First published in Medico Friend Circle Bulletin: Issue 363-364, January-February 2015
I am here to try and write about my experience with the fond hope that it will help parents, doctors and caregivers understand what their loved ones, patients or wards are going through. It will not be a pretty picture. What people with health issues go through has never been fully described in any medical textbook, cannot be mapped through clinical tests, is not subject to rational thinking, and does not limit itself to the label flung at the patient in the form of a diagnosis.
Health depends upon how the authorities or experts understand it. If the understanding is correct it culminates in health and happiness. If the understanding is partial or improper suffering spreads like the plague. If the understanding is shaped by forces that have no intention of ensuring health, suffering becomes the norm. If the intention is to profit, suffering is eulogized and people feel proud to be classified on the basis and extent of their suffering. At such times people should do well to fend for themselves and take health into their own hands, keeping away from the 'experts'.
Can we separate health issues on the basis of which part of the body is affected? If a patient has cirrhosis of the liver can we say that only the liver is sick and the rest of the body and mind continues to be in an optimal state? To understand this one needs to look at the patient as a whole and develop interest in what s/he narrates in the consulting room. “Oh I feel so depressed doctor. I am so anxious about what the future holds for me. Can you cure me?” Not one word about the liver. The patient is more interested in the ‘me’.
That reminds me about what a psychiatrist told me when I had gone to him un-chaperoned and narrated to him my problems. “Who is it that is telling me that ‘I have lost my mental balance’? Is it the mind itself or is it something behind it?” He went along to tell me that this was often a discussion in psychiatric circles.
I used to be normal. I was quiet and observant as a child. I had a sense of humour and friends would be wary of my pranks. I could also withdraw from the world as I dipped into books I loved to read. Even as I was growing up I noticed qualities in persons that I did not approve of. I hated selfishness, greed, meanness, cruelty, disrespect for elders, and the lack of fellow feeling towards living beings. Negativity repelled me and I remember being protective towards people subject to it. Physically I used to suffer from bronchial asthma which confined me to the local library in winter months. I had a tendency to catch a cold.
My parents tell me I was extremely healthy at birth. My favourite sport was rolling off the bed and playing on the floor. Even putting pillows all around me did not help and no one had ever heard me cry from the fall. I continued to be healthy till I suffered a severe bout of green diarrhoea. My health deteriorated after that. If you read the DPT vaccine package insert green diarrhoea stands out as a side effect. So does bronchial asthma.
As my father was a central government employee medical care was not a problem. I was medicated with whatever the doctor suggested. I have also been vaccinated against smallpox, polio, typhoid, cholera and tuberculosis, either in hospitals or during vaccination drives in my school. My health did not improve despite the costly tonics I consumed regularly. The doctors said my immune system was weak and thai I had probably developed asthma because I was afraid of school. What a load of crap, I remember thinking and gave Dr Ghosh a piece of my mind. He was taken aback and never raised the subject again. Later I used to guide the doctors of the Air Force Hospital in the base my father was posted in on exactly what I was going through and they developed respect for me. They used to encourage me to take up medicine.
My vaccine injury just as I was readying myself for a career in medicine plunged me into a crisis from which I can never recover completely. I was affected at all levels possible. Normally when you fall sick you strengthen your mind and resolve to get well. In my case the mind itself had gone haywire.
I have written ‘affected at all levels’. How do I describe it? I was sick from the night I was given the shot which I later learnt was the Measles Mumps Rubella (MMR) vaccine. I tossed and turned in bed, had disturbed dreams and woke up into a new world. Everything seemed strange around me. The sunlight looked surreal, the sounds seemed to come through a medium that twisted them, time seemed to have lost meaning, and the only thing that was real was the thought that something was terribly wrong with me. My skin became overtly sensitive and I avoided all touch. I developed headaches so severe I got relief only from banging my head on the wall. My eyes ached as I looked at the light and I developed the habit of looking sideways at things. My eyesight deteriorated rapidly. I faced body coordination problems and felt tremors all over causing me to contort my body for relief. My intestines acted strange as if a constant churning was going on in it. I developed a habit of walking on my toes as my soles had become extremely sensitive and painful.
This was just the beginning. I started experiencing memory problems. Nervousness and panic attacks followed. Public speaking was my forte but I stopped as I broke into a cold sweat whenever I attempted it. I used to stop mid way if I pushed myself as I would lose thread of what I was saying. I felt extremely tired all the time as if I had just run a marathon. One night I awoke with a start to find that my legs had gone cold. What was creepy was that the coldness started progressing upwards. When it reached my heart I sprang up from the bed and screamed. My worried parents did not know what to do. I was taken to a doctor who told them it was just an allergy and gave me an antihistamine. I slept and when I woke up in the morning I was again cold all over and thinking about suicide. This became a regular phenomenon.
I developed nightly diarrhoea. It was profuse and exhausting. I started dreading the nights even more than the days. I had turned a recluse and my friends were full of questions for which I had no answers. I lost weight rapidly and soon I was a skeleton. I could sense a throbbing sensation in my chest as if someone was squeezing a gland there and it was getting smaller by the day. Doctors said that was the region of the thymus gland but not to worry because it was important only for children. Later I learnt that the thymus was a very important part of the immune system and that it shrunk only in populations that had embraced the modern civilization. In tribal and others who stayed away it retained its size and function even in old age.
I developed a pain in the region of the spleen that made me bend double and roll on the ground screaming. I had a peculiar cold accompanied with violent sneezing. I used to sit beside a pan with my hands on the head to ease the pain as a steady stream flowed from my nose. The doctors tried to help but held back whenever I uttered that dirty word, ‘vaccine’. They said it had nothing to do with any vaccine I was given. When I persisted I was told that I was suffering from obsessive compulsive disorder. They said if I persisted with the ‘vaccination theory’ I would go to a mental institution. I knew that I was being threatened.
My descent into hell continued. My memory problems and panic attacks became worse by the day. I developed a fear of traveling as I would have memory lapses. My mother always slipped a note containing my name, address and contact numbers into my pocket if I had to travel. When I traveled by train the sound of the train’s whistle seemed to enter my innards and I used to panic with a great menacing emptiness descending into me. When I used to get down at my destination I often could not even remember my name let alone know why I was there in the first place. I used to sit down somewhere with my luggage and instinctively rummage through my pockets for the note. Often before I could get to that the person assigned to receive me would have arrived. Nearer home I would wander and then suddenly find myself in a place without any idea about how I got there.
What troubled me the most was the way my thoughts betrayed the strong value system that has been the back bone of my life. I hated negativity and here I was full of it. I would shake my head vigorously to throw away the thoughts that assaulted me. I would visit temples during my wandering phases and lie prostrate before the idol begging to be rid of them. Had I not read in homeopathic literature that toxins and heavy metals corrode the mind as well I would have either given in to them or built a fire and cremated myself to escape the trauma and humiliation.
I lived from day to day. My body seemed hell bent on destroying itself. A severe burning sensation all over the body made my life miserable. I was attracted by fire and had the impulse of jumping into it. When I rode my scooter I used to look at the vehicles rushing towards me and fight off the impulse to crash into them. The all pervading pain that persisted relentlessly made me scream and throw furniture around. My parents told me I groaned and sobbed all through the night. I had nightmares about being pushed into a coffin like room from which there was no escape. Every night I would go to bed hoping that the morning would not come.
What kept a part of me sane even as I was on a roller coaster trip to the land of extreme anguish and pain? It was my memory of being in control prior to the shot – an escape route denied to most infants and children vaccine injured before they come to grips with the world. Despite my memory problems, anxiety and panic attacks, and bipolar disorder I could still manage to read and write and I clutched to this small window of opportunity that helped me occasionally grasp a lung full of air. I pulled these abilities together to read up on homeopathy to help myself and also launched a full scale campaign to warn others of the dangers aided by immunologists and doctors who supplied me with their research papers, findings and experience.
I was a lunatic yes, but could I be compared to the system that pushed me into the state? Even as I was going through such a terrible experience my whole effort was directed towards warning others about the procedure that was causing harm. My heart ached for the children who were experiencing what I, as an adult, was unable to tolerate. Can we say the same thing for those who push such procedures for the sake of profit? What kind of a mentality, what kind of a heart, and what kind of an upbringing do these people have? Are they fit to be members of any civilized society? Do they deserve an iota of the respect they demand? Surrounded by sycophants these maggots feed upon suffering. They are the ones who are insane, not I.
We talk of the increasing incidence of mental illnesses and the need for infrastructure, trained manpower and policies to attend to those who are affected or who will be affected in future. My insane advice would be to consider the many factors lying in plain sight that are causing the spurt in cases and try to stem them so that people are spared the ‘benefits of care and treatment’. That is the best pebble I can offer from the lonely beach that I am stranded in.