Mom invented epilepsy for me: how I was treated for diseases that did not exist
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From childhood, I knew that I was seriously ill. Mom sighed and said: «If you live to be thirty, then this will be only my merit.»
When I was 5 years old, I had a seizure. Arriving ambulance was categorical: epilepsy. Six months later, there was a second attack. Mom was horrified: “Don’t tell anyone, it’s a shameful disease, what will people say!” I didn’t tell. My mother’s close friends, who knew about my diagnosis, looked at my mother as if she were a saint — wow, one is raising a sick child! The accompanying halo of holiness suited Mama very well.
Mom always took care of me. For as long as I can remember, I couldn’t do everything. You can’t watch TV (flashing on the screen can cause an attack), you can’t eat salty (salty attracts water, and water accumulates and can cause an attack), you can’t walk after 19 (what if something happens?), you can’t swim (what if a cramp, and can’t we save you? I was constantly on phenobarbital (Phenobarbital is an antiepileptic drug from the group of barbiturates. It is a derivative of barbituric acid, has an indiscriminate inhibitory effect on the central nervous system. It is addictive, drug dependence (mental and physical) and withdrawal syndrome. —ed..). She went to bed at 21:00 until the age of 15, after 15 — no later than 22:00. Can you imagine my level of socialization? I still watch those classic films that I missed in childhood and adolescence.
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My diagnosis did not prevent me from beating me, turning on the light abruptly at night when I was sleeping, waking me up and starting soul-saving conversations. I tolerated it because I thought it was the norm.
From time to time I was taken to Yekaterinburg (we lived in a small town nearby) to a luminary in the field of neuropathology. The luminary frowned, looking at the results of my research, and said that it was time to stop taking phenobarbital, because there were no more seizures and there was no convulsive readiness in the studies either, and — moreover, there never was! In response to this proposal, my mother turned pale, clutched at her heart, the doctor frowned even more and wrote out a new prescription. And I drank phenobarbital for another 10 years. After all, there were two attacks.
When I turned 15, the doctor categorically said that it was time to stop the treatment, because I was healthy! All studies indicated that the danger had passed. Several different doctors told my mother that this happens with the rapid growth of a child — the brain does not keep up with the body and shows a gypsy with an exit in the form of one or two seizures. This does not manifest itself in the future and in fact is not a disease. But that didn’t stop my mother. Phenobarbital, thank God, was canceled for me, but morally it became even worse. Several times we went to specialists for follow-up examinations, which showed that everything was fine with me, and during one of the examinations, the doctor asked: “Did the character worsen after the withdrawal of phenobarbital?” Now I understand what she meant! Sitting on a sedative for 10 years in fact and abruptly canceling it, and even during the transitional age, is a difficult test. But my mother happily exclaimed: “Yes! She has a difficult character! ”, And since then any attempt to show independence has been denounced as a“ difficult character.
I’m only now beginning to realize that those around me had a hard time growing up. I got used to being a fragile being and behaved accordingly. At school, to put it mildly, she was not popular. I always knew that I should be relieved, because I’m so sick! I allowed myself to say things to people that I shouldn’t have said. In addition, they practically didn’t let me go anywhere, because it’s dangerous to walk, girlfriends can turn out to be drug addict prostitutes, and a complete nightmare is going on at discos. At the graduation, by the way, they let me go only to the solemn part, and after 22:00 … That’s right, sleep!
I had two girlfriends, calm home girls, with whom we studied together. We never had house parties, we rarely went out for a walk and only during the day, we almost always sat at home. Once I was allowed to go to Yekaterinburg to a mathematical school — its sessions were held every quarter for three days during the holidays. I was far from alone there, there were many of us, and every minute we were under the supervision of adults. After my return, my mother realized that I liked it there. Of course, I liked it, there were people with whom you could communicate! Showing this is a huge mistake on my part, because these sessions have become a great tool for manipulation. “If you don’t take out the trash can, you won’t go to Yekaterinburg.” “If you walk without slippers, you won’t go to Yekaterinburg.” Lord, all the time that I studied there, I was the perfect daughter! I did everything they told me. From the outside, we were the perfect family.
At the age of 14, I had my first boy in this very visiting school. I fell in love with him. He was not much older than me and lived in another city. Between sessions, he came to visit me. My mother took his arrival terribly, although he was very good. All the time that he was visiting us, she pointedly took care of me like a baby: she tied my shoelaces, tried to spoon-feed me, screamed that she would not allow me to walk after 19:00, because I was sick! I was terribly ashamed in front of him, and when he left, I mustered up the courage and called him and said that we should not meet. I did this because I understood: my mother would not let me live in peace if our relationship continued.
Since then, I haven’t dated anyone before college. Mom was happy: still, the child is so sick, but is under her wing.
My card in the hospital was not just swollen — there were two of them. All our trips to the doctors did not fit into one. Mom’s fears were not just about epilepsy. These were pneumonia suffered in early childhood (“You have rotten lungs in holes, do you remember that?” Oh yes, I always remembered this), “Immediately put on slippers, you want my death, I forgot that you have rotten lungs ?!». And growing pains in the legs (“You have cancer! My father had the same pain in his legs before he died!”). And even tinted eyebrows for the first time (“You obviously have changes in your body, you are 100% pregnant! Tell me right away, we will go to the doctor and have an abortion for you!”). And this is constant, in the background, every minute. To her, I was an invalid with one foot in the grave. A depraved pregnant invalid with darkened eyebrows.
When I entered the institute, my mother was extremely categorical — no hostels, no apartments in Yekaterinburg, you will ride the bus every day: “What if something happens and I won’t be around?” I got up every day at 5 am, rode the bus to study (on a bus that was terribly stuffy in summer and icy in winter), and returned around 9 pm. She did her homework and went to bed. Such a day. It is not surprising that I did not have a personal life, although relations with fellow students were better than at school.
In my fourth year, I somehow got into a serious relationship, and I moved in with my boyfriend. The move happened under a terrible scandal arranged by the mother. “You promised at the age of 5 that you would never marry and never leave me! You are a liar!»
I never lived in my home again.
We broke up with that guy, and I began to arrange my personal life. With one of my men, we became interested in diving. Before diving, I prayed every time — God forbid something happens, because diving is a pressure drop, it is carbon dioxide in the blood, and suddenly an attack occurs at depth!
My ex-husband was a doctor and was very skeptical about my «sores». We periodically talked about children, but I could not even imagine that I would give birth — because I was not allowed.
Childbirth is such a stress for the body. I don’t know why we didn’t have children, maybe because I just didn’t want them from him, or maybe deep down I was sure that I wouldn’t succeed. To all my friends who asked when we would finally give birth, I answered with a light soul: “God does not give,” despite the fact that we, in general, did not try. But even then I began to understand that my health was not as bad as it seemed.
Then we divorced and I remarried. My husband is a healthy person with a healthy attitude towards life. He did not understand what was happening to me, but he was afraid to touch on this topic.
By this point, my suspicions were beginning to be confirmed.
All the doctors I’ve been to have said I’m in perfect health. At first, this surprised me to the extreme, because I’m sick! Why can’t they see? Charlatans? Dropouts? The results of fluorography plunged me into shock. Where are the black lungs in the holes? After all, they do exist! I still remember the feeling when I saw my normal electroencephalogram (research on the subject of convulsive readiness of the brain): “Well, of course, you probably do not have the qualifications to determine my disease.”
All my life away from my mother’s house, I must have tested myself. I lit up for the first time, it seems, to check what would happen (my mother told me that any cigarette for me is certain death). Quite expectedly, nothing happened, and I again ran to be examined. Well, where is it all, where? But all tests were normal.
Until the age of 25, I did not believe that I was completely healthy. “Where are my diseases, damn it?!” I considered myself a fragile vessel, a thin stream that must be protected.
The realization of what had happened did not come immediately, but it did come. I read a lot about Munchausen’s syndrome (a disease in which a person begins to invent non-existent diseases for himself or his loved one) and was covered with cold sweat. Everything matched. I was healthy!
And since then I’ve been carried away. I did everything I couldn’t. She worked up to a seventh sweat, did not sleep at night, ate and drank «forbidden». I smoked, quit repeatedly and started again. It seems to me that I subconsciously wanted to prove to her that she was wrong, that in fact everything is fine with me.
My work has always been associated with constant moving, many hours of flights, terrible lack of sleep. I had months when every day without days off was at least one flight. I lifted weights, dived, rode a motorcycle, drank. Probably, I subconsciously wanted to know where my limit is, because all of the above is prohibited with my bouquet of sores.
Now, of course, I have suspended this race, but the desire to prove my case is still sitting in me, it has not gone away. However, paradoxically, it was at the moment when I finally realized that I was not sick that I wanted to lead a healthier lifestyle. I first started going to the gym, for the first time I started to monitor nutrition, I finally quit smoking.
I probably understand my mother in some ways. She was very frightened when a seizure occurred in front of her eyes. She must have been afraid of losing me, and that’s okay. I admit even that at first the treatment was necessary. Everything is possible. But the methods with which she approached the protection of my health, I would never apply to my child.
When in one of the conversations I told my mother that everything points to the fact that I am absolutely healthy, her answer was phenomenal.
