EKATERINA KACHALINA

demyelinating polyneuropathy

Everything that has happened to me throughout my life has always been characterized by doctors with one laconic phrase:

“VERY interesting case!”.

Ekaterina Kachalina, 47, Voronezh

I do not have any one “general” diagnosis — everything is so confused that I got used to the fact that the doctors only confusedly throw up their hands.

It all started literally since infancy — heart murmurs. The doctors heard them when I was still in the womb. So basically, my childhood passed under the “aegis” of a heart defect. Eventually that diagnosis was removed. But

while my peers were socializing in kindergartens, I was socializing in hospitals.

I was there alone, without my mother, and, of course, that was the first big stress for me. Over time, when the body began to form more or less, the difference in my legs became noticeable. The right one was thinner than the left one for some reason. The first years of my life it was just a visual feature, which did not affect me or my walk in any way.

*Katya with her parents and older brother

I had a perfectly ordinary childhood — with school, love notes and even “gymnastics”. I was behind in the races, yes. But other than that, it was just like everyone else.

The real problems started in puberty, when the mechanism of puberty kicked in.

The growth spurt triggered a severe form of scoliosis.

And at the very moment when my peers began to transform from ugly ducklings into beautiful swans, when they began to form beautiful feminine curves, my spine began to spiral, my fingers deformed and my vision rapidly declined (optic nerve atrophy is also a “very interesting case”).

I remember the summer when my parents and I went to the lake and I habitually undressed on the beach. That was the first time I saw people’s reaction to my changes. They didn’t even point the finger at me.

I wanted to fall to the ground.

Maybe if my parents' reaction had been more supportive, I would have reacted differently. But then I just shut down for a while.

It was very hard and unpleasant.

Basically, I was faced with a choice.

I realized that I am not like everyone else, and I will never be as I would like to be — beautiful with a feminine figure. What to do? Merge with the asphalt and quietly suffer? Or accept this situation, and “work with what is.

I chose the second.

It was clear that I would just have to learn to live with this whole bunch of peculiarities.

And, I must say, for a while I succeeded in doing that. I had a period of completely serene and happy life for about 15 years — I didn’t go to any doctors at all. I managed to get married — and even get pregnant.

Doctors treated the idea of my motherhood with varying degrees of enthusiasm — and sensitivity. Despite the fact that the pregnancy itself was going perfectly, one doctor fluttered his arms and exclaimed:

“Who let you get pregnant at all?!”

I was at a loss for words.

But soon I was diagnosed with a uterine myoma. A very large myoma.

I was warned that the most complicated surgery was to be performed and the question was, most likely, whose life would be saved — mine or the baby’s. The unspoken rule was to fight for the mother’s life. I asked for one thing: “Save my pregnancy.

I was told that they could only know whether or not they would be able to save the child on the operating table.

The first thing I saw after the anesthesia was the shining face of my surgeon, Galina Pavlovna Bubnova: “Katya, we made it!

It was the happiest moment of my life.

And then when I was lying in the maternity hospital and the midwives were helping me with breastfeeding, they felt a lump in my breast. A fibroadenoma (benign tumor). It was removed. Six months later I got a new mass. It was removed again. A year and a half later I found a lump in my breast the size of a cherry. It was also removed, but this time the doctor called me:

“Come over. We need to talk.”

No one told me straight out that I had cancer. They were somehow careful and treated it very delicately. But then there was a commission, where they told me that my breast would have to be removed.

Carcinoma.

I was also lucky that it was caught at an early stage and all measures were taken very quickly — the tumor was susceptible to hormonal therapy and chemotherapy was avoided.

Immediately after the operation to remove the tumor I fell into a coma

— apparently, this is how my body reacted to the anesthesia. I spent a couple of weeks in a coma. When I was rescued, I had the full sensation that I had not come out of the intensive care unit, but literally — from some portal — into a new life.

And now I live.

It’s been almost eight years. And only now I can say that I understand “what it was all for”. If it were not for this story — I would not have become the leader of the cancer-patient community in Voronezh, would not have found a huge number of like-minded people, would not have found myself in social activities, would not have become the heroine of “Fashionable Sentence” on TV show, after all.

Life intricately weaves its own lace.

Yes, perhaps the number of trials that have fallen to my lot is unfair. But is there any justice at all? And what is it anyway? What are the criteria? After all, all things being equal.

I’ve always gotten out of all those things anyway.

And someone else didn’t. And I was lucky, at least in this respect.

I’ve lost my illusions.

And I assume that there is no justice in the world or in life. But as long as you have life — it’s worth holding on to. It is the most important and priceless gift that is given to all of us.

Perhaps that is my main mission for today — to help those around me understand the value and fragility of life.

A person may leave home to go shopping and end up in a cemetery. Or a hospital bed. I once went out to a concert, and ended up in the hospital with a pin in my leg and a weight strapped to it for three weeks. I just slipped.

It really is an amazing time.

If I had been born in the Middle Ages, or even in the nineteenth century, I probably wouldn’t have survived at all.

Well, even if I had, my fate would have been extremely sad.

Today, when people are saved from the most serious diseases, when the cure rate for cancer is really high, when people with disabilities, with cancer, with HIV are able to continue living almost full lives — it’s a sin to complain.

What would I say to people who face these situations? The main thing to remember is that this is not a punishment, not a “punishment from heaven” — by no means. This is your path. The path of development.

And don’t ask yourself the question, “Why do I need all this?” I gave it up when I was young. You will never know the answer. It’s much more productive and rational to think, “what’s in it for me? What good can I get out of this situation?”

Ask yourself the question, not “why?” but “for what?”

My story has developed in me the ability to empathize. It’s easy for me to understand other people’s motivations, I’m an empathic and sympathetic person.

I have now found my place in which I can manifest and fulfill myself. As a guide, as a helper, as a mentor. Yes, I may not be Tony Robbins, but I know for a fact that after talking to me, many people get their hands “up” again. And they say. And they say, “Thank you! I talked to you and everything fell into place, you empowered me with your story.”

I feel a great payoff from the events I hold for people. The fact that, thanks to me, someone can rest and reboot, take their mind off their illness is also very valuable to me.

All people with disabilities have complexes.

For many years I lived in the paradigm: “I’m not like everyone else”, feeling unattractive and that I have no chance in the “bride market”.

My mother was always trying to fix something about me, to “drape me.”

“What’s the point of having everyone stare at you? Cover up.”

Longer dresses, looser shirts — in a word, hoodies. So as not to be conspicuous in any way.

Of course, I wasn’t told directly that I would be alone, but by phrases like:

“WHENEVER you get married someday”

— it was clear that this was a fantasy scenario. If the heavens fall to earth, and suddenly someone wants to marry me.

Ironically, I had always had admirers.

But mentally, I was already preparing myself for the fact that I would probably have to spend the rest of my life growing old with my parents. It was a complete feeling that without them, I would be lost.

And here comes Dima, who totally accepts me in everything. He kisses my “beautiful legs”, adores me and literally carries me in his arms.

Every night he hugs me and says:

“It’s so good that we met!”.

This attitude has proven to be truly healing. Thanks to him the complexes are almost completely gone. Where before I would worry and worry about my appearance — today I just do not pay attention.

So the role of a loving person is, of course, extremely therapeutic.

And looking back, I can hardly believe I was in a relationship with a man who was embarrassed of me. I just can’t imagine now how you can live with a man who doesn’t accept you for who you are.

You either live completely in acceptance of your loved one, or you don’t live in any way.

(And then he’s not much of a lover.)

What did I tell myself when I was young?

Respect yourself. Be aware of your worth — just the way you are. Don’t wait for someone to choose you, choose yourself. Don’t wait for someone to deign to give you something, go out and get it yourself.

And never let anyone humiliate you and your dignity.

I believe that the world is made for happiness.

Yes, there is a big outside world that you can’t influence. But there is a world inside you, inside your family. These are the little worlds that you have an influence on — take care of them. Make them good and bright.

The world itself does not wish you evil. Bad events do not mean that the world is bad in principle.

And I can also say that in any situation, the most crisis, the most difficult, there is always something good.

They say that if God closes a door, he opens a window. Sometimes you just have to look closely — to see new opportunities.

This is your path. And it’s worth the journey.

I thank Katya and the entire team for their trust, openness to experimentation, and endlessly inspiring experience! Those were truly magical days!

(as they say — from Voronezh with love!)

Photo/style/text: Julia Otroschenko

Page Katya on Vkontakte

Makeup: Anna Raspopova

Hair style: Elena Nizhelskaya

Backstage: Alexander Shirobokov

Более подробно о преображении Кати:

читать