The Lada 4x4 gets put through its paces in front of the retreat
Elena, my brilliant interpreter, does an impression of road-kill
Encounter with the priest
Another morning of clear blue skies and sunshine in a landscape smothered in thick snow. The retreat was in the middle of a forest clearing with deafening silence outside. With upstairs bedrooms and a Chapel, there was a cosy lecture room downstairs and a kitchen with chef and assistants specially brought out from Moscow. I had to pinch myself yet again to believe I was in such a beautiful place.
People eventually gathered after breakfast for a series of talks and discussions on problems to do with helping MND patients. Some had brought their other halves and children to spend the weekend there.
I described the set-up in my hospice where we had developed a special interest in MND and ran a joint clinic with a local neurologist. I also talked about symptom control measures, acknowledging the real difficulties there were in Russia obtaining and getting approval for the medications we routinely used. Anna spoke about the ethical principles of patient autonomy, truth telling and fully-informed consent, something relatively new over there. As often used to happen with cancer patients, doctors still do not necessarily tell patients the true diagnosis out of the paternalistic wish not to inflict distress over an illness they cannot do much about anyway.
During her session, one or other of Anna's two beautiful young daughters would quietly sidle up to her whilst she was speaking at the front of lecture room to ask permission for something before skipping happily off again to go out and play. Anna would deal with this seamlessly . Why can't men can multi-task like this?
Anna (right) organises us into small groups
Over the next 3 days, there were other sessions presented on nutrition, assisted ventilation and music therapy. Alisa led us in practical sessions such as a musical version of "pass the parcel" where we stood in a circle and sang a made-up tune to hand over to the next person who embellished it in their own way before passing it on again. In the absence of medications - or even as first-line treatment- the use of music as therapy for symptoms of breathlessness or terminal agitation is going back to how people were helped on their journey out of this life and into the next before everything became so much more medicalised.
In the evenings, there was more voluntary music therapy before bedtime in the form of jim-jam jamming sessions. On the final Sunday morning, a traditional Russian Orthodox service was held in the beautiful chapel with the wonderful liturgical singing which Rachmaninov, whose work I had been involved in just over a week ago back in London, had used as inspiration for many of his choral pieces. Orthodox services last 2 hours but they are fairly relaxed affairs with the congregation is free to take a break, wandering in and out at will.
The whole atmosphere that weekend was one of one big family, all working towards the same goal. It was a real privilege to be part of.