Serious disease, disabilities can prevent one from arranging one’s personal life, yet they are not a critical factor in this matter. A few Kyrgyzstanis with health problems have proved it by having created good families.
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According to the Ministry of Labour and Social Development, in the last five years the number of persons with disabilities has increased by 16 per cent in Kyrgyzstan. And their number is rising every year. The agency said this is caused by the demographic increase, first of all. However, disabilities don’t prevent them from arranging their personal life and creating families and having children.
27-year-old Isabek Olzhobai uulu has a second category disability, he is blind. Now he has a wife, two children and works as a massage therapist in the policlinic No. 4 in Bishkek. The truth is that he had suffered a lot in his life.
He was born in Batken. In 2005, when he was 13 years old, he fell and hit his head hard, after that his vision began to deteriorate at once.
When he was 18, he started losing his vision. Doctors in Bishkek could not help him and in summer 2010, despite the June events in the south of Kyrgyzstan, he managed to go to Uzbekistan and had two surgeries here. For full rehabilitation he had to have one more surgery, but a man who helped him to get to Tashkent disappeared with all the savings his family had saved for his surgery. Thus, he lost his chances to have his vision restored and gradually he lost his vision completely.
He admitted he endured all the hardships thanks to his mother. But when she died two years later, Olzhobai uulu fell into depression. When he had a hard moment in his life, he found a real friend who helped him to get used to the new life.
“I’ve heard before that a blind guy lived in our village, but I didn’t pay attention because a man who can see has rather different interests and environment. But when I lost my vision, my relatives decided to introduce us to each other. It’s very important in your hard times to have support of a person who understands you well. He helped me to get used to my new life without vision, he gave me advices, taught me how to use a white cane, introduced me to other blind guys, among which I found my future wife,” the young man said.
His wife, Nazgul Zheenbekova, lost her vision when she was two years old, but it didn’t stop her from completing a course of medical massage in a medical college. Just like Olzhobai uulu, she was dreaming of having a family, children, a house.
However, we were pretty confident everything would be fine with us and we would help each other to become more independent. Nazgul cannot move around the town by herself, but she is the best housewife ever and she is a wise woman. I can go to town and run the errands, so our union was meant to be successful.
Back in 2014, when Nazgul and I got married, I was taking a course of medical massage. Now we have two children: the son is 4.5 years old, and the daughter is 2.5.
For the first three months after the son was born, my mother-in-law was taking care of him. Nazgul learned how to take care of a baby and then she started to take care of him by herself, but her mother helped her sometimes.
When our daughter was born two years later, my father-in-law suggested entrusting her to their care. They thought we could not cope with two children. But we were against it. I think no one can replace parents to children.
Moreover, we felt fear that children would take us as strangers if they lived in another family and it would be difficult for them to accept us with our disabilities. So we decided to nurture our children ourselves from birth and to learn how to take care of them.
I think children can feel their parents. For example, when my son couldn’t even speak, he didn’t behave capriciously when he wanted to eat or drink. He just directed my hand to some dishware and let me see he was hungry. My son has become a guide to me in the market since he was three. Now he helps his mother around the house. For example, he sorts clothes for laundry. Sometimes, he forgets we cannot see and tells me, “Dad, give me that toy, please.” I tell him, “Son, I can’t see.” And he says, “Oh, dad, I forgot, sorry.”
My daughter is 2.5 years old and she doesn’t understand the situation yet. Sometimes, she dresses up and says, “Mom, dad, look at me.” We can feel in her voice she is waiting for our compliment and we say, “Ata girl, you look great.”
We are trying to make them independent, responsible. They started kindergarten early, so they have no problems with communication; they are active, quiet, and sensitive kids. People often say my children look like me.
The optimistic voice of Isabek Olzhobai uulu doesn’t mean he is satisfied with everything, he just tries not to lose his heart. Since 2012, he had a few surgeries, but his family and responsibility before it helps him to overcome all hardships in life.
“I cannot lose my heart and let the disease win. I know 5-6 families in Kyrgyzstan, where both spouses are blind. They are trying to earn a living and bring up children. We may have disabilities, but we have a right to a happy life, just like healthy people do,” Olzhobai uulu said.
“Cerebral palsy didn’t stop me from becoming a mother”
Nazira Munduzova has a mild form of cerebral palsy and first category disability. She is 40 years old and she brings up a daughter alone, takes care of her old mother and has a dream to learn to operate a helicopter.
She was born and grew up in Issyk Kul region. She thinks her disease was caused by negligence of medical workers during labour. Because of mild contractions, doctors literally pushed the baby out of the uterus and hypoxia occurred to the child. The parents were warned that the child would remain disabled for life and advised of leaving the child to a children’s home. But they refused to and used their best efforts to let their daughter develop.
She made her first step when she was three years old, when her peers were already able to run.
“The problems could be foreseen and the birth trauma could be avoided, but medicine was different back in those days. I am grateful to my mother in my life. She was working with me 24/7 and always performed special procedures, massage to me. I learned to walk thanks to her, albeit late,” Munduzova said.
Despite the disability, Nazira’s mental capacity was not damaged. She learned to read very early, and was one of the best pupils in school. She said cerebral palsy didn’t influence her social skills because her parents tried to bring her up as a strong personality and without complexes.
After leaving school, she was admitted to the financial college and graduated from it with honours. Nazira had been working for many years in the State Registration Service and successfully moving up the career ladder, but over a year ago she was dismissed from her job. Now she is a distance student of the Razzakov Kyrgyz State Technical University and the Equal Opportunities Centre and she is looking for a job.
However, the girl cannot have a family. Many years ago she met a young man. First, they talked over the phone, and then started dating. When he decided to marry her, his parents were against it. But the girl was so friendly and sociable that she managed to overcome this barrier in relations with them.
Labour migration destroys many families and mine wasn’t an exception. I don’t think the reason was my disease because he did marry me despite my health condition. Moreover, we had a daughter. My pregnancy was very difficult, but I gave birth to a healthy daughter and it was very important to me.
Now Munduzova lives with her old mother and daughter. They are her key support. She cannot think of a case when her disability would have stopped her from doing the things she wanted to do. She became a mother, is popular with men, has a hobby. Now she is shooting photos and videos on her phone and posts them on the internet.
“Why wasting time instead of being happy?”
33-year-old Chyngyz Childebaev has first category disability. A few years ago he had a renal transplantation and had a clinical death. It changed his attitude to life for ever.
According to him, he didn’t suspect he had any kidney problems for a long time and the disease didn’t manifest itself. In 2008, medical test results showed he had problems, but the young man felt himself absolutely healthy and didn’t pay attention to that. He just had a course of injections and forgot about the disease.
In 2009, his health deteriorated sharply. After the examination, doctors diagnosed him with class 4 glomerulonephritis and only renal transplantation could save his life. But Childebaev underestimated the risk and turned to sorcerers. After their “treatment” he felt even worse.
After three years of renal dialysis, his family managed to save money for renal transplantation and his mother, Fatima Karagulova, decided to become a donor. They applied to the clinics of China and Russia, but every time something went wrong. After they applied for the third time, they had a hope: in 2012, Belarusian doctors agreed to perform a few surgeries in Bishkek and Childebaev was included into the programme. But at the last moment, he was diagnosed with hepatitis C and was excluded from the list.
After a long-term treatment of liver, Belarusian doctors managed to perform surgery in January 2013. He considers this moment as his second birth.
Now that I recall all the failed attempts to perform surgery in China, or Russia, I know that it was God who was preserving me from death. He directed me to the Dzhal hospital, to this very anaesthesiologist so that he could neutralise the allergic response in time and save me from death. I think it’s God that gave me second life.
All this time, the young man was suffering drama in his personal life. He was desperately struggling for life, although he didn’t know what his life would be and if he would find a soul mate. His fear and lack of confidence were increased by his previous failed relations.
When I was denied the surgery in Bishkek because of hepatitis, I started to panic. I had a girlfriend at that period. At one point, it was her support that played a crucial role and I again believed I would be cured. Our relations were already serious when she left me.
When her parents learned about my situation, they persuaded her from dating me. They said, “You don’t need this guy, he’ll die soon.” When I was struggling for my life, people already thought I was going to die. This was a wicked blow: the one who supported me in my hardest times left me in my hard moment.
In 2015, I met Nursuluu in social media. We were sending each other messages for five days and dated on the sixth day. We walked, talked and I told her my story.
On the second day, we met again in the morning and I popped the question at once. She agreed and I called my mom and told her I would bring my fiancée home. All my relatives were surprised.
It was a quick decision because of my previous experiences. I knew that man and woman get to know each other only during their life together. You can be dating for a few years, but you’ll never see the real face of your partner. Then why wasting time on dating if you get to know her only when she becomes your wife?
Nursuluu was shocked and carried away with such determination of the young man.
I liked him at once for his determination and the depth of his assessment. When he proposed to me, I was shocked. I had to prepare myself, psych up, tell my parents, but Chyngyz said, “Now or never.” So, I made my choice.
At first, my parents were shocked when they learned about my choice, and my sister criticised me and called me irresponsible. But now I understand it was the most correct decision in my life.
Now the couple has two children. Nursuluu is sitting at home with children, and Chyngyz attends training to start a new work. They have quarrels just like all other families, but the spouses have agreed not to take offence at each other for more than one day. This rule works for them.
Despite the visibly healthy look, Childebaev said he still felt the consequences of the disease and thanked his wife for her support and confidence she gives to him.
“I get tired very quickly, so I don’t do heavy physical activity. When I overwork, I have short memory lapses. I remember I got very tired when we just created our family and I went to bed, and when I woke up I couldn’t recall the name of my wife. She was aware of my health issues, but still she was scared. Now she understands me and helps me in everything, she takes most care of our children,” he said.
This article was prepared as part of the Giving Voice, Driving Change – from the Borderland to the Steppes Project.