Experience 38 years in the Soka Gakkai in five parts-- Part 1

Part 1 (Parts 2-5 are posted below)

I started chanting in 1979 and was in the SGI for almost 38 years. I have now been out of it for 10 months and feel ready to express in some detail how my sanity and dignity finally managed to triumph over almost four decades of institutionalized abuse, cruelty and perverse thinking. To convey the essence of the reasons for my ‘reverse epiphany’, I have chosen to concentrate on those issues which conspired to bring my many years of frequently repressed doubt and fear to a head: those factors which helped me spring free from the clutches of the monster which is SGI.

In 2001 I was diagnosed with severe rheumatoid arthritis, a so-called ‘incurable’ autoimmune condition of unknown etiology that can cause great pain due to inflammation of the joints. It can also destroy cartilage and even bone. On the day of my diagnosis, a registrar told me that the disease was already so advanced that it would take all they could do to keep me out of a wheelchair. Within a matter of months I had gone from someone who walked, worked and had a full life to someone who had to hold onto the furniture in order to get round a room. Unfortunately, I got the disease in its severe form and the condition spread like wildfire throughout my body, even though I was put on very strong drugs, including steroids. Within 18 months of the diagnosis being made I had to give up work and frequently slept between 14 and 18 hours a day, due to a combination of pain, fatigue and depression. In this reduced state, I became very dependent on other people, including SGI members.

Shortly after being diagnosed, I attended my monthly SGI district discussion meeting, hoping to find solace in sharing my dilemma with fellow members and guests. In the process of talking, I became emotional and broke down in tears. However, rather than being embraced and supported by the other participants at the meeting, almost to a person they remained stonily silent. My outpouring of grief, confusion and fear was met with icy, embarrassed stares, and the women’s district leader looked furious with me. When I confronted her about her reaction after the meeting she said: ‘It’s OK to talk about what’s wrong with you, but not to cry. It could put people off.’

Suddenly finding myself riddled with pain and having tremendous difficulty in the most basic things such as standing up, walking and lifting things was a very frightening experience. At first I was completely overwhelmed and, in tandem with the progression of the disease, I spiralled down into a state of extreme anxiety. At the time I was living in a second-floor apartment in a building that had no elevators. On 27th September 2004 I knew I had walked up those stairs for the last time as I simply didn’t have the strength or mobility in my legs to do it again. I did not know it at the time but I would end up spending just over a year stranded in my apartment, only leaving it every few months to attend a hospital appointment when I would be carried downstairs by a couple of ambulance drivers, taken to the hospital and then brought home and carried back upstairs again. I saw four seasons come and go from my living room window.

In the autumn of 2005, having been marooned for 13 months in my apartment, I was finally able to move to a ground floor apartment. Shortly after moving in, with my mobility having become almost non-existent, I was issued with a wheelchair and the rheumatologist I was seeing at the time referred me to orthopaedics where I had extensive X-rays taken. When the results came through, I was told by a very serious-faced orthopaedist that I needed both my hips and both my knees replacing. This was a lot of information to absorb in a single sentence. ‘Will I be able to walk if I have the operations done?’ I asked him. ‘That is our aim,’ he said. I decided there and then that it was also mine. The prospect of these surgeries was daunting to say the least, but I was in a great deal of pain as the cartilage in several of my joints had eroded to such an extent that, in some places, bone was rubbing on bone. I wanted to be in less pain and to walk again. I reasoned that my only real choice was to submit to the series of suggested operations that would take place over a period of several years. However, my desire to walk again was so strong that I was willing to do whatever it took to achieve just that.