EN
Łukasz is 35 years old and he can unbutton his shirt by himself.
It doesn’t sound like something exceptional, does it? “Just one button at a time”, as he used to say with a gleam in his eye, which made him look more like a smiling kid than a grown man. And yet, to him, unbuttoning a shirt is not just an ordinary everyday activity - it is a sort of a victory…small, personal, but not less important than the ones rewarded with medals. Years had passed before the day when he managed to fasten the first button himself. Long, stubborn years, sometimes filled with the feeble light at the end of the tunnel fading before he could reach them. But maybe thanks to these twinkles, even though they faded, he knew which direction he should follow.
Gdańsk in 1990 was a completely different city than it is now. You could still feel the vibe of Polish People’s Republic times in the air and people still held vivid memories of this period - not completely gone, but already miraculously distant. In Zaspa, in one of those hospitals which were built of concrete but seemed to be made of cold and silence, Łukasz was born. Definitely, too early. With spastic quadriplegia (a type of spastic cerebral palsy that affects all four limbs). “I have known right from the beginning that something is not right,” his mom, Mariola, a woman with an exceptionally calm look, says. As she recalls, he couldn’t stop crying and his body looked like clenched hands that forgot how to open. The spasm which doesn’t subside. As if her baby was an embodiment of fear. The doctors said it would pass. That it takes patience, time and exercises. That babies are different and there is no need to worry. But a mother knows best. A mother doesn’t need papers, stamps and titles. A mother hears her baby’s cry and she knows it doesn’t cry the way other babies cry. “On the one hand, I was telling myself that I had to be strong, on the other hand, I couldn't watch the suffering of my son”.
Staying calm was supposed to be the key strategy and, who knows, maybe that’s why Łukasz got to physiotherapist only after 6 months. Before, the neurologist had recommended the Vojta therapy, which consists in applying pressure on a number of particular points on the patient’s body in order to trigger movement patterns. During therapy sessions, muscles’ activation in the form of coordinated movements of the core and limbs can be observed. ”Łukasz was screaming terribly. I couldn’t let him suffer like that. When I was mentioning that to the doctor, she was claiming proudly that all her patients are treated with this method and there is no need to make any exceptions.”
When Łukasz hears the name Vojta in our conversation, he starts laughing loudly. We’re sitting in a humble living room with windows overlooking the green areas of Przymorze and Łukasz with his mum can’t get over their amusement.
There are three mugs on the table. It’s nothing unusual. Those who know this family can confirm that their coffee machine is always ready to be used. One of the cups which has a metal straw weighs much more than the others despite looking exactly the same. This is Łukasz’s mug. It’s actually not just a mug, it’s a part of his everyday life. It’s a ritual, a routine, and a symbol of safety. A coffee after dinner is as natural as a storm after an unbearable heatwave. Without that ritual, Łukasz’s life would lose its taste, colour and rhythm.
You could assume it’s just a normal thing - drinking coffee. But when your body is constantly offering resistance, not cooperating with you, and sometimes even turns into your opponent, every simple activity like this one becomes a victory. Mariola is holding the mug as if it was some precious object, although, in reality, it is not. Just a mug…there are millions of cups like this one in Polish households. Łukasz takes a few sips, voraciously, as if he hasn’t drunk in weeks, but also as if he wanted to show the world: “See? I can do this!”.
His mum is looking at him from a distance and she’s smiling. She calls him “a coffee addict” and I am not surprised. One time, after this pump (what’s the name of it?), the baclofen pump was implanted, the first question that Łukasz asked the doctor was not about pain, rehabilitation or medicines. “When will I be allowed to drink coffee again?”, he asked with a poker face, making everyone in the room laugh.
That’s just who he is. Consistent. Coffee is something sacred to him. It’s a moment of respite in everyday struggle against his own body.
Although Łukasz’s medical record is so extensive, he could share it with all the neighbours in the famous “falowiec” building, the smile almost never leaves his face. His childhood wasn’t similar to the childhood of the majority of kids. There was no playing outside from the early morning till the sunset, no walks to the unknown, no rustle of trees or laughter of friends in the background. It was a bit different. Different, but not incomplete. His mother is telling me about it with such tenderness, you can almost feel the warmth they created despite all the difficulties. She’s recalling holding him in her arms from the very first day, in the hospital, gently stroking him, signing songs to him. It was a fight not only against the disease but also against her own fear.
When other kids were running around, Łukasz was learning every single thing, one by one. Every small step towards independence was like reaching the summit of an eight-thousander. Everything that seems simple to most of the people was a challenge to him. It’s hard to describe it with words. But there was something else, too - a connection between a mother and a son which was stronger than pain and weakness. That gave them strength, when the world seemed to reject them. Without that, Łukasz wouldn’t be the same person he is today.
You should also know that he is a really special person. An amateur photographer with a little edge! He has attached a tripod to his wheelchair – such a smart idea, thanks to which he can take photos and make his photographic concepts real. The pictures he takes always tell stories. “Breakfast in the park” captured in one of his photos depicts over a dozen pigeons eating grains together. It seems trivial. It’s just a scene we all pass by everyday. But Łukasz noticed something more in it and decided to photograph it during one of his walks.
The walls in his room are covered in prizes. It’s not about showing off or flexing “photographic” muscles. They are a visual evidence of everyday struggle. Each diploma, each card, each framed photograph is a symbol. A symbol of fight, persistence, passion. Mariola says that, to them, they are not just pictures. Winning one of the photographic contests has led them all the way to Bydgoszcz. It was a completely different world to the one they know from their everyday life. But Łukasz was just being Łukasz - smiling, with the gleam in his eyes, telling the world “Watch me! I’ll show you!”.
The cash prize allowed him to make his dream come true and buy a laptop. It wasn’t just an equipment, it was a tool which made it possible to develop his passion, to connect with the world, to create. Mariola recalls how long he has been waiting for this moment, patiently putting aside small sums of money until he could finally buy it. With the laptop, the world was closer to him than ever before. It wouldn’t have been possible if a certain situation, which sounds as if it was taken from a sitcom scenario, hadn’t happened.
- “Once, I left Łukasz with a volunteer, because I had to run to a doctor’s appointment or some meeting,” Mariola says. “But I knew there was something going on, because Łukasz kept laughing and asking me when I would leave. And what happened? Half an hour later, I heard my phone ring - a familiar sound of notification - one time, three times, seven times. I checked and all these notifications were about incoming transfers to my bank account. I dropped everything and quickly came back home, where Łukasz, being super serious and proud of himself, sitting at the desk in front of the computer, showed me that he and the volunteer had opened a fundraiser on Facebook to collect money for a camera. Łukasz’s friends and acquaintances turned out to be amazing! They donated money so fast that we were able to go for a camera hunt even on the same day!"
Occupational therapy workshops in Przymorze may not be the kind of meetings they write about in newspapers or a space where big performances are staged. However, to those who attend them, they are sometimes the most important meetings in the world, where they share joys, boredom, arguments, jokes and other everyday matters. And from time to time, listen to the music, which is usually played by our DJ on his laptop. It’s hard to measure in decibels how much it means to Łukasz. Music is his way to express himself and his emotions, including fear and uncertainty. It has always been present in his life - whether in the background or in the centre. He has fallen in love with it just like he has fallen in love with taking photos. And when Łukasz loves something, he tries to spread this love among those close to him.
He has a special mouse. Some might say it’s no big deal, just a device. But for him it’s a tool to create just like a dip pen in the hands of a chronicler, back in the old days. When he sits at the computer, he is in control of the situation. He is picking the songs, selecting tunes - something easy, or something more serious. He knows the musical taste of his friends. He can entertain and surprise them, or sometimes, just play something that fits the moment and fills the silence. The important thing is that he gives them something from the heart - from one man to the other.
When asked what else he likes to do, he answers without hesitation: “Nothing”. But after a while, you can see a wide smile on his face. Everyone who knows Łukasz can tell that he jokes a lot. Despite the fact that when you first meet him, his speech may be difficult to understand, it gets better in time. Łukasz forms complete sentences, sometimes cracks situational jokes and you can even hear a stream of swear words from him, from time to time, despite the fact that he is a real gentleman.
To Łukasz, cinema and theatre are not just places where he can sit down and watch other people’s stories. They are much more - they are the doors to a world that sometimes seems to be inaccessible, but thanks to these channels, it seems closer and more real. “We can’t just sit at home,” Mariola, Łukasz’s mum, says. Going out to the cinema or to the theatre is like oxygen to them, like a deep breath after a tiring day. Because when the world outside brings difficulties and the body refuses to cooperate, such little pleasures are special. The sound, the image, the words - they all make up a whole, which helps to forget tough reality.
Daily life can be boring. A physiotherapist visits Łukasz twice a week. Volunteers from Fundacja Hospicyjna pop in, too. A walk, home, shopping. Just everyday life, which, as we know, is not always a bed of roses. It’s not only good moments, like a coffee and a cake after dinner. When Łukasz’s wheelchair broke, the fight began – months of attending appointments with committees, filling in the documentation, explaining the situation. Eventually, they won the battle, but still needed to pay a part of the amount themselves. This is nothing unusual – they have got used to the fact that, in their reality, nothing comes to you easily. You need to swallow the pill and fight.
However, great miracles happen, too. After the surgery she went through, Łukasz’s mum heard that she cannot carry more than 5 kilograms anymore. Łukasz is a big guy, so they needed a special lift. It caused more difficulties they needed to face. Although pretty prosaic, these problems were also pretty serious.
The wheelchair and the lift didn’t fit in their old bathroom and the conditions in their flat were like the ones on camping. A portable toilet in Łukasz’s room became a part of their reality. That’s when Wojtek, a member of one of the charitable organizations, entered the stage. “Why exactly am I here?”, he asked. And then he just renovated the bathroom and made it bigger. “For free!”, Łukasz screams with excitement. “He didn’t even want to take money for the materials”, his mother comments. “I remember it like it was yesterday. He asked me: ‘Don’t you know there are still good people in this world?’ And do you know what I told him then? That only such people come my way!”
When you look at Łukasz, it’s hard not to notice how much light he has in him. It’s not only about his smile, which practically never leaves his face. It’s something deeper - the acceptance of life, even if it is full of obstacles. Every day here is something he has to struggle and fight for, but these days are also full of laughing, joking together and drinking coffee which obviously has to be hot.
Mariola doesn’t describe herself as a hero. She talks a lot about love and ordinary life. But if you listen to her and Łukasz for a while, you will understand that what they do together is a daily lesson on courage - a courage without a fuss, without fanfare…the real one. I ask them if they argue a lot. They both start laughing right at the same moment. They both look up, smile widely, it's easy to see how similar they look. “Well, son, do we argue a lot?”, mum asks Łukasz. Do they shout? Sometimes. There is no silent treatment, though. They discuss everything. As Łukasz puts it: “Neighbours haven’t intervened yet. They haven’t called the police so far.”
Łukasz still takes pictures. He still plays music on the laptop that he has won. He still has dreams and what's most important, he meets good people on his way. Or maybe he just attracts them? At the end of our conversation, Łukasz and his mum are laughing again. This house is full of joy and it’s hard not to smile at them. Because although this story is not a fairy tale, despite appointments with medical committees, wheelchair ramps and portable toilets, there is something else, which is very rare…
…happiness against all odds.
A life that doesn’t give up.
And people who, instead of looking up and asking “why?” , go on, step by step, one button at a time.
