Nikolay

In theory, it's very easy to talk about yourself. After all, you don't know anyone else so intimately or know so much about them as you do yourself. Nevertheless, it can be incredibly difficult to talk about oneself too. Opening up requires courage because, while it can be cathartic, it can also cause pain. We are hugely grateful to the heroes of this project for opening up to us and thus are respecting Nikolay's wish to remain anonymous.

Nikolay lives in a small town in Central Russia. His work is at the intersection of testing and programming. When Nikolay was 14, doctors diagnosed him with a very rare disease: diabetes insipidus. It turned out that he had a damaged pituitary gland and his body was producing and processing some of his hormones improperly. Why this happens is not entirely clear. Maybe it is due to an accidental trauma during his kindergarten days, or perhaps the abnormality results from genetic changes.

Nikolay's vision began to decline rapidly in school. By the 11th grade, it had deteriorated to a very serious degree, and continues to deteriorate still. He experiences constant hypoglycemia (lack of sugar), fatigue, confusion and hand tremors. All of these symptoms can appear suddenly and at inopportune moments, when he forgets to drink sweet tea or eat a candy bar.

"While I was at university, in order to receive free medication, I was assigned group III disability. Now I no longer have a formal disability, but my condition has not changed significantly. I need to take pills constantly and always have to monitor my health," says Nikolay.

Nikolay is passionate about computer programming. He hopes that one day he will be able to code his own game. For now, he only has time for work. Additional responsibility has added to his life in the last years – he has even more to do ever since his long-awaited child was born.

What Nikolay can never resist, even as a young father, is a good book. He devours them in just a couple of days, then approaches the bookshelf to select a new amazing story. His favorite genres are science fiction set in space and fantasy. If Nikolay ever creates his own game, the plot will surely be drawn from those genres.

"If something isn’t easy, you will always appreciate it more," says Nikolay. “I think people with disabilities are often more determined. In some ways, they are tougher. They often have to make an extra effort. At least, this is what many of the people I’ve met are like.”