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«I had a headache that day and it was not a normal pain. Everything seemed blurry, and the image “reached” the brain after a while. “Maciek will remember that Friday from 10 years ago forever. After him, nothing was the same anymore.” I was not afraid of treatment or surgery. I wanted everything back to normal. But my future was supposed to be completely different … “He told Medonet about his life, the struggle for each day and how to find strength in the most difficult moments of life.
- Maciek was 17 years old when he found out that he was suffering from a brain-stem tumor. 10 years have passed since then
- The operation saved his life, but it also made everything nothing like it was before. Maciek fell into a coma, after three months he woke up, he was paralyzed from the neck down
- Maciek: I have already won, getting this great treasure of life for the second time. It took a long time for this to hit me. Others struggling with similar diseases are not so lucky
- Maciek’s greatest dream is to buy an electric wheelchair adapted to his needs. “Such a stroller is my mental health, the possibility of development, making everyday life easier”
- You can find more such stories on the Onet homepage.
Monika Mikołajska listened to it
I was scared, but there was no panic
Before I found out about the disease, my life was quite ordinary. I was 17 years old and I had just started attending a vocational school with a car mechanic profile. I wanted to follow in my father’s footsteps as a professional driver. I didn’t think about the future, I lived from day to day. I had friends, the first lasting acquaintances appeared. I was looking forward to my 18th birthday …
One day I felt sick. I remember it was Friday. I had a headache and it was not “normal” pain. Everything seemed blurry and the image “reached” the brain after a while. I went with my mother to the clinic, they gave me a drip. It helped, the pain stopped. We thought it was just a dehydration effect. Unfortunately, the situation repeated itself the next morning. Mom did not wait any longer, we immediately went to the emergency room. There I was sent for tests. Soon it was all clear. It was a brain stem tumor.
- Brain tumor (brain tumor) – symptoms, types, diagnosis
I took this information calmly. Of course, I was afraid, but there was no panic. I tried to console my mother. It felt like a disease that could be simply cured. I didn’t think about what would be. I lived in the moment, talked to my relatives, tried to enjoy everyday little things. Doctors were honest with me, but I was not afraid of treatment or surgery. I just wanted everything to return to normal as soon as possible. As it turned out, my future was supposed to be completely different …
Photo Private archive / Maciek after surgery
An operation, a coma, and a whole different life
I waited two weeks for an operation at the Children’s Memorial Health Institute in Warsaw. I remember this time as one great unknown. There was still no panic in me. I had already had one operation before, so I took it as a normal routine operation. I talked a lot with my family and waited calmly. And then there was preparation, anesthetic and darkness.
The operation was successful, but complications appeared in the first day – internal hemorrhage occurred. A life-saving reoperation was needed. I fell into a coma.
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I didn’t find out about the complications until a few months later, when I woke up. My life has changed dramatically. In one moment it turned out that I could not move and that I was dependent on the help of others. However, my attitude towards life has not changed. I was grateful for each day and still am. I approached my situation very calmly, I was looking for solutions and possibilities of further life. It cheers me up and allows me to fight for every moment.
Photo Private archive / Maciek in a coma
I won by getting the great treasure of life for the second time
The life of a paralyzed person can be beautiful and rewarding as long as we have loving people around us. I owe a lot to my family and loved ones. My parents take care of me bravely, and my sister also helps me on a daily basis. A priest from the local parish is visiting me. I have some friends, acquaintances. We often talk for a long time with Tomasz, my friend. It motivates me to act and shows how many opportunities the world has to offer me! He is even my mentor. Thanks to the website that we run together, I met many people and opened myself to a new reality. I know there is still a lot ahead of me.
It is a fact – I cannot move (only a minimum of my hand or foot – only a few millimeters), but I can feel and understand everything that is happening around me. It must hurt to be locked up at home all the time. Spasticity is tiring. There are days when it’s really tough. It is not easy to fight with. Rehabilitation, swimming pool and massages help. As for the chances of improvement – I joke to myself it’s 50 out of 50. Either it’ll be okay or it won’t. My existence is a lottery. I have already won this great treasure of life for the second time. It took a long time for this to hit me. Others struggling with similar diseases are not so lucky. Sometimes they don’t even have a chance to fight, and they already disappear from this world….
Foot. Private archive / Maciej and Tomasz
Modern medicine is just beginning to discover treatment options for spinal cord problems. In theory, I could undergo cervical bone reconstruction surgery and implant a spinal cord stimulator. However, the costs are enormous and the chances of further complications or even death are really high. I don’t want to yet. I am enjoying the life I have. What is to be will be.
Life is too good to give up
My life has become a challenge again. The first step was to buy a special computer mouse, thanks to which I could easily use the Internet, write, and communicate with other people. I knew I should continue my education, but that first step was always missing.
A year and a half ago, I met Tomasz. It was he who persuaded me to share my story and memories with other people. This is how the blog “Życie z Paraliżem” was created. I treat telling about my everyday life, memories or interaction with the readers of the website as my work! Of course, it’s a pleasure for me, but I also treat it as my duty. I also got motivated to learn. I signed up for the Matura exam on the Diplus platform. I pass all the subjects slowly, and some time ago I signed up for the final exams at the CKE. What’s next? We will see.
Foot. Private archive / Maciej
By blogging with Tomasz, we reach more and more people. I try my hand and sometimes record videos of rehabilitation exercises. I also described the history of my illness – many people said afterwards saying that it helped them in their fight for their health. Such news makes you very happy! For me, contact with other people is a stepping stone from everyday problems, besides, I like to talk very much, I am open to others.
At the moment, my biggest dream is to buy an electric wheelchair, adapted to my needs. I would control it with my mouth. I can’t wait to finally be able to drive around and see how the world changes. I haven’t been to Gdańsk for years. I only go to the Medical Academy for the annual MRI. I really dream of at least a substitute of independence. It is deciding about ourselves that makes us human. Such a stroller is my mental health, the possibility of development, making everyday life easier (you can help Maciek in his fight for independence – for details, see www.siepomaga.pl).
Photo Private Archives / Maciej is testing an electric wheelchair
I wish you all remember that life is too good to give up. Even at its worst, with the help of our loved ones, we can notice the good and be delighted with it. It may sound cliche, but it helped me at its worst. Even though my everyday life is repetitive, I look forward to the next day! I am happy with every conversation, every photo, story that we put on the website. Life is too good and too short, and unfortunately too easy to lose. It is worth being responsible and obligatory. Let’s get carried away sometimes, but within reason! But most of all – let us have support in those who wish us well.
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- Types of disability
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