Veronika Hublová comes from Brno. “I was born here and went to all but one school here. I went to a primary school for the mathematically gifted. Then I ended up at a business academy which I thoroughly despised,” Veronika recounts. “It was around the time of the Velvet Revolution – nobody knew how the economy would evolve so I endured four years of boredom.”

After graduation (maturita), she packed her bag and left for England, where she spent a year working as an au pair and housekeeper. “I experienced London from the perspective of an immigrant, working for families from Nigeria, Greece or Thailand. All in all, it was really taxing, but I am grateful for it. I learned a lot of life lessons, and English.”

Interest in psychology

She kept working as an au pair for a while after returning to the Czech Republic and then she got admitted to the Faculty of Humanities in Prague (the predecessor of today’s FHS at Charles University). “Our classes were in the building which used to house a burn unit where Jan Palach died. Very interesting people like Tomáš Halík were giving lectures there, broadening my horizons immensely.” She did not finish the program though. During her studies, she started to gravitate toward psychology and succeeded in her admission to psychology at the Faculty of Arts in Brno. “It was impossible to do simultaneously. Nevertheless, to psychology I added English, which I enjoyed for being notably less theoretical than psychology.”

While studying, she traveled back to London as a tour guide. She graduated in both English and psychology and was hired as a researcher at the Masaryk University Faculty of Medicine, on track to earn a doctorate. “I wanted to do clinical psychology, but when I was finishing school, no such jobs were available. So I kept on studying, shifting my focus to schizophrenia, which was at once tremendously intriguing and challenging.”

The fateful injury happened in her second year of doctoral studies. “I was studying part-time so money was in short supply, and I needed resources for my psychotherapeutic training. Looking for extra income, I juggled about five different activities, from traffic psychology assessments to proofreading. I was overworked.”

Microsleep, probably

She found a better paid job at an old people’s home in the Vysočina Region. On the third day of her employment, she had a car accident. “Microsleep, probably. I wasn’t even driving fast, barely 60 kph. I drifted off an unpaved curb into a roadside ditch. Unfortunately, there was a tree. If it hadn’t been for the tree, I would have driven the car into a ditch and nothing serious would have happened. Just sheer bad luck.” Veronika has been in a wheelchair for over ten years now.

Never to walk again

Veronika spent several months at a spinal injury unit where she continuously suffered from a decubitus ulcer. “That was really painful – they positioned me wrongly and the bedsore just would not heal,” she recalls. Afterwards, she spent over half a year at the rehabilitation institute in Košumberk-Luže. “There was a point between the spinal unit and rehab when I wasn’t sure whether I would walk again or not. It dawned on me in Luže. I saw the difference between me and the patients making progress who started slowly to pace on their own. I came to understand that I wasn’t one of them,” says Veronika.

Reliant on others

“My arms weren’t improving; my legs were completely lifeless. I did not have the physical strength to take care of myself, which was the hardest part for me. All my life, I had been active and independent, and suddenly, I had to rely on the help of others around me,” she remarks on the drastic change.

“The way I’m describing the events does not sound very positive, but the truth is the injury will unveil your true colors. And I have learned that I’m not the one to give up. I put all my energy into winning my independence back.” The progress was rather slow and rocky – Veronika suffers from a lesion in the cervical spinal cord which affects her arms too. Moreover, the right side of her body is considerably weaker. “That really complicates my situation. I’m still having trouble moving around. It took a lot of hard work, but I have been able to regain the freedom of independent movement. Today I’m able to drive a car and load the wheelchair into it by myself, which is crucial.”

I did not like psychologists

Veronika returned to work at the spinal injury unit already, focusing on proofreading and academic writing. “I knew I needed to keep my brain busy, so I simply worked from the hospital bed.” She concedes that early after the injury, she did not like psychologists. “I was not in the mood to be examining my predicament every day. At the time, it felt as if the sessions with psychologists were draining me. When you’re stabilized, you can reflect on why you had the injury and its meaning. But at the spinal unit, it’s just too early.”

Need my own place. End of discussion

After rehab, Veronika spent the following year as a resident at the Kociánka center. She was determined to become self-reliant, no matter what it took, so she waited until the city council allocated an apartment to her. A lot of people tried to talk her out of living alone. “Even my brother asked me not to go it alone. But I was adamant, knowing that if I were to keep it together and function, I had to have my way.” When she was eventually provided an apartment, her brother helped her remodel and modify it for her needs.

She took up where she left off in her doctoral studies and later added English translation studies and translating of scientific literature. The part-time doctorate nicely complemented the full-time translation studies. “I mostly did it so that I could socialize and keep my head busy again,” she explains. She finished her doctorate but dropped out of the translation study program. It proved too time-consuming to try to manage studying and translating alongside the responsibilities of a postgraduate.

Fewer people around

Just like the majority of people who have gone through a similar experience, Veronika admits the wheelchair purged her circle of so-called friends. She has nothing bad to say about her colleagues from psychotherapeutic training and the Brno University Hospital psychiatric clinic. Her memories of fellow students are not so fond: “A lot of them stopped seeing me and wouldn’t want to meet up. That was mind-boggling to me. Those were the people who were supposed to be helping others, yet they must have had unresolved personal issues of their own.”

People’s behavior varied. “Sometimes people’s approach was excellent. At other times, I was taken aback by folks telling that the best thing for me to do would be to commit suicide. Someone even offered me a pistol. That sounded insane to me and solidified my resolve not to give up. Those kinds of thoughts and ideas are beyond me.”

Normal life

Veronika says she is the most satisfied she has been since the injury. Working as an analyst for an IT firm – the first job in the private sector, as she says –, she makes use of her language skills. She has a boyfriend and leads a happy life. “It took some time after the accident to realize that the injury set me in a certain direction. I wasn’t happy and didn’t know what to do with myself. I did many things somewhat patchily and none of them wholeheartedly. The injury put me on the right path. Other than that, I don’t think I’ve changed as a person too much. I was the way I am before the injury. It just gave me a certain perspective and a refined attitude toward things.”

Lukáš was born in Ústí nad Orlicí. “I’m glad I grew up at a time when the Internet was in its infancy. I used to spend all day outside with my friends and not come home until it was getting dark,” he says, reminiscing about his childhood in Letohrad. At elementary school, his main interest was sports – he played floorball and ball hockey, and he joined the Scouts and Sokol (‘Falcon’, a long-standing Czech gymnastics association). “At Sokol, a trainer singled me out and said I was talented, they were short of players, and asked if I wanted to try floorball.” Then a friend once brought Lukáš along to a ball hockey practice and it got him so excited that he ended up playing two seasons for the youth team (U12/U13).

A childhood of constant injuries

Growing up, Lukáš was often putting his health at risk, suffering various injuries. “I broke my collarbone twice – first in kindergarten, second when I flipped over an electric fence on my bicycle. I had a concussion when a friend tripped me up at the after-school childcare center and I bumped my head on a stone. I also severed a tendon in my right thumb once,” he adds with a mischievous grin. “I wasn’t the most well-behaved kid – then again, nobody was – but I was never a serious troublemaker.”

The fateful year 2007

After elementary, Lukáš began an apprenticeship as a locksmith at the secondary vocational school (SOU) in Letohrad, where he would travel daily from Žamberk. The year was 2007 and some big changes were in store. Lukáš’s mother found a new boyfriend from Brno and after Lukáš finished his first school year, they moved in together. In the summer, Lukáš left to spend the holidays by the Seč Dam (Sečská přehrada) with his sisters, his father and his father’s new wife. “The first couple of days, the weather was awful, nonstop rain. We couldn’t go anywhere and were stuck inside.” As soon as the weather cleared, they went to the shore. Lukáš immediately took off his T-shirt, ran and jumped in the water. “It happened to be my first jump and also my last. My head hit the bottom, a chill ran down my spine and it was over,” he continues. The impact broke his fifth cervical vertebra and left him floating motionlessly. His sisters who were in the water with him in that fateful moment thought he was just joking and diving. After about two endless minutes, his whole life flashing before his eyes, his dad pulled him ashore. “I almost drowned so I don’t remember much,“ he adds. An ambulance was called and a helicopter transported Lukáš to the operating room at the hospital in Pardubice. About three weeks later, he was transferred to the spinal injuries unit in Brno where the doctors explained the gravity of his injury to him. “They were completely frank with me about the serious permanent impairment and it dawned on me that it wasn’t just a broken limb.”

I had to relearn everything from scratch

Another two months had passed before Lukáš was transferred to the rehabilitation center in Košumberk. “In rehab, I started to realize what condition I was in thanks to other patients with similar stories. I began relearning everything from scratch. Not just things like personal hygiene, excretion, and wheelchair use, but also the different needs and stimuli pertaining to my body that had been fundamentally changed by the injury. The hardest part was to learn to ask for help and reconcile myself to the fact that I would need somebody to be following me around all of the time. After rehab, I spent some time at home,” he adds. With his family at his side, they reflected on what to do next.

Before the injury, I would not dream of graduating from a business academy

It was quite clear Lukáš would not come back to his former field of study. Eventually, he started to study at the F. D. Roosevelt Secondary School’s (a school for pupils with special needs and disabilities) business academy on Kociánka, where daily personal care and rehabilitation were also taken care of. “At first, I just wanted to get out of there, keeping to myself and seeking solitude. I didn’t keep it up for long, though. I saw a lot of clients who were much worse off than I was, and that motivated me to not give up. Soon enough, I found a great circle of friends and began to enjoy my time at Kociánka. I consider finishing the business academy my big personal success. Before the injury, I would not dream of studying a school like that.”

One practice got me hooked

At school, Lukáš met a trainer who suggested that he try Boccia (a Paralympic sport for athletes with severe disabilities, similar to pétanque). “I like sport in general. Not being able to play floorball or ball hockey anymore, I decided to try throwing balls.” One practice got Lukáš so hooked that he soon started competing. “I have been playing Boccia for 11 years, on and off, but I haven’t had a lot of success. I get awfully nervous and don’t showcase my skills as well as I can at a practice.”

Learning to be self-reliant is a lifelong project

“At the moment, I’m trying to work really hard on my skills. I’ve always been a bit of a loafer, but once I take something on, I’m all in. I found out about ParaCENTER Fenix from my mom. I regularly come to do rehabilitation work and learn how to be as self-reliant as possible. I reached a major milestone by moving out: I became independent and I live alone now,” Lukáš remarks. He works from home doing administrative work for a company supplying equipment to schools. “My role is to search the Internet for public contracts awarded by schools. If I come across such an opportunity, I download the documentation and forward it to my boss. He prepares a quote and sends it to the school. I used to do similar work before, searching for public contracts for accounting audits.”

“Looking back, I have to say my priorities have completely shifted since I had my accident. Health and self-reliance are at the top of my list now, along with surrounding myself with good company and accepting my condition. I must not stop learning to ask for help. And I must keep it together and not lose my shit.”

For Jaroslav, the last holiday day of 2001 was a turning point. “Long before that, my friends and I had agreed to go to a disco that day. We worked in the concrete shop all the holidays to save money. We wanted to enjoy a great day,” says Jaroslav. It was arranged that his then-girlfriend’s mother would take the whole group of friends to the disco. “But at the last minute, she said she couldn’t. It was just the day of the disco. My then-girlfriend got a replacement ride. The driver was arrogant. We knew about him, and we didn’t like him,” recalls Jaroslav. But they were looking forward to the disco all their holidays; they didn’t want the plan to fail. And so, they nodded to the replacement solution.

Watch out; there is a sharp turn

“We left Nová Ves at eight o’clock and crashed at eight-fifteen, about four kilometers from the village. I was looking out the window at the time. I didn’t pay any attention to what was going on in the car. Suddenly, in the corner, a friend next to me yelled: “watch out, there is a sharp turn!” That’s when I started paying attention, but it was too late. I didn’t have time to lean in any way,” explains Jaroslav. The car Škoda 120 drove at high speed, and the car blew up. “A right-hand turn followed, so the driver turned the wheels to the right in the air. When we hit the road, it blew us up in the right ditch where we broke the apple tree. It threw us into the left ditch, where we broke another tree and rolled for the next seventy meters,” says Jaroslav. The old Škoda was missing seat belts; the passengers were not fastened.

Shock, no pain

“When a car turns around, you feel like a rag in a washing machine. My friends got caught. I broke my head during the first turn by the driver’s seat belt. There was this plastic cap missing, and the screw made a hole in my skull. Moments later, I flew out through an open window and smashed my back against the roof,” he says. He landed next to the damaged car, which, fortunately, had just stopped rolling. The list of his injuries of the car accident is long. In addition to the fractured skull, he had broken four ribs and two vertebrae, a ruptured spleen, a torn eyelid, and part of his ear. “At first, I didn’t feel any pain. I sat down; my friends came to me. My girlfriend told me my face was torn and my blood was running so bad. I reached for the wound and found myself sticking two fingers in the hole in my head. That was a big shock. I experienced another one when I wanted to stand up, and I couldn’t,” says Jaroslav. My friends called an ambulance; she arrived in about half an hour. A helicopter couldn’t land at the scene of the accident. “Nothing still hurts me yet. There are various shiny moldings in the ambulance, and I tried to catch a glimpse of my face in some of them. But I didn’t see anything.”

I don’t think the young man can survive

“When we arrived in Brno, the original shock began to subside, and I felt a terrible pain in my back. When they pulled me out of the ambulance and two doctors came to see me. They saw a hole in my head, a lot of blood everywhere. One of them said, “I don’t think the young man can survive.” That was another shock,” he recalls. Because of his concussion, doctors couldn’t give Jaroslav anesthesia. So, when they sutured his ear and eyelid, he felt everything. As soon as the shock subsided, two surgeries followed. In one, doctors fixed the fractured vertebrae with two iron plates.
In the second, they performed surgery from the left side between the ribs, so that they did not have to operate the spine through the chest. “My left lung must have collapsed. I woke up after surgery in the intensive care unit on 11. September, the day the terrorists dropped the Twin Towers. My head was wrapped in a bandage, two tubes sticking out of me, scars everywhere,” he recounts feelings after the anesthesia. A significant moment for Jaroslav that day was a visit to the family. “I’ve seen my dad cry, which I’ve never seen before. Next to him, mom and sister, both looked close to tears. That’s when I decided to start working on myself. If I’m as self-sufficient as possible, it will help them.” At the time, he believed that everything would be good again because, according to doctors, the spinal cord was not broken. In the end, it turned out that Jaroslav had severe spinal cord oppression, and as a result, both lower limbs were paralyzed.

It just happened

He made another crucial decision at the rehabilitation institute. “I’ve been fighting with myself a little bit, which is to blame for it? No one. Then I saw this guy, a biker. He drove into a bend where the road was being repaired. There was a warning before and after the turn, but he ignored it, and at high speed, his bike slipped on the gravel. He blamed everyone around him, didn’t admit it was his fault. I figured I wouldn’t even hang out with people like that. I didn’t blame myself or others. It just happened.”

Jaroslav today

After finishing his stay in a rehabilitation institution, Jaroslav had to change the school. Until then, he was studying as a mechanic. Once it became clear that he was going to be in a wheelchair, he couldn’t continue his profession. He chose another high school. “Then I met people from Fenix. First part-time, then full-time.” He works as a logistician, draws up schedules of exercises and rides, works as a fitness instructor, and a self-sufficiency instructor. He passes on experience to other people with the same fate and tries to get them to rely as much as possible on themselves. “Self-pity achieves nothing, everyone has to look forward, try and work,” he says. In Fenix, he met his current wife, Kristýna, a leading physiotherapist. He says he wouldn’t change anything about his life.

Before his injury, then 23-year-old Ladislave Loebe worked as a bouncer at a nightclub. “You could say I walked on the wild side. I spent a lot of time doing sport and I liked to drive fast,” he explains. It was his passion for putting the pedal to the metal that turned Ladislav’s life upside down. In 1999, he was in a car crash which put him in a wheelchair. “I was driving alone with no seat belt and that is why it went down the way it did,” he sums up concisely.

I could muse and contemplate what was next

Next came the shock and the convalescence – six months at the Trauma Hospital of Brno and another three months at a rehabilitation center in Luže. After rehabilitation, Ladislav, now diagnosed with quadriplegia, was to return to the reality of everyday life. „It took me about a year to pull myself together mentally, and five more years to do so physically,“ says Ladislav, describing his condition. He lived with his parents in Znojmo and underwent physical therapy on a daily basis. As soon as he started getting used to the wheelchair, he took to riding around a nearby housing development vigorously. „They say walking is tremendous for your health,“ Ladislav explains, „so for quadriplegics, it’s riding one’s wheelchair. It made me fitter and gave me an opportunity to meditate on my future.“ He made the decision to study at the business academy in Žatec where he graduated and earned his baccalaureate (maturita) degree in 2009. “Although it was far-off, it was the only secondary school that was offering distance learning,” he remarks.

Around that time, Ladislav found out about ParaCENTER Fenix where he would come to exercise and have fun at various social events. “I see Fenix’s greatest contribution in helping me get admitted to a university. Dr Vašíčková put me in touch with Karel Sobol who works at the Teiresias Centre (the Support Centre for Students with Special Needs at Masaryk University). Karel got me into a preparatory course for the entrance examination and assisted me with my admission to the Masaryk University Faculty of Law,” says Ladislav when reminiscing about partnering up with ParaCENTER Fenix.

Fenix helped me get into university

Gradually, Ladislav began the process of leaving the nest in Znojmo, until he permanently relocated to Brno, where his providence helped him get an apartment. “I petitioned the city council for an apartment in my first year of study while staying at a dormitory. They eventually allocated one for me in my third year,” he adds. During his studies, he began partaking in ParaCENTER Fenix’ activities more frequently – first as a client, then as a law student. Our mutual collaboration flourished, so much so that Ladislav became the chairman of ParaCENTER Fenix and our lawyer.

Even though Ladislav’s life took a major detour pulling through the injury and the disability, one thing has not changed at all – his love for sport. He likes to ride an off-road handcycle and exercise on a custom-modified rowing machine at ParaCENTER Fenix’ barrier-free gym. “Movement still comes first for me, that is what I live for,” Ladislav concludes.

Blanka had worked as a civil engineer for over twenty years, devoting her time to the development of her husband’s business. “I’ve got to say this part of my life was quite hectic,” she admits. The two spouses liked to spend their free time on bicycles, exploring new corners of the Czech Republic.

I kept saying to myself that I must not fall on my head

A biking trip to Orlické (Eagle) Mountains in 2007 left a permanent mark on Blanka’s life and memory. While riding downhill, a brake cable snapped and she flipped over the handlebars. She can hardly recall the moment she fell and injured her spinal cord, and she has no recollection of what preceded the accident. “The only thing I can remember is that I was saying to myself that I must not fall on my head because I was wearing no helmet,” she remarks.

Immediately after the injury, rescuers transported Blanka to the University Hospital in Hradec Králové, from which she was moved to the spinal injuries unit of the Trauma Hospital of Brno. After about fourteen days, the doctors decided to transfer Blanka to a rehabilitation center in Hrabyně. “I spent seven months there, undergoing a standard rehabilitation program – physiotherapy, MOTOmed®, occupational therapy, and so on,” says Blanka, describing the initial phase of her convalescence.

Our doors were all too narrow for a wheelchair to pass through

During her stay at the rehabilitation center, it quickly became clear that before Blanka’s return to her apartment in Brno, there were some necessary barrier-free modifications that the couple needed to arrange. “We lived in a three-room apartment in a panel building, but the living quarters were so small that they required changes. Predictably, the doors were too narrow for a wheelchair to pass through, the bathroom was unsuitable, and there were other obstacles as well,” she explains. Blanka’s health insurance helped cover the costs. “With the money from the insurance company, we decided to move to an apartment that would fully accommodate a person with a disability,” she adds. Two years after Blanka’s accident, they were able to acquire a barrier-free home.

Fenix helped me better communicate with people who went through the same ordeal

In the months after her injury, the thought of going back to work did not enter Blanka’s head at all. Civil engineering, which had been her lifelong occupation, was not known to be particularly accommodating towards wheelchair users. After rehabilitation, she mainly focused on improving her physical condition. Describing her life after rehab, she says, “At first, I was searching for opportunities to exercise, which there are few in Brno – but I found ParaCENTER Fenix and swimming.” At ParaCENTER Fenix, Blanka started attending regular rehabilitative therapy as well as gaining new insight from people who suffered the same fate. “Fenix really helped me better communicate with people who went through the same ordeal as I did. I found the sharing of experiences useful too. The people who have been wheelchair-bound for long can give you good advice on various challenges – and everyone can draw lessons from that and devise their own way of coping with the disability,” she remarks.

For some time, Blanka would return to ParaCENTER Fenix, until she was eventually offered a job with the organization. “At first they asked if I would help with administrative work. I thought it was high time that I went back to work, because staying home can get kind of dull and it is just better out there among other people,” she explains. Blanka’s involvement with Fenix deepened and she is now an active board member responsible for personnel management, among other things. She also puts her civil engineering knowledge to work by advising Fenix’s clients with barrier-free modifications. “In the future, I would like to focus on consultancy regarding barrier-free travel. I have had a handcycle for a while and my husband and I travel a lot, mapping and figuring out what is reachable to wheelchair users. So I can advise on possible trip destinations,” she concludes. Besides work and traveling, Blanka dedicates a lot of her energy to her family, most of all to her grandchildren.

Adéla hails from Český Těšín, though as a child, she also lived in Karlovy Vary, Ostrov nad Ohří or Kroměříž. “My parents got divorced when I was two years old. My mom and I moved around a lot. She found someone and got pregnant with my younger brother, but the relationship didn’t last. Dad had been visiting us all throughout, and eventually, my mom and dad got back together. They have stayed together ever since,” Adéla notes.

A few short meters in half an hour

Adéla transferred from one elementary school to another three times. She went to secondary school in Ostrava, staying at a dormitory. Between her third and fourth years of study, she became paralyzed. “I caught a nasty flu while doing a language course in Germany. I was feeling really terrible, but the course was already paid and I didn’t want to quit,” she says. Back at home, she was told by a doctor that the tingling sensation in her legs was nothing out of the ordinary and it would pass. Subsequently, while on vacation with her parents, she started having serious difficulty walking, kept stumbling and experienced numbness and loss of sensation in her legs. “I spent three weeks in hospital. The doctors released me because they had no idea what to do with me. I remember it took me half an hour just to walk to my car.”

Her condition was progressively deteriorating until in September she was no longer able to stand up. Nevertheless, she was determined to return to school. “Home felt uneasy. I didn’t know what the future would bring, but I didn’t want to think about it. I was adamant that I had to pass the ‘maturita’ (baccalaureate/certificate of secondary education) exam at all costs – I knew I would be hopeless without a qualification, no matter what was in store for me.”

Still without a diagnosis today

The year was 2008. Still without a diagnosis to this day, Adéla has yet to learn what exactly is wrong with her. She remarks, “When something like that happens, you have two options: either you break down and give up on life completely, or you tell yourself, ‘My legs may have stopped working, but the rest is fine.’ And you act accordingly. I tried to be constructive about it. I was sure I had to go to university in order to have a good chance of finding a sedentary job.” She enrolled in special needs pedagogy in Brno. “That’s where I met my current husband. I got my bachelor’s degree and in the first year of postgraduate studies, I found out I was pregnant. Consequently, I dropped out of the master’s program,” says Adéla, smiling.

Cesarean section

“My doctor is really great. He was never bothered by my being a wheelchair user, all he cared about was the health of me and my baby. Due to complications in the 28th week, my pregnancy was classified as high-risk. The routine checks were more frequent but other than that, everything went fine,” she reminisces. According to plan, her son Honzík (Johnny) was born by cesarean section. “I have suffered from severe short-sightedness since birth, so vaginal delivery was not recommended to me. They said they could not guarantee I would not lose my vision. That made me a little sad, as I was wishing for a natural childbirth.”

The first few weeks were tough

It turned out that Adéla had a damaged placenta. “I was told that the complications I suffered from could be linked to my making every move with my hands and abdomen. Putting a bigger strain on the abdomen is a major contributing factor.” Despite the complications and the low birth weight, her son was born perfectly healthy.

For the three weeks following the return home from the maternity ward, the Bouma family were joined by Adéla’s mother. “My son Honza was so tiny I had no idea how to turn him around. I was occupied with things that no healthy mother has to deal with: how do I hold the baby and carry it when I also need my hands to move around? The documentary Moji milovaní (My Loved Ones), starring Simona Kolaříková (who is also a client of ParaCENTER Fenix), helped: in order to move around, Simona was using a so-called nursing/breast feeding pillow. I bought one myself and strapped it to my body so that Honzík could not fall out. Another conundrum was bathing: our bathroom has a shower tray and most baby bathtubs are low. By chance, I came upon the Blooming Bath, a flower-shaped bathtub cushion. It was a great discovery which solved the problem instantly. Until Honzík was big enough for the shower, we bathed him in the flower,” says Adéla with a laugh.

Baby carriage, scarves. And another baby

“My dad is very skillful, and he fitted my baby carriage with these handles, so I could strap it to my wheelchair. However, Honzík just hated the baby carriage – that’s how I got into babywearing. I ended up buying about five baby carrier scarves.” When her son grew up a bit, she was looking to get back to work and even found a job, but another pregnancy intervened. “After Honzík, I had a miscarriage, after which the doctors told me that I would most probably not become pregnant again. Then, lo and behold, a girl was conceived,” Adéla remarks laughingly. The Bouma family grew to include a baby daughter named Viktorie.

Mom and traveler

Nowadays, Adéla’s life entails juggling her kids, husband and work at ParaCENTER Fenix where she is a consultant on re-entry to the labor market. While this leaves precious little time for her hobbies, she does make time for traveling, her favorite. “We have always loved travels and we’ve stuck with it. Even though having two kids makes everything much harder, the memories and experiences make it all worthwhile,” she notes. In the foreseeable future, they are even planning on visiting Florida.

Future plans

If you ask Adéla where she sees herself in a few years’ time, she jokingly replies that her main ambition is to raise two well-brought-up kids. Kids are also at the forefront of her intention to start her own association. “While I was expecting my son, it came as a surprise to me that there were very few resources available to parents with disabilities that would provide useful tips and advice. The nearest organization representing such parents is located in Great Britain. My dream is to build a platform for parents with disabilities to meet and exchange information. I would like to include them all: parents with physical, visual, and hearing impairments, and reduced mobility. This is an area in which it makes sense to provide counseling to all of them,” Adéla concludes.

Radek’s life did a 180 degree turn in 1994 when an Italian driver ran him over in a street in Prague. He says, “I have no recollection of the accident and the moments before – that’s in the dark. All I know is he was speeding. I woke up in a hospital bed two months later, bandages everywhere, my torso in a clamshell brace, my head in a halo brace. My movement was completely restricted, and I realized I could not move even if it wasn’t.” Radek was eight. Bedridden and paralyzed at the department of anesthesiology and resuscitation, he regarded his predicament as a challenge. “My understanding was I had to persevere through hardship to be able to move on. They instilled that kind of attitude in me.” For the little boy and his family, the conditions were drastic. “I have a fracture between the C1 and C2 vertebrae. There are very few who survive this injury. Frankly, the prognosis was for my demise. My mom later told me they had made her sign a consent form for the donation of my organs. When I began moving my left hand six months later, she was told it was the final spasm and that I was dying.” At first, Radek could not even breathe on his own and had to restore the function which is unconscious and effortless for most people most of the time. To this day, he sleeps with a ventilator. The capacity of his lungs is 2.5 liters, very low for an adult male.

Competitive by nature

Radek had to celebrate his ninth birthday in the hospital. After his release from the department of anesthesiology and resuscitation, he spent another year at the spinal injury unit in Košumberk. Afterwards, he went back to school and resumed regular attendance. “I always enjoyed studying so my grades were fine. What I found a little demotivating was observing how other kids could run around, do sports, and do anything at all without difficulty.” Competitive by nature, Radek took to playing chess, and he started beating schoolmates his age and older. “The game gave me some of my lost self-confidence back. It felt great to be good at something and live up to my peers.”

Every cloud has a silver lining

His parents’ marriage fell apart. While his mother spent all her waking hours taking care of Radek, his father began seeking out the company of other women. After the divorce, he and his mother moved to Kladno, where he finished elementary school. He underwent countless surgeries while growing up. His hips and knees had to be operated on. “My legs were growing crooked. To be able to walk, they frequently had to cut me open and straighten my limbs.” But every cloud has a silver lining, and that applies to Radek as well. As part of post-operative rehab, he returned to Košumberk in 2001 and discovered the world of parasports. He took on boccia – and just like before with chess, Radek the rookie started beating friends who had been playing the sport much longer. He enrolled in his first tournament and finished fifth, losing the quarterfinal to the then national champion. “Finally, I could be good at something. It motivated me to keep pressing forward,” says Radek. In two years, he became the Czech national champion and began representing the country in the international arena. Radek’s greatest individual victory has been first place at the 2009 European Championship. He also finished fourth at the 2006 world championship and sixth at the 2012 London Paralympics. He brought home silver and bronze medals from Paralympic pairs events.

My wife is my anchor

Thanks to boccia, Radek met his current wife Veronika who used to be a national boccia referee. They met in 2008, shortly before Radek left for his first Paralympics. Next, Radek took up studying economics. “On top of that, I had a day job. It all added up and affected my health, so in 2014, I ended up in the hospital in a medically induced coma. Once again, the doctors were saying I was dying. I was fortunate to come across a pulmonologist who recommended a device, thanks to which, coupled with exercise, I lost 25 kilos and got relatively fit,” Radek remarks. His wife Veronika always supported him along the way. Around the time, she delivered their firstborn son Tomáš. “I’ve always tried to work hard and make progress but they are the real motor propelling me forward.”

Restarting the body, recharging the battery

Although Radek’s sports career had to end due to his health issues a couple of years ago, nowadays he’s getting back into it. He coaches boccia players and he would like to compete internationally again. His condition will always be complicated, necessitating prolonged stays at one of the rehabilitative institutes from time to time, where Radek can restart the body and recharge his batteries, as he likes to put it. The interview for this story was conducted over the phone during his stay at the center in Kladruby. He doesn’t complain. He knows it’s essential if he wants to continue doing what he loves. Recently, his motivation to succeed and be there for his family got a major boost when his second son Lukáš was born.

The life of Marta Pantůčková was first turned upside down at the age of 21, when the mother of then three-year-old Jakub was diagnosed with lymph node cancer. She says, “It started in the neck. After the node removal, I got my histology report. The doctor told me it was an inflammation and sent me to ‘Žluťák’ (Masaryk Memorial Cancer Institute on Žlutý kopec, or Yellow Hill, in Brno). Of course, my immediate reaction was that people don’t get sent to Žluťák with inflammations.“ That was in 1989, shortly before the Velvet Revolution, and those were different times when such diagnosis would not be shared with the patient bluntly and openly. Public awareness was virtually nonexistent. „At home, I opened the envelope and translated my diagnosis using a dictionary of foreign terms: a malignant lymph node tumour. I was scheduled to be hospitalized the following week, and I really thought I would not be coming home. When I was saying goodbye to my son, I told my husband in the doorway that he had to find Jakub a good mom.“

Against all the odds, a chance at recuperation

At the hospital, Marta met a doctor who saved her life. “He was young, fresh out of school, full of energy and optimism. I was bent on refusing treatment until I got to know what my condition, procedures and prognosis were. This doctor patiently answered all of my questions and I began fighting – my son was my greatest motivation,” Marta recalls. She began undergoing powerful chemotherapy, complemented by radiation therapy. She did not lose faith despite having stage III cancer. The scale for measuring the severity of oncological diseases only comprises four stages.

In the early phases of treatment, Marta had to deal with another calamity. After hospitalization at Žlutý kopec, she found out she was two months pregnant. “I was really wishing for baby girl. Unfortunately, my treatment could not wait any longer. I had no choice. For years and years, I could not talk about it.”

Art as therapy

Right from the first hospitalization, Marta, who had always been artistically inclined, immersed herself in drawing and painting. „It helped me cope immensely. At first, I had no ambition to showcase my art, but soon I was painting for my friends and acquaintances. Then it occurred to me to offer my paintings for sale at the Zelný trh Christmas market.“ During one of the afternoons she spent selling her pictures there, her stall was chanced upon by her doctor. „I was standing there in the freezing cold at a time when I was supposed to be resting and avoid catching a cold at all costs. Suddenly, I felt someone’s gaze on me and looked in that direction. And there he was in a huddle, my doctor shaking his head in disbelief,“ Marta remarks with a laugh.

No time to rest

After about a year, Marta finished her oncological treatment and was getting back to normal rapidly. She started her own real estate agency, her full-time occupation for the next 17 years. “It was a high-stress period of my life, full of making appointments, contracts and mortgages. But I enjoyed it a lot because I am the type of person energized and driven by crunch time.” It might have been the stress of a hectic lifestyle that were behind the next major turning point. In 2003, she began having trouble walking.

From crutches to wheelchair

Once again, she had to get on the carousel of medical examinations. “For long, they could not figure out what was wrong with me. It kept getting worse, so I started doing rehabilitation exercises. My neurologist opined that exercising would not help because the problem was neurological, not muscular. But exercise did help, so I ignored him. I regularly used to spend a quarter of a year at the rehabilitation center in Kladruby and always made notable progress,” recalls Marta. Although exercising made her feel better, her walking ability continued to decline. “My condition deteriorated little by little but abruptly too. At first, I had some trouble walking and next, I could not do without crutches. That was in 2012. When it became clear that there was no other choice but to use a wheelchair, I paid from my own pocket for a pair of extremely expensive carbon-fiber shoe orthoses, clinging to the hope that I could somehow retain the ability to walk. I was fighting tooth and nail against the inevitable.” Eventually, Marta had to throw in the towel.

Life in the fast lane

Marta admits that for a while, she felt embarrassed by the wheelchair. Refusing to socialize, she preferred to stay home. Gradually, she was encouraged by her friends to come out of her shell. Like many others suffering the same fate, she was also deserted by a number of fair-weather friends. “The wheelchair caused quite a purge. All in all, I am glad – the true friends stayed,” she says with a smile.

“Reminiscing about it all, I realize that I always lived really fast. I gave birth to my son at age 18 and started work soon after. The lymph node cancer at such a young age should have been enough of a warning sign to calm down. But I didn’t pay attention. I kept rushing and pushing forward. So I had to get another hard wake-up call to finally take the hint.” Today, she accepts her illness, as well as the paralysis of her lower limbs associated with it, as a gift. Marta’s spinal lesion is actually an effect of the radiation she underwent in her youth. “A few people asked me why I had not sued my doctors for leaving me crippled. I replied, ’How could I? Their treatment saved my life.’” She knows that if it had not been for the doctors, she would not have raised her son Jakub and could not see her grandchildren grow up. She continues, “I never asked, ‘Why me?’ I tried to figure out what happened to me and why, and what kind of signal life was sending to me. It was a price for making it out alive. That’s what a doctor once told me, and that’s how I take it.”

In fact, Marta suffers from one more ailment which resulted from the drastic oncological treatment: a rare nutrient malabsorption syndrome. Again, she learnt to cope. “The doctors actually saved me twice. First at Žluťák, then at the Bohunice hospital when they figured out what had been behind my gastrointestinal problems. Before my operation, I weighed 44 kilos (97 lbs) and could only suck on hard candy. Nowadays, I am on a very restrictive diet and have to stay away from a lot of foods. Nonetheless, it is a huge improvement, compared to what I went through before. I am grateful to them.”

Glass always half full

Marta is an optimist by nature, trying to live her life to the fullest. She competed in curling while she was still able to walk. In a wheelchair, she has explored all kinds of options – she took up photography, archery and athletics. She rides horses and regularly models at fashion shows. She has been making tinned jewelry since 2009. She has recently joined the team of the HandMedia project, aiming to map barrier-free public spaces and promote them among wheelchair users. “My long-term mission is to further the integration of wheelchair users. My dearest wish is for the walking population to treat us as equals. We want to live the same lives; in spite of the limitations we face.”

Her wheelchair is a part of her now, Marta says. Barrier-free accessibility is increasingly discussed and the conditions for people with disabilities or reduced mobility are improving, so it’s not a great obstacle anymore. She concludes, “A stair is not a barrier. Barriers are primarily in our heads.”

Marek grew up with his parents and younger brother in the village of Tvrdonice. He likes to remember his childhood, saying he was practically always outside. After primary school, he trained as a mason, then he joined the army in Řečkovice, Brno, for a year. He came home just before Christmas. He spent it with his family at home, then went to visit their grandmother in Krkonoše. “We always drive on the 26th. On the 28th, my brother and I went skiing that morning. In the afternoon we went skiing at Černý Dúl. At that time, there was only one ski lift in the area, no big resort as now,” Marek recalls. He adds that there wasn’t much snow, the piste was icy, they went down the hill ten times and made their way back.

“We wanted to do downhill skiing very quickly straight to the car. I stopped halfway through, and suddenly I realized that it is not possible to do downhill skiing. And when my brother got to me, I let it go again. And then, at one point, I was skiing at high speed.” In the gloom, he did not notice the track from the tractor and drove right into it at high speed. “I lost my poles, my skis, I don’t know for sure, but I guess I had to fly through the air. I ended up about fifteen meters from the slope among the trees.”

My brother thought it was a joke

“Nothing hurt me at all, but I couldn’t move. And when I hit my feet at that moment, I couldn’t feel it anymore.” After a while, a brother arrived, not believing that something serious had happened to him. “First, I begged him, then I scolded him, he kept thinking I was kidding. When I started calling out for help, he realized I wasn’t kidding.”

For about an hour and a half, Marek waited for the mountain service’s help, which in the meantime, intervened elsewhere. The locals brought Mark warmer clothes and gloves, it got dark, and the temperature dropped quickly. “When the paramedics arrived and loaded me, I felt pain in my back for the first time. My dad told me that when they dragged me on the sleigh, my legs hung immobile on the sides, and I dug up the snow with them.”

Probably a wholly broken spinal cord

Mark was taken to Černý Dúl, where he waited for an ambulance for the next half hour. “Then, the old ambulance was finally there; that ambulance gave the impression of being the same ambulance from the Czech movie Básnící (The Poems). I told them I was still wearing ski boots, so I wanted to take them off. They said I had them down there a long time ago,” Marek recalls. Paramedics couldn’t get Mark to the ambulance because of his height. Only with an injection and bent legs, he was first transported to a hospital in Vrchlabí. From this part, Marek does not remember anything at all. He had already passed the examination at the Liberec hospital, where he was transported that evening from Vrchlabí. He underwent surgery at 11:00 p.m.

Two days after the surgery, while in the intensive care unit, Marek pretended to sleep and listened to the doctors’ conversation while having a ward round. “They talked about the fact that I had a completely broken spinal cord from what they saw, at ninety-five percent. It was all my fault, so some accusations or anger; it all went beyond me,” Marek adds, saying that he never blamed himself. It just happened.

I signed out against medical advice and went home

Four months later, followed in a hospital in Brno, he underwent one more spinal surgery, and in May, he was transferred to a rehabilitation institute in Hrabyňe. “That was horrible. While they were letting me home from the hospital on weekends and normally working in a wheelchair, here, in Hrabyně, they threatened to leave me after spinal surgery, gave me a stabilization brace, and didn’t let me go anywhere. I don’t have good memories of it. After five months, I signed out against medical advice and went home.”

Hard school

“There were a few people behind me in the hospital who asked what I was going to do next and if I would be able to try the sport,” says Marek. He tried athletics; from time to time, he concentrated on the Championships of the Republic in swimming, from where he returned with medals. He was most attracted to basketball, even though it wasn’t that easy with the coach at first. “I’ve suffered half a year. Even though our team won with a big lead, sometimes they didn’t even put me up for the last five minutes of the game. There were much better players, but I had no way to get close to them.” Besides, he began to suffer from decubitus for more than half a year. He spent several weeks in the hospital, where his ischial bones were slashed, which should prevent the decubitus problem. “And when I got home, I got a call from the basketball school saying they had the money to get a tailored wheelchair. Subsequently, I also bought a better civilian wheelchair and a seat.” Then things suddenly turned in a better direction. About six months later, he and his team went to a Paris tournament, where a foreign coach looked up and asked if he would be interested in a contract in Germany. “I didn’t hesitate for a minute. At first, I went there to show up, and we signed a contract straight away. I stayed there for two years and got an adamant basketball school with everything.”

Two years of vacation

After two years, he fought with the coach, and it looked like he was coming home. Instead, he met a friend who lured him to an engagement in Sardinia. Marek says he didn’t hesitate for a moment. “It was actually like two years of vacation. There were many foreigners on that team, I was a little bit extra, but they kept me there, I trained with them, and I used to go as a substitute for matches.” He and a friend lived near the sea when it was beautiful, they said they could see the whole of Africa. After two years, the club got into trouble. “A year after I left, it ended up there completely. It looked bad when I left,” Marek recalls.

Huge pain

In addition to his sporting experience, he brought one significant social evil from Italy. “I started to drink alcohol there. I bought a bottle now and then after the match and drank it in the evening. Until I became a regular alcoholic for the next six years.” Although it seems he had a comfortable lifestyle, he was suffering from a huge pain. As every human in a wheelchair suffering from spinal lesions between the vertebrae Th12 and L1, Marek was suffering from phantom pains.

“Sometimes, the pain was unbelievably aching, and so I drank; it helped me. On the one hand, my legs didn’t hurt, but on the other hand, alcohol was killing me.” It helped him when doctors managed to find suitable drugs to relieve his pain. “From the moment I started taking them, I did not need to drink. My legs didn’t hurt; I didn’t need a glass anymore. The drugs help because they’re opiates. So, you could say that this is the same as drinking alcohol. I’m not an alcoholic anymore, but i’m a bit of a junkie,” adds Marek with exaggeration.

Marek today

He currently lives in Brno, where he moved some time ago. “I was with my parents for four more years when I came back from Italy. They helped me; they took care of me. I owe them and my brother a lot.” Marek is employed in the Fenix Social Enterprise. He helps people in wheelchairs with a selection of incontinence products. He recently started with a floorball, still playing basketball for the Brno team, although he had already finished his 10-year playing career some time ago. Teammates call him “Hammer of Tvrdonice (Tvrdonické kladivo).” “I still enjoy it. Sport helps me not to get lazy. At least not more than I am now,” says Marek with a smile.