«I learned to plan. If I go to my daughter’s communion, it will be fine ».
First there was the right hand. The pen fell out of the hand that had been working so far. It was December 2013. At work, they wrote cards for Christmas.
“I figured the numbness in my fingers was from a metacarpal bone that was broken a few years ago.” I ignored them – says 38-year-old Mariusz Zielke from Gdynia.
After the hand, it is time for the forearm. After him, the paresis spread over the entire right shoulder. The man lost the ability to move him. His right hand hung along his side. Strong muscle spasticity appeared.
– I went to the rheumatologist with it. Next was the neurologist. Around Easter 2014, I found out that the cause of my ailments (and my legs also started to drop out) was probably polyneuropathy, which is, fortunately, a treatable disease. At that time, I was still in hope. I exercised, tried to restore fitness to my weakening and disappearing muscles, believing that this sudden collapse would pass like a bad dream. After all, it cannot be that everything changes in one year. A strong, responsible guy becomes dependent on others. Because he cannot hold the fork in his hand, go downstairs alone, hammer the code into the intercom … Suddenly, mundane activities that you do not think about at all become impossible tasks. How is that? I can not do that? It’s so fucking simple! Who thinks at all by turning the knob on the door. And when I see a knob-shaped handle, I start to panic because my hands won’t turn anymore. Your muscles seem to be disconnected from the electricity. Your mind is full of good will, but your body says no. And although you are a mature guy, you have a family job, a flat with a loan and a thousand ordinary things to do – your body does it all. So on sleepless nights you keep asking yourself the same question “what’s next?” – says the man.
A few more months passed before Mariusz found out what was really wrong with him, i.e.Atrophic Lateral Sclerosis (ALS).
– When I heard the final diagnosis, I felt horror. Earlier, I had already read about SLA on the internet. However, I did not quite admit to myself that something like this might have come to me! I did not correspond to the book parameters. I was too young for SLA. I was leading a normal life. I did not expose myself to the toxins in my environment. I was not under permanent stress. I had a stable job, two wonderful girls at home – my wife and beloved only child, Neli. No one in my family had ALS. However, detailed research was under no illusions. I had to suppress any hope of a quick recovery. After all, I got a death sentence.
ALS or sclerosis lateralis amyotrophica is also known as amyotrophic lateral sclerosis. ALS is an incurable, neurodegenerative disease that leads to selective damage to the peripheral (lower) and central (upper) motor neurons.
This extremely rare disease affects 2 to 4 people out of 400 and mainly affects males 000-60 years of age, although there are cases at a much younger age. Although ALS was described as early as the 70th century, the cause of the disease and its etiology are still unknown. Until today, no effective drug has been invented that would allow to stop the disease completely, and conventional therapy allows you to extend your life by about 3 months.
It is generally accepted that ALS leads to death within 3-5 years of diagnosis. An effective way to stop it in certain cases may be stem cell transplantation, but the National Health Fund in Poland does not reimburse this costly therapy.
– When a terminal illness falls on you, everything that has happened in your life so far takes on a new dimension – says Mariusz. – You begin to understand, for example, that you underestimated what is worth appreciating, and you overestimated what was really unimportant.
– Some relationships break up as a result of a deadly disease of one of the partners. In my marriage it is quite the opposite. We got closer to each other. We missed out on many levels because we saw that some of our problems were “artificial”. When friends come to us and complain about various matters, my wife and I smile at each other discreetly. We already know.
– I think I’m on a section called acceptance right now. However, that doesn’t mean I stopped fighting. My greatest motivation is my eight-year-old daughter. Nelka helps me a lot every day. He drives across a busy road, punches a code into the card while shopping. She supports her on the stairs, opens the door … When I wonder how many days we really have left, paradoxically I pull myself together and I am glad that I can still look at her, hear her voice, watch a movie together or feed the seagulls by the sea. In sickness with the prospect of imminent death, you can either descend into despair or meet life as it is here and now. I am lucky because I am not alone in all this. I have a wife, a child, wonderful friends. I set myself small goals, small steps.
– After the first stem cell infusion in September, I noticed some improvement. Since it’s better now, what will happen after the last, seventh or eighth infusion? These are small victories and great joys that motivate me to leave the house with my daughter … Two weeks ago my friends took me to the last game of this season, the game of my beloved Arka Gdynia. It was cold, about one plus point, and I felt great. No sudden spasticity. I came home with fully charged batteries and I hope to be back at the stadium on my feet in the spring. Because that’s what my fight looks like. Tearing pieces of normalcy out of an ordinary, gray day.
– Maybe if I lived as I used to: a little thoughtlessly, in a treadmill, constantly projecting happiness, but for the future, I would die without knowing what the taste of life really is. Now I want to stay as efficient as possible as long as possible. Without being a burden to the family. Still no respirator, no bed. With the ability to breathe and speak independently. I can still tell my girlfriends – I love you. And it gets brighter in an instant. Such obviousness, and a person begins to understand them only when faced with an illness.
Mariusz needs about PLN 82 for the full stem cell infusion therapy at the clinic in Krakow, which is currently the only effective way to stop the progression of the disease. Funds are collected, among others, on the account of the Siepomaga foundation (www.siepomaga.pl/byc-z-corka)
When I ask him what he would most like to say to his daughter, he replies. – That she would always take care of herself and other people. She enjoyed every beautiful moment. She was a strong and proud Polish woman and she remembered that health and life are a gift. That her dad thinks so.