Sonnet for Daina

We say goodbye, as April turns to May,
but not forever, only for a time.
The seasons, months, and years all fall away
we reason so: remembered days in rhyme

Are fondly summoned to the heart and mind
the children’s laughter, party games and song;
and momentarily it seems unkind
to recall past joys after they are gone.

Still I believe, outside of time there lies
a whisper, and an answer, and a prayer
that nothing made of love is born, or dies
but lives within, beyond and evermore:

We walk in valleys, shadowed for a while
flooded with sunlight, soon — its warmth, your smile. 

In Memory of Daina Mason

It is with a heavy heart that I write of the loss of my beloved aunt, Daina Mason, who died from Motor Neurone Disease last week. She inspired me in so many ways: with her determination to write her book, and tell her story to help others suffering from the disease; with her refusal to wallow in self-pity, even though it would have been understandable; and with her smile, which greeted me whenever I visited her.

In December 2022, I published her memoir, My Life with MND, which tells the story of her diagnosis, and how she adapted to life with this cruel degenerative condition. The book became a bestseller, and Daina was tireless in promoting it, donating all of her royalties to the Motor Neurone Disease Association, in order to help others living with the disease.

Daina was recognised for her superhuman fundraising efforts and indomitable spirit with a BBC Radio Cumbria Make A Difference Award last September. And this is what she did: she made a difference. The book has been bought by doctors and medical staff in an effort to learn more about how patients experience the condition, and how to improve their care.

On a more personal level, Daina made a difference to me, with her kindness, generosity of spirit, and sense of humour. Here she is in her own words, discussing life with the disease:

Harder to talk about are the emotions you go through. They range right through from the top to the bottom. The day you get the diagnosis, you are in a state of shock and disbelief. Once you get over that bit, you think, “right, let’s take a day at a time and enjoy what I can do for as long as possible…”

I’m now at the stage where I can’t do much of anything. Thank goodness I’ve got my device. I keep my mind occupied with card games and reading books on the device… My little grey cells went to work again, and I came up with the idea with a little help from my neighbour to write this account of my journey with MND. My niece publishes books, and she said she would publish my story, and use it to help raise awareness, and also raise funds for research, as without the research there will never be a cure for what is a very cruel disease.

My Life With MND is available from Amazon, and in local bookshops and libraries throughout Carlisle and Cumbria. I will continue to donate 50% of all royalties from sales of the book to the Motor Neurone Disease Association.