Tetraplegia in Turkmenistan: A 22 Year Personal Account

My name is Gurdov Yaz-Murat Byashimovich. I was born in June, 1982, in Ashgabat, Turkmen SSR. I am a citizen of Turkmenistan, born and raised here in Ashgabat. I am now 43 years old (in various letters I wrote different ages, because I applied to foundations at different times).

I played sports, did well in school, and graduated. After school, in 1999, I went to study in the Russian Federation, entering a university in Krasnodar at the Faculty of Law, majoring in Jurisprudence. I studied quite well, continued playing sports, didn't drink, and didn't smoke. I had friends and a girlfriend whom I dated for about a year. I lived an ordinary life, made plans, and was finishing my studies.

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On April 26, 2004, during my final year of study, my friends and I went to a sports stadium in the evening to work out on the horizontal bars. During a complex element - a somersault, a flip on the bar - I slipped and fell. I hit my head hard and broke my neck.

The fall was so severe that I lost consciousness and woke up only on the second day in intensive care. At that time, I was a student from Turkmenistan, and the Russian hospital was in no hurry to operate on me. The surgery was performed only two weeks after the fall, and time is crucial for spinal injuries. During this time, the damage became severe. I underwent two surgeries at the 1st Krasnodar Regional Hospital. I stayed in the hospital for six months. In October 2004, my sister and brother-in-law took me home to Ashgabat.

Primary diagnosis: Severe concomitant injury. Complicated fracture-dislocation of the C5 vertebra. Severe spinal cord contusion. In April 2004, as a result of the trauma, a fracture of the cervical spine with displacement occurred, which led to compression and severe damage to the spinal cord. Two complex surgeries were performed to decompress (free) the spinal cord and fix the vertebrae with metal structures and a bone graft.

Tetraplegia: Complete absence of active movements in all four limbs.

Pelvic organ dysfunction: Inability to urinate independently (neurogenic bladder, use of a catheter).

Muscle atrophy: Pronounced wasting of the muscle tissue in the limbs.

Spinal shock and its consequences: Loss of all types of sensation below the level of injury (from the level of C5 - C6 segments).

Concomitant complications: Chronic cystopyelonephritis (inflammation of the kidneys and bladder) and a tendency to form bedsores.

Summary for organizations: The patient is a disabled person with a complete loss of motor activity (paralysis of arms and legs) and pelvic organ functions due to critical damage to the spinal cord in the cervical region. The condition requires constant external care, medical observation, and regular rehabilitation.

Since then, I have had total paralysis of all four limbs - quadriplegia, tetraplegic paralysis. I am completely paralyzed from the neck down. I can feel and move my neck slightly, but I cannot move my shoulders, arms, legs, or body. I have been living with a Group 1 disability for over 22 years. I am a prisoner of my own body.

Right after the fall and the hospital, my girlfriend, whom I had been dating for a year, found another man and left me a few months later. It was very hard. I felt betrayed.

Then my father started drinking heavily, fell into depression, and died. My older biological sister called me a complete invalid, a useless creature, betrayed me, and left the family. I haven't seen or heard from her in over 15 years. Friends, relatives, and acquaintances gradually disappeared, stopped calling and visiting. Time erased all connections. I was left alone.

Out of my entire family, only my mother and two sisters remained by my side. My mother is 73 - 75 years old, she is a pensioner. My sisters are 43 - 50 years old. The older sister has a 9-year-old daughter. Only two of my sisters work: one is a gynecologist in a clinic, the other is a teacher. Their salary is about 110 dollars a month. My mother and I receive a pension of about 30 dollars. This money is catastrophically insufficient.

Over 20 years of illness, we have spent and exhausted all our resources, sold jewelry and belongings, and took out a loan for treatment, which we still cannot repay. All the money goes toward medicines and dressing materials. Sometimes neighbors bring food on holidays. No one has helped with money or medications.

I applied to foundations in America, Germany, and Russia, to the "Predanie" foundation, wrote to Beth Eisenbud, but received no help.

Long-term paralysis led to muscle atrophy and dystrophy. I have type 2 diabetes, asthma, frequent inflammations, and chronic infections. My wounds hardly heal.

I had three fistulas - one healed, but two have remained for 8 - 11 years: one at the bottom of the anus, the other higher up. They get inflamed, bleed, and fester. I have bedsores on my buttocks, shoulders, and knees, ulcers that have turned into open, purulent wounds. I had a phlegmon on my foot.

We treat the wounds 4 times a day: hydrogen peroxide, iodine, furacilin, alcohol spray, ointments, sterile bandages, adhesive plaster. We use anal suppositories. I constantly take antibiotics and vitamins. I take antidiabetic pills, follow a diet, and do not eat sweets. All of this is very expensive.

I live on the 4th floor of an old building without an elevator or ramps. The stairs are narrow. To bring me down or carry me up requires four strong men. I only have my mother and two sisters; they cannot lift me.

I have a wheelchair, but I cannot sit in it without being secured. I have to be tied down with belts and bandages. I only sit for a couple of hours a day - to eat and go online. The rest of the time I lie on an old mattress, turning only on my right and left sides.

I haven't left my room in 22 years. I have never been to rehabilitation centers. I haven't received any treatment other than medications at my own expense. I haven't seen or heard from Turkmen social services.

After the injury, my girlfriend leaving, my father's death, my sister's betrayal, and my friends disappearing, I grieved, wanted to die, and sought death. I felt like a ghost, lifeless. I drank. I had 4 suicide attempts. I tried to meet people online, to find a friend or a girlfriend, but with my disability, no one wanted to be friends or build a relationship. I was left alone in my room, existing in isolation for over 22 years.

My story is before and after. Today I have a kind of anniversary: 22 years since I broke and became paralyzed. I have complete paralysis, my arms and legs do not move. Before that, for 22 years I lived a full, fully functional, healthy life: I ran, jumped, was useful, and actively played sports. Those are my first 22 years. And for the second 22 years, I am completely paralyzed, motionless. I am inactive, defective, and non-functional; only my head works.

Over these 22 years, I rarely sought help and support. Except perhaps in critical moments, when it was scary, when panic set in that I would die and things would get worse. I tried to look for sponsors, patrons, investors, charitable foundations, organizations, and institutions that would help me get surgery, undergo treatment, rehabilitation, and now at least help with medications. But alas. Over the course of 20 years, I sought passive help very rarely, maybe 15 - 20 times, perhaps when my bedsores turned into a phlegmon and the wounds festered, and fistulas appeared. They had to be cut, opened, the pus pulled out, cleaned, and washed. All this was done at home, because there was no money, I had no trusted doctors, and there was no way to carry me downstairs, take me somewhere, and then bring me back and keep me there. To maintain me, two or three people need to be around at all times: my mother and two sisters. They have always done this and still do.

It was exactly in these moments of fear that I would look for help for maybe a week, but I always failed; no one responded. Everyone ignored it as always, no one replied, no one tried to help, no one answered letters and requests. I lived like this for 20 years, trying everything myself, coping with everything. I worked on myself, but alas, after 20 years of paralysis, I developed type 2 diabetes, and then very major complications began. All my bedsores, former phlegmons, and fistulas that I had started to fester and grow, and my body began to die off. I panicked; it was very scary.

For the last two years out of these 22, I have been desperately and furiously looking for help. I reached out to charitable foundations and wealthy people. I wrote to 500 foundations in America, 400 foundations in Germany, 200 foundations in Russia, 400 international charitable organizations, and about 200 rich, famous people: singers, billionaires from Forbes. I applied to international charitable organizations, funds, trusts, banks. During this time, I wrote and personally sent more than one and a half thousand applications, but received almost no replies. About 80 percent simply ignore my letters. Roughly 10 percent reply with a refusal because they only help people in their own country. The remaining 10 percent direct me to other charitable foundations, which, in turn, send me to yet other foundations again. So the help goes in circles between organizations, but it almost never reaches people, and no one provides real financial support. In the end, I realized that the majority simply do not care about my condition. Either my age isn't right, or my nationality didn't please them, maybe the illness isn't complex enough, or the region didn't suit them.

I have almost resigned myself to this. Now I am no longer looking for major help; I've given up, as they say. Disappointment, unfulfilled expectations, and, of course, pain and resentment. I thought I was different, I believed that my illness and my suffering were the most unique, that I had some kind of special case. It turned out nobody cares. There is no uniqueness in me or my situation. Just another sick disabled person out of many hundreds of thousands, millions around the world.

The only thing is, I am ashamed before the children. Children who haven't seen life, who don't know what a first kiss, football, running, or the sea is. How ashamed I am before them when I asked for help from charitable foundations and organizations that help the disabled. At that time, it hurt me to ask for money that could have helped children. But the fear of death, and that I would rot alive, that my arms and legs would fall off - is very terrifying. I pushed my conscience aside, although I felt guilty. I continued looking for help, but in the end, it all came to zero, nobody helped me with anything. I just went cold.

That's it, I realized that mercy, sympathy, compassion are empty words with no strength or meaning behind them. And good is just a candy wrapper without filling, which evil people forced us to believe in so that only others would do good. Good is also an empty word, there is no good in people. Over 22 years, I reached out to girls on many dating sites to chat, to meet - everyone avoided me. Apparently, the same story as with the foundations: either the illness is wrong, or the country is wrong. I tried to communicate in communities, but there are only evil people there: they either ignore you or gloat. They asked how I type. I had to explain to everyone that I type with a Chinese chopstick. No one understood, no one believed, and I had to prove it to everyone all over again. I thought that people with chronic diseases - oncology, cancer, paralysis - are kinder and more merciful to people like them. But I was deeply mistaken. Empathy is also just a fake.

People are ruled by self-interest, profit, greed, avarice, stinginess, and pride. Acting, hypocrisy, falsehood, and lies. Believe me, I know what I'm talking about. Over these 22 years, I have conducted many experiments on myself, on my body, consciousness, hearing, and vision. And I also observed the communication of people - sick and healthy. How the healthy treat the disabled and how the disabled treat the healthy. It's just a nightmare. Everything is the same, there is no difference. Everyone is looking for comfort, profit, and their own well-being. Nobody cares about everything else. I understood the true essence and the true meaning of the genius words: do not trust, do not fear, do not beg. I almost wrote a book and froze everything because I saw no prospect that it would be interesting to anyone and that it could be published.

Now I continue to rot, my wounds constantly torment me, bleed, fester, and die off. And in a fit of fear of death, I sometimes panic and, under the influence of fear, try to write to someone and ask for help. I just stupidly beg for alms and handouts, as much as anyone can give. I write: if you give 10 dollars - good, if you give 100 dollars - that will be super. For you, 100 dollars is a glass of wine, but for me, it is almost a month of life, it is two and a half of my pensions. With this money, I can live for a month, buying myself all the medicines. But in response, there is usually silence and being ignored. Nobody cares, especially about an old man. In a couple of months, I will turn 44, and my whole story is 22 years before and 22 years after. Such is my fate.

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