Rehabilitation center for 60 disabled in Poland

It all started when I bought a motorcycle.

I wasn’t a huge fan of those machines. It was a youthful whim. Just like the secondary school which I had chosen. I studied to be a small gastronomy cook, but I didn’t want to work as one. That August, the most important for me, August 2018, I was an ordinary 26-year-old boy, who worked in a furniture factory, sometimes went abroad in order to earn some extra money, and lived in Oleszyce in Podkarpacie, on the second floor, with his mum, in a block full of flats without an elevator. The latter fact is going to be important for later events. 

I wasn’t drinking and driving.

I did not drink, smoke or use drugs. I was only "intoxicated" with a rush of air and a feeling of freedom which the bike was giving me. I had experienced this freedom one day, for only 200-300 meters. I got on a motorbike, I left my house and I lost control of the machine on the next turn. To this day I don’t know how it happened. 

I don’t remember the moment of the accident. 

People told me that someone had called an ambulance which transported me to a nearby stadium because only there, the rescue helicopter could land and take me to the hospital in Rzeszów. There, after four days, I regained my consciousness. But not my old life. When I fell off the bike I broke my spine in the thoracic section and because of that I got both of my legs paralyzed. 

“I will definitely walk again in the future”.

That was the thought to which I was holding on while first laying in hospital beds and then when I was exercising in multiple rehabilitation centers. I deeply believed that after all of the treatments I will be able to get up from the wheelchair, fold it and give it away to somebody who needs it. So I grabbed every possible therapy that could help me achieve my goal. I was spending every penny on trying to find new methods of treatment. I even went under a procedure of transplanting stem cells. There was no improvement at all..

“I resented life”.

When the “rescue boards” ran out, they brought me back to the apartment on the second floor, in the block where there was no elevator. Every single day was the same: sleeping, eating, toileting, watching TV. Mom dressed me, washed me, sat me in the wheelchair, put everything under my nose.  And I couldn’t even get to the balcony to jump out of it because the threshold was too high. So I was constantly gazing at the outside world through the window, thinking why should I keep on going...

The spark of hope was lit by a Facebook post. 

I found an online profile of PAY IT FORWARD Foundation and information about training flats for people who became disabled. “There is still a chance for me to get out of these four walls” – I thought to myself while scrolling through pictures and reading the descriptions. I quickly filled in the form and sent the application. Then everything happened so fast. Call from the Foundation, online interview with the head of the Foundation and the instructor of an independent life and after 9 days I was already in Konin. 

My teeth hurt from clenching.

Because I had to learn every minor, everyday life activity performed in the bedroom, kitchen, bathroom, inside and outside. And no one treated me with kid gloves. After a couple of days they had sent me into the town. I had to get on a bus by myself, reach the destination and get out of the bus. I did not know that an assistant is following me and making sure that I’m ok. And then they threw me into even deeper waters – I was transferred to a flat where the assistants were present for only a few hours every day. 

Activities, activities…

… day by day, week after week, I was improving my manual fitness and becoming more independent. Some tasks were tougher than the others and I started to realize that  I can do a lot of things by myself. I didn’t go home until Christmas. And again, I got stuck in a flat without an elevator and again my mother started to help me in every single chore. By then I found out that I prefer to do things by myself. I started to think about going back to Konin but it’s easier said than done…

Problems started to pile up. 

Because I was not registered in Konin, nor did I have an apartment or a job. On top of that, the COVID-19 pandemic broke out, so I had to leave the foundation’s training flats. However, I insisted on staying in Konin. After many trials and tribulations, together with my friend, we found an apartment that we could live in. I became a volunteer in the Foundation, then I completed a course for instructors on independent living. Now I work for the Foundation and I believe that I will continue to work in it. 

I should start a family now.

And I am planning this, silently. Well, since I am already independent and I have a place to live in, I drive my own car, and have serious hopes for a permanent job… What’s more, I achieved all of this in less than 3 years after the accident! Now, I can focus on helping others in need and not let them take offense at life, but live it to the fullest. And it doesn’t matter if they do it standing on their feet or sitting in the wheelchair. The most important thing is that they have a place where they can learn it. 

(The text was written and published on June 9th 2021)

Hello, my name is Mariola and I am mother-grandmother of Eric – a wonderful boy with Treacher-Collins syndrome, who really needs Janaszkowo Settlement. Yes, I know how it sounds – almost every word is a riddle. So let me reveal it all to you from the start.

Here comes the first puzzle: Treacher-Collins Syndrome is a rare genetic disorder. Professionally, it is referred to as facial-mandibular dysostosis, because it is manifested by many deformations of the bones and tissues of the face and head. People with this illness have no or partial and misshapen earlobes, smaller jaw, slanted eyes, acleft eyelids and palate and their nose is deformed. Lastly, the underdevelopment of the zygomatic bones makes them look as if they don't have cheeks.

Riddle number two: I present to you not one, but... several Wonderful Boys. You probably know the first one because he is the main character of the novel, and then of the blockbuster with the famous American actress Julia Roberts. In the movie, Julia plays the role of Auggie Pullman's mom, who always wears a space suit helmet on her head to hide her face from intrusive eyes. Yes, Auggie was born with Treacher-Collins syndrome. Just like three other Wonder Boys: my two sons and my 7-year-old grandson Eric. Well, if such a genetic syndrome statistically occurs once in tens of thousands of births in the world, you have to admit that we are the „chosen ones”. 

Riddle three: why am I a Grandma-Mom? That's what Eric called me when I became his foster mother, after it turned out that his biological parents couldn't take full care of him.

The fourth riddle, or the question: what does Eric need the Janaszkowo Settlement for? Let's start from the beginning. We always joke that Eric was our Christmas present because he was born on December 22nd. We were not surprised by the fact that he might inherit a defective 5th chromosome from me and his father. 

Eric was born with undeveloped ears and fused nostrils. He underwent his first surgery when he was only 1 month old. The second one took place when he was 1 year old. Doctors placed special tubes over his tiny nose to help him breathe more freely. Earlier, when he was 8 months old, he received his first hearing aid. Thanks to it he could hear, but poorly. Now, Eric is 7 and most of his life he has been travelling from one specialist to another and there are still more craniofacial correction procedures ahead of him.

Today, Eric attends the first grade in primary school with integration classes. Although his condition is not as visible as in the movie Auggie, people still gaze at him – with sympathy, interest and sometimes with disgust. Especially at times when his face is not covered by a hat or glasses. I think that Eric is starting to realize his otherness because despite being cheerful, bold, communicative and open to other children, he does not like to draw attention to himself and, for example, does not want to take part in school plays.

When it comes to relations with people he is an individualist, just like in any other parts of life. He is the one who decides with whom he wants to talk and to whom he will not say a word. Same thing is with the choices of what he will eat, what he will wear or what he will do. Eric also has a lot of hobbies: reading (books at the 3rd grade level), drawing, playing with Play-Doh, collecting toys, singing and playing the keyboard.

Sounds impressive, right? But believe me, it didn't come easy. It is the result of tedious, daily exercises with different specialists. Treacher-Collins syndrome does not directly affect Eric's intellectual condition and abilities. However, my grandson needs continuous support in order to develop properly and become an independent adult one day. For many years to come, Eric is going to need help, e.g. speech therapist in order to speak clearly and communicate with people despite the deformed face and nose, a physiotherapist who will help him to strengthen the muscles, a sensory integration specialist to properly read all stimuli coming from the world and a psychologist who will help him to prepare for the difficult adolescent period and for the adulthood, without feeling different and lonely.

Those are the reasons why both Eric and I are waiting so much for Janaszkowo Settlement and for the rehabilitation classes which will take place there. 

Help us build the Janaszkowo Settlement!

The text was written and published on May 12, 2021.