My fingers are now bent such that the top most part of them point down to my wrist, in resting position. Ersin from the fish and chip shop runs out to say hello. He tells me about his cousin who has been bedridden for 12 years with a neurological condition. He takes my hand and straightens the fingers. Travelling in the van, Sebastian tries to make my fingers straight, wishing they would stay that way. During our picnic in Hyde Park he can see I am having trouble picking up some food, so he comes over and puts the food in my mouth; how it is now. The voice recording is now completed and I have listened to my voice; it has worked well. I had to record 1600 phrases and sentences, mostly from well-known stories such as the Wizard of Oz. When I was at number 20 and could not get it right I felt we may never get there; but we just kept at it. I was helped by a volunteer from the hospice, Louise, and Sarah. They did a great job in clicking the mouse at the right time and encouraging me.
The recording process reminded me of long-distance runs or hikes, or learning massive list of vocabulary in French and German at school.Visits from friends and conversations with family remind me of what normal life is, and how hard is it is for our children and Jane. I enjoy going to the Steiner school and speaking with the parents, watching the children run out of class and seeing the beautiful surroundings. During our visits to Hyde Park I was reminded of the diversity of our cities; turbans, hijabs, roller-disco, Japanese, American, well everyone. It’s a pleasure to sit and watch Sebastian play golf on our front garden; he’s got three holes and there is a whole set of rules he has.
Going to Pret A Manger in London brought memories of breakfasts before business trips at Heathrow and of snacks at Russell Square before visiting the hospital during the diagnosis stage.
The weakness which comes with this disease can be quite shocking; on some days I have very little energy. Some evenings I wonder if I will have the energy to do it all again another day. I am finding it harder to talk; I don’t really have the strength to speak my beloved foreign languages too well. I always enjoyed speaking them. It really hurts. At the same time I am trying to get a project off the ground celebrating regional accents (web/app/social experts needed!).
In is documentary ‘Requiem for the American Dream’ says that one way a society can be in judged is by the solidarity shown amongst its people. Very true.
My carer says it doesn’t matter what Gok Wan says about a fashion faux pas; 75 million Germans can’t be wrong.