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Sarah and Charles are married, these are their photos – Sarah wrote to me “From one nefelibata* (though I’m deeply conventional in some ways!) to another, this is about me:”
I’m 71 and – reluctantly – retired, not due to age, but due to my health. I was diagnosed in 2019 with myeloma, a type of blood cancer. I’ve been having intensive treatments, including a stem cell transplant, over the last three years and have been in remission for almost two years.
Having been pretty healthy for most of my life, the diagnosis was a shock to me and I was really angry that this happened to me at first, it went completely against my view of myself and my body. After the transplant two years ago, I lost a lot of weight, could barely walk five steps, had no appetite or strength and felt worse than I have ever felt, with a back pain that is still with me and is likely to continue.
My recovery is still ongoing and now I have regained the weight, can walk up to 4/5kilometres, if slowly and my strength and stamina are returning, although my body will never be as it was. I’m often tempted to say if people comment, “it’s not my age, it’s my illness!”
I’m grateful for my love of reading and writing, both importantly filling up the times when I couldn’t do much else.
It’s strange having the knowledge that this thing is lurking in the wings of my days, but my love of life, the natural world around me and my family and friends is more than enough to keep any dark thoughts at bay.
I have been profoundly deaf since I was two and, until I was 17, I knew no other deaf people. I’m very happily married to Charles who is also deaf; we would never have met without being deaf, although his experience of it was different to mine. My silent world is one of the reasons I love the natural world so much; I don’t need sound for that. I’ve always loved being a solivagant (a lone wanderer) in silence, preferably with one of the four dogs I’ve had sharing my life at different times.
I wrote this paragraph about that love for the Sussex Wildlife Trust:
“There have been many challenging times in my life, particularly connected with birth, illness and death. The deaths of my father, his mother and my baby son all in one year – 1980 – was just one of the situations when my ability to be totally absorbed by the natural world was a large part of the healing process.” – and
“Spending time by the sea or on the downs – in silence – is my medicine and it never runs out, it’s always there for me. I feel so anchored by it, that anchorage never leaves me and it is why I will never move away.”
Sarah and Charles made matching offerings to the project. They said this – “We’ve both had to spend time apart, often for health reasons, we always miss each other. Our daughter knitted these for us to keep us company when we’re apart.
*Nefelibata (ne-fe-LE-ba-ta) A cloud walker; one who lives in the cloud of their own imagination or dreams, or one who does not abide by the precepts of society, literature, or art; an unconventional, unorthodox person.
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Phil Pool - Art and Protest 