Touch me I'm sick - Listen and I'll heal
In this paper I cover and highlight some of the main points I make in my book "The Judas Window": My experience with pain, which led to being certified and committed to a mental institution, iatrogenic illness and mood/mind altering drugs; patient rights; the role of doctor, patient and pharmacist; the need for a paradigm shift from the existing medical model (evaluate, medicate, evacuate...next patient please); and why I believe psychologists should not prescribe.
When Kenneth Wilson invited me to speak here today I never hesitated for a moment. In fact, when he mentioned that the theme of the conference was "Touch me I'm sick," the title of my talk, "Listen and I'll heal" just sprung to mind, because my whole story centres around what the doctors didn't hear!
Several years ago I fell off a grandstand, breaking my pelvis in the process. This entailed undergoing a fusion and spending three months in bed. However, when I finally stood up, I couldn't walk more than a hundred metres because of excruciating pain. I ended up under the care of a neurologist who promptly put me onto a fortnight of sleep-therapy. When I left the clinic I was given a couple of bottles of pills with "Take as prescribed" written on them. I did exactly that. Within a very short time I was experiencing all sorts of side effects... mood swings, nightsweats, panic attacks to name but a few. I saw the neurologist every three weeks and told him how I was feeling. He would modify the dosage either by elevating or reducing it, or prescribing a whole new group. At one point my symptoms suggested to him that I was going through change of life so I was referred to a gynaecologist who pumped me with oestrogen every fortnight! This went on for fifteen months, by which time I was under several disciplines with even more side-effects. I reached the point where I became suicidal and was admitted to the psychiatric ward of the Johannesburg General Hospital, where I spent three months undergoing all sorts of evaluations and tests. On the night I arrived at the hospital I was very frightened, but was made to feel very guilty when I asked if my husband could stay and see me settled in. I was told in no uncertain terms that he was tired and shocked and should go home to sleep!
During those three months I was turned inside out like a rag doll by the professor, two psychiatrists and a panel of students who believed my problem arose out of my being the fifth child and "perhaps my parent hadn't wanted me!" I underwent ECT eight times to no avail. I stayed exactly where I was... in a Godforsaken pit of nothingness.
Fortune smiled on me then in the form of a convict who was admitted for a psychiatric evaluation. We were told not to fraternize, but being anti-establishment, I befriended him. In a matter of days we opened our hearts to each other. I believe this was because of our perceived worthlessness and having nothing to defend or hide. He told me the pills were causing my problem and I should stop them. I asked him how I could when I was under supervision. He suggested I run away and that I would be sent elsewhere.
Without thought of consequence or sequel I did exactly that. I ran into a very dangerous place called the Wilds where I was found by my husband and a posse of policemen in the early hours of the morning. Nicky was absolutely marvellous. Totally non-judgemental, only sorry that he had to return me to the hospital.
My reception back at the hospital is something I have never forgotten. I wasn't asked why I'd run away, only told how much trouble I had caused the staff and patients who'd been woken up and asked where I was. In a matter of 20 minutes the Professor had me certified and committed to Weskoppies... a state institution.
Weskoppies was a cultural shock for me in more ways than one. However, I was met by a good Professor who had the intelligence to ask me why I had run away, the integrity to believe me and the wisdom to stop the pills. Stopping them all at once sent me on another whole trip. My personality changed, as did my behaviour and I soon learned what stigma is all about. Stigma is not something you see or touch. It is something that is felt deep down inside one's being. Somehow you are made to feel different. You live on the periphery and know that you don't belong. One soon picks up the us/them mentality, because of the manner in which they treat the so-called misfits and broken reeds of society.
I had to learn the hard way what the "cooler" and labelling is all about in a place like this. I happened to see a young, pregnant girl kicked around by another patient and I went to her aid. For doing this I was struck and thrown across the room, labelled a trouble-maker and sent to this cooler. A room where the legs of the bed are set in concrete, the window is barred and the only companion in the room is a chamber-pot. When I emerged from that room I was compliant, docile and putty-like. Nothing would ever induce me to go back there.
I spent three months inside Weskoppies and I believed that I'd never get well. I felt so strongly about this that I gave away all my personal belongings and went outside to curse God. I was so busy that I fell over a rock, knocking my head and knee in the process. When I stood up, however, I felt as if my scalp was being peeled back and a physical weight was being lifted off the back of head. In that moment I knew that I had a daughter getting married and that I had her wedding dress to make. I went off to the Professor and with one look at my smiling face, he said I could go home. No psychiatric tests, only the proviso I see an outside psychiatrist. I did. He prescribed more pills . When I questioned them he said he was taking nine of them himself and they were perfectly safe.
In a matter of weeks I was back to feeling suicidal. I called the psychiatrist and he said if I didn't continue with the medication he would have me re-committed. I did the only thing I could. I stopped the medication without telling anyone. I went through a dreadful time on my own. Three months down the track I had to have a lithium test and I had to come clean that I hadn't taken the medication and that I had got better on my own. An ugly scene erupted, but I walked away victorious. When I left there were no stepping stones or bridges. I had to find my own way back. All I carried out of Weskoppies with me was anger, guilt, self-hatred and no self-image whatsoever. I describe my journey in my first book "New Image People - Beyond the Barrier".
After this my life took interesting twists and turns. My nephew was travelling in America, where he met up with a young benzodiazepine researcher from Australia. When this young man returned to Australia I started corresponding with him. He suggested I forward my book to the Professors he had met on his travels in England, Wales and the States.
The feedback I received was staggering in volume as well as content. I found conclusive evidence that my whole experience could have been avoided if the doctors treating me had known more about what they were prescribing in terms of risk versus harm. Keep in mind, I'd lost two years to mental-illness, when all I suffered from was iatrogenic illness, i.e. illness brought on by the treatment! I was livid. I wanted to sue.
`At this point John Kehoe, the internationally renowned author of "Mindpower" entered the picture. He read "Beyond the Barrier"