Thoughts From Brum

This is to relate my experience of having ME/CFS, Chronic Fatigue Syndrome, and my recovery, with reference to my Buddhist practice. So first going back a bit to look at the context of getting ME: since reaching pension age and retiring from my various part-time jobs (Councillor, Interviewer, Receptionist/Librarian), over 10 years ago, my life continued to be something of a busy juggling act. I started teaching Yoga, became a trustee of a local charity, as well as regular swimming, long walks, meeting friends, family activities and, after getting divorced, keeping up with a new partner who unhelpfully lived 150 miles away on a boat. My Buddhist teacher at that time, Aloka, was often telling me I was doing too much and should simplify my life. Then 3 years ago at the end of 2014 I had the ‘flu, from which I didn’t really recover for at least 2 months. After that I decided I’d better cut down on some things (keeping hens and some of my yoga classes).

Then early in 2015 I had the strange virus which I’d had occasionally for the last few years, usually after being particularly busy. It would start with a severe headache and dry throat for about 2 days and then leave me feeling exhausted for several days after that. This time the exhaustion didn’t leave me, although after a few weeks I did manage to celebrate my 70th birthday with a big party and a Ukelele band, which was great, even though I was completely shattered for a week afterwards. I was very happy that my teacher Aloka had managed to be there, which was just a few weeks before he died. My doctor was unable to find anything wrong with me and had no suggestions, so after 3 months of feeling continually tired I visited a therapist who told me I had ME. It can be described as a physical condition with a neurological element.

A close friend told me about something called the Lightning Process which had cured her daughter after she’d had ME for 20 years. But I was discouraged from trying it, partly because it sounded very expensive, and partly because my therapist said it only worked for about 80% of people who tried it, and if it didn’t work they ended up in a worse state than before. Still I was determined to recover somehow so I tried various things recommended by the therapist: Pacing, Massage, Detoxing, EFT, Tapping, DVDs, webinars, visualisations and guided meditation. Some of these helped initially but nothing worked in the long term. I had so little energy then that just washing, dressing, cooking and washing up was about all I could manage in a day, although I did keep up my regular meditation practice. On a good day I might manage the five minute walk to the shops or have a friend to visit, although even talking for any length of time was exhausting.

After about a year, in 2016, I joined the Birmingham WCF group. It was fairly new and had started just the year before. Before that I had belonged to two other Buddhist organisations, in each case leaving due to feeling the need for a Buddhist teacher. The open and inclusive nature of the WCF was very attractive and I felt at home from the beginning. I particularly liked the fact that the founder of the organisation, John Crook, was a poet, as well as an academic and an adventurer. The words of the puja that he wrote and which we recite at our meetings are very beautiful and inspiring, with their many evocative images. When I felt well enough to get there the WCF group was like a haven of tranquillity amongst the fear and anxiety that come with CFS. And during that time the caring, love, and kindness that I received from friends, family, my yoga teacher and the WCF group kept me going when the future stretched out bleak and lonely and seemingly with no end in sight. Simple friendliness like talking to someone on the phone such as a bank clerk or a receptionist could cheer me up for a long time afterwards if they were kind and helpful.

Another thing that helped was watching Tara Brach videos on Youtube. She is an American Buddhist teacher, and her talks were full of compassion as well as humour – lots of funny anecdotes to illustrate a point. What she taught was cultivating acceptance of what is, using an acronym RAIN: Recognition (that there was an emotion such as fear), Acceptance (that that’s the way it is right now), Investigation (bringing a kind attention to it) and Not identifying (by offering love and compassion to the suffering ‘small self ’, thereby coming to identify more with the awareness that’s relating to the small self). So while I was never able to fully accept the draining exhaustion and isolation, the process of accepting the situation and investigating the accompanying feelings and offering them kindness, this in itself made the whole thing more bearable; I was able to take a step back from the anxious self and see a wider perspective. It is a similar process to the four Tasks, based on the four Noble Truths, as outlined in his talk on the WCF website by Stephen Batchelor.

At the end of last year a third person told me of her success with the Lightning Process and I decided to investigate it more fully. It was a 3 day course with the coach and as much follow-up support as you might need. There were elements of NLP (Neuro-Linguistic Programming), positive thinking, self hypnosis, and modelling (based on studying the mind-set of people who had achieved outstanding success in various fields). For me what made the process work was having face-to-face contact with an enthusiastic coach who had complete belief in the effectiveness of the model and was able to convey that belief to the practitioners. We were encouraged to set ourselves a goal for the first day, something a bit more demanding than what we thought we could do. So I went for a drink in the pub with my friend Mary after she drove me back from that long first day. Then I got on a bus for the first time in 2 years to get back home. I can remember walking back from the bus stop and realising I’d not worried about my energy for at least 5 minutes. That was like a turning point, finding that I was actually capable of doing more than I’d thought. By the end of the 3rd day it felt like a switch had been flipped in my brain and I was feeling cautiously optimistic. That evening I was able to walk all the way round our local park, a groundbreaking achievement! I think that this Process would work for anyone with ME as long as they were prepared to believe in the possibility that this Process might work for them.

Since then I have continued to do more and more of the things I’d missed for such a long time – walking, swimming, going out in the evenings, and particularly, going on retreats. But still for the first few months, although I had a lot more energy I would sometimes get headaches after I had been especially busy. I wasn’t sure if the extra activity had caused the headache or if it was due to anxiety, often subconscious, about doing too much. Then in June on the WCF Koan retreat I had an interview with Simon and talked to him about it. His advice was that if a headache came, to just accept it as being ‘that’s how it is at the moment’. I had tried that approach before, but somehow his telling me that made all the difference; soon after that retreat the headaches stopped.

Now I don’t have ME any more, and no longer worry about ‘overdoing it’, knowing that if I get very tired I’ll be ok after a night’s sleep. However I have finally simplified my life as Aloka had long ago advised me to do. I am sometimes content to have days just pottering about, not feeling I should be doing something useful. The experience of that recovery has impressed on me the subtle but enormously powerful effect of the mind on the body: what finally made the difference was finding the confidence and the belief that I could do the things that I wanted to do. Also, looking back on that scary time I can say that those two years taught me the huge importance of simple kindness. Whilst I had ME, when I felt continually on edge and anxious, it was the only thing that made life bearable. So I can agree with the Dalai Lama and say “My religion is kindness”. Since I joined the WCF group we have been studying ‘Training in Compassion’ based around Norman Fischer’s book of that name, and that feels very appropriate. The fortnightly meditation and interesting discussions that we have are definitely something to look forward to. The group was initially quite small, but has been gradually growing and now we often have a healthy eight or nine members at the meetings, and long may it continue, on its two wings of Wisdom and Compassion.