Part 5
One of the things I found off-putting about being at the SGI-UK HQ was the strange glazed expressions of long-time members who held staff positions there. Then the course content was shallow and Ikeda-based – a million miles from what I had solemnly signed up for when I joined the organization in 1980. But worst of all was the way in which people were making comments and grinning at me due to my ‘success’ health-wise which was totally, so far as they were concerned, attributable to the Gohonzon. This was nothing new: for the previous few years I had been on the receiving end of some very strange comments. Specifically, I recall one of the members once looking at me with all the starstruck wonder of a Justin Bieber fan, and saying: ‘When you go through a big experience in the SGI, you become a sort of celebrity.’ But by this point the falseness, delusion and insanity of it all had absolutely got to me: I was having none of it.
I was tired of people saying that I had ‘overcome so much’ because of the Gohonzon as it was a total lie. No allowance was made for the reality of my daily life as someone who has been afflicted by a devastating illness. I had never at any point made any claims of having been cured – only improved – yet I was routinely hailed by SGI members as ‘proof of the power of Gohonzon. Had I in fact been cured and freed from continual pain, this would have possibly been less offensive. Sadly, this is not the case: I still have active rheumatoid symptoms (swelling and pain at various sites) on a fairly regular basis and the disease continues to require constant management with medication. More than this, the devastation caused by rheumatoid activity over many years is extensive and permanent.
To sum up: I have pain all the time in my hands, feet, knees and left shoulder; I have to think about every single footstep I take; the destruction in my hands has been so great that all the fingers of my left hand are permanently L-shaped, and I can no longer straighten any of the fingers of my right hand (I consider myself fortunate that, given that this is so, I can still type, but feel great sadness that I can no longer play the piano); I had to have my bathroom completely remodeled at great expense as I can no longer get in and out of baths; I usually go downstairs backwards because my balance is somewhat precarious and I have difficulty in holding onto the banister when trying to descend a staircase in the normal way; I have tremendous difficulty getting both dressed and undressed; as I am unable to touch my feet, I have to use a litter-pick to fasten my shoes; I get bouts of overwhelming fatigue that can appear as if from nowhere when all I want is to be prostrate on a bed in a darkened room; and I suffer frequently from a sore throat. Most poignantly, even the giving and receiving of hugs can be painful. I would like to see how long the grins of those SGI members who have mythologized my ‘recovery’ would remain in place if they had to live a single day in these circumstances.
The reality is that I am as well as anyone could be expected to be if they had had rheumatoid arthritis to the degree to which I have had it, had received the sort of medical treatment I received and had committed themselves assiduously to physiotherapy. It is all the people who helped me – medical professionals, family, friends – who deserve credit for my improvement, not a piece of paper hanging up in a miniature wardrobe. I would also like to take some of the credit myself!
When I came back from the course at Taplow Court, I reluctantly resumed my district responsibility and, even more reluctantly, gave a lecture at chapter level at the end of August 2017. This proved to be the absolute tipping point in my relationship with the SGI: the preponderance of references to Ikeda in the study materials made me seethe. I wanted, first and foremost, to give up my responsibility. But I found myself in a dilemma: the district members would be expecting to get the September schedule in the next day or so and I felt that I couldn’t abandon them without fair warning. So I decided to endure September but let them know as soon as possible that I would be stepping down. However, my real self wouldn’t accept this and, on 12th September 2017, I stopped chanting and left the SGI, having been a member since 2nd February 1980.
It has not been plain sailing since leaving. My health went a bit haywire shortly before leaving and remained so for a while after I’d left before settling down again. It has recently gone off kilter yet again and I am in a great deal of pain. I notice very much that my symptoms are affected by emotion and, as I’m experiencing a great deal of emotional turbulence at the moment, I’m hoping that things will settle down once this phase is over. There are always new ways of helping myself through diet, exercise and supplements and I am always open to making changes.
Before signing off, I’d just like to say that, despite having suffered enormously as a result of being ill, I am now a far stronger person than the lost soul who joined the SGI all those years ago. I have a very definite sense of my own identity – something that was almost entirely lacking when I was shakubukued in 1979. I am both glad and proud to be me. Writing this testimonial has been very upsetting indeed but I felt that it had to be done, to set the record straight and to tell my truth about the SGI. I am so grateful to everyone on this site for your support in my post-SGI life. I know I still have a long way to go in my recovery but your help and understanding up until now has helped me more than I can say. Thank you!
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