Stories of our members

The following narrative was written by Pavel, whose family heard the following ruthless verdict from the doctors three years ago: “Prepare for the worst. He will die in a matter of weeks, maybe months, he will not wake up from unconsciousness, you have to accept that”.

Today, Pavel (44 years old) is able to type out his story on the computer:

In 2020 I had a stroke.

The day began like any other ordinary day. In the morning I got up before six o’clock for work, at eight I took the children to school, there was a meeting with my team at half past eight, and at nine with management. And between these two meetings it happened.

Then I was in a coma until Christmas and spent another six months in intensive care, where they brought me back to life. I still had two tubes coming out of my stomach. Then I spent a month in the incredibly terrible Chuchelná rehabilitation center, then finally three months in Klimkovice. That’s where I became a man.

Then I tried to develop into a state where I wouldn’t have to be ashamed of my disability. But in March of the following year, I broke my hip. And that’s where my problems started. I couldn’t step on my right foot. And that limits me until today.

In June we went on holiday for two weeks, at first to the Alps and then to the sea. The sea in particular gave me a lot. I swam with a mask without problems. But my wife had to help me get into the water.

I started going for botulinum toxin treatments around this time. First twice to Ostrava, then three times to Olomouc, once every three months. I also go to Jitrocel in Olomouc to exercise once a week for the whole morning. I still go to an exercise therapist once a week for one hour, and we’ve contracted a trainer for full body stretching for one hour. I also trained three times with Šumper’s Pontis for a three-week off-site.

It’s been three years now, I’m in a wheelchair, I can’t feel or use the right side of my body and I can barely speak. That’s a complete description of what I can do.

His wife Jana, an architect by profession, adds to Pavel’s story:

My husband suffered severe bleeding in the brain without any external cause, a small blood vessel burst. It was a sudden event in a completely healthy person, an athlete who did not even get sick once in the last 14 years. From a great athlete, an active husband, a father of two children, he became an invalid dependent on someone else’s care. It happened from one minute to the next. I was left alone with two minor children and worries about my bare existence (mortgage payments can’t wait). I became a full-time breadwinner and provider for all my husband’s needs. It is exhausting.

He was on a breathing machine for more than a month, unconscious for a total of four. In the Military Hospital in Olomouc, he slept a lot, cleared his mind, exercised a little, but could only communicate with a table of letters. Then followed a move to Chuchelná, where he was supposed to get in shape. It was a very traumatic experience for him and our family. The care there during the covid period was definitely not ideal. Today, we see it as a dead end to getting healthy. I did everything I could to move him to Klimkovice, where he completed a three-month special neurorehabilitation program, which brought him back to life and, above all, restored hope that nothing is completely lost.

Pavel began to really push himself. At first he could not speak, and today he can speaks intelligibly, though slowly. He had double vision and poor eyesight – today he is able to read normally. We are also training him to walk. His disability made him into a one-hundred-year-old, and in the beginning he could only move his left arm and leg a little. He was a great athlete, a hard worker , a healthy person, so he has a chance.

He didn’t give up. He is getting used to a different life, though perhaps limited only in a wheelchair, and plans to be able to take care of his children and return to his profession as a mechanical engineer in the future. But first, he needs to regain his lost self-sufficiency, especially through special neurorehabilitation.

Special neurorehabilitation, clinical speech therapy, eye exercises and many other treatment methods are not fully covered by public insurance, and are very expensive. It is extremely time and financially demanding to secure the care my husband needs. Fundraising through Konto barriery helped us.

I try to give my husband as much psychological support as possible. It’s a constant struggle.

All that remains is to struggle and hope that Pavel’s brain will find a way so he can be self-sufficient again. Self-sufficiency! That’s my wish and his!

For this year, we are purchasing a special Exopulse Mollii Suit for Pavel, and we plan to continue neurorehabilitation at the Jitrocel Olomouc center, Pontis in Šumperk, and speech therapy in Klimkovice. That’s not all, he has to practice speech therapy and other cognitive functions for an hour every day. And he also has to live a little – take care of his children and his wife. He really wants to buy me a flower for my birthday this year. And he also wants to clean up the workshop, be useful…

It happened to me eight years ago, in October 2015. I was driving home from work, suddenly I started to feel strange and found that I could not take my left hand off the steering wheel. I stopped but had to open the door with my right hand. I went around the car and the feeling passed. I got home, sat down, but then couldn’t get up. I called myself an ambulance. They transferred me to Bulovka Hospital. At first, nothing happened there for two days, although the left corner of my mouth was drooping and the whole left side of my body remained motionless. Days in the neurological ICU followed. A CT scan showed that one blood vessel in my brain was occluded, apparently at risk of bursting due to the high pressure. I didn’t even know I had high blood pressure, I hadn’t seen a doctor in years, I felt healthy, and I donated blood.

I spent fourteen days in the ICU, it was like being in a four-star hotel. An experienced physiotherapist put me up there. Then they transferred me to follow-up care, and there it was already worse in every way. I didn’t know how to exercise and what to do with myself so that I wouldn’t be dependent on the care of my family. Fortunately, I managed to get to the rehabilitation department in Malvazinky, where I stayed for six weeks. There was physiotherapy, occupational therapy, a swimming pool and I paid extra for speech therapy. I set myself a goal: I will go home when I can eat with cutlery. I achieved that, but what next? I had spasticity in my left biceps and muscle spasticity in my left leg which almost prevented me from walking at the time. I wanted to continue my rehabilitation. We called a lot of specialized facilities, but they were all full and gave me an appointment several months away.

Until I came across the Albertov day care center, which is run by the VFN Clinic of Rehabilitation Medicine. That was a miracle that changed my life. I started attending treatment programs with Dr. Šebková. That is where you really begin to improve, especially if you have the will. Of course, cognitive functions develop in the inpatient facility, but also the ability to be self-sufficient. For example, they bind your healthy hand and you have to do everything with the affected one. Shopping and cooking as well as the opportunity to take part in excellent reconditioning stays with REHALB are part of the program. You can also opt to go rafting and for trips around the area. There is an excellent group at the hospital. We understand one another. This also helps us all mentally.

Today I am a happy old-age pensioner. I have a wife, two sons and a two-year-old granddaughter. I even went back to work for a while. I can’t run, which I used to like, but I walk. And thanks to TurboMed, which I have on the outside of my shoe, even the paralyzed tip of my foot gets lifted up, which I would otherwise trip over. I am self-sufficient, even though I never fully regained control of my hand. One has to have the will. When you just surrender yourself to your fate and stay in bed, no one will raise you up. But I know it’s hard.

I am 42 years old. I can converse backwards, in Czech, German and English. I enjoy this and it helps me think. I also really like numbers. That’s why I know that 30 years, 8 months, 4 days have passed since my accident.

It happened on the day of the half-term holidays, February 1, 1993. It snowed. We went sledding on the slope behind our block of flats. Some boy I didn’t know crashed into me at full speed. I stayed on the ground, but he didn’t care, he ran away. After some time, a neighbor found me and said Honzík, get up and go home, you can’t lie here. I somehow got up to our apartment on the eighth floor, rang the bell and fell. I just said “Dad, help”. They took me to Thomayer Hospital. Unfortunately the surgeon there was not good. At first, he said, he watched me for five hours and waited to see what would happen. He was just wasting time. Then he put a hole in my head and didn’t know how to proceed. He called all over Prague for someone to operate on me. Then I was transferred from hospital to hospital. I had four operations. I woke up in three and a half months, but even then it took a long time before I began to perceive.

My mom was amazing. She sat with me and read to me when I was in a coma. Then one day, when she was at home, her nurse called her that Honzík had woken up and was yawning, she was overjoyed. Then she gave herself completely to me. She had to teach me everything again, I didn’t know anything. Long-term memory returned over time, but I was asking three times a minute, for example, what day it is today. That’s how I am to this day. I don’t memorize data that changes, I try to memorize only what does not change and important to me through repetition.

I woke up at the end of May, in August we went to Jánské Lázně. I was a quadriplegic, unable to move without a wheelchair, my left arm constantly in spasm. The nurse at Vesna in Jánské Lázně kept me moving.

Seven and a half months after the injury, I stood on my own two feet. That was at the end of September. I went back to school in October 1993. They tested me and found that I could remember learning until the middle of the sixth grade. My mother took me to school, she was my assistant. Dad left us soon after my accident. He married his subordinate in the company and had other children. It was a blow for mom.

I graduated from elementary school with honors. However, my road to graduation was thorny. During the holidays, I went to the spa, first to Vesna, and from the age of sixteen to Kladruby. That always helped me. After some time, I applied to the business academy in Pertoldova Street. My mother took care of me, took me to and from school. One day in February 2000, when I was in the third year, she didn’t pick me up. Somehow I got home by myself, on foot and by tram. I was home alone and my mom was missing. I then  learned that she has collapsed and is in the hospital. My grandmother and grandfather took me in, they took me to their cottage, but I couldn’t go to school.

I went to Kladruby in the summer. I managed to get my driver’s license there, even though I passed the theoretical part of the examination only on the second attempt.

I returned to school in the fall, but had to repeat the missed year. In April, I was forced to drop out of school again because I had surgery to lengthen my Achilles tendon.

Since my mother could no longer take care of me, I entered the business academy for the physically disabled in Jánské Lázně the following year. That was a disaster. Both classmates and teachers and educators at the boarding school. It was a shock to me. There were no normal people like I used to know, but only social cases, there was stealing and the teachers were not interested in teaching. Moreover, my grandfather and grandmother often drove for me and took me to the cottage for the weekend. I spent three years there and I don’t want to remember it. I then completed my high school diploma remotely at the business academy in Ječná.

Mom spent most of her time in the hospital with a serious illness. She died aged 57 before Christmas in 2014.  I was 33 at the time.

I started studying English at Cambridge Institute. “Repeat, repeat, repeat”, I kept saying to myself over vocabulary and grammar. I repeated until the information could bypass the missing short-term memory and be stored in the long-term.

After graduating high school, I found a job at KFC. I got up before four in order to be ready for the arrival of my assistant, Markéta, at 6:15. It was a service paid for by my father. I lasted half a year at KFC in Budějovicka. I found that the assistant service cost more than I earned.

After that, I still worked at Dialogus, but that didn’t really mean anything to me.

I have left sided hemiparesis, which means the entire left side of my body is numb. At first I had a partial disability pension, in 2004 I was awarded a full one.

I am a cheerful person. One has to get used to things that cannot be changed. In the summer I go swimming, play the harmonica with a friend. I have a large audio library with fiction by Czech and international authors. I listen to Hrabal, Ota Pavel, Francis Scott Fitzgerald. I can read, but my eyes tire quickly.

Cerebrum helps me. I go to cognitive function training. There are great people here. I try to live as best as I can within my means. There is no point in lamenting.

I am 53 years old. Fifteen years ago, I was a dispatcher in air traffic control. You sit in front of a flashing screen, each light represents an airplane, and each airplane represents several hundred people. You only communicate with the pilots in English and you must not make the slightest mistake. This demanding and terribly responsible job fulfilled me.

Then a blood vessel in my brain burst. Today I prepare sandwiches and I am glad that I can work at all.

That time I woke up after ten days in Motol Hospital. I remember almost nothing from that time. The nurses used to take me out to the balcony to watch the planes. I didn’t speak, I didn’t move. Just turn, wrap, wash, feed. And watch the flies. I felt completely helpless. I was released after six months, in a wheelchair. This was followed by Kladruby, the neurorehabilitation spa at Slapy, Mariánské Lázně. My mobility was slowly coming back. I was learning to speak, read and write again. It was not easy,  everything took a lot of effort. But English completely disappeared from my head.

My family was used to a high standard of living. There is a lot of money to be made in air traffic control, I would say deservedly so. Incomparably more than what a disability pension provides. My wife cared even for a certain amount of prestige. We had a lively social life. It was all over, I felt it couldn’t go on like this, so I left my family after an agreement. I stayed in touch with the kids. I left joint property to my wife, from which she now contributes to my living.

I went back to my parents house. Living with parents who I used to see only a few times a year isn’t ideal for someone my age, but I’m grateful for it. Being completely alone, I probably wouldn’t give it. I may seem completely self-sufficient at first glance. But my hands are shaking and I have trouble with my balance. I walk with two sports sticks, as is the fashion these days. Before that, I ran sprints, skied, and worked out. I was a muscle man, now I’m tiny. I tried riding a bike, but I ended up with a broken limb. So I at least stuck to swimming.

Not even my head is what it used to be. Sometimes I forget. I have to focus even on simple routine like brushing my teeth and getting dressed. When I go to the post office, I look for the right entrance again and again. But I passed the basic driver’s license test. Thanks to this, I can commute to work.

I live a different life now. It is no longer the constant pursuit of something. I am happy that I can go to the cinema, that I can go swimming, that I managed to take some nice photos. I have been coming to Cerebrum for many years. It helps me a lot. I still learn new things here, practicing my memory, playing chess. I’m learning to think one step ahead, that’s difficult. I’m letting my brain run. I’m not giving up!

It’s been two years already. I was almost twenty-five at the time and I was working in Prague as a paralegal. After a successful pre-Christmas party with my colleagues, I set out on my way to Liberec to see my very good friend at the time. We spent a lot of time at another bar. In the morning I sat with her in my car, in the passenger seat. I myself don’t know how and why the keys got into her hands. As I found out later, I had a BAC of 0.15%. My friend who was driving had quite a bit more. The car drove into a slope right at the exit from the city and flipped. I then spent six weeks in the ICU in the hospital in Liberec. I remember practically nothing about it. Only helplessness. The first fleeting memory is of being transported to the Vršovice hospital in Prague. According to my brave mother, they didn’t really do anything with me there, I just lay there. So my mother arranged for me to be hospitalized in the specialized Chronicare mund Brno. I started to improve there. Movement problems gradually disappeared, I only had a balance disorder. It was worse with the head. From Brno, accompanied by my mother, I went to the Klimkovice spa for a month. It was perfect there, it helped me in every way. So it was actually a six-month stay under medical supervision.

From the neurorehabilitation spa, I went home to Slovakia, where I spent the next six months getting myself back in shape. I took sick leave, but I did not undergo any treatment. I realized that there was something wrong with me. That I don’t remember much, I can’t read as much and also concentrate, it’s harder for me to express myself. However, family and friends reassured me that it was good and that it would get better with time. I had no real feedback as to whether I was improving or stagnating.

Therefore, I returned to Prague and started working again. I worked with great commitment, really with great effort, but I could see myself that the performance did not match it. However, I nobody gave me this feedback before the end. Because of how I was feeling, I often contacted my mom, who I sought comfort from. My boss was very accommodating, but after half a year he gently told my mom that my performance was barely fifty percent compared to the time before the accident. So now I’m on sick leave again.

But I’m already trying to do something about my problem. I don’t understand why I wasn’t put in touch with specialist workplaces or patient organizations right after I was discharged from hospital. It really only started when I returned to Prague, where it all fell on me. I first found care in the stroke association, which I read about in the newspaper, and which then gave me contacts to places where I can monitor and also improve my health, namely neurology and speech therapy. The speech therapist then gave me information about the existence of centers such as Ergo Aktiv and Cerebrum. I did not hesitate at all and contacted them immediately. These organizations help me, also psychologically.

Of course, I had to, and still sometimes have to overcome depression. I had self-destructive thoughts and tendencies. I asked myself why I survived, why didn’t I die in that car? I’m useless anyway. Following that, I also wanted to hurt myself. This has already improved with the passage of time and I see everything completely differently. I live alone and manage.

I already understand how the brain works and what I need to do to make it work better. I don’t want to go back to my previous job. I wonder what to do next. I would like to work as a lawyer in the healthcare sector, for people in difficult situations.

Can I accept that my brain may never be the same again? I don’t know. I will do anything to get my abilities back.

An interview with a caregiver mom about why she and her daughter Adélka have been returning to Cerebrum for the past three years.

Adélka comes to cognitive functioning and memory training. These trainings are open to anyone who want to improve their condition following brain injury.

I think most of you remember well that period when you managed to finish high school, and then maybe get to college. Such is the end of one great chapter and the beginning of another. Back then, in 2001, I also managed to graduate successfully, and my prospects for further studies, in the field of informatics and computer technology, were also promising. True, I had headaches more often these last few months, but tell me, who didn’t have headaches during such a busy time? I also started to feel a slight deterioration in my vision. That’s why my parents ordered me to have an eye examination. There, bleeding on the fundus of the eye was revealed, and subsequently, a brain tumor was detected using a CT scan. Moreover, it later turned out to be malignant. Due to its size and type, an immediate operation was necessary, which I underwent at the University Hospital in Motol. During the operation, however, there was a sudden, violent swelling of the brain, and in order to save me, the doctors had to remove additional brain tissue that was not originally affected by the tumor. This caused further subsequent issues.

One life is over. But the second one has started!

At first my condition was very critical and I had to stay in the ICU for two months. I couldn’t breathe, eat or move on my own. Obviously I don’t remember much about this. Rather, just some fragments, images that sometimes emerge from my memory. After some time, however, my condition improved, so they could move me to the oncology department. There I started chemotherapy and radiation. Chemotherapy is a very harsh therapy and I had to undergo it repeatedly throughout the year. I had to be in the hospital most of that time because I had virtually no immunity due to this treatment. In addition, during that time they had to operate on me again.

Already in Motol, a physiotherapist, an occupational therapist and a speech therapist came to see me. The occupational therapist and I initially focused on self-care in the hospital. I tried to take things off the table, put on a shirt myself and stuff like that. But the truth is that I was only able to really start rehabilitating after the end of the oncology treatment. I continued to go with my dad to Motol on an outpatient basis, because the consequences of the brain damage were not few.

I’ll start with mobility, for example. I was completely paralyzed on the right side of my body for a number of months, but luckily mobility slowly started to return. Even so, for a long time I was dependent only on a mechanical wheelchair and the help of another person. It was caused by severe right-sided hemiparesis. Of course, I still have it today, but thanks to many years of hard work, it is something else entirely.

What I’ve just had to learn to live with and can’t do much about is my permanently damaged vision and impaired fine motorics. Not that I can’t feel anything at all on the right, but without visual inspection I don’t know exactly what that hand is doing right now.

What was very difficult for me and what I had to put a lot of effort into was the complete loss of the ability to communicate due to severe expressive aphasia. It was really difficult for me to relearn individual syllables, words, sentences, and also to be able to recall and say them quickly in a certain situation. I also forgot the overall meanings of the words. I could recognize those closest to me, but I couldn’t name them in any way. I couldn’t read, write or do math. Practically all the knowledge I had gained in my life so far was gone. I even had a problem with my own name. And of course also difficulties with attention, concentration, associated with increased fatigue.

I had a big problem with all kinds of memories. Even there, progress came over time, thanks to consistent practice and patience. Just the different kinds of flashcards in my box that my dad used to practice words and their meanings with me. I will mention the alphabet itself as one example out of many. For an adult, the matter is absolutely clear and simple. Suddenly a big problem for me. The card had the letter “A” on it, and I was supposed to repeat it. Before that, my dad said it out loud. It took me a while to realize and clarify what was wanted of me. I replayed the letter in my mind. I was almost 100% sure I was going to say exactly what I was supposed to say. And yet when uttered
that letter was sounded by a completely different letter. It was sometimes very emotional, because I was fully aware of the mistake, and even then I made it many times. Play-dough helped me a lot, where I memorized letters by association with painted pictures.
I have also been to Jánské Lázně several times. I was very lucky to be able to see a physiotherapist who, using Vojta’s method and her incredible abilities, helped me to move more again.

Another place where they took me a big step forward and where I could rehabilitate intensively was at the Rehabilitation Medicine Clinic of the 1st Faculty of Medicine of the Charles University in Albertov. Within the framework of the day care facility, I was able to improve in all directions, both physical and mental. Over time, I learned certain procedures and strategies to remember certain information faster. For example, it was various mnemonic aids, associations or categorizations that allowed me to remember words longer.

I also enjoyed going on rehabilitation off-sites with Albertov. The most important thing for me was that I could meet a lot of new interesting people who, like me, have to fight with their destiny.

But everything comes to an end, and even Albertov couldn’t give me more. For a while I didn’t know what to do next, but I still felt that I still needed to catch up on a lot of things. And so, again thanks to my parents, I got to go to the Jedlička Institute for a year. I don’t regret it in any way. Of course, it was a little unusual for me at first, to “sit down at the school desk” again after so many years, but it was definitely nice.

But more and more I began to realize that simply going to therapy was not enough for me. That despite the constant handicaps, I would like to do something more, something useful.

In 2007, the association Cerebrum – Association of people with brain injuries and their families was founded. At that time, I was not entirely sure that this new association could achieve anything. But I quickly found out that the association really meant it. I am very happy that Cerebrum is still working and still helping people like this. People after brain damage.

I think that everyone who has experienced an injury, illness or life crisis in their life has a significantly different ranking of their life values ​​than before. I’m no exception either.

I am now 46 years old, I suffered a head injury when I was 15, so it has been 31 years. But I know that then I began to perceive everything completely differently.

As a child and teenage girl, I had a huge desire to ride horses and do everything around horses. At that time, there was no riding squad or professional guidance. I went where there were horses and rode whatever I could. So I was an inexperienced riding half-wild horses, and so I just fell a few times and went on. The next day I was riding and suddenly I fell to the ground, everything spun around. Well, after that, I still rode my bike home! At the same time, I had a brain hemorrhage – subsequent surgery, suctioning of the hematoma, and then paralysis on the right side of the body (right-sided hemiparesis). The worst thing for me, as a fifteen-year-old girl, was cutting my hair completely. Now I remember it with a smile, but at the time it was really terrible. Girls my age were starting to go to dance classes and they were so “beautiful”,… I know I even locked myself in my room when a friend came to visit me so she wouldn’t see me without my hair. They helped me enormously at rehabilitation center Kladruby. I was there for about 3 months, I learned to speak, write, walk…. What’s more, I met many people who struggled with much bigger problems. I saw how they overcome them, how many still have a sense of humor … it gave me a lot of motivation to work on myself, my health or my mobility. When the affected person is alone, they often fall into anxiety, depression, hopelessness and feelings that everything is in vain. The psyche is extremely important, and it is even more so for a person after an injury and subsequent rehabilitation. Closing yourself off and being alone is the worst thing. But it’s so convenient.

I also have to say that I was already a believer at a young age, but I really started to study the Bible in depth only after the accident. Thanks to this, I have a strong faith and an active spiritual life. This helps me immensely in my daily life.

Over the years, of course, my health has deteriorated, but I try to use the rehabilitation facilities, as well as the spa, because I always get new ideas and friends there. I really appreciate the reconditioning stays from the Albertov Rehabilitation Clinic and the Cerebrum association, where there is a program throughout the day, both for physical fitness, memory exercises and fun and friendship. I really like the good atmosphere that is everywhere. No spirit of selfishness, rivalry, but an effort to help the weaker. And it also makes me feel good that I can have my dog Sára with me. She is preparing for canistherapy exams and loves the presence of more people.

I know that after the injury, I walk badly, I have problems with balance and fine motor skills, but I am much more empathetic and friendly. People after a turning point in their life need to join a team, a community and constantly nurture their desire to live.

It was 2005, if I remember correctly. I led, I think, a fairly orderly life. I had a girlfriend, she lived in an apartment – admittedly in the basement, but it was enough for us. I had a job in a photo lab, which was quite fulfilling. Not everyone gets to look into the privacy of so many people day after day. I worked eight hours a day, and the things you learn… well, you wouldn’t believe it!!

Until one very hot day, it happened… It was 30°C outside in the shade. I got into the shower and then… a long nothing. All I remember is having a tube stuck in my genitals, which is not a very pleasant experience, and a crying girl bending over me. I woke up from a coma after 25 hours, I winked with my left eye at my girlfriend, whom I lived with for a year before and really loved and said: “Who are you?”. She started crying and told me that she is the most important person to me! Then I fell asleep. When I woke up again, I had no idea who I was, much less what had happened.

In the morning I learned that my diagnosis is carbon monoxide poisoning with subsequent short-term memory loss.

I still don’t properly remember things today… I don’t remember what I was doing 3 hours ago. How much money I’ve spent, names of people I’ll meet… In addition, I suffer from insomnia, so I usually fall asleep around five o’clock in the morning.

The neurologist at Thomayer Hospital, where I was hospitalized, recommended biofeedback when I was discharged. They say it will help improve my memory. I completed forty sessions, and the memory is still nowhere. My peripheral neurologist recommended walking in the fresh air to improve my memory (?!). I also see a psychologist once every two years. I don’t know what the point is. She gives me imaging tests, makes me coffee, and then tells me I’ve made a little progress.

Coincidentally, a year and a half after the injury, I met a friend who told me about the Rehabilitation Medicine Clinic. I now regularly attend occupational therapy and special education there. My memory hasn’t returned yet, and although I’ve certainly made a lot of progress in that time, the loss of self-confidence is still holding me back quite a bit. But on the other hand, I could have done much worse.

My original girlfriend broke up with me half a year after the accident. They say I’ve changed terribly and I’m no longer the carefree Katka I was before. In retrospect, I realize that I was completely different after the accident. But now after two years I’m finally starting to feel like the old Katka. I’m going on dates and I’m even supposed to start working part time as a phone representative at an insurance company starting next week.

My childhood ended unexpectedly on an ordinary evening in February. It was winter – the foothills were covered in ice and my younger sister and brother and I were playing on the bed in our nursery, unaware of the storm on the horizon. In the midst of the game, I hit my head on the shelf above the bed, and the shooting pain of a thousand stars pushed me into the darkness of the covers, where I spent the next ten minutes trying to squeeze the bump. As I slowly pushed my head above the covers, the world turned upside down. My younger sister and brother froze in a silent convulsion and watched their mother in horror, her eyes red from crying. “Dad had a serious car accident. He is in the hospital unconscious with extensive brain damage.” I was eight years old when the period of darkness began, which lasted for months and years, and sometimes I seem to feel the black shadows above the sky to this day.

Our mom handled the situation then. She made it through thirty interminable days as our father teetered on the brink of death in a coma. She coped with the pessimistic statements of medical specialists, who condemned Dad in advance as a hopeless case to lifelong institutional care and recommended a divorce. Outwardly, everything was in order – the children were groomed with excellent results, the house was in perfect order.

What was going on beneath the surface was something else entirely. Our family was on the verge of falling apart. Mother warned us that father would never be the same again. So, a talented, good-looking man with a great job and just the same as before. The future was uncertain. Even as a child, I knew that dead brain cells never regenerated, and Dad lost billions of them when he hit the windshield.

Dad’s first visit from the hospital after a year of being transferred from one ward to another began strangely. I didn’t notice anything strange about my dad as a child. Yes, he was different, his memory was impaired and he didn’t remember things I told him five minutes ago, but as a child you get used to everything quickly. What was strange was our mother. She treated her father with a distance that almost bordered on snobbery. When the whole family gathered on the couch to watch TV together as usual, Mom refused to join.
A few months later she informed us that she had filed for divorce, our father would never be normal again and staying with him could interfere with our healthy psychological development. I will not list the despair and uncertainty that I felt at that time and could not share with anyone. I prayed for a miracle that would turn back time and I could convince my dad not to go on a business trip.

What followed over the next four years was perhaps one of the worst divorce battles in history. The petitioner: a mentally unstable mother, the sole guardian of three children, a confused and guilt-torn woman, against her husband who in one day lost his job, his home, his wife, in addition to his healthy brain, fighting desperately for the last thing he had left – his children. Time: Czechoslovakia at the turn of the Velvet Revolution.

Over the next two years, the father I adored changed form. Through mom’s guilty eyes, the past was retold and dad became a domestic bully who seriously threatened our lives. We moved to another city, from our leafy suburban neighborhood where Mom must have felt caged.

However, our father did not give up. Despite his unreliable memory, a number of other difficulties, the need to take countless medications and a very small income, he came tirelessly in the hope of seeing us. At this time I dreaded his presence. The court allowed three visits a year, as the forensic psychologist recognized that we were afraid of our father and that he could have a negative influence on us. Dad came every two weeks.

Mom was always cold and unapproachable to him, and most of the time she refused to let him in. She made me look at my father as a crippled poor fellow who is not right in his head, and therefore we must treat him with civility. Sometimes I saw him in the neighboring town – and on that occasion I hid so that he would not notice me. When I was around fourteen years old, I started visiting my father out of pity. This situation dragged on for many years and there was no sign that it could change.
The miracle I prayed for as a child came when we least expected it. After High School, I moved to Prague for a new life and studies, and perhaps as an adult I began to realize what I always knew deep down, namely how very loving and devoted my father is.

I suddenly saw with crystal clarity that he was the most reliable and self-sacrificing person I had ever met. I remembered what it’s like to feel loved unconditionally, and what does it matter, as a person who had a very limited and defined place in society after a brain injury. I discovered a cheerful and entertaining person and began to prefer his company over my friends. I was 24 when I found again the father I had been looking for for sixteen long years, who had been hoping and waiting for us to remember that brain damage, no matter how severe

Martin was a child like any other. At the age of 12, he was very social, and every day his room at home was full of classmates who only left when their parents started looking for them. That’s why I was very surprised when at the end of the year he didn’t want to go on his school’s residential trip. He didn’t give any specific reason, the residential trip was mandatory, so I packed him up and saw him off to the bus in the morning on the day of departure. I wasn’t doing well at work that day, so I went home early and was going to call when they arrived. Before I could do so, Martin’s frightened father ran home and told me that the bus with the children had crashed. We learned that two children died at the scene of the accident, Martin was operated on and will be taken by helicopter to Motol Hospital in the evening. No one wanted to give us any further information.

We immediately went to the hospital and waited for the helicopter to arrive. When I saw his limp body, his bandaged head and his bare legs sticking out from under the blanket, I realized that things were going to be serious with Martin. They didn’t let us see him, they immediately took him to the ICU. There we waited for long hours before someone gave us a report on how Martin was doing. Finally, the doctor told us that Martin had suffered a severe brain injury, his liver and spleen were torn, and they didn’t even count the fractures. My throat tightened, my heart stopped, I stopped hearing and seeing around me. We left I don’t even know how or when. All I could think about was my son’s survival. He survived.

After two months of being unconscious, he finally woke up. Suddenly the tubes and devices were disconnected and Martin opened his eyes. He could not eat, speak or move by himself. After a six-month stay in the hospital, he could hardly sit up on his own, he could only stand on his feet when we supported him, actually lifted him up. He spoke very slurred. In such a state, Martin returned home after six months. From a healthy child, an emaciated body with eyes fixed somewhere out of this world. None of the doctors were able to predict how the condition would develop further. No one could give me advice on how to handle him, how to bathe him, how to treat him, how to help him. I stayed at home with him, and I tried to come to terms with it all. Only with time did I realize that I had a disabled child at home, and apparently permanently. I couldn’t cope with it. I would have needed someone to advise, to give me hope, to tell me where to go for help, for aids. The social worker didn’t come, and when I went to the office alone, I was overwhelmed with so many papers that I could barely understand it. Each doctor had a different prognosis, a different approach, a different idea of ​​treatment. Everyone recommended different and other tools.

The words of the doctor from the ICU, who told me: we saved the body, but we can’t help you with the soul, because we don’t know how, came true. I would need someone to guide me, one, a doctor whom I could trust and who would be willing to take on that responsibility and advise me on how to proceed. Instead, we went from one to the other, and many times we received completely contradictory advice. However, they all agreed on one thing, he must exercise. And so I pushed him several times a day. My son resisted, the body hurt, the results in sight. I cried with helplessness when he asked me when it would end. And even worse, I couldn’t answer him the way he expected.

Two months after staying at home, we went to a neurorehabilitation spa. As soon as I arrived, depression fell on me from the gloomy environment, and I could hardly persuade Martin that we had to be there to help him. Martin reacted very negatively to the stay. He became completely withdrawn and stopped communicating completely. All he kept repeating was that he wanted to go home. I had to agree with him, there, in that depressing environment where you could smell urine everywhere, it was really hard to look for hope. We breathed a sigh of relief when our stay was over and we returned home with the only result, Martin got used to diapers there. It took me over a month to get rid of them again. Outdated exercise methods completely deprived him of the desire for natural movement, which according to therapists was not recommended because he could get used to incorrect posture. Psychological care, which I felt was absolutely necessary after such a trauma that Martin went through, was something we could only dream of. And for me, the stay also had its effects.

I realized that if I wanted to help Martin, I had to take everything into my own hands, because the medical care was completely inadequate. And so I started looking for other doctors. I didn’t avoid alternative methods of treatment either. We tried everything, poor Martin went through countless hands and methods. Tired of the merry-go-round, he was no longer interested in what was happening to him. He just performed and spoke only when something was completely uncomfortable for him. Now I know how many mistakes I made that I didn’t trust my own instinct. Give him time to sort everything out in his head and only then offer him a solution. Instead of resting and slowly coming to terms with his condition, he didn’t even have time to think about it.

Martin closed in on himself, started talking to himself, lost himself. Again, I began intensively seeking psychological help. None, not even the most experienced, were willing to take him on and do the tedious and tiring job of looking for Martin lost in his pain. They advised us to go back to school. The school where the accident happened invited us to visit. The classmates and the teacher had no idea how to react to Martin, so the meeting was a fiasco. The classmates, even though they went through the same hell as Martin — or maybe for that reason — looked away, and the teacher started to test them in mathematics out of sheer embarrassment. Again, where was the psychologist who would prepare us to return to the school where Martin was last healthy and returned there in a wheelchair? Nevertheless, I insisted that Martin could go to the same school and to the class he knew with the children. It didn’t lead anywhere, Martin was not enough and “disrupted” the teaching. After a month, they tactfully suggested that Martin complete his compulsory schooling at Jedlička Institute. Another shock.
Martin had never seen so many sick children together in his life. He couldn’t fit in, he still saw himself as healthy and didn’t understand why he had to be there. This time there were also aggressive states that demonstrated his fear and hopelessness. He had to start taking psychiatric medication. Although he slowly began to calm down, he also gained a lot of weight, movement was suddenly much more difficult for him. But most importantly, he completely lost the last spark of interest in the surroundings.

Psychologist! I wanted to scream. Where is anyone to help him? Yes, there was a psychologist who advised me to have him castrated, that the aggressiveness is caused by hormonal changes. I ran away from the doctor’s office with Martin. Another one who spoke to me advised me to use a stun gun so he wouldn’t threaten me. I should have just pumped an electric shock into the psychologist. And so ended my attempts at psychological guidance. I began to rely on my own reason and feeling and look at the world through Martin’s eyes. And so we began to drift away through life together. We went out a lot among people, to concerts, to the cinema, but we preferred to be at home alone, not confronted with painful reality.

Martin finished school, and we finally found a psychologist who did the tests and told me that he was not suitable for continuoed psychological care. And so we both lived in our own world. The constant care, the total absence of the possibility of rest, let alone my personal life, I started to run out of strength. Martin grew a lot, gained weight, and I could hardly handle him. We lived in the owner’s apartment on the first floor without an elevator. An assistant helped me and Martin get upstairs, but when he left, we couldn’t get out of the apartment. By the way, at that time I had to find assistants myself. Go to the welfare center or some department at the district office where they registered people interested in civilian military service and wait until someone is interested in us. Fortunately, someone was always found, so they helped me do the most difficult work – bathing, carrying Martin up the stairs, etc. But on the weekends we were alone and so we didn’t get out at all.

I heard that we would be entitled to a barrier-free state apartment. I immediately requested it from the District Office for Prague 6, where we lived. However, the clerk told me that Prague 6 does not have barrier-free apartments, and without my permission they sent my application to the municipality of the Capital City of Prague. And we really got the apartment. In Stodůlky, on a construction site where there was no store, post office, or infrastructure. The doctors didn’t want us, there was nothing but a construction site, and I’m not even talking about transport to the city. The house was built for the disabled, so we found ourselves in a ghetto pushed to the edge of town. Without the possibility to get somewhere, to come up with other thoughts…

43 disabled people lived in the house. The death of residents has become such a common occurrence that people have already commented on it as something mundane. The average age was around fifty. Finding the strength to fight adversity and depression in a house full of pain and among apartment buildings became absolutely impossible. We both started to get lost somewhere, somewhere very deep. More psychiatric drugs, aggression again, depression again. We found ourselves on the outskirts of the city, in a strange environment, without friends, who gradually abandoned us anyway, relying only on ourselves. With the last of my strength, I forced myself to write a letter to the mayor of Prague 6 with our story and a request to change the apartment in Stodůlky back to Prague 6, where we were at home. After 4 years, we were finally heard and we got a ground floor apartment with an area of ​​44m2, but how grateful we were for it. It took a long time before we started to feel a little better. But not for long.

I started having health problems. Years of hard physical and mental effort had to show at some point. When I couldn’t get up for several days due to a blocked spine and Martin had to lie with me, I realized that it was time for someone else to start taking care of Marin physically. At that time, about 13 years after Martin’s injury, the court that dealt with Martin’s financial compensation for the injury was finally closed. Suddenly we had money. For many years we lived on the bare minimum, on the verge of poverty, and suddenly we had money. I was almost afraid to touch them. I saw Martin’s life destroyed behind them, so I preferred not to even think about them. However, I had to solve a problem with a small apartment. So that someone can live with us and help me, we would need a bigger apartment.

After about a year of searching, I found the apartment in which we live now. Meanwhile, Martin has grown up, he has improved physically, he can walk with the help of two people. He has stabilized a bit mentally, perhaps due to the fact that he has grown up. I suddenly realized that I no longer have a disabled child at home, but a man who can become independent with his needs and live a little bit on his own terms within his possibilities. The apartment is quite large, so I decided to find an organization that would run sheltered housing in our apartment. Two other men or women would move in with Martin, and assistants would come to them 24 hours a day to help them with whatever they needed. After a long search, I found Pohoda, where they took care of us. And you can’t guess what happened, the day before the opening of the sheltered housing, the board of the cooperative came to us saying that it is not that simple and that they do not agree with Pohoda doing business in their property. And if we still open sheltered housing, I am in danger of losing our apartment due to violation of the bylaws. We immediately stopped everything, Pohoda would be here only with Martin, until this misunderstanding got resolved. It didn’t get resolved. However, Martin began to come to life again, started to communicate better, try very hard to do as much as possible around him, his mood improved. And suddenly Pohoda had to stop its activities, I returned to Martin.

We are where we were. And so I ask, when will he finally be able to live alone, if he has been through such hell and still did not resent life, when will he finally be able to live at least a little and within his very limited possibilities like any other so-called healthy person?

Summary:

Martin would definitely need a psychologist to help him with his depression and talk to him about what’s bothering him in order to live at least a little bit of dignity. He would need regular rehabilitation, preferably at home, because commuting tires him. He would need an assistant who would be able to meaningfully fill his free time and find him some interests, a special teacher who would help him expand his education so that he could better integrate into the work process. At the moment, he goes to a shop 3 times a week, where they make ceramics and textiles. There is certainly more, but this seems absolutely essential to me.

My name is Jirka, I am 32 years old. Two and a half years ago, something happened to me that changed my life and turned it upside down in every way. At 29 I was healthy, doing all the sports, had a good job and was enjoying life to the fullest.

On Friday, August 16, 2010, while I was fixing the steering of the car in the mechanic’s pit, the car fell on my head. Luckily, my brother was there, and he immediately gave me first aid. Then the rollercoaster to save my life began. I don’t remember what I’m writing at all and I only know it from the stories of my family. After the difficult rescue from the mechanic’s pit, the emergency services came for me first, and after that they immediately transported me to the Hospital in Vinohrady to the trauma department. Before they loaded me, I woke up for a few seconds and then collapsed. I didn’t know anything when I woke up. Where am I, what happened, what is the date, etc.

After waking up after four days, I found that I could hardly hear and that I could not see out of my right eye. After various examinations, they discovered that I was blind and partially deaf. It was not easy to perceive anything at all, I was in a trance and began to have hallucinations. I was due for anterior cranial fossa surgery because my skull had cracked and the cerebrospinal fluid was leaking. In addition, multiple fractures of the facial skeleton complicated everything.
I ended up having four surgeries. Two head surgeries, an elbow and a facelift. For eighteen long months, I rehabilitated and followed a regimen that was by no means easy.

Over time, they didn’t know what to do with me. I needed to do something. It really wasn’t possible at home anymore. I happened to see a program about Cerebrum on TV and the very next day I called that I wanted to go there. There they finally helped me and opened my eyes. I went to cognitive training with the Neurop program and a support group for people with head injuries and I found that I was starting to belong. Mainly I started to improve. I started to speak better and my memory improved and everything went better. Now I am still completely blind in my right eye, my left eye is immobile and I can only look straight through it, I have no tears at all, no sense of smell, only partial taste, and I am deaf in my left ear.

On February 10, 2013, I went back to work. I didn’t give up and that’s only thanks to my girlfriend Renata and my family. If I didn’t have their support, it would have turned out very badly. I found out that you can live even after such severe injuries, but you must not give up and success will come.

Finally, I would like to thank my brother Mirek, who saved my life, my girlfriend Renata, who endured many bad days with me. I am grateful to her that she was a little harder on me and I had to push myself. And of course to my parents and friends. A big thank you also goes to Cerebrum. After the unfortunate moments I lived through, I realized that nothing works in this country and people like me are a nuisance to the country. I would like everyone who reads my story to think about the fact that something similar can happen to any of them. Before the accident, I wasn’t at all interested in how people with disabilities live, and I couldn’t imagine what they have to manage. But then I had my accident. I don’t like to remember some things, but maybe what I write here will help people come up with better thoughts and think about the fact that in life we ​​can lose everything in one second. But the world will simply keep turning and it only depends on each individual how they decide cope with the difficult situation.