moment where you wouldn't expect it from a normal human.
I feel the need to write this story down properly. For those who are interested, and so I don't have to tell the same story to people individually.
Saturday, the 19th of May, at 3 PM or something, I was happily chilling in the shower. Suddenly I had this spontaneous terrible feeling in my head. Hard to describe; it didn't feel like a headache. I mainly felt it behind my eyes. I think pushing your eyes with your thumbs very hard hard comes close. (Please don't try this.) Immediately I thought: "Oh God, I'm having a brain hemorrhage! It won't take long until I lose consciousness! 😧"
(I'm blessed with this trait of recognizing physical problems. When I was 10, I fainted and my grandfather called 911. I told the ambulance crew that I had appendicitis. "We'll see about that, OK?" That afternoon they took out my appendix.)
In a few seconds, a lot of things cross my mind. I was sure, but I couldn't believe it. I quickly looked for other assertions that would explain this sensation in a healthy boy my age... and then these symptoms began: My vision changed. It's not exactly tunnel-vision, but it was as if I was further away. Delayed a bit. My audio perception changed. The water splashing from the shower suddenly sounded unrealistic. As if I was dreaming. But the pain in my head kept increasing. So much pain cannot be perceived in a dream. At first I didn't want to acknowledge this, but it only kept getting worse. Some intuitive auto-defense system kicked in. I had to move myself to the living room, where hopefully I would run into my father.
I turned off the shower (neat huh?), but I felt so nauseous and steerless that I was unable to dry myself using a towel. Aware of the fact that I was naked, I put on a pants (no underwear) and a t-shirt (while wet) and stumbled down the stairs. (Dutch houses often have the bathroom on the second floor.) My audiovisual perception was very weird; very far away. There was no one in the living room. The garden door was open, and I was freezing cold. I dropped down on the couch and I couldn't get up anymore. Think, think, think... How could I get myself out of this situation?
Bubba
I looked at the garden door and hoped my father was somewhere in the garden. My big brother was at a friends place and my mother was visiting her parents who live three hours away. I decided to call for my father ("pappa" in Dutch). I sent the command to yell "pappa!" to my speech center, and I was surprised to learn that my power of speech had also been compromised. "Bubba! Bubba!" I yelled. My father came in, saw me hanging on the couch like an idiot, and called our doctor (GP) immediately. I'm so thankful for that, because I don't think I could communicate much more. My head felt like it turned inside out, and I puked everywhere around me. When I was done puking, I was so terribly cold. Then I saw my little brother (age 11) standing in the garden door opening. I wanted him to close the door. But in that moment, I couldn't generate a cohesive sentence, and he didn't understand me. I got very angry inside my head. Not at my brother, but at the situation of being trapped inside a malfunctioning body. And the poor guy must have been pretty freaked out himself. Seeing his wet big brother in a circle of puke.
The doctor arrived. I had to tell him what was going on. I practiced a few times inside my head. Then I pointed at my head and said: "Help me. Brain hemorrhage!" And then I lost my consciousness...
(This next part I can't remember. I was told later.)
The doctor ordered an ambulance and we raced to the nearest hospital. They stuffed me in a Magnetic Resonance Imaging (MRI) device. The standard policy for people flipping out and puking at my age is to test for drugs, toxins and substance abuse, which would quickly take half a day. Had I not told the doctor anything, there's a chance I wouldn't be here today.
The MRI indicated that there was indeed an intracerebral hemorrhage in progress, in the little brain (cerebellum). This hospital was only good for cutting tonsils, so we got back on the ambulance and raced for 45 minutes with 160 km/h (100 MPH) to a bigger hospital.
It wasn't clear where and why there was a bleeding, because the MRI pictures were obstructed by too much blood. The blood pressure kept squeezing the brains, and pieces of brain started to die. The pressure had to be relieved. A small wait for an operating room to become available, and then they could "operate". Well, operate... they shaved part of my hair, drilled a hole in my skull, and stuck a tube called "drain" inside. Done! To the Intensive Care Unit (ICU)! Meanwhile it's 8 PM, and I had been unconscious all this time... (My father later told me that I briefly regained consciousness in the ambulance.)
Waking up
At some point, I wake up in the ICU. It is really indescribable how unrealistic this situation was! I couldn't do anything. everything seemed fake. I had four intravenous infusions (IVs) in my arms, of which one emerged close to the heart. Two probes; one through my nose into my stomach to pump out stomach acid, and one though my penis into my bladder to remove urine. (Yeah, go ahead and laugh. Do you think you can pee in a situation like this?) And finally the drain in my skull. I was on my back, looking at the ceiling. And suddenly I saw my parents' faces. My mother - who was visiting her parents - had heard the news and my grandfather had driven her to the hospital. A 3 hour drive.
I fell asleep, and dreamt wonderfully vivid beautiful dreams. I could walk, talk, and everything! My dreams were more realistic than reality! It's incomparable to a normal dream. I met my favorite uncle (who is dead in real life) and I was so happy. I got younger and younger, and I was back in our old house. I played with childhood friends. I had some unrealistically big bowling-ball-sized jawbreakers - which I dreamed about when I was a little kid - hidden in the attic. I was having so much fun with my father. Sigh. I know, in hindsight, that these were just dreams. But if I had died that night in the ICU, I would have been convinced that the dreams were real, and I would have been happy.
Again and again I was ripped from my "reality" and put back in actual reality. It confused me every time. What did they do to me? How come I can't move or speak? How do they keep pulling me back? Actual reality was like a nightmare that kept coming back. I thought the people that took care of me in the ICU were doing this to me. I didn't trust them. I thought my parents brought me there. I did not understand. I was either very hot or ice cold; never comfortable. The next day, my parents visited in the afternoon. This hospital is about 75 minutes away from their home in normal traffic. I was angry and sad; with tears in my eyes I asked if they could please visit me more often than once every few months. (I later learned that they drove between home and the hospital twice a day. My time perception needed recalibration.) I was able to talk to my parents in a soft, slow, high-pitched monotonous voice. Visiting hour was over. My parents left.
Slimer
After laying on my back for forever, I couldn't take it anymore. I wanted to lay on my stomach. I struggled and struggled, and finally I was on my stomach. Suddenly I heard nurses rush towards me, panicky voices. Heheheh. In retrospect I can imagine that it was a bit scary. Seven IVs and probes in my body. Extra wires for monitoring heart rate and oxygen levels. All attached to two cabinets filled with devices and computers. And then I turn around without regard for any of them, because I didn't understand the seriousness of the situation. There were small moments of semi-clarity ("some aspect of this must be real because I keep coming back to this") when my parents were there. Between big moments of disbelief when I woke up from a beautiful dream. But in this moment, the nurses saying "you can't do that!" were further proof of them being mean. One time they forced me to take a big black pill. They didn't tell me what it was for. I thought maybe this is how they kept me in this state. I hated their voices discussing what they would do to me next. This liquid. That pill. "You have to cooperate now." Anyway, I was too tired to reply, and I heard one nurse say to the other: "Lines are stable, let's leave him like this for a bit." I recall this as a big moment. It was the first time I moved. It was the first thing that happened by my design. My choice. And it was important.
In hindsight
I am absolutely grateful for the people who took care of me. I think it must be an ungrateful experience for the nurses and doctors on the ICU, when patients with a diminished capacity for rational thought are uncooperative and misguidedly wary. "I" was still inside this body though, and capable of some rational thought. It would have helped if someone would tell me every day exactly what had happened. How many days and hours had passed. What the pills were for.
This is the biggest hospital in the country and the biggest employer in the region. Yet I have never been approached about my experiences in the ICU. I think if they would follow up on all patients six months later and talk with them, they could come up with a protocol that would make more sense to the patients. Then they would trust their nurses more and be more cooperative.
Either way, at some point during my recovery, I went back to the ICU in a wheelchair to see what it looked like. All I knew was the ceiling. The blanks I filled in were a lot less scary in reality. The place was smaller. I recognized a clock somewhere on the wall. It was emotional for me. I thanked the people who took care of me while I was there.
At some point my parents came to visit with my two brothers. I was pretty irritable, because the permanent lights in the ICU make you crazy! There is always light! And the sound! There is all this equipment buzzing and beeping and alerting. Just let me be dead in peace! I thought. Every time I attempted to communicate with my family (I can't remember if I said things that made sense, or what we talked about), I was punished by a slime-suction-sound. I started to realize that there was another prisoner (read: patient) next to me, who's equipment produced this slime-suction-sound with a certain interval. I couldn't see them, as I was staring at the ceiling. After the n-th time, my arm (with two IVs) went up... I flipped slimer the bird! I wish I had a photo of this. For me this was the second important moment. It showed some spacial awareness and surviving personality traits. I was slowly regaining territory inside this body.
2018 Parental tip:
Speaking of photos - my parents decided not to take any, for reasons. At a certain point during my recovery, I could really use some photos of myself in the hospital. Especially from the early days. To give it a place. It's "evidence" I'm somehow missing. And to this date sometimes at random moments I regret not having pictures from this period.
I would advise you to take pictures. And mention you have them a month later. Or three years later.
Another powerful tool is a mirror. The first time I saw myself, I cried. But for me it was a helpful reality check. Don't do this too soon though.
Scarface
I had not thought about school or the exams at all. I was in 10th grade "HAVO 4" (second-to-last year) when this all happened. Previously I had only three problems. French, German, and being a teenager. When I dropped from "VWO" (preuniversity secondary education) to "HAVO" (higher general continued education), I only had two problems left. And that was manageable. Until this happened.
Back in high school I had this history and sociology teacher. He was considered strict, and I liked it. I don't recall I ever had a problem. And I appreciated not having my time wasted by people causing trouble in class. His near-zero-tolerance policy and a scar on his face gave him the school-wide nickname scarface. He must have heard the same question many times: "How did you get the scar? How did you get the scar?" No one would ever get an answer.
One day in the ICU, a nurse appeared next to my bed. Except with a familiar face. It was scarface! Apparently he worked two jobs. One as a teacher in my home town, and one as a nurse in this hospital. He had heard, and came to visit. It was nice to see him. It broadened my reality. I regained even more territory. And although I would not give any thought to my education for some time to come, the concept of school was now back on my map.
I was excited that he had shown up, although for understandable reasons and ICU rules, he kept his visit short. I leveraged my unique position and demanded that he'd finally reveal the source of his scar. I honestly don't remember the specifics of his answer, but he told me!
He told me.
Is this story relevant to your interests? Should I continue? Let me know! 😊