The listeners know Katarzyna Szymańska Borginon as an excellent journalist, a longtime correspondent from Brussels. Meanwhile, for over 20 years she has been struggling with her husband, Steven’s disease, on a daily basis. No wonder, then, that he knows almost everything about multiple sclerosis, as about the European Union …
– How did you meet?
– In 1989 I left for a journalistic internship in Brussels. Classes were held in a building across from where Steven was working. It happened that in the middle of the night only our lamps were lit in front of each other.
– Romantic.
– The wedding was also romantic. As we wanted to avoid long formalities, we used the proposal of the Lithuanian Minister of Foreign Affairs, Algirdas Saudargas, who offered to arrange a wedding in Vilnius immediately. Lithuania had just declared independence, but the trip to Vilnius still seemed to us to be a small thing compared to the bureaucracy. The road led through Leningrad, then on a fifth-class local train to Minsk, and from there to Vilnius. During the trip that lasted three days, Steven could not say anything, so that it would not appear that he was from Western Europe. Another surprise awaited Vilnius. According to local regulations, a civil marriage should be held first. Meanwhile, we wanted to stand in front of the altar first. For this to be possible, it was necessary to reach Paberža to father Stanisław Dobrowolskis, a dissident, Kapucin, who lived in forests near Vilnius. We took a taxi. An incredible road, tanks on the streets of Vilnius. There were problems with fuel, and there was a permanent blockade of supplies. The gas in the car could explode at any moment. The witnesses were the minister’s secretary and the taxi driver, because no one else was with us. I was wearing a coat and trousers, just like during the whole trip.
– Beautiful reportage wedding. Do you remember the first symptoms of Steven’s disease?
– It was less than a year after the wedding. While driving, Steven began to have vision problems. He saw twice. He left the car because he was afraid to cause an accident, he called me, went to an ophthalmologist as soon as possible.
– How was the diagnosis made?
“By chance” the doctor left his medical history on his desk and left giving Steven time to go over the file. Today I think he couldn’t, maybe he was afraid to talk to him.
– How did you get the information?
– I was shocked. I had problems with memory and remembering phone numbers. Steven’s mom said I could leave, they would take care of Steven. They wanted well, and I felt as if someone had punched me in the face. Leave Steven? Never!!! It is good, however, that the diagnosis was made right after the wedding, in the phase of falling in love, it was easier to be optimistic, it was easier to say that we would manage.
– It was a long time ago. You’ve made it, you have a home, a baby. Although it was not easy, the disease progressed ..
– It was a difficult time. I worked a lot, preparations for Poland’s accession to the European Union were underway. I was one of the few correspondents present in Brussels at the time. It was not an ordinary reporter’s job, but a kind of vocation. I felt that a story was being created, that I was a witness to it, a participant. And, in fact, my job also became my escape from what was happening at home, from thinking about Steven’s illness. It was only when the accession became a fact that I wrote the book “In pajamas to Europe” out of rush and I felt that there was a void. That something is missing, something is missing in my life.
– And then the thought of the baby appeared.
– Yes, I didn’t feel the need before, there was work, there was Steven.
– But time, time passed, not only the woman’s time.
“It’s true that Steven’s disease made medical treatment necessary for conception.” We went to the fertility clinic every few weeks. Until it finally worked. Stasia, our daughter is named after her father Stanisław, who gave us the wedding.
– You were not afraid of this effort? You have two people at home who need care, Steven in a wheelchair, who is already considerably disabled, a small child and a job that requires a lot of commitment.
– It is certainly not easy, but in Belgium you can use a babysitter who takes care of a disabled person. Besides, Stasia changed our lives. MS is like a force that pulls you down constantly. It can only get worse. And the child has become the second force that pulls us up …
– I remember Steven’s room, well equipped for ON with a fitted bathroom next door. You did it in the garage place. It is easier to be ill with MS in Belgium than in Poland.
– It’s true, but there are other problems. In October 2010, we went to Paris for a few days, to visit the Louvre and a tour of Disneyland. A month later, the ambulance service took Steven to the hospital as he was choking. He had severe bilateral pneumonia. There are terrible traffic jams in Brussels, so I didn’t get there until after an hour. All this time, Steven was in an oxygen mask, and the doctors took no action, even though he was still choking. In Belgium, euthanasia is allowed. So I was waited to make my decision. And – the first thing I heard upon arrival was: do I want Steven to be alive ?! ….
-In Poland, you would not hear the question, because Steven would be dead, probably he would not have been saved in time.
“I realize it, but there was no information in Steven’s papers that he would not consent to saving lives!” Besides, how can I even ask if I want my husband alive ?! Only after my intervention, treatment was started, Steven was put into a pharmacological coma, and a respirator was connected. Then I was asked this question again as the doctors tried to disconnect the ventilator. Steven was unable to breathe on his own. People were asked all the time if I knew that they had to do a tracheotomy, which means that it will be completely dependent on me, if I know that it will require nursing care, enormous effort. After all, I’ve been living with someone with MS for 20 years!
– Are you afraid that Steven will die one day? He had already undergone severe treatment for bedsores, pneumonia, and was in a pharmacological coma for 3 months.
– I’m afraid. At one point, I even had to talk to Stasia. She started crying hysterically, so I finally explained that the doctors would do anything. She calmed down. But there is still fear within me. What am I going to do without it ?! I need him. It’s not true that only he needs me. I can’t live without it. I am losing the meaning of existence.
She talked »: Iza Czarnecka
The materials of the quarterly magazine for people interested in multiple sclerosis, “Positive Impuls”, www.pozytywnyimpuls.pl were used in the preparation of the interview.
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