This is part two of the story all about how my life got flipped turned upside down.
If you haven't done already, please take a minute to read part one first.
Firstly, I would like to give a big thank you to the people who resteemed my first post here on Steemit. Shout out to @nateonsteemit, @kafkanarchy84, @isabellemonisse, @scandinavianlife and @resteemator!
Previously on "I had a brain hemorrhage at age 17"
Here's a little music video that summarizes my experiences with the hemorrhage and the Intensive Care Unit.
And now, the story continues.
After ten days in the Intensive Care Unit - which seemed like months to me - my condition was no longer critical. I had to go to the ward, because this spot in the ICU was needed for new patients. But there is people and visitors and drama on the ward! Luckily, they had a few single-bed rooms especially for patients like me.
Moving to the ward may seem like a good thing, but - even in a single-bed room - the shocking bombardment of noises, people complaining, doors banging, babies crying, toilets flushing, visitors patrolling the hallways without understanding how badly some patients need quiet, was an entirely new stressor to deal with. However, I could lift my head, look around, move my arms, and talk. Albeit very slowly, monotone, and interestingly a higher pitch. And to me, things still seemed surreal. Everyone I saw was acting inexplicably happy. No one looked sad. Pretty logical in hindsight; when you're visiting or working in the ward, there's no need to act all depressed when there's plenty of that in the patients heads.
And then my good friend, let's call him Mr. Blue, visited. The first visitor who was not my immediate family. I recognized him. He was cheery. We talked about good times. I was laughing all the time. It felt like old times. Something was wrong though. I was not the person in these memories. This is not how we usually hung out. Those were my memories? But I can't do anything. It increasingly felt like I had lived someone else's life. All the good parts were not me. It became harder to keep up the smile. I switched from laughing to crying in two seconds. He started crying too, and laid his head on the hospital bed. This was the first time I saw the brutal truth reflected back to me. In this moment, about 14 days after the accident, I began to understand that this wasn't just my reality. It extended to everyone in my life. All those memories were me. I remember them. I just wasn't attached to them. Would I ever be that person again? People obviously loved me for who I was. I was certain now; this was the real thing. I had to deal with it.
Prior to the accident, Mr. Blue and I formed the super serious duo "The Interdimensionals". Together we traveled to many different dimensions in order to explore their secrets and turn them into music.
Pictured are Mr. Red (17 year old me) and Mr. Blue, as spontaneously photographed by a fan.
⚠ Questionable audio warning! ⚠Green Plant In The Disco Corner (1999)
Story: Suddenly we noticed a green plant in the corner of the club.The Hypermobiel (2000)
Story: Traveling on the interdimensional highway to the next dimension.
Every one of our "songs" had a story. I wanted to turn them all into computer games. When I have enough money to buy myself a year of independence, I'll start some indie game development!
However, I need a lot more than the $3 I earned with my previous post, so this might be a good time to open your Steem Wallet. 😁
With this realization, a new chapter began. The dreams stopped, and insomnia started. That night, I thought a lot. Trying to calculate my way out of this. Trying to place blame. Trying to understand what this means. Will I be like this forever?
I was alone in my little hospital room. Couldn't sleep. My mother had attached a picture of me to the foot end of the bed, so the nurses and doctors could recognize I was a healthy boy before they shaved my head and put tubes in my skull. I discovered my eyes couldn't focus nearby and I saw double. If someone would turn up the head end of the bed, I could watch about an hour of television per day. The rest of the day, I was thinking. Wanting to blame someone. Not finding anyone guilty. Except myself. Blaming myself. Getting sad. Every day. Out of all types of accidents that could potentially happen in your life, this one is pretty lousy in terms of blaming someone.
My mother brought a CD I burned just weeks before the accident with tracked questionable music I had made myself. Some girl, who came to talk every now and then (that was her job) arranged for a radio with CD player. That night I listened to my music, and I had to cry. Even for the really bad tunes. It is bizarre, when you are so broken both mentally and physically, to hear what you were once capable of. I was impressed, and had to think of other things that I used to be able to do. The silliest things that you wouldn't ever consider an accomplishment; walking, cycling, jumping. When you think about all the calculations and estimations you have to do, simply to jump from one rock to another, or to throw a dart; you start to see the beauty in the things we take for granted. In this moment I decided to strive for 100% rehabilitation. I would do whatever it takes! (Although after a month or two it would quickly evolve into "whatever I deemed necessary.")
The last song
This is the last "song" I made, just weeks before the accident. I recovered the "story" from the meta-data.
⚠ Questionable audio warning! ⚠Holy Disco 2000 (April 2, 2001)
Story: The Inter2 dimension is reached. It turns out to be a holy church. But wait... What's the organ player doing?
Oh no... he pressed a button and a disco ball pops out of the ceiling! I've never seen a big one like that in my life!
I get it alright. I've seen this kind of place before. It's one of those holy disco's! Yeah...
But what does he do now? Oh... volume goes down. Holy darn closing time! Time to take our interdimensional hyperdrive to the next plane!
I'm sure it will hurt some ears. 😂
I've always told people that I'm going to build games - that no one wants to buy because I'd be the only one who likes them - some day. 😁 I may have to reconsider aspects of this plan, because of reasons, but I wrote it here first!
Don't drop the filter
The drain in my skull was attached to an IV-like tube which went into an expensive filter. And although I did not have any surgery, there was not much cerebrospinal fluid coming through this filter anymore. So the doctors decided to close the drain by means of a little 'tap' inside the tube. As a test. The drain would stay in my head, and if things went wrong, the 'tap' could be opened again.
The neurosurgeons were puzzled by my situation. A pretty severe bleed with critical intracranial pressure, unable to see what had happened and where exactly, which now seems to have stopped completely? They saw this as the perfect time to take another look. I had to do another MRI scan. A nurse came get me and rolled my bed through all kinds of floors to get to the MRI department. She told me I should be careful when moving around; the filter attached to my head is very expensive, and should not topple, as the liquids would mix and this mixture should under no circumstance drip back into my head!
At the MRI machine they had to pick me up from the bed with four people and clumsily place me onto the MRI bed. It's difficult and frustrating to lack the skill of moving yourself. I told every single person to be careful with the filter. Some clumsy looking old lady pushed me into the MRI device, and - of course - dropped the %$#@& filter! %$#@! Luckily the drain tube was closed earlier that day as an experiment, otherwise all this goo would have seeped back into my head, causing all kinds of trouble.
Staying still for an hour inside the MRI tunnel. You hear stories about people going crazy inside the claustrophobic noisy device and hysterically attempt to get out. I'm not sure I understand this; they know it's for their own good? Either way, I probably couldn't get out on my own if I wanted to. 😂
Music to cover the mechanical noise
They advise you to bring a music CD so you can listen to some relaxing music while your head is literally in the center of the loud noise from the machine. The scan takes about 45 minutes. I listened to the album Rammstein - Mutter during the scan.Rammstein - Mutter
When they told me I could bring a CD, I thought they made a mistake. The MRI scanner creates a magnetic field strong enough to rip any metal straight through your body. How can you have all this wiring from the headphone speakers in the device? The solution is so simple I can't believe I didn't think of it; let's just blame the brain damage, ok?Rammstein - Spieluhr
There is actually a special speaker in another room. It's attached to a tube, and this tube goes all the way into the machine, to a headset. The headset itself doesn't have any electrical parts. This is also how they talk to you.
Back in my room, the nurses saw the drain filter all messed up. They needed to either replace the filter, or remove the drain. It was decided to remove the drain. For the first time in about two and a half weeks, I could carefully put my hand on my head, and inspect the damage to my hair. They put a bandage on my head. I mentioned about four times that I thought this bandage wasn't enough. They told me it's fine, and I fell asleep.
At some point I woke up because I'm cold. As if someone had let the window open. I put my hand on my chest to see if I was wearing one of those thin hospital gowns. Maybe I wore one in the MRI. I don't remember. But I'm wearing a shirt. And it's wet! I turn my head, and my pillow is soaking wet! All this cerebrospinal fluid had come out of my head! Laying in a pool of my own brain fluid - another once-in-a-lifetime experience! 😋 It was not like water. It was softer. Like silky syrup, but as thin as water.
Push the bell to alert the nurse. With a wet head I looked up and said: "Ehm... I think my head is not closed properly." (Why don't people in a hospital ever listen to you? I told them!) She was startled, and called for another nurse. Together they wrapped my entire head. Now I had a bandage-hat. The one you normally see in cartoons. More nurses came in. At some point I had four ladies around the bed. So now I know what it takes! 😆
I had to go to a bigger shared room. The private room had to be used for a couple of sick babies. This was a disaster. I couldn't cope with light and noise in a shared room. In the private room, I always kept the curtains to the windows closed and the lights out. This new room had three other people, huge windows, lights on, people watching television, and doctors and nurses visiting every one of them! (It was probably calm, but for me it was like trying to sleep in a functioning factory hall.) In hindsight I think this was good for me, to get used to reality. I did ask everyone to close the privacy curtain around my bed, because then at least it wasn't so busy in my field of vision. I saw everything double, remember? I have now learned that when visiting someone in the hospital, sometimes it's a nice thing to just close that privacy curtain when walking in, even if they don't ask for it and even though you're not going planning to wash their ass.
For some days I was allowed to drink increasing amounts of liquids. From the bottom of a cup through a straw, to half a cup, to an entire cup of juice. But today was a new mile stone: I was going to start eating again! Like mashed potatoes and boiled-to-near-babyfood vegetables. And slowly more chunky things. If I did good, they could finally remove that dreadful IV from my arm! In the hospital, this warm food was served at noon. I was however never hungry until the evening. And I choked on almost everything. So I barely ate. Because eating was now a big endeavor. My parents would feed me. Small pieces of meatball with a lot of gravy worked. But after a small portion of dry potatoes, I was getting nauseas. One time a speech therapist came to watch me eat, to figure out why I kept choking on food. And then she jumped back as I projectile-vomited the food over my entire bed. In stark contrast, I was sitting calmly and relaxed. Without panic or argument, I obeyed my stomach, who clearly didn't want the food. I was a slave to my stomach, and I would be for a long time.
After puking out everything, I felt the sensation of hunger. My stomach was kind of repulsed by this overcooked hospital food that I keep choking on and puking out though, and informed my brain that it wanted a sausage roll. I asked my dad to get one from the hospital restaurant, and 5 minutes later I ate the entire thing without trouble. I am not a 'princessy eater' and I did not force the nausea somehow, although I can imagine I looked a bit like a spoiled brad when food was concerned. This is a weird psychological element that has followed me for years to come.
Sometimes a good friend came to visit. I approved these visits to my parents. I heard a lot of acquaintances and class mates wanted to visit, but I rejected their requests (and kept this up for a long time). I lost some connections this way. It's hard to explain. As an introverted person, for everyone you interact with, you have sort of a personalized-to-them firewall around you that monitors and controls interactions with them. These firewalls have a certain thickness. You anticipate their responses, know what they like and dislike, you self-sensor. This is involuntary and costs a lot of energy. If there are four people visiting, you're wearing four firewalls. The total thickness of these combined firewalls equals the energy deficit that their visit would have to fill and transcend in order for it to be worth it. Only for your very best and oldest friends and closest family are the firewalls very thin. And only they are allowed to see you in your most helpless sad worthless broken state of something vaguely resembling the person you once was.
Sometimes it's hard for someone to deal with the fact that "the thinning of the firewall" takes years. Some people were offended by my refusal to see them (for months). I was being selfish. I apologize to them, although I don't regret my priorities.
One friend brought a huge card written to the brim with memories and wishes. Super sweet! I still couldn't focus my eyes, so he read it to me. I had tears in my eyes. I received many cards. Also a big one from my entire class. Everyone had written something on it! I always thought these things were lame, but no, this was really awesome.
Card writing tip:
If you have the misfortune of ever having to write a wish card for someone close to you in a similar situation, please write something massive! The stuff that's left after filtering out the hopes and wishes, that's the stuff that counts! Memories, jokes, something thoughtful, those things really cheer you up. The print on the card doesn't even really matter. A beautiful card with the written words "Best wishes, X, Y and Z" is... disappointing. I'm sorry. That's how I experienced it.
I myself have even started to write some wish 'cards' on the backs of pieces of ripped-off cardboard. My 'card' will stand out and they will appreciate it. (And if not, ah well there must be some other reason why I am their friend.)
(Disclaimer: People are different. Your mileage may vary.)
The physiotherapist came by. I had to sit up straight on the edge of the bed for the first time. This was weird! As if your center of gravity drops from your head to your toes and you're about to faint. The next day he put me in a wheelchair and we went to a little gym. I couldn't stand on my feet; I would fall. But after some practice I could 'stand' on my knees. He would randomly push me and I had to try to keep balance. After a few days I wouldn't fall over anymore. I was re-learning to keep balance! It would be a long time before I could stand on my feet, but I remember being very excited about this improvement.
Back at the ward I had regained enough control over my arms and hands that - albeit slow and clumsy - I could open and eat a bag of Hamka's (big brittle easy-to-grab chips). 😋 Lifting my torso up in the bed went better and better, also without help. When I was not too tired, my parents would take me on a wheelchair trip through the hospital. I can imagine how broken I must have looked. Unable to hold my body up, clumsy arms, messed up eyes, long hair with a big bald patch. But I can't imagine what it must have been like for my parents. To be there every day. Taking time off from work to visit their child, not knowing if and how much he would recover, if he still needed brain surgery, what the odds were for another bleeding. I am very grateful to them.
During one of these wheelchair trips, I saw some dude, probably in his late 40s, with the same hair as me. I think he was a visitor. I must have looked at him like locals stare at westerners in India. He assured me: "Hey, everything will be alright, yeah?" And then I had a grin on my face for five minutes. Which is interesting, because later I would find it annoying when people said that. Because they don't know. Maybe everything will not be alright. But in that moment, I felt invincible. I thought: "Exactly. I'm not dead yet. Everything will be alright indeed. Muhaha! 😋" The dude found that rare time frame where wishful thinking is acceptable. You, sir, if you ever read this, made my day that day. (Oh, and if you read this, and you were not in your 40s, I apologize, my eyes were messed up.)
The MRI pictures had come in, and were discussed within the team of neurosurgeons. They told me all kinds of theories about what may have happened, and the different surgeries I would need in each case. There was however still too much blood in my head for a clear picture. It was too risky to 'just wait' until the blood would subside. I had to undergo a vascular examination of the brain.
In a vascular examination, they make an inguinal incision, and use a long steerable catheter to go from an artery in your groin all the way up to your brain. They use a live low frame-rate
x-rated x-ray video view to navigate. Once they reach the brain, they start filming in high resolution x-ray while they inject a canister of contrast fluid into the arteries, which then spreads through the brain, allowing them to construct a map of all the veins. This way, any leaks and other errors around the bleeding area will also become visible.
When they explained it to me, it sounded pretty scary, but necessary. So I asked if I could go under anesthesia. They said it would be better if I was conscious, because the doctors could get feedback from me and see if I was doing okay with the probes in my brain. They told me I could a Walkman (this was early 2001 😂) and listen to music to relax.
I arrived in the operating room. Joke of the day: "No you can't use your Walkman. The earplugs will interfere with the x-ray equipment, and we want to talk with you during the procedure." I wished them good luck with the procedure. They cut open my groin and stuck a very long catheter inside. A huge robotic x-ray camera moved over me to help them see. To my untrained eye, the catheter-inserting-person seemed to, at least at the start, insert decimeters of catheter at a time far too quickly. I didn't really feel anything, except for imaginative stress to my veins because of what I saw. I have to admit I was part scared, and part intrigued by the process. I could see the monitors. They would talk to me. It was a weird experience. It got even weirder when suddenly my left ear became deaf. I said: "Ehm... my left ear is now deaf." They responded: "Yes, this is normal. The contrast liquid does not contain oxygen. It will pass."
It was done. They got the recording. Removed the catheter. My ear rebooted and worked again. One guy took a big bandage and pressed down hard on my groin for ten minutes. He told me the high pressure artery necessitates this, for a rupture in the incision would spray blood onto the ceiling. Fifteen minutes later the nurses could pick me up, and drive my bed back to the ward. He made it very clear that I should not to laugh or cough for seven hours. Because this was not your ordinary incision. This was a major artery, and a rupture would be really really bad.
This scary notion, combined with the considerable relief that there had been no complications and the scary procedure was now over, causes everything to be funny. Every sound, every remark. While the nurse drove my bed back to the ward, I had to chuckle about everything, and I tried to hold it all back without applying pressure to my groin.
Days filled with more and more physical therapy and speech therapy passed. After about 30 days of hospital, the neurosurgeon came by. His team had discussed the results from the vascular examination. It was an odd case. There were no signs of faulty veins, leakages, dangerous spots or other errors. But now there was a hole with a diameter of 2 centimeters in my brain. I had to come back for a final MRI scan so they would know more.
"What do you mean come back?"
"You can do the rest of your recovery as an outpatient in your local hospital. You can go home."
I had to wait for the final paperwork, which took forever (an hour or two), and my mom could take me home.
Sitting was exhausting like running to me, so laid down on the back seat of the car. The sunglasses my clever mother brought were not sufficient to keep the bright sun from making me nauseas. I used a pillow to cover my face the entire ride.
I recognized the turns we took as we got closer to home. Ah, that familiar feeling of the last turn into the driveway.
We stopped. Without opening my eyes, I was already visualizing the environment.
Where is the cat?
Is anyone still reading this? Would you like to know more? Help me get some nickels in my dusty minnow tin cup by resteeming this story!