Guest Post: A Life Interrupted Must Carry On by Maciej Paczuła

(Maciej is a quadriplegic from Poland sharing his life with this world. You can follow him on Instagram at Życie z paraliżem)

I was 17 then. One day I felt sick. I had a headache and it wasn’t a “normal” pain. Everything seemed blurry. I was sent for tests. Soon it was all clear. It was a brain-stem tumor.

I accepted 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 simply be cured. I didn’t think about what would be. 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.

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.

I didn’t find out about the complications until several 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.

It is a fact – I cannot move (minimally with a hand or foot – only a few millimeters), but I can feel and understand everything that is happening around me. It hurts to be locked up at home all the time. Spasticity is tiring. There are days when it’s really tough. Rehabilitation, swimming pool and massages help. As for the chances of improvement – I joke to myself it’s 50 / 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.

Left: Maciej before his brain tumor removal surgery in 2017. Right: Living with a severe SCI due to surgery complications.

Modern medicine is just beginning to discover treatment options for spinal cord problems. Theoretically, 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 – really high. I don’t want to risk that yet. I am enjoying the life I have.

My life has become a challenge again. The first step was to buy a special computer mouse, thanks to which I can easily use the Internet. I knew I should continue my education, but that first step was always missing.

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 visits me. I have some friends. We often talk for a long time with Tomasz, my friend. He motivates me to act and shows me how many opportunities the world has to offer me! I say that he is my mentor.

It was Tomasz who persuaded me to share my story and memories with other people. This is how the blog “Życie z Paraliżem” (Life with Paralysis) was created. I treat it as it is my work! Of course, it’s a pleasure for me, but I also feel it is my duty. I also got motivated to learn. I enrolled in an online high school course. I am slowly passing all the subjects, and some time ago I signed up for the final exams. What’s next? We shall see.

We reach more and more people with our blog. Sometimes I record videos of rehabilitation exercises. I also described my medical history – many people reached out afterwards saying that it helped them in their fight for health. Such news makes you very happy! For me, contact with other people is very important.

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 the worst. Even though my everyday life is repetitive, I look forward to the next day! I am happy with every conversation, every photo, story we put on the website. Life is too good and too short, and unfortunately too easy to lose. It is worth to be responsible. But let’s get carried away sometimes, within reason! But most of all – let us lean on those who wish us well.