August 2015, Lugansk. Terrible heat, we’re carrying diapers and walking down a snow-white hospital corridor with covers over our feet. There is the tiny and beautiful Kirill in on a plastic bed in a room. Newly born, abandoned by his other. The ward lacks the necessary diapers. They asked us for help–we came.
Winter 2015. A call–there is a need for special formula for prematurely born babies. In a Lugansk hospital. Also diapers of the smallest size possible. Those which the ward does have are huge, the kids are lost in them. They have no other kind, and they are running out. The boy was prematurely born, an orphan, abandoned.
His name is Kirill.
When I was a teen, I thought I’d become an actress. I used to visit a theater studio and saw myself garner applause and tons of flowers and presents. Then I started to study philosophy, thinking theater and movies won’t go anywhere. Did I ever think, even for a second, I’d be writing about people with development difficulties? That I will collect money for them and buy scissors, glue, and gouache? Not literally, of course, but figuratively.
Not for a second. Such people did not exist in my life and I knew nothing of them. Not because I did not want to know, but because it didn’t happen that way. My life flowed in a different direction.
The first meeting took place during the winter of ’15, when I stood in the Krasnodon children’s home with candy packets and, sweating, tried to sort them into caramel- and jam-filled ones. It turned out many could not be served hard candy because they’d choke. We were brought to a children’s home but were not told of what kind. I thought it’s simply an orphanage. I was taken into a room with “difficult cases”. A few kids were barking, some were rocking from side to side, several were oblivious to everything, only drooled and looked past us. There were also kids with physical impairments, not mental ones.
I was in shock. And all of that was happening against the backdrop of war and an unbelievable adrenaline rush from the trips to the Donbass.
After that I have seen many children and adults with impairments. This is a big part of life which we do not see and of which we know nothing.
That’s how things are.
I periodically write about a club for people like that in Lugansk. It’s called Okay. You probably remember it.
Information noise is driving me nuts. Approval ratings, Zelenskiy, Timoshenko. As soon as you start reading the newsfeed you want to stop forever. But here is something addictive in this senseless staring at the screen.
I lost the thread of the present. Senses are coming and going, leaving me in a confused state. All these news in my feed are mixed with posts about people dying at the border, another shelling, and more civilian deaths on the Donbass. Schizophrenia
But let me instead tell you about our Seryozha and Vika.
Seryozha is doing fine. One day at a time, no changes.
After the summer heart attack, we’re glad to be able to say “no changes”.
The retirement home is warm but boring. We try to think up something, but it’s not working.
People need to live at home, after all.
And old friend of mine recently confessed that he unsubscribed from me and can’t read me anymore. But I want to defend myself!
This blog is not all that pessimistic. I would even say that from time to time it promotes optimism. I write about the difficult lives of people, and that can’t be avoided. But we and our friends do more than write about it. We do a lot to make things better. And succeed only because someone reads those posts.
I can brag about all the good things we’ve done over the last four years. But it would be more correct to say that it would be better if we did not have anything to write about, and those we write about were leading normal, happy lives. Children and parents were alive, houses were whole, and everyone was healthy. But I can’t change that. I can’t resurrect, make whole again. I can’t end the war. There are many things which are beyond my control.
But we can do some things!
For example, such minor things as help Elena Vladimirovna and her granddaughter Natasha fix heating pipes.
A seemingly small thing, but when the whole family is freezing, sleeps fully clothed, and never leaves that one room, it’s not a small thing. Which moreover is financially beyond the family’s means.
We were successful!!!Now I’ll tell you everything.
In December I wrote a post about little Karina from Lugansk who needs a monthly treatment with cerebrokurin, which can’t be obtained in LPR. The girl needs it to live, and if she doesn’t get it regularly, she might be developmentally delayed.
It costs a lot of money and is unavailable in the Republics. It’s not easy to find it in Russia either, and it costs much more there than in Ukraine.
But we collected the money and ordered it in Ukraine. For Karina’s family that’s an insurmountable expense.
And now it was delivered!!! We can now breath easy, after this difficult and risky undertaking.
I won’t tell you all the details, because even getting it through LPR checkpoints is not simple.
What we bought will suffice for a whole year!!!!
Tanya died in Lugansk on February 5.
Did we know that would happen?
Yes, we did.
Tanya had the fourth stage of cancer, so everything pointed in that direction.
I often ask myself whether Lilya, Ira, Inna, Sofia, and other people under our care would have died if it weren’t for the war?
I don’t know.
At first glance, it would seem it wasn’t the war that killed them.
It was cancer.
A disease which cuts down people irrespective of where and how they live. Rich, beautiful, young, successful. Cancer doesn’t care. Scientists are looking for causes, they seem to have found something, there are various theories. But…nobody can say anything with confidence.
I first encountered that disease when I was 14, when a school friend got ill. I visited him for a year, every week, in the children’s ward on Kashirka. He had lung cancer and he should have died.
But he survived. In spite of it all.
I remember well the children in the hallway who would at some point disappear.
I was a child myself, and my mom at first would not allow me to go to the hospital, fearing for me. She was probably right. But I could not be stopped.
I I also remember my naive question asked of the small lovely girl with an IV: “why?” “for what?”
The people we cared for were killed by cancer.
The young Tanya was killed by cancer.
She left behind Maksim who now lives in an orphanage.
This is not combat. Not bombings, not wounds.
It’s a terrible disease which carried off this beautiful young girl with an IV whom I saw on the Kashirka.
It carried off many.
But you know what I know for certain?
I know that if it weren’t for the war, many of these people would have been able to obtain proper care in time. Get drugs, surgeries, accurate diagnoses. And some would have survived.
Many of them developed cancer as they sat in cellars and were afraid to go outside.
Many of them had cancer develop at a spectacular speed after what they lived through.
Yes, one can say that in some cases war was the catalyst.
Doctors in the cancer ward in Lugansk told us many times that now Lugansk is experiencing a cancer boom. Long lines which the surgeons can’t cope with. There was nothing like that before the war.
And yes, I think Tanya was killed by the war.
Please pray, those of you who are believers, for Tanya.
Tanya and her son in December. One of the last photos where she’s smiling.
We have news.
I tried to find the right words for this, but couldn’t think anything other than “various”.
Tanya is leaving. Tanya, whom we have been helping for several years. Cancer, fourth stage.
The young son is still in an orphanage, the mother can’t do anything anymore. Endless operations, chemos, more chemos.
Now she’s home.
She has more pain, fever has been constant for a while, she’s more frequently unconscious. Our friends managed to obtain an effective painkiller for cancer patients. They make her sleep all the time. She only has days left. Perhaps hours.
A priest was summoned recently.
And we also found a caregiver for her.
It’s our blind Vika’s mom, Sveta.
Sveta spent many years caring for her mother. When we met in the spring of ’15 in Lugansk, in addition to the dead son, ill and blind Vika, she was taking care of her bed-ridden mother. Vika’s grandmother and Sveta’s mom died when the two were in the TB clinic in Moscow. Now Sveta helps us with Tanya.
That’s how things are.
A phone call right before the New Year: “Your mom is in a coma”.
No, that’s not right.
Once upon a time, there were two girls–Marina and Alyona. Listen to their story.
They spent practically the whole war by themselves. I wrote about them many times. They never knew where their fathers were (each had a different one), and the story with their mother is even more interesting. When the war started, Marina, the older and shorter of the two, left for Russia with a boyfriend, while the younger stayed with her mother. Heavy bombing stopped, so Marina returned to the now established LPR and found nobody home. Mother lived in some dump with some dude, with Alyonka looking on. Marina immediately took her sister from the mother. The two started living together.
So, Alyonka grew, went to school. While Marinka took on all kinds of jobs–sales clerk, seller, bookkeeper, loader, etc. Working several shifts while herself so thin as to be almost translucent. If you remember, she once broke her leg, and got no compensation for it. WE offered her help with her studies, there was someone willing to pay for it. But Marina was so afraid for her sister and so afraid to put her hopes in anyone that she refused.
The house is half-empty. Either the mother took everything away, or some woman who lived there for some time in ’14 did. Moreover, the apartment accumulated a pile of debts which the mother wasn’t even trying to pay off. We then collected money to cover the utilities debts so that electricity and water wasn’t cut off.
We managed, thank you for that.
The girls lived for all these years on their own–with a turtle and a hamster. Mom never remembered them. They waved their arms when asked about her: “don’t wanna know her”. We’ve tried to help them all these years, with the bills, food, clothing, money.
I remember how once we came to visit them without warning, bringing presents, and they were so frightened that they hid in a corner and were afraid to move. They thought one of the mother’s former roommates showed up.
And then the New Year’s phone call.
“Your mom is in a coma”. It was a stroke. Two weeks in a hospital. Nobody needs her, except the sisters.
Marina borrowed money from neighbors for treatment. They took the woman home.
One year ago I made the hard decision not to visit hospices. After the New Year’s marathon, where I visited several hospices dressed as the Snow Maiden and with a broad smile on my face in order to give the dying the New Year’s greetings, I fell ill. Upon returning to Moscow I crawled into bed, I was shaking, experienced panic attacks, dizziness, and I started to see a psychologist. I still do. I developed cancer-phobia which is still making itself felt but it’s not as bad as it used to be. In part because I have not been to such institutions. I can’t.
I thought for six months I was about to die. I thought I had thousands of incurable illnesses. Kept looking for them, and lapsed into hypochondria with every health problem.
So, what’s all this about?
Helping hospices is a big part of our aid work. I don’t know how our Lena can find the strength this requires. Lilya was dying in a hospice, and Lena was constantly with her. Many of the people we were helping were there, and Lena sat with them, brought them food, stayed with them until the end. Food and medications are important, but don’t compare to Lena’s moral help. But I broke, and my post about it last year was indeed titled “Broken”. I don’t know if I’ve put myself together since. But I live on, smile, travel, while our aid continues full steam. But I still shudder when I remember the young man with a barely visible beard who was dying of cancer. I’m still horrified by the memory of Nina, whom we brought presents and who died two days later. Liliya, Inna, our Ira, and others.
I don’t know whence the hospice workers’ willpower. I don’t know, I don’t understand, and I simply tip my hat to them in respect as people who are always there.
We try to help them regularly. With cleaning supplies, diapers, detergents. These are seemingly little things, but the fact is that’s simply what’s not available. They get only minimal supplies, and suffer from catastrophic shortages. The worst situation is in the Kalinovka hospice, a town in the line of fire. Last year, when we came to visit, a shall struck two days after we left breaking windows. Nobody was injured. Shells there are a normal thing. There is no bomb shelter, but the workers laugh off such questions. Ordinary life with shells, dying elderly, and diapers in short supply.
The Lugansk Aid Center (the official name is different and totally tooth-rattling) keeps score of many families. With multiple children, without fathers, with adoptive children, with disabled children–everyone who for one reason or another found themselves in a “difficult situation.” They receive help within the center’s abilities. After 2014 the number of such families sharply increased. It also included refugees, who fled to Lugansk from border zones. Many lost their homes, relatives, and other sources of aid. There were many wounded, many people who lost relatives, many disabled. The situation of families who were struggling before the war became utterly desperate when the war began. Unfortunately, there are many women with children who were abandoned by their husbands and have to live on crumbs. There was a New Year’s tree ceremony held for them, during which we, for the fourth year running, give presents to the children. But there were also kids who were unable to come. These kids are disabled.
We came upon the idea several years ago of visiting these families to bring them presents. I did that myself last year. By the end of the day I was prostrate with fatigue but it was genuine happiness. The happiness of children, their parents, grandparents. Both the children and the adults sang, danced, and even cried from the joy and the unexpectedness.
This year I passed the baton to the amazing Olya, a social worker at the Lugansk Center. You should remember Olya, we keep helping her cancer-stricken mother with medications.
Here are some photos of Olya the Snow Maiden with the kids. Various kids–some have mental deficiencies, others physical ones. Yet others have none, but all of these kids and their parents are struggling.
Zhenya wrote: “They were waiting for us!!! The kids were prepared, they recited enough poems to last us the whole year.)) For most of them this was a happy event–this much was clear to an unaided eye.”
You don’t know most of these kids, though others you’ve met on the pages of my journal.
Friends, thanks to all of you who helped make this holiday for the kids! You can’t imagine what it means to them to be visited by Grandfather Frost and the Snow Maiden. It’s the happiest of happiness.
Special greetings for these special kids!