I Did NOT Save My Brother’s Life
The inadvertent killer in all of us
DISCLAIMER: readers may find some accounts of suffering distressing.
My brother died three Christmases ago, at a train station in Birmingham, UK. We only learned 5 days later. CCTV showed him standing in the middle of the tracks, waiting for the train to come. They had held on to him until he was claimed. There had been no way to identify him.
He was born 40+ Christmases ago, in then-Socialist Bulgaria, unwanted. Abuse marred him since infancy — my father, grandparents, then me (a jealous disturbed 2-years-older sister), then classmates, teachers, neighbor’s kids. Physical and emotional bullying. Beatings. Restrictions. Demands. Humiliation. Rejection. Neglect.
He fell ill at 18, though we did not know this until he went to university in Sofia, the capital. I had no time to spend with him, despite sharing a flat. I was busy picking up the shattered pieces of my own personality in the context of my newly-found parent-less freedom. As usual, my parents were interested in nothing but our A-grades. Socialism had fallen. We were tasting democracy. The streets had burst out in color. There were events we could go to. I was always out. He was always in.
It all started with a panic attack. My brother was shaking and crying, ‘’I am scared! I am scared!’’. My mother happened to be there. An ambulance came.
I walked the moldy corridors of the psychiatric hospital, with its white lights and staff in white coats — a stinky Doctor-Who dungeon. The psychiatrist was preoccupied with forcing my mother to sign a consent form, authorizing the medicals to perform electric-shock therapy on my brother, against his will. The adrenaline rush inside me was intended to give me the power to save him.
The doctor, peasant-like, rough and coarse, ushered ridicules, “Who are you to teach me what to do with my patients? Who has the qualifications?’’ I tried to explain that perhaps my brother would benefit from counseling, to rebuild a stronger personality when faced with panicky problems. I knew about counseling from books friends had brought over from the US. Bulgaria knew of no counseling in 1992.
The doctor turned severely on my crying mother.
‘’If you sign this paper and your son gets the EST, I promise you he will never be ill again’’ — he put his finger on the paper as if to pierce it, then defiantly eyed me — “A patient needs the chemicals in his brain “sorted” before they can even think of counseling’’, he hissed, ‘“ patient in a “crazy” state is not able to respond to counseling’’.
Then he eyed my mother, again, “Your son. Will. Never. Be. Ill. Again.”
I knew I had lost.
My pale brother went even paler when we told him. “Bogged down’’ by fistfuls of sedatives, he was not even able to have another panic attack. My sobbing mother had signed the paper, fighting her guilt with the mantra: “after the EST my son would never be ill again’’. I had to get out of the white moldy hell, to breathe. I didn’t sleep for nights.
I went on hospital visits. The EST had been very painful — it was not supposed to be that — hell knows how they had performed it — “Bulgarian business’’, as usual. My mother took our patient homemade food every day. His starved inmates claimed it by simply coming and taking it off his hand. None of the windows could close, some with broken panes — what must the place be like in winter?
After months he was allowed to come home. My mother moved into our flat, ‘‘to look after him’’ with daily fistfuls of multicolored pills. He complained of feeling worse, losing his short-term memory, constantly feeling tired, never concentrating enough to read a book. He used to draw beautifully; he drew never again. He sat at home all day, shaking his legs and staring at the TV.
She watched him like a hawk, daily reporting to me: “Today he was calmer. Last night he slept 16 hours. Probably because I “upped” his sedatives by a half. He had been very agitated, walking around the town at night. Yesterday he pawned my jewelry and the tape recorder, which I had to go and redeem’’.
“You cannot “up” his medication without asking the doctor’’, I said, “You are not qualified’’.
“Believe me’’, my mother answered, “When you’ve had years of this’’ — she pointed at my brother — “you’d be more knowledgeable than the qualified’.
My brother had years of “this”. He stopped going to lectures. “I am no longer able to read’’, he complained, “My memory is not retaining anything. Feels like the EST has wiped it out’’.
So my father wrote his dissertation and he passed his degree. He graduated with a Masters's in Accounting and World Economy, to become a statistic in the segment of unemployed disabled qualified accountants (if such exists). His university mates, whom he had helped with studies and tipped at exams, all found jobs at Western companies and earned good money. When my brother tried to contact them, they did not return his calls.
So he lived alone, with mother. He would occasionally do the shopping, but this made him so tired, that he had no energy for anything else. At times he slept for weeks, then became agitated and paced rooms at night, or went out for walks at 2 am. He frequented local all-night cafes, where he was served but not spoken to.
He would buy coffee and cigarettes with his “pension of a person with 75% disability’’ — £60 a month — enough for a coffee and sandwich a day, but never enough for cigarettes. He would chain-smoke up to 60 a day. My mother would nag about the money wasted on cigarettes when they had not enough for food.
I felt angry and helpless — I worked and contributed to the bills; he didn’t care!
Smoking was his occupation and calm. He had nothing else.
A couple of times he was able to find work. He would go to job interviews where they would demand to see his medical card, stating “schizophrenia’’ in big letters across. “Sorry, mate’’, the panel would say, ‘‘we cannot take anyone like that’’. My brother understood, picked up his card, and left.
Still, one KFC restaurant took him, to clean the tables. He managed about a month. Then they told him he did not work fast enough. “I was constantly confused’’, he explained, “I did not know what I was supposed to do at what point’’.
Once it was my mother that found work for him. She knew the headteacher of a Gypsy school in the most rundown part of Sofia, where Bulgarians did not go. She asked him to employ her ill son, as a favor. So my brother started, helping kids learn to work with computers. There were 3 computers in the school, bare cables and live wires exposed all around them. My brother mainly protected the kids from being electrocuted. Then he was asked to do any odd job.
He was on a half-time pay, though he worked full-time. The assistant head’s daughter worked at the same school, on full-time teacher’s grade pay, although she only assisted half-time. On questioning the “unique” arrangements, my mother was explained that “her son was ill, after all’’.
Still, this job seemed to provide hope for my brother, a reason for him to get out of bed; extra pocket money as a welcome bonus. Although he went straight to bed after work every day, to me he sounded positive for the first time in ages.
Still, there were problems I did not know about. The rest of the school staff ostracized him. Nobody spoke to him in the staff room. Colleagues crossed to the opposite side when they saw him in the corridor. Out in the streets, the Gypsy kids threw stones at him and shouted, “mad, mad!’’. He endured this for 6 months.
By then I had left for Birmingham, UK, scraping with teeth and nails to establish a personality, learn to communicate, hold a job (high school teacher was the only thing my then-immigration status allowed me to do), build confidence, find friends (possibly a boyfriend), avail to the most of the relief of no parents sniffing down my neck. Found myself with money (pre-2008), I spent lavishly — clothes that burst wardrobes, lines of shoes in all colors and shapes, make-up I had nowhere to put, pretty furniture, books, books, and books, holidays (mostly alone).
In Bulgaria, my brother’s situation had not changed — alone with our mother, living off her meager pension (she had retired). Had it not been for her (and me sending money over), he would have starved. Other disowned psychiatrically-ill people rummaged in dustbins around Sofia.
In 2001 my father accidentally died. Our next-door neighbor, a law student, accused my brother of causing his death — I still have no idea why, but I can’t imagine being told this. This neighbor also called my brother names and set his huge mastiff against him. Years later this lawyer-to-be, fully-fledged, rose to the position of Chief Justice of the Supreme Court of the Republic of Bulgaria. I wish I had told the b******, all those years ago, what exactly I thought of his “justice’’. (He was soon dismissed, anyway, after leasing the National Palace of Justice to porn video makers).
Other neighbors also avoided my brother. In a country where you just walked into the opposite apartment and demanded coffee for the cake you had brought, he was not even greeted with a “hello”. On public transport, people stared at him as if seeing a monstrosity of a kind. Others in the street stopped him and demanded money. He never refused, afraid he might be beaten up.
A top-floor apartment in our block was bought by a known criminal with a gun and links to the police. Occasionally our neighbors found their car tires missing, but no one dared complain, for obvious reasons. One day my brother found the apartment half-empty, after an afternoon nap. The TV, the computer, my mother’s crystal glasses, even the woolen blankets from his bed were stolen. Stolen car tires outside were one thing; only the ill man’s apartment had been so directly and blatantly robbed.
There was no one my brother could call for help, despite shaking with fear. My mother had the locks changed and prayed she would not lose the flat itself. Criminal gangs were persecuting mentally ill or elderly people, threatening them to sign their apartments over. The rightful owners were then thrown out in the street.
In the UK I had my dream realized — if only lasting three years — I married and had a son. Later, as a single parent on zero-hour work contracts, surviving with my child was all my life focused around. I rarely had energy for others. It was a trial to hear my mother bemoan her lot on the phone, especially when my brother had acted agitated, shouting and breaking furniture. He would occasionally take the jewelry, the CD player, or his camera, and go and pawn them, to buy a smartphone or some other new gadget. Then he would slip into numbness and 16-hour sleep shifts again.
After “a crisis” he would be hospitalized. My mother would phone the ambulance. “Does it concern a mentally-ill patient?’’, they would ask. — “Yes’’.- “Sorry, we are not coming’’ — “Why?’’ — “Because we are afraid of these’’. Then my mother would have to call an expensive taxi. Sometimes I was able to replace this bill and the money for the gadgets. Sometimes I was not.
My brother saw no psychiatrist in between hospital visits. He was assigned his life-long medication and left to his own devices until another “crisis’’ demanded hospitalization. In the hospital, he would be pumped with fistfuls of me pills, dating back to the 1940s, as there was no money for modern developments. When he’d shown he was calm (e.g., “zombified”) enough, he’d be released.
My mother would ask why he kept receding into “crises”. “Because he is not taking his medication regularly’’, the doctors would reply. “
I can’t take them’’, my brother tried to explain, ‘‘the pills make me feel as if I am dying’’ — “Then you won’t get better’’, the doctors said, “And your obstinacy will make it more difficult for those trying to look after you. You see how your mother is struggling, yet you are still being ungrateful. You are one very selfish son”.
Sometimes they would change the medication until my brother had tried every anti-psychotic under the sun. The result was always the same — feeling sick, stopping the pills, going through “crises”— then again.
Occasionally “the crises” would manifest themselves through a more interesting pattern. My mother would wake up to an empty house. Money would be missing from the drawers or the bank. She would ring every instance she would think of — the police, the ambulances, the fire brigade, Interpol (on one occasion). They would announce a search. After 2–3 days there would be a phone call: “I am in Greece’’, or “I am in Holland’’. “I have finished the money and cannot come back. I am stuck at the airport’’. My mother would either send money or get a ticket herself and fly to Amsterdam Schiphol to fetch him. His reasons would always be looking for work. He would have seen a newspaper advert about a job in Greece or thought of an old friend in Amsterdam who could help him find work. On arrival, the job in Greece proved fake, or no longer vacant; the friend in Holland no longer lived there. When back, my brother would collapse in depression and cry and sleep for weeks… until the next round.
Once, when visiting a doctor in the UK, I asked about my brother. I briefly told his story — that no anti-schizophrenic medicine would help him; and he would also reason very clearly when not agitated. The doctor took a piece of paper and wrote a list. “These’’, he said, “are the 5 symptoms of psychosis, 3 of which everyone diagnosed with the illness is supposed to have experienced over a reasonable length of time: hearing voices, seeing things, feeling things, smelling things, and tasting things that do not exist. If you have not had any of these symptoms over a period of time, then you are not psychotic’’.
I read the list to my brother over the phone. He denied experiencing any of these. What if the “schizophrenia’’ diagnosis was wrong? I had a hell of a job convincing my mother to consult a private psychiatrist (affordable in Bulgaria with English money) for a second opinion. She played her everlasting card, that if we “messed with diagnoses, he would never get better’’. I stressed that he had never gotten better in over 15 years, so what were we to lose? I asked old university friends and was given the name of a young progressive specialist at a charity with EU links, meaning the treatment would come free. Even better.
My brother visited this young doctor, who showed him interest and involvement, untypical for your average Bulgarian medical practitioner. She even considered the whole family. She was the first person to convince my mother that by failing to remove us from an abusive environment as kids, she had probably contributed to my brother’s illness. Not an easy thing to swallow, but for mother, this constituted the first step toward accepting the truth. So far, so good. My brother showed the doctor the list of psychotic symptoms I had sent from abroad and bravely suggested that, since he had never experienced these, perhaps, he had the wrong diagnosis, so could he be reassessed?
She cut him short. He was schizophrenic, full stop. There was no need for reassessment. The hospital had said “psychosis”, so it was going to be psychosis. Symptoms — who cares? His “signs of madness’’ — flying abroad, pawning things, wasting money, bursting in anger — what more proof of “being mad’’? Medication did not help? Try another kind. Tried them all? Take a higher dosage. Continually, constantly. For life.
Back to square one. I searched the net, trying to find what was wrong with my brother. ‘‘Schizophrenia’’ — I recognized a couple of its symptoms, but that was it. “Depression” — he had some of that, too. There was something called “borderline personality disorder’’, which he matched quite a bit. Yes, but there was also a “paranoid personality disorder’’, “social anxiety disorder’’ and God knew how many more. I gave up.
As well as the nightmares of his past and the burden of his present, my brother had to shoulder his fears of the future. What was going to happen to him when my mother died? Who was going to look after him? Was he going to end up in the streets, or die in hospital, beaten up by those who hated the mentally ill? I had refused to promise him the security of having him live with me. I refused to turn into “his keeper’’, like my mother. I refused to give him a room, which I would have to clean, shop and cook for him, wash up after him, take him to doctors, make sure he took his medication, endure his anger outbursts, have furniture broken, money missing, have to go to another country to fetch him back. I put a condition: “if my brother would promise not to waste money, to be calm and reasonable, to help around the house and look after himself, I would not mind having him at all. But if he continued on his current behavior, he’d better forget it’’.
The biggest regret of my life.
My mother piled pressure on me, trying to emotionally blackmail me with guilt. She told me how my brother, worried that he would be left alone after her death, said that he intended to climb up the mountain in winter and let himself freeze to death. This was supposed to force me to promise to take him to look after him. “What are sisters for?’’
I still refused. I had just about dealt with my past, or at least, managed to function in spite of it; I had a young son I looked after alone; I could not shoulder the responsibility of having “another child’’ on my hands, nor was I prepared to live in stress for the rest of my life. I looked forward to a peaceful old age — I had to have that hope. Why should I be the only person responsible for my brother? I would continue to help my family with money (though I begrudged it, as it could be spent on my son), would not refuse any practical favor within my ability, but did not promise to take the responsibility to be ‘‘my brother’s keeper’’.
Changes must have been taking place in my mother’s thinking. One day she woke up doubting (!!!!) that my brother was being properly treated in Bulgaria. She also questioned the “schizophrenia’’ diagnosis because some of her friends had said my brother’s thinking was very logical and clear. She telephoned me with the request to help them move to live in the UK so that my brother would be reassessed and treated there.
Wasn’t this God, or what?
I did not mind helping. I was glad that finally, change was taking place. I helped find them an apartment to rent, bought their tickets, helped buy some things of first necessity. Then I started the lengthy process of finding work for my mother (her pension was nowhere near enough for UK prices) and getting my brother through the processes of accessing medical help and, why not, securing a job himself.
It was a hell of a time. My mother made me go on dozens of websites and submit dozens of CVs (composed by me) for both of them. Then I had to check the replies, which were 95% negative. My mother phoned me every couple of hours to check what I had done and not done, to ask if she had been invited to interviews. She would not understand that no company advertising on the net would take someone of 70, who spoke 5 words of English and understood zero, to work for them. At last, a friend of mine agreed to have her clean their house once a week and then recommended her to other friends. Within a month she had about 4 families with weekly cleaning slots — as much as she could manage. Only then did she admit that she was not suited for a regular job with regular pay, no matter how lucrative the sound.
My brother, though, got interviews, as he could speak English. As well as sending CVs to agencies, I phoned every friend who had a business or knew of a business for him. Then I phoned them for feedback. Most said that my brother had decided not to take the job, or worse — did not show up at the interview. I was furious. To me, he had said he had attended the interviews. I assumed he was lazy, had a “shirking” attitude, and took advantage of all our efforts to help him. Meanwhile, he had told my mother that he did not even have enough energy to take a shower, let alone go to work. He had such a lack of concentration, that he lost the logic of a simple conversation. He had difficulties traveling on buses and was getting off at the wrong stops because of the “complete muddle’’ in his brain. He had mentioned nothing of this to me. “You never asked him’’, my mother said later. Of course, it was all my fault.
After 3 months on a waiting list, my brother got an appointment with the National Health Service psychiatric team. I went with him to give the doctor “another angle’’ on the story. The doctor listened to us and took copious notes. I asked if my brother could be offered counseling, esp CBT, as I had read. The doctor said “no’’, failing to give a reason. I asked again, trying to justify the request. The answer was a second adamant “no’’ — with no explanation. I left it at that, knowing how much the current government was starving mental health of funds — deliberately. I had assumed that, during subsequent appointments, my brother would be given questionnaires to fill for each existent psychiatric condition, to establish what exactly he had.
Nothing of the sort happened.
3 months later my brother received a letter. The psychiatric consultant services were discharging him, after only three appointments, with no diagnosis. He was not schizophrenic, they agreed, but they did not know what he was. They were not bothered to investigate further and were sending him back to his personal doctor. No questionnaires, no ticking boxes with symptoms, or crossing symptoms out. The adjective “calm’’ frequented across the page. I guess, had he been “climbing walls’’, they may have kept him on their register for longer.
I found it hard to believe. A second country, a second attempt — nothing. Not even a ‘‘wrong’’ diagnosis — just a “zero’’ diagnosis. I guessed it was all (again) down to me.
I went back to Google Almighty, researching charities and NGOs offering free counseling to people of lower social status. We considered private psychiatric care, but the fees of £250+ a session put us off. Private counseling came £50+ an hour — again a lot. I asked my brother if he would consider online counseling, since this came cheaper. He refused.
I phoned the NHS mental health service “Living Well”. I was turned down. My brother did not fit their criteria, as he had been under a consultant; it was up to the consultant’s practice to offer him counseling. Plus he was too ill for them — they only dealt with people with “mild’’ depression. I tried another charity, which turned me down because my brother was not under a consultant, but only had a personal doctor. He was “too well’’ for them as he smiled and talked. Then I phoned the biggest UK mental health charity — MIND. I was told that “free counseling’’ was not something they offered. I was tempted to ask, “Then what in hell do you offer, if not the most basic and most needed service?’’, but abstained — I was just going to upset myself with that. At one point we were referred to a good place, which seemed to have everything my brother needed and even proposed a care plan for him. Until registration time. It was a charity with resources for the homeless only. My brother had an address. The end.
I was not giving up. I resolved to take my brother back to his personal doctor and ask him to pursue another psychiatric route, explore another diagnosis, try a different medication. But it was a half-term holiday, so first I planned to take my son on a 4-day holiday in Austria, as a 13th birthday present.
Austria or not, I could not stop replaying the dilemma in my mind. I was going over and over past conversations, trying to determine what had gone wrong. Then I remembered how the psychiatrist refused to give my brother an anti-depressant (on my asking), because third generation SSRI may trigger a “manic’’ episode. Until then I had thought of “mania’’ or “manic depression’’ as triggering ideas of grandeur — sufferers thought that they were God or the Saviour of the world. My brother had always considered himself the opposite — the humblest and least — so checking out “mania’’ had never even crossed my mind until then.
THE RESOLUTION
I googled “bipolar disorder — symptoms’’. Before my eyes spread a clear precise description of my brother’s exact condition — as I’d known it for years.
- depressive episodes — low moods, fears, sleeping for many hours
- manic episodes — agitation, irritation, anger outbursts, loss of sleep, money-spending sprees, urge to realize new ideas
- fluctuating weight
- extreme tiredness ……
- difficulty concentrating ……..
- difficulty remembering things….
(What are the signs and symptoms of bipolar disorder?
It was all there, framed by its cyclical nature, which for 20 years, had unbelievably evaded me. Staring at my phone I realized that we had missed it — me, my family, and everyone else around me.
Nobody had mentioned bipolar, not even people who I knew had bipolar themselves. My Christian “brothers and sisters’’, who for years had been throwing my brother out of their houses each time he created “havoc’’ when visiting, not once had said: “rather than throwing this person out, let’s get together to investigate how to help him’’.
A “friend’’ I knew had disappeared from home to be eventually found by a river (for bipolar reasons) not once suggested that my brother could be disappearing to other countries for a similar reason.
Doctors, undoubtedly, were crap, everywhere. What about the rest? This was not even Bulgaria. “Bipolar’’ in the UK had been known and diagnosed since the 1960s. People knew about it. I had heard them talk about it. Why did nobody suggest it?
Now I knew that on my return from abroad I was going to take my brother to his personal doctor, demanding to finally consider the correct diagnosis. I was going to demand he was put on Lithium. Even I knew that Lithium was the staple for bipolar — probably the only drug my brother had never been forced to try.
We flew back to the UK on Monday evening. On Tuesday my mother came to my flat, saying, “Your brother has disappeared again’’. I did not think much of that — perhaps he was on one of his “trips’’, so wait a couple of days for the phone call. There was no call. No money had been taken either.
I rang the police, reporting my brother missing. They prepared and publicized a report with his description. This was picked up by the British Transport Police, who visited us on Saturday, to tell us that there had been a fatality at a Birmingham train station the previous Monday — the same night we returned. 5 days ago he had stood in the middle of the rail tracks, waiting for the train to come. The authorities had held on to him until he was claimed. There had been no way to identify him.
THE LETTER
For 3 years now I have been sitting on a sofa, staring at a TV I cannot see, trying to make myself breathe, though hell knows, I see no point why.
I keep going over the depths of my mind, trying to reconcile the ‘‘what ifs’’ with the “yes, but’s’’ and cannot stop blaming myself.
Because now I know.
Now I know exactly how to look after you, how to be “my brother’s keeper’’. I now know that I should have become “my brother’s keeper’’.
What the f*** did it matter that the whole world had failed you if I could have been the person to save you? All you had to do was wait for 4 days.
Now I know exactly what I should have done.
I know that you needed a second mother to give you a second childhood, full of everything ours failed to provide us with — tenderness, a listening ear, reassurance, kind advice, encouragement, protection. I could have given you that — I have had some experience with my own son. If you needed to become my second child, then so be it. I would have saved your life. And yet — I had made an informed choice not to. I had been too bent on my own comforts, following my own agenda.
Isn’t it futile to “try and gain the whole world, but lose our own soul’’? Did I not lose you in the desperation to cater to my own comforts and interests? And saving you would have gained me my soul…
I go back in memory and cannot believe the way I used to think of you — not as a friend to share my life with, but as a burden, a problem, a trial other people had been spared. How could I have been so blind and so wrong — so blatantly, madly blind and so wrong?
Yet come back, come back to me, for I do repent of my choices. Only come back, and you will see us all changed. To us it would be a privilege to have you back — you would be our lives’ guest of honor. It would be a privilege to take you to my home, care for you, monitor your treatment, see you get better. Because you were going to get better and “in the darkness we would have seen a bright light’’.
Death makes everything clear. It is the catalyst through which we see truths hidden from us in the ordinary course of day. It is dark glass, turning transparent; rain, splashing the dusty windows, inviting the sun. Too late.
The biggest paradox is that I now would very likely be inflicted with the same bleak future I refused to save you from. When my mother is gone, and my son — grown up, I would very likely find myself alone. Failed relationships and the state of the world have long stripped me of the hope that there would be someone caring to spend the rest of their life with me. I would probably end up a lonely old woman, in a flat with a cat, repeatedly waking up to the realization that I had been given a friend, yet screwed it all.
One day, obviously, I will see you again — you, and our dad, and our mum. We’ll all be together again, free of ignorance and misunderstandings, free of the compulsion to protect ourselves. We’d be free to understand and love each other as we should have done always.
If only I did not have to wait for so long. Life can be very tedious, indeed.
Merry Christmas — till I see you in heaven.
xxx
