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They have a cure for hardening, they lack the absurdities of everyday life. Lovers in wheelchairs were thrown out of the city bus in Włocławek. They had to start a rabble to make the absurd disappear.
Fall 2014. Włocławek. The city bus drives into the bay. At the bus stop, a couple in wheelchairs are already impatient. Joanna and Zbyszek, both with multiple sclerosis, rush to the clinic. The man with a skilled movement of his hand drives his electric wheelchair to the door. Joanna, his partner, has been struggling with distortions longer. Maybe it’s the fault of weakening wrists? They wait for the driver to come out and remove the platform. However, this time it does not.
– You cannot go. The regulations prohibit transporting passengers on electric wheelchairs – he explains dryly.
After a while, the bus departs and a pair of unwanted passengers are left alone at the stop.
– I saw how it boiled in Zbyszek – Joanna reports.
– What’s that supposed to mean? What were we at fault in that we were treated like this? I thought, resentfully.
They did not make it to the scheduled and long-awaited visit to the doctor. Lost.
Before it comes
Several months have passed since the situation at the bus stop.
– But it still hurts. Then I felt powerless. Every day we struggle with an incurable disease. We try not to be a burden for our loved ones. And there may come a time when we will not do the simplest without them, he admits.
Joasia and Zbyszek live in an old tower block in a block of flats in Włocławek. The place is very modest, but you can see a new wallpaper in the living room.
– My father and son have renovated us. Pensions barely make ends meet, the woman admits.
He keeps household bills and cooks. She cleans.
– We complement each other. For example, I take them out of the higher shelves and the refrigerator, because Zbyszek will not raise his hands. And he is cooking. He unscrews the jars because I have weak wrists, Joanna explains.
And the disease?
– Four years ago I regained power in my right hand. It is getting more efficient – Zbyszek is happy.
According to Joanna, her hardening is progressing, but somewhat slower.
– We feel safer together – they argue.
From the window of a small room you can see the school playground. However, Zbyszek cannot see him from the height of the cart. Joanna goes to the kitchen to get a glass, treading uneasily. A year ago, she walked better.
– We live for today and love helps us. It is a drug that can be taken freely. For this there are no side effects – Joasia laughs, looking tenderly at her man.
Hunk in a wheelchair
Joanna met Zbyszek six years ago. Even though the woman has memory problems, this day is clearly in her mind. Actually, the evening, when friends said goodbye to Zbyszek after a treatment stay for patients with multiple sclerosis in Dąbek. She came for treatment from Włocławek, he from Stare Babice near Warsaw.
– He was wearing a white shirt and matching light pants. He was sitting in that wheelchair of his. He looked very handsome, says a woman who is herself a tall, 44-year-old blonde with dark eyes.
At her words, Zbyszek turns around in his wheelchair, confused. He rubs his face with tired hands. She is 47, but looks older.
– We looked at each other all evening, and then Zbyszek invited me to his room and we talked. The next day he left – recalls the woman.
Four hours
The story is interrupted by the phone. The man picks up and confirms an appointment.
– They will come. They will bathe me – he explains to his partner.
Although he does not come from Włocławek, he has found many kind people who help him with his daily activities.
A month after the first meeting, Zbyszek came from Warsaw to Joanna.
– A friend put me on a bus. Hatch trolley. One of the passengers picked me up at the train station in Włocławek. I asked – you just have to ask. One will refuse, another will help – he shrugs his shoulders.
– I took Zbyszek to the pizzeria. They had great dumplings there – says Joanna.
A four-hour stay in Włocławek paid for her partner with treatment.
– Six weeks and three days in the hospital – she lists.
While carrying him on the bus, his breastbone broke.
– I felt no pain. Only the next day, when I fell out of bed. I couldn’t move and my chest was tearing apart – she recalls.
You are stupid?
Zbyszek’s health problems have already appeared in the army. He began to double-see, sometimes he joined nystagmus, pulling with his right leg.
– I went to the doctor, but he kicked me out the door and the symptoms disappeared after a few days – he recalls.
He returned from the army to Stare Babice and installed power grids on poles, he ran a construction company.
– We had a lot of orders on construction sites. There was no shortage of money. Alcohol too. I was leading a lush life. And then, when there was less strength, I became an upholsterer.
– In 1995 I was hospitalized. They diagnosed me. SM. A buddy came to pick me up. He asked what was wrong with me? On the discharge card I read to him: sclerosis disseminata. The friend looked at me and said: What? Are you just stupid? I shrugged my shoulders because I didn’t know what the disease was – admits Zbyszek.
The man gradually lost the use of his limbs. First in one leg, then in the other. In 2000, he sat on a wheelchair and now only uses wheels.
– And in the same year, on my thirtieth birthday, I got a letter with the test results. Confirmation that I have multiple sclerosis, Joanna interjects.
Someday I’ll tell the kids
In Joasia, the disease appeared when she was seventeen. She went to the wedding with her parents. In the morning, after the party, she woke up and, terrified, announced to her mother: I can’t see with one eye!
Doctors did not say for a long time what was wrong with her. They only advised:
– Study hard, girl. Finish the high school.
After finishing vocational training, she did not take up a job, she went on a pension. And then she gave birth to a daughter and a son.
“Fourteen years ago,” he says.
– What are you? After all, your son is already studying – Zbyszek corrects her.
Joanna wonders:
– Well, yes … I was a single mother, but it was my parents who raised the children. I owe them a lot.
As the children were growing up, the woman stayed in hospitals most of the time. After the birth of her first son, she was taken to a psychiatric ward. Diagnosis: postpartum psychosis.
“Women with MS handle pregnancy and childbirth well,” Joanna says, “but then there’s a problem.” They cannot cope with upbringing. That’s why I believe they shouldn’t have children. Mine may one day understand why I wasn’t a good mother. Maybe I’ll explain it to them someday?
She becomes sad and suddenly, as if she remembered something, a smile blooms on her face: – Now I’m trying to be a cheerful person. My pillar is faith. I pray, but not to God or Jesus. I’m talking to my grandmother. I remembered her from my childhood as a person I could always count on. Now, too. Only she’s in heaven.
Joanna, when she was still walking well, visited Zbyszek in Warsaw. She went to him on Valentine’s Day. They had a candlelight dinner. She gave Zbyszek a sign saying: Don’t try to understand me. Just love it.
Zbyszek reciprocated with a visit in April this year. He was supposed to stay for a few days. However, they made a decision that they would not part anymore.
– My relatives were against him to stay – admits Joanna. – Not only them. Recently, a woman accosted me. She asked why I was taking such a hump on my back: crippled. And the relationship with Zbyszek is my best decision in life. I even think some people have gained respect for me. They admire me for what I have done.
– It is indescribable to be able to wake up in the morning next to a loved one – says Zbyszek. – Even if we may not get up from this bed the next day due to illness. I wouldn’t even trade this love for health anymore. Because loneliness is the worst. Loneliness is inhuman.
Strength in two
Joanna puts on Zbyszek a sweatshirt. They get together to see a doctor. They leave the apartment. Zbyszek enters the old, creaky elevator in the block of flats, Joanna can hardly fit next to it. They stop on the ground floor. They are separated by a few steps from the exit.
– I stand on the first floor and accost those leaving the elevator, and Joanna those in front of the block. We’re waiting for someone to get me out. Sometimes it is impossible to ask anyone. We were in a cooperative. We left them the design of the driveway, we are waiting for a decision – says Zbyszek.
Their electric carts stand in the shelter of the block vestibule. The transfer of Zbyszek from a wheelchair to a wheelchair is a series of complex movements, pull-ups perfected. Soon they are on the sidewalk side by side.
– Children most often look after us – Joanna laughs.
– Especially when we hold hands.
The couple glides towards the bus stop.
– I couldn’t believe such an absurdity – says Zbyszek. – That we weren’t allowed on the bus. I felt discriminated against. Why am I denied the right to travel by city bus? Because I am disabled?
They publicized the matter in the media. Journalists began calling.
– They supported me. After all, there are thousands of people like me and Joasia in Poland!
The magistrate realized that this was no joke. They admitted that they had made a mistake. They explained that when specifying the regulations on the transport of passengers, electric carts were deleted.
– It was supposed to be precise, but it turned out clumsily – concludes Zbyszek.
The bus is coming. The couple are getting ready to drive in.
– It’s good that Zbyszek did not let go. I would not have had the courage to fight – admits Joanna.
And her partner adds: – Once, a friend and I drove through the center of Warsaw in wheelchairs. Aleje Jerozolimskie, under the palm tree, and then the Poniatowski Bridge. Passers-by pushed us onto the road, and the drivers cursed us. How are we supposed to move? Fly? Absurdities still surround us.
Tekst: Great Joanna