Translated material
About sister Nastya
09–13.09.2013
The New Times continues to follow the story of a man who received a terminal diagnosis*
| * Continued. Beginning at # 37 , 38 , 39 , 40 , 41 , 42 , 43-44 for 2012, , 2 , 3 , , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 1 4 -15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 25 , 26 , 27 for 2013 ** Genetic , 28 , disease resulting in muscle wasting. She chains a man to a wheelchair. |
"If you want to be happy, be happy." I formulated this today under a dropper. Then I thought that it was impossible to be the first to formulate such a thing, and quickly became convinced that a certain K. Prutkov, independently of me, came to the same conclusions. But it is not important. Because I finally have some good news after all the darkness.
The main good news is my sister. She was fully checked, she is the perfect donor! Nastya told me another great news during this visit: “I read about the prospect of clinical trials for my muscular dystrophy **, maybe in five years they will try to treat it: for the first time, one promising idea has appeared in this area.” First. No… you still won’t be able to appreciate how it is for the FIRST TIME in a scientific publication to read that there is an idea and that research is underway. It is scientists who can create miracles in our world.
And how Nastya drives around Manhattan in a rented electric wheelchair! For the first time, she is using a joystick control: in Russia, such a stroller is absolutely useless, because there is not a single sidewalk along which she could drive. And here I mark points on the city map for her: “I haven’t been to the cinema for a hundred years; I need a bookstore; advise which theater to go to. A person sitting within four walls moves without anyone's help. My brother, who dragged her stroller around Moscow, is now busy with me. When we walk down the street, Nastya goes far ahead - now we are catching up with her. We are now handicapped.
I tell her that I have now sent proposals on infrastructure for people with limited mobility in the capital through the City Projects to the Moscow Department of Transport. Nastya immediately says: “Recommend me to them as a tester. There will be at least one person who cares.” And now I'm sitting on a drip in the hospital and while away the time in a pleasant way: finalizing recommendations for Moscow, taking into account the experience of New York's infrastructure. We should try to free people like my sister from their apartment prisons. This will also free up for the economy those who are now caring for such patients. It will be no worse than destroying slavery.
And I'm happy because I'm busy. It's not a remission yet, but it's not that important. The philosophy of the right thing is more important: it gives the right attitude to life, which will ensure remission.