Oxana Zabelina: I’m changing this world just by the fact of my outrageous existence

Russian version

I’m always scared to find out what people think when they see me the very first time. Slurred speech, a gait disturbance, twisted back, neck, and face muscles. I have heard different impressions: cerebral palsy, a victim of a car accident, a stroke, a sports injury… In fact, I have dystonia, with which I fell ill when I was seven. Before that I was like everyone else. Now I see myself like everyone else too. Probably, this delusion or dream will remain with me to the end – I am like everyone else.

About dystonia

“Dystonia” is a word that many people have in their heads as an incomprehensible combination of the letters VD (Vegetative Dystonia) which is an abbreviation that Russian therapists use to describe fatigue, stress, and other minor complaints. In fact, dystonia is a serious neurological disease that prevents you from relaxing. Your muscles are always in high tone, the brain constantly and unsuccessfully sends them the command to “relax”, but there are only tremors and contractions. If dystonia is focal, you lose control over a single part of your body like an arm, neck or eyelids. But I, by rare chance, got sick with a generalized form of dystonia, where almost all of the muscles are involved.



It took my parents almost four years of going to doctors to get the right diagnosis. Even now, thirty years later, this period is record-breakingly short. On average, patients with dystonia spend five years to get a diagnosis. For five years, you will be hearing that you are just a bundle of nerves or a pretender; you will be treated for Parkinson’s, scoliosis or depression.

Back in the early 90s, there were no effective methods of dystonia treatment. Even now pharmacology offers only barely-helpful muscle relaxants and highly sedative tranquilizers. Botulinum toxins reduce the muscle tone and contraction for a short time only, and work with only some body parts. The newest and the most effective method to date is Deep Brain Stimulation (DBS). Behind this brief summary of therapies is the twenty years of hard-earned experience experimenting on myself.

I don’t want to tell you about these years of ups and downs. If all this time I was only engaged in treatment, I would definitely have lost my mind. But my wise mother said: “Since we cannot cure you at this time, you need to study. Imagine, you will grow up and you will be cured, what you will be doing then?!” I decided that trying to live somehow is better than waiting for a miracle for a long time, and then trying to live. I graduated from school, university, got PhD in economics, went to the United States for two years to study public policy administration, and I’m still studying, studying, studying …

About education

School was a kind of socio-psychological challenge for me. I did not understand why I had to suffer, to limp there every day, to listen to how I was teased, to rub trembling hands in blood, fixing their positions while writing, and constantly realize that I cannot do things just like other children. My mom had it even worse. On the one hand, she had to listen my endless whining about not wanting to learn. On the other hand, she had to deal with the school management, who tried to transfer me to the so-called “home tutoring program” all the time, because school was hard for me, because I allegedly upset other children with the fact of their torment, and simply because I disfigured the nice look of the school.

A few years later, when I began to socialize more closely with people with similar diagnoses, I met many people who were the victims of the home tutoring program. At best, this is a program of the first three grades, plus an extremely low level of socialization. They were simply thrown out of society, while society lost that part of itself that is responsible for compassion and, as Americans like to say, “diversity”. I ensured that the people surrounding me had this diversity and the ability to sympathize. I know for sure that my classmates and colleagues do not separate people with disabilities as some detached category of incomprehensible people. They treat me like a person who also breathes, speaks, cries, laughs, and wants something from this life.

Scientific progress

For me, the word “faith” has a very clear definition. I endlessly believe in the power of human thought. In fact, this is the only thing that we have; well, this is my delusion as an eternal student. When I was told again and again that dystonia is still incurable, I heard only that it is STILL incurable. I long awaited DBS, which in the last century looked like absolute science fiction. Since 1997, DBS has become a common practice in treatment for Parkinson’s disease in the United States. Since 2003, it has been officially recommended for the treatment of dystonia. Russian therapists also did work on the implementation of this method. Thanks to their work, in 2005 I had a very successful surgery at the N.N. Burdenko National Scientific and Practical Center for Neurosurgery, Moscow, Russia.

Actually, DBS technology is very simple. Two long electrodes (leads) are placed in certain areas of the brain, from which wires are laid under the skin to the neurostimulator device in the chest. A neurostimulator is an electrical impulse generator and battery. The areas of the brain responsible for causing dystonia symptoms are constantly treated with electrical stimulation. It sounds like a very primitive technology, but it’s very expensive, because such a device should work safely and without fail. The DBS surgery costs approximately 1.5 million rubles. This procedure can be done within the Obligatory Medical Insurance program (with the high-tech medical care quota) in more than 10 Russian cities. Unfortunately, in the last 2-3 years, there has been a shortage of such quotas, and patients wait several months.

DBS has been performed in Russia for almost 20 years. However, you will not find any official statistics on the number of DBS patients. Perhaps hospitals keep local records, but there is no single national registry; at least I don’t know of one. This means that the need for procured neurostimulators is not calculated, there is no plan for the creation of neurostimulation adjustment facilities in regions; it is impossible to get insurance coverage for DBS-related devices like patient programmers or chargers; neurologists do not undergo training on working with DBS patients, and so on. Our health care system still pretends that DBS is some kind of medical experiment, although the critical mass of successful results has been achieved a long time ago, and the number of patients with DBS is in the thousands.

Organized survival

I talked a lot with patients and doctors in Russia and abroad, I studied public policy in the United States, and I had an internship with the largest dystonia patients’ organization in the world, the Dystonia Medical Research Foundation (Chicago, US). The most obvious next step for me was to create a patient organization in Russia. Since 2010, I began to try to transfer the super-successful American experience onto Russian reality.

Creating an organization, informing patients, fundraising — all these approaches already exist and work great in many countries. However, they were completely useless in Russia. In my opinion there are three main reasons for that. The first, of course, is a political issue. As soon as I applied to register the NGO, I immediately came under the scrutiny of all possible governmental agencies. I was denied registration several times without any explanation. Our state does not like non-profit organizations at all.

The second reason is the patients themselves. Perhaps I’ll be pelted with stones, but I see the phenomenon of a serf mentality in our people. Patients are afraid to complain, afraid to write and ask, insist and defend their rights. They afraid of will not get insurance for future surgeries, to lose their disability status and even to be “overtreated” by doctors.

The last reason — in order, not in importance — is money. Russian patients do not have the resources to lobby for their interests, to pay for scientific research, or to build hospitals, as Americans do. Those few wealthy people who are faced with serious health problems would prefer to be treated abroad rather than to invest in the development of Russian healthcare.

I don’t want to say that creating patient organizations in Russia is completely impossible. Of course, there are very good examples of solving some issues through joint efforts. However, those organizations that work today are problematic. The government has driven them into the framework of the most severe control. They were forced to play by their own rules and in their field.

Toothless bureaucratic casuistry, the world of gray ties and faceless figures contradict the spirit of patient rights movements by their nature. It turns out that we suffer and die, but behave in the same way as healthy and wealthy people; it looks like we are the same. Sorry, but I’m not the same. My diplomacy and political tolerance are buried in a mass gravewith my health.

About the word power 

After the fiasco with my efforts to create a patients’ organization, I had no will to return to this topic at all for a very long time. I just threw up my hands. Then the neurologists and neurosurgeons I was acquainted with started asking me to talk with one patient or another. The situation was typical — people refused to have surgery simply out of fear of the unknown. Medical reasons provided by practitioners are usually soulless. The therapists do not try the procedures for themselves. They don’t know whether it hurts or not, whether it helps and how; and how the patient’s quality of life will be changed. It’s a different matter when you talk to a person who was in the same life situation.

I had a long and painful period of decision-making about undergoing DBS. In the early 2000s, it was almost an experimental procedure, there was very little information. However, in the US and Europe there were already quite a lot of patients who had gone through similar experiences. I began to email them. People answered my letters in detail, one even sent me a video, and they frankly and honestly told me about themselves. I decided then that the only way I could appreciate these people for their frankness and kindness is to do the same for others.

I almost never say no to people when they ask about me or about treatment. I’m sharing my experience. At some point, it became so many people, that I started a discussion group on the Russian social network VKontakte, where I shared information, videos, and documents. The group is slowly growing. I’m glad that patients are paying more and more attention to such resources. But the incredible secrecy of our people grieves me a lot. More than a half of the participants have anonymous accounts specially created for this purpose. Users write questions, get answers, and then delete their account. Almost every day I receive private messages that begin with the phrase: “I can’t post to the forum, suddenly my relatives and friends will find out …” It’s strange for me to hear that. It is a shame if they “suddenly find out” about syphilis brought from a holiday in Thailand, but when your neck is twisted by 180 degrees or your hands are shaking, believe me, everyone already knows about it.

The harder and more incomprehensible the disease, the higher the likelihood that people will hide it from their environment by hook or by crook. It is indecent to openly talk about health problems in our society. This is a secret that is overgrown with a mass of unnecessary and false rumors. You can tell people about gastritis or arthritis; for cerebral palsy or autism we are already talking in a whisper; if somebody is dealing with paralysis or oncology, it usual to close black curtains on the windows and shut the doors for all. Patients are by themselves, floundering in their distress, like drowning people, who are embarrassed to shout “help!”

My experience has shown that the more people know about your problem, the easier life you have. Neighbors and friends stop to think about you. As soon as information about the new treatment appears, you will be told about it first, because people know that you are looking for it. If there is an opportunity to improve your life conditions, then people more willing to help you, just because they know how exactly they can be useful for you.

About dreams

If you think that my dream is to be cured, yes, you are right. But I think more about how I need to live here and now. My pragmatic dream is a case-management system in healthcare; which is treatment of a particular patient, not a disease. After all, it is absolutely clear that treating a person with the flu or trauma is a completely different process than treating a person with a serious incurable disease that affects the entire body, and at the same time is not fatal. It is a “life-long care” therapy designed to support the person and alleviate suffering. The term “palliative care” in this case is inappropriate, because it implies preparation for death, not a way of life. At least in our country it is understood that way.

Ideally, it looks like this: I come to a therapist specializing in my disease, in the case of dystonia, it is a movement disorder specialist. He looks at me, listens to me, evaluates the effectiveness of ongoing therapy, and says something like: “Now the gastroenterologist will check your liver, because some drugs can damage it. The orthopedist will pick up night splints, because the joints are destroyed due to muscle deformities. The phlebologist will work on the problem with the veins caused by muscle hypertonus. And the psychiatrist prescribes something for depression. See you in three months!”

And this single therapist knows me. He knows about my disease, how it affects my body, and what need to be said to other narrow specialists in order to provide me the effective support. Currently a patient wanders around a hospital by themselves; he or she enlightens all their specialists about dystonia, and how the sequela caused by this disease are supposed to be treated.

In place of a conclusion 

I write these lines after midnight. All my family members have been sleeping for a long time, while I tap the keys as long as possible just to avoid painfully falling asleep. It will be hard with sore neck, twisted back and arm. My body just has no peace. The nighttime is the most terrible of all; you begin to feel your complete loneliness in the battle with your monsters. You can live with the loss of the ability to walk, you can cope with slurred speech. Silence is golden, after all. But when you get tired of your own tense body … only two things remain: mind games and coffee.

Today dystonia is an incurable and difficult-to-control disease. You can temporarily alleviate the condition, reduce some symptoms, but this war has not yet been won. In such a situation life is constant ups and downs; there is no stability and planning. Today my legs are walking, but not tomorrow. The same with my speech, neck, hands. This is a constant fear that it will become worse, that no one will be able to help, that the only way out will remain tranquilizers. These are the rules of your game.

But life is very honest with me. I don’t doubt the friendship and love; there is no reason to love me out of self-interest. I get a lot of help just like that, and when I achieve something by myself, I know that I can respect myself for it. There is no place for me in this life; even though it is supposed to be inclusive and diverse. So, I’m changing this world just by the fact of my outrageous existence. Probably this is my career; and I’m very successful in it.

English editing: Carrie Bernstein



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