In memoriam of Fiona Pirilla
18 Apr. 2023
Fiona and Mamas
Fiona and I met when we both responded to a meeting set up to see if a patient support group dedicated to MDS was needed.
During this meeting Professor Mufti gave an interesting talk about MDS. At the end he asked for questions or comments, the microphone came to me and I said to the Professor that I was more than the sum of my blood work, that’s why a patient support group would be a good thing. Fiona came and found me in the lunch break and told me she liked what I said and agreed. There began a fruitful friendship that benefitted us both over the years.
The meeting ended with a call for volunteers to form a committee to get the support group off the ground. Fiona and I both volunteered. One other woman called Sharon volunteered too. Committee meetings were challenging affairs. Discussions about what the support group should do took up lots of time, as did setting up all the policies and procedures necessary for a charity. Finally, David Hall took the reins and steered us through the process.
Those first committee meetings weren’t easy. Fiona, Sharon, and I would have a drink together after and talk about the charity as we saw it. Sharon wasn’t known to mince her words and Fiona and I were no push overs either, we kept going despite the challenges until the charity was set up with a wholistic framework of supporting the whole patient and their carers and families. There have been many people who have given so much of themselves over the years to MDS UK. We stand on the shoulders of these giants who went before us. Fiona has now joined their ranks.
Fiona showed true grit and continued to volunteer, eventually taking on the role of secretary. She maintained her committee membership until she bowed out when she needed to have her stem cell transplant two years ago.
Fiona as Secretary in the committee (Newsletter Issue 2/2012)
Fiona's Travel Tips article (Newsletter Issue 5/2014)
One of my fondest memories of Fiona came when she visited me in my office in Greenwich. I didn’t know her well at the time, she came in and I got up to welcome her and my colleagues laughed, I only came up to her navel! I took her for a meal in the greasy spoon over the road, at that time, I had no idea what a foodie she was - whatever she thought of the place she didn’t say. It was over lunch that we discovered our shared love of sport. Fiona was a highly accomplished basketball player, she was team captain for England and led them to victory in the 1991 Commonwealth Games in Edinburgh. Her old teammates described her as “a lovely shot, a formidable rebounder and someone who always demonstrated great leadership and kindness.”
Fiona was always immaculately turned out and always looked elegant. She was beautiful inside and out, she was also a highflyer in her specialised field of work. She was one of our MDS experts and her answers to those recently diagnosed carried more weight. She befriended many people through the online forums, Zoom meetings and Facebook groups. All who received a reply from her were reassured by her measured response.
Here are some words that people have said about “Our Fiona”:
Courageous
Beautiful
Kind
Funny
Always up for doing something silly
Organised
Professional
Strong
Caring
Amazingly crazy
Diplomatic
Inspirational
This list could go on and on and I’m sure those who knew her will have other words.
When she met Mamas a few new words came into her life and those were loving husband. They were soulmates and enjoyed a lovely life despite illnesses and life not being fair. They both lent on each other and it was a joy to watch their relationship from afar.
One of our last meetings before the pandemic hit was very memorable for different reasons. A few of us had gone into a nearby pub. We managed to get a table at the top of a narrow steep staircase, at one point a very drunk businessman came out of the loo with his flies open, which I noticed and nodded to Fiona. How we giggled! He found the stairs and promptly slid all the way down them ending in a heap at the bottom. Fiona as quick as a flash said, “should’ve taken more water with it.”
When Fiona told me her very sad news, I like many of her friends and family, was gutted. She had been through so much and just kept going. The thought of her slipping away was a horrible one. I sent her little messages to encourage and cheer her. One of the last ones I sent said “if someone isn’t social distancing from you, just fart” She thought that was very funny. I also sent her this beautiful poem which she told me gave her comfort.
And You Held Me
and you held me and there were no words
and there was no time and you held me
and there was only wanting and
being held and being filled with wanting
and I was nothing but letting go
and being held
and there were no words and there
needed to be no words
and there was no terror only stillness
and I was wanting nothing and
it was fullness and it was like aching for God
and it was touch and warmth and
darkness and no time and no words and we flowed
and I flowed and I was not empty
and I was given up to the dark and
in the darkness I was not lost
and the wanting was like fullness and I could
hardly hold it and I was held and
you were dark and warm and without time and
without words and you held me
Janet Morley
Fiona was just a natural at everything she did. MDS UK will be worse off for not having her immense knowledge and strength behind it. She set MDS UK as a donation invitation for her birthday in February. She has done the same for her funeral and asked for no flowers. Even as she was dying, she was thinking of all those newly diagnosed and wanting to make sure MDS UK remained a vital lifeline. The money that will be raised in Fiona’s memory will help continue the charities work until hopefully one day we find a cure.
I think this quote sums Fiona up “when you were born, you cried, and the world rejoiced. Live your life so that when you die, the world cries and you rejoice!”
On behalf of all of us at MDS UK.
