I will never forget that day after the disaster at Chernobyl on April 26 1986. We live in Bobruisk, a small town about 150 miles away, and I was visiting a nearby village with my four year-old daughter, Marina, (28 March 1982). Strange things were happening. The sky was a brilliant blue and cloudless. It was unusually hot, and the puddles were a very bright yellow, bubbling and foaming. I’d never seen anything like it.
We’d heard one of the reactors at Chernobyl had exploded but we were told it wasn’t too serious, and for most people like me life carried on. But then later we were told not to eat veal or beef or mushrooms, and not to drink the milk from a big canning factory near the nuclear plant. I’m still afraid to use that milk. And there were fears about the environment – in Belarus “the environment” always means radiation. I’d hear about women giving birth to children who developed strange deformities or cancer. I know some women who had one healthy child but after Chernobyl, were afraid to risk having another. These are still those fears today.
My son, Maxim, was born two years the explosion, a beautiful 8lb baby who grew into a friendly, popular little boy. But everything changed when he was seven years old. He’d often be breathless and his limbs wouldn’t work properly. When I pulled him up, his body would be rigid, so if I didn’t hold him he’d fall over. His face changed. He developed a tremor in his eye. And he changed too. I saw my lovely son become a different person. I thought: “Whatever happens, Maxim must not see me cry.” He never complained but you could see in his face that he was in pain a lot of the time. He became angry and frustrated and he closed in on himself. I wasn’t prepared for it. I had no idea about disabled children – in Belarus you don’t see disabled people in the street. I was so taken up with what was happening to Maxim that at the time I didn’t connect it with Chernobyl. But now I think the radiation must have caused it. No doctor has ever confirmed this though. They still don’t to this day.
In one year Maxim went from leading a normal life to being in a wheelchair. His friends didn’t come round any more but my daughters, Marina and Vera, were so good and they took him out in his wheelchair. It was worst for Vera, (1 Nov 1990] who is two years younger than Maxim and very close to him. I feel bad for her, because when it was her birthday we always seemed to be away at a hospital with Maxim, while his birthdays were real celebrations.
We spent four years in different hospitals. I found work as a cleaner in the daytime so that I could be with Maxim and sleep on the floor next to him at night. No one knew what was wrong. Some doctors said he’d have to stay in bed for the rest of his life, though I never believed that forecast. When we returned home I could see how depressed Maxim could become and I was always worried he might do something. Our apartment was on the ninth floor and I’d lock the balcony doors so he couldn’t throw himself off.
At night when he was asleep I’d stand on the balcony and cry and ask God for help. I thought: “Why me? Why Maxim?” Had I committed some sin? Then I thought: “No, I don’t think so.” But how could this happen to such a lovely child? In one way we were fortunate, because most husbands leave their families if there’s a disabled child, but mine, Ivan, stayed, even though all the money he earned as a labourer was going towards Maxim’s treatment.
I refused to give up. I’d ask everyone I met if they knew of anyone who might help. And then a visiting doctor from Tula in Russia suggested we try a children’s oncological hospital in Minsk, the capital of Belarus. So we went and we were lucky because we discovered we could stay in the SOS Children’s Village, right next to the hospital and very comfortable and the staff was very friendly. Maxim’s legs were operated on, first one, then the other, and then he had to do many strenuous exercises. He’d be sweating profusely and he’d cry and say he couldn’t do it, but he kept trying and never gave up. I was very proud of his willpower, his determination to live. Slowly he got better.
While Maxim was recovering my elder daughter Marina’s son, Vlad, was diagnosed with stomach cancer. Marina was two when the Chernobyl reactor exploded and we walked through those puddles foaming with bright yellow bubbles. Now we’ve heard that girls in particular were vulnerable to the radiation and that they might give birth to children with cancers and deformities. So for me Marina is a child of Chernobyl, and now so is Vlad. He was treated for his cancer at the same hospital in Minsk, but then he developed Hepatitis C through the blood transfusion, which is not good. Vlad is now 11 and he’s in remission, and when I’m not working I try to help Marina look after her three children, because her husband is a long-distance lorry driver and he’s away a lot. Maxim still lives with us. I’d like to see him married, and living more independently, but recently I’ve been worried about him. He seems very tired. He complains that his feet are hurting. I see the tic returning to his eye. And I pray the disease isn’t coming back.
Until I was seven I was just like most boys of my age. I climbed trees. I played football - I supported the London club Arsenal. But then, very suddenly, my legs didn’t work properly. They’d crumple beneath me. I couldn’t stand up straight and sometimes I couldn’t breathe properly. I thought I was dying and I was very afraid. I said to my mother: “What’s happening to me? There’s nothing wrong with my sister Vera. Why am I like this?” My mother took me to see many doctors but no one knew what was wrong. I just got worse, very quickly, and soon I was in a wheelchair.
My mother did everything for me. She was wonderful. Because my legs wouldn’t work, it was as if she were my legs. She helped get me to get out of bed, get dressed, everything. I couldn’t do anything without her. We became very close then. She was the most important person in my life. She still is. She was determined that I would get better. We went to many doctors, trying to find a treatment. But they said they had no idea what was wrong with me. One neurologist just said: “We can’t help you at all.” Was it my immune system? Was it because of Chernobyl? I don’t know, because nobody would say. But I’ve been told that 70% of the radioactive dust fell on Belarus. I’ve seen on TV what happened in Fukushima, and I wonder about the people there, the children who will be born in years to come. Will they be like me?
Eventually, when I’d been in a wheelchair for four years, the doctors suggested I should be officially labeled as disabled. Disability is a big stigma in Belarus, and I held out at first because it seemed so final, like a death sentence. But my mother was working very hard to pay for everything, and it meant that I would get 260,000 Belarusian rubles [60 euros a month] in disability benefit from the government. So I agreed.
Most disabled people in Belarus never leave their homes, but my mother and my sisters often took me out in my wheelchair, even though people would point at me and laugh. Marina and Vera sometimes took me to the river to swim, and I loved that. My mother bought me some goggles but one day someone stole them, which upset me a lot. Who could do that?
Sometimes I got very down and depressed. My mother was the only person who understood - it was as if she could see these black moods coming. She insisted I carry on with my schooling - she even made the teachers come to me – and she was always encouraging me to do more. I could see my sisters were a bit jealous, because I was taking up so much of our mother’s time and attention. She would invite my friends round, and give us tea and cake, but after a bit they’d run away leaving me feeling very alone.
I was 14 when someone suggested we try the hospital in Minsk. At first they said: “There is a certain operation we can try, but there is a chance it might make it worse.” My mother and I thought things couldn’t get any worse and that we should try it. Luckily I was just young enough to qualify for the SOS Children’s Village while I was receiving the treatment. And that made things so much easier for my mother – usually in hospitals she would have to sleep on the floor by my bed. And I made a new friend there – an orphan called Sasha.
The surgery seemed to work, and I made progress. I had to do a lot of very painful exercises over the next few weeks, but at last I began to walk again. Today I work as a computer technician in a school, earning 460,000 Belarusian rubles a month [110 euros]. My mother still pushes me. Sometimes she’ll scold me, saying I must try harder, and I know this is for my own good. My disease has made us very, very close. For me she is the best mother in the whole world. At the moment I have no plans to marry and leave home, for I cannot imagine my daily life without her.
Interview by Ann McFerran
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