I had intended to wait until I had finished Tim’s book before posting about it, but yesterday something happened that made me decide that I had to post sooner. I opened page 251 and Tim mentioned words from his favourite worship song ’Whatever may pass and whatever lies before me, let me be singing when the evening comes’. That was the first worship song which we sang when we joined our church; the first time that I heard Nigel sing again, albeit quietly, in 18 months; and the first song at church yesterday morning.
For those of you without faith, please do not be put off from reading this journal. I can assure you that Tim’s faith is not thrust at you: it is a cornerstone in his life and subsequently just sort of pops up in conversation about the sighting of a beautiful bird or about his pleasure in creation or in explaining his acceptance, not resignation, of this cruel disease.
It is a book which is giving me such an insight and I really feel everyone should read it. I wish I had read it whilst Nigel was still alive. It would have helped us both, although Nigel’s physical presentation differed from Tim’s as he was diagnosed with CBD not PSP, and with a currently unspecified dementia. Donating his brain will provide that answer.
I was only 5 pages in when I was grinning. Nigel would have so loved Tim’s description of his legs masquerading as tree stumps and by page 7 I was giggling about the non-use of bed rails and not wanting to take any notice of the ‘little sensible voice’ in his head knowing full well that he would get an earful from Trish. It sounded so like our home during Nigel’s illness. I continue to read, jotting down the page numbers where words mean something special to me and which I am sure will help others. I am currently up to 28 pages to reread and copy out. This journal has made me so sad in places, but has then raised me again as I enjoy descriptions of his energy battery levels only showing one bar, counting the bobble wobbles, appearing on the shopping channel, words becoming ancestors and slothification, all of which would have so appealed to Nigel. You will have to read it yourself to find out about these in more detail.
I would like to thank Tim for his honesty and the effort it must have taken to keep this journal, and to thank Trish for supporting him, organising sufficient ice-cream parlour visits and understanding Tim’s wish to continue reading and contributing to this forum which is so appreciated.