Jarosław Różanowski is a resident of Somonino. Both he and his two siblings suffer from muscular atrophy. Although they have been affected by a terrible disease, they have not lost their good spirits or their desire to function normally in society. They also share one dream that could make this easier for them: buying an apartment in a city. They believe that, with the help of kind-hearted people, they will be able to make it come true.
Here are Jarek, Waldek and Marzena.
Waldek
Hi, I’ll start at the end, although perhaps it is also the beginning—surely every ending is the beginning of something new. How did I end up here? I can say that it was thanks to dreams and chance. It often happens that the best things in life happen by chance. That does not mean we should wait for them with our arms folded. No, because we need to help chance along and dream. If someone believes that their dreams will come true, that is already half the battle.
It began with a dream that I am trying to fulfill together with my brother and sister. Before I tell you about it, I’ll start at the beginning.
My name is Waldek, and I suffer from muscular atrophy (in short, it means that my muscles are becoming weaker and eventually waste away). I have used a wheelchair since I was ten, and since I was fifteen I have no longer been able to raise my arms. My disease is genetic, and it often happens that siblings suffer from it as well.
Jarek
Hello everyone, my name is Jarek Różanowski, and I received an offer I couldn’t refuse to post on zaBalonikiem.pl—thank you. :) I’m not really sure where to begin, so perhaps I’ll start with a few dry facts. I am 24 (although I always feel younger), and I have two sisters—Marzena and Natalia—and a brother, Waldek.
There are four siblings in our family, three of whom—Marzena, Waldek and I—suffer from muscular atrophy. Muscular atrophy means that we cannot scratch our noses or a few other important parts of our bodies. Fortunately, our youngest sister Natalia is healthy and helps us with everything.
Waldek
The three of us were taught at home until we completed primary school, and our younger brother also attended middle school (my sister and I were still finishing an eight-year primary school). Learning at home is not the same as being at school. Without peers, it is rather boring.
After primary school, I had a five-year break from education. I probably would not have continued school—not because I did not want to, but rather for reasons beyond my control—but fortune smiled on us. When Jarek was finishing middle school, the director of a school adapted to the needs of people with disabilities in Police came to visit us.
Jarek
In 2005, thanks to the Foundation for Helping People with Muscular Atrophy, Waldek and I went to the “Special Educational and Care Centre for People with Motor Disabilities in Police,” where our lives changed and our balloons began to grow and slowly rise upward.
We went to Police to attend high school, but in reality we learned how to live in society. Although I do not know whether we had to learn very much, we certainly became more open to the world and to people.
Our lives changed significantly. We met many people—as­sistants, teachers, educators and students. It was a major change, because at home we were mainly in contact with one another. In time, the strangers we met became acquaintances or friends, with whom time turned into a waterfall. Places that we could not access in the village, such as the cinema, shopping centre, our favourite Cafe Wenecja ice-cream shop and many others, brought a lot of colour to our balloons.
Waldek
It was a very good decision in our lives, not only because we could continue our education, but above all because we learned independence and met many people. We became friends with some of them. It was a time when, despite our disabilities, we felt fully able-bodied. We often exchanged the four walls of our own room for a bus that could take us wherever we wanted, and going to the cinema, getting ice cream or having pizza was no longer an impossible expedition requiring extensive preparation.
That is why, when the time to return home to the countryside was approaching, I decided that we would start raising money for our own apartment in the city. During the six years I lived there, I understood that this was how I wanted to live and that, despite my disease, I wanted to feel free. I knew that the Internet was a medium offering great possibilities, and that is how my website www.iwanttodream.com was created. Through it, I look for people who are willing to help me—and who do help me—and I believe that my dream will come true.
Jarek
We spent a total of six years at the centre, living carefree lives. Although we had our ups and downs, we remember that period as the best one, and when we are at home we sometimes joke that we miss “home.” That is why we opened an account with the Avalon Foundation and created our own websites (Jarrek.pl) to raise money for our own apartment somewhere in a city—ideally where our dream began, in a place connected to us by countless memories: Police.
But what is this dream? It is not a Bugatti Veyron or one of the Ferraris. It is down-to-earth, seemingly ordinary. Like everyone else, I would like to be able to decide for myself. To have my own place, four walls, meet people and have my own apartment. That is my dream. The mere thought that it might one day come true brings me joy and gives me strength.
Waldek
There are moments of doubt when I have had enough of everything. Of course—but that is normal. I do not think there is anyone who has never been sad, but nothing lasts forever, and neither does this. Sad moments pass. Sometimes friends help, sometimes favourite music, and sometimes it is enough to tell myself, “It could always be worse,” which does not mean it could not also be better—that is what I am striving for.
Do I have other dreams? I have many; some change, while others remain the same. I would like to study psychology at university. I have a few more, but they are hidden—mine alone. I create websites as an amateur. I would like them to become professional one day, but to make that happen I still need to study. I also follow all kinds of information from the worlds of the Internet, social media, start-ups and so on.
At the beginning of November 2012, I started my first job in my life (of course, over the Internet) at Brand24.
I used to get terribly annoyed when someone wanted to help me, but I think that was because it made me realize that I could do fewer and fewer things on my own, while others wanted to do even the tasks I could still manage for me. Now that you ask, I remember one such situation.
It was my first year in Police. Grzybek, one of the assistants, wanted to feed me, and I shouted at him that I could manage on my own. I soon forgot about it, and later, when we were reminiscing about the good old days, he told me that he remembered how I had shouted that I could eat by myself. He did not know that and only wanted to help, while I thought he wanted to do it for me. Now I understand that when people want to help us, they often do not know our limitations and abilities, and I no longer get angry when someone wants to help me even with something I can do myself. At most, I say that I can manage it on my own. My disease is progressing, and I know that what I can do easily by myself today may be more difficult for me tomorrow.
And when I can no longer manage something on my own, I ask others for help. The presence of people who want to help me only makes me happy.
Jarek
I do not know whether you have ever offered help to a person with a disability and had them refuse, becoming indignant or shouting at you. If not, that is good. But I know such situations happen. From the perspective of an able-bodied person, it must be rather strange. Not only do they want to help someone, but they also “get their hands slapped.” In my opinion, everything depends on the situation. If someone asks once, “Can I help?” that is fine, and asking a second time, “Are you sure?” may also be acceptable. But if, the third time, they stop asking and practically begin “helping,” the person with a disability gets upset because someone is treating them as more disabled than they are. The person helping takes away, for example, one of the few things they can do themselves and feel proud of—and that partly explains why they shout.
But sometimes it is also the case that an able-bodied person offers to help someone with a disability, and that person immediately shouts—and that really is strange. Please do not worry about such people or become discouraged. You can answer them just as emphatically, for example, “All right, I only wanted to help”—perhaps they will think about it and be a little kinder next time.
One more small suggestion for parents of sick children: try to teach them independence according to their abilities, which are usually much greater than they seem. I write this because at the centre in Police there were many children who only learned there how to take care of themselves; at home, their relatives did everything for them. It often requires considerable effort, but afterward the joy of performing ordinary tasks is enormous for both sides.
Everyday life—at home. Nothing happens, so to have at least some contact with people, we go to the Community Self-Help Centre in Rybaki, attended by people from the surrounding area who are more or less disabled. They make stained-glass pieces, paint and do other similar things.
We spend most of the day in front of the computer. It is a window onto the world—although somewhat plastic, it does a good job of dispelling boredom. Facebook helps us communicate. Although 300 friends cannot replace going out for ice cream with two other people, it is still good that it exists because, after all, nothing is more enjoyable than a new friend on my fan page. :)
Besides browsing Facebook, I watch TV series—House, Dexter, Californication, The Surgeon and others. It is not very ambitious, but so what? I have to do something. I would like to make websites; I need a proper kick to get down to studying.
Waldek
How do you chase a balloon and catch up with it? There is probably no set rule for how to catch a balloon and enjoy it. You certainly have to believe in what you are doing and do it with all your strength. If we do something half-heartedly, we will certainly fail. We must not give up either. If they throw us out through the door, we enter through the window with a smile on our faces, pursuing the goal we set for ourselves.
People are my balloon. It is for people that we can change, help and feel needed. Believing that others will help us, we must also help others—not because it is expected of us, but because we want to.
I want to, and I believe that kindness always comes back. If even one person feels the same way I do, then I already have my balloon.
If you would like to help us, you can donate 1% of your tax or make a donation. We thank everyone for this already.
You can find information on how to do this on our blog, jarrek.pl.