Maruška

We from the art group Tlustá čára decided to interview our friend Maruška. We took a look into her artistic and personal life. Maruška, like us, creates, despite the fact that she is struggling with serious health limitations. She has our admiration and we cheer her on!

How did it all begin?

At grammar school, Maruška gravitated towards painting, she enjoyed it, but due to her limited movement of her hands she was not good at it. When deciding between music and art education, she opted for music. However, her desire for art and creation remained.

After graduation, Maruška was browsing the internet and saw a demo of a program that allows you to draw on the computer. She was intrigued by this option and wondered what it was and how to work with it. The program simulated drawing with pencil, brush and chalk.

So she tried taking a paintbrush online and doing her first line. It was definitely a Fat Line 😊. It took some time before she perfected this technique and drew her first picture. She got into the habit of listening to her favourite music while she created a form of music therapy of sorts for herself. Her first painting was made to the songs of Woodkid, and she loves to create to the songs of the band Nightwish, the film composer Thomas Bergersen, Adam Uličný and the band Jelen.

Maruška had a couple of exhibitions in Žďár nad Sázavou - in the Municipal Theatre, in the Matěj Josef Sychra Library and in the Bishop's Gymnasium. Mr. Josef Abrhám or Matěj Ruppert signed the signing book for visitors at the exhibitions. One picture was also dedicated to Lucie Bílá.

To date, she has painted about 200 pictures. Her favourite colours are purple, red and black.

Maruška

Maruška comes from a village near Žďár nad Sázavou. Since birth, she has been suffering from spinal muscular atrophy (SMA) and uses an electric wheelchair. Although she would like to be independent and relieve her family, she lives with her parents, who are both retired and take care of her. Due to her illness, she needs 24-hour assistance, which is very expensive and the monthly care is close to 100,000 CZK, which is not in her power to provide.

Since 2020 he has been undergoing the newly approved treatment with Spinraza at the University Hospital Brno. It brings new hope for Maruska. Every year she also goes with her mother to the rehabilitation institute in Brandýs nad Orlicí, in the past she underwent rehabilitation in Košumberk at the Hamza hospital. She fell in love with this place.

She realizes that there are other people in a similar situation to her who are affected by this disease. She is pursuing psychology and is seriously thinking of starting formal studies. She also tries to help and support people with the same illness.

She's a Rebel!

Maruška says that if she didn't have SMA, she would be a rebel, and we believe it! We are not surprised that she regularly visits the legendary music festival Masters of Rock in Vizovice, enjoys trips, barbecues and travelling around the Czech Republic. Her other dream is to go abroad, to visit the USA or Moscow.

As we mentioned in the introduction, Maruska came across painting on the internet. She has a very positive relationship with PC and technology. She even graduated from IT, so it's not surprising that she is a lover of computer games. Even her bunny is named Fredrik, after the Swedish developer of Haven and Hearth. While playing this game, by the way, she met a Russian academic painter who did the lines for 3 pictures and she finished them in PC.

Maruška also told us that she kept her artistic passion for art a secret. She hasn't told anyone about her art for about a year and humorously adds that her mother must have thought she was watching porn because every time she came into the room she quickly hid something. As we wrote, Maruška is a rebel! 😀

More information about Maruška can be found on her social networks

Interview

In your work we see a great inspiration from nature and natural patterns. What else inspires you in your work? What themes do you like to portray?

I try all possible themes and even like youtube, but of course it rarely resembles because in the videos they don't draw it in the computer like I do, they use real brushes. The painter can dip his brush in two colors at once, which is not possible in the program I have. At least you don't end up with a plagiarized work, but a completely new one :D, or at least that's how it usually works out. I think my favorite things to paint are trees and abstract images.

You mention in the text that you have a problem with the mobility of your upper limbs, so how is the painting done in the computer program? Can you tell us in which program you create your works?

The program is called Artrage. I tried another one, where the colours flowed and you could blow them out with a straw, but the computer absolutely couldn't handle it. I paint with a regular mouse, otherwise you can buy a pencil that responds to tilt and pressure. Unfortunately I can't use that because of my limited mobility. The mouse can be moved, whereas the pencil - wherever one touches the tip of the sensing pad, one touches the screen. Left corner of the pad = left corner of the screen.

Your personal photos ooze incredible energy and your smile is not missing anywhere. Even so, your life story is not a simple one. When were you diagnosed with SMA?

I've been told that, I don't know, I guess it's because I don't experience a lot of things, so when we happen to go somewhere, I'm happy. I don't mind SMA in general, I love traveling, I could fly outside all day in the summer. But unfortunately the only one who takes me anywhere is my mum and she's 65 now, so it's not so ideal anymore and sometimes I have to beg and we fight, which is exhausting. It would be nice to have more people for trips because I have a modified car, so I don't have a limit on that, but so far no one has come up with one. And paying someone to go on trips seems weird, impersonal, sad, like paying friends. I'm not criticizing the services and the people who use them, I just personally find it sad that a person can't do something for a person without being paid. I generally don't like the way the world is set up, but this philosophizing would go on for a long time.

I was diagnosed at 9 months. The disease was confirmed by genetic testing in Bonn, Germany, where they changed my original grade I to a more favourable grade, SMA II. I was also examined by my friend Prof. Václav Vojta at a meeting of neurologists in Nové Město na Moravě.

Those who have not experienced it can hardly imagine the situation. Could you describe your day with SMA in a nutshell? How can our readers possibly help and support you?

I don't know whether to describe it, because it's not very interesting. At the moment, I always equate it to the craziness around covid measures. People grumble and protest and don't appreciate what they have, yet I feel absolutely no change in my life in the covid situation. People should realise that even the most stringent measures are normal life for some people.

The only thing that annoys me about this diagnosis is that you need someone to come along. A person is trapped inside, yet has committed no crime, and still has to pay for their freedom because the state doesn't care. A friend who's living situation is dependent on assistance only, barely fits into the amount the state gives. She told me that she has had to pee because she only has assistance for 5 hours a day and the rest she waits on her own. So she doesn't drink and destroys her kidneys... everyone healthy should try it. It's time to invent a robotic assistant :D. One more thing that bothers me is that the "healthy" environment perceives us to be different. When we could say the same thing about you, but we don't say and label that maybe we are the special ones and you are the weird healthy copies. 😀

I don't really go out in the winter now. I wake up at about 10:00, my mom gets me dressed, toilets, everything... she puts me on the PC and I eat on it. Sometimes, when she has the strength, she exercises with me. Basically, I'm on the computer from 10:00 to 11:00, painting, watching movies, playing games, when my hands allow, I don't always have the strength. I just sit a little differently and I don't even eat. I also text a few people. I used to get more visitors, but they have their own lives now so it's not much. I have a few loyal ones left, but we only see each other a couple of times a year too.

In the summer it's a bit better, I can go into the garden and sometimes we go into the woods or on a trip and for a month to a rehab facility, that's the only livelier time in my life. It's funny how everybody there says they're looking forward to going home, and I always say I'd move there. Actually, I've always liked hospital stays as well, not examinations of course, but I'm around people and that's good. That's probably what I miss the most, contact with people, chatting doesn't make up for it.

And how readers can help me, hmm, that's hard. I don't like to ask for help, much less money, this disease that destroys many hasn't gotten me yet. 😀 I don't have a positive relationship with money, and yet I need it to live, it annoys me terribly.

I don't like it at all that young mothers immediately beg and stuff the child into the media so that people feel sorry for them and send them money. I guess sometimes it's necessary, but not always. Especially the state doesn't deal with such things when people pile on. There was probably only one foundation when I was young, and all they gave was a tiny lump sum for a motomed (an exercise bike for arms and legs), and we paid for the rest of the stuff ourselves. If something was expensive, I just didn't have it, and it's only now, 30 years later, that I've used one foundation for a few little things.

I will be happy if my story or my work makes readers happy or sends anything positive into their lives, so I won't ask for anything. :))

I can't help but notice that you are very active, despite your health complications you try to live life to the fullest. What are your plans for 2022? Can our followers look forward to any of your exhibitions?

I would be more active, but unfortunately I need the help of another person, and as I wrote, 99% of the time it is my mother. My sister comes with me to the festival in Vizovice, she is there with me, she helps me, she does my make-up, she does my hair. I'm very grateful to her. I know that some music is not her cup of tea, but she still takes the time, takes a vacation and comes with me. I'm very grateful to my family for taking care of me in everything, even though it's often very demanding.

I'm not planning a show for 2022, except for the one from you, if it works out 😊.

Artistic group Tlustá čára, Author: Ivana Kočík