A tribute to Mag Friel
who had a great capacity for friendship

10 October 1953 – 31 December 2017

You can listen to an audio-recording of Marion’s tribute on Soundcloud
We never cooked a meal together, linked arms, kicked autumn leaves on Peckham’s streets; never walked along the Seine, crossed Brooklyn Bridge, took train, bus, boat wherever; never dipped toes into the freezing sea in January or any other month; never talked all night, never cried together, although we often felt we might; never heard each other laugh, though laugh we did, out loud, almost in unison.
At our best we made up stories, travelled North, South, East, West (to Ambridge too), sent messages from bedstead, sofa, blanket on the floor; shared desperate times, hers always so much worse than mine, and small delights, until the short supply of hope ran out and there was naught, zilch, nothing left for Mag but the brute force of M.E. in its severest form – fatigue that totally incapacitates and isolates, and leaves the sufferer with increasingly uncontainable symptoms and atrocious physical pain 24/7, in a room with curtains permanently closed.
For years Mag lived life on the point of a needle. She took her life on 31 December 2017.

* * *

Mag’s capacity for deep communion, care, and laughter in the midst of hardship was immense. She stayed in touch with friends through fantastically abbreviated text messages. Notes written on kitchen roll were precious. Even more so the occasional voice recording – words barely louder than a breath. Her inner liveliness, her fierce intelligence, her willpower, her curiosity and wit, shone through her arduous, yet often joyful utterances.

She craved visits, but could seldom manage them. Even minutes spent in silence by her bedside left her depleted and worsened symptoms for weeks. What a fight it was to be alive! I don’t know how Mag endured. Her faith sustained her. In our local M.E. group she was known as a prayer warrior who would plead for you or a loved one. People who had never met her were moved by her generosity of spirit, her desire to be part of a community, to be of use. To her great distress Mag lost the ability to text, became unable to communicate with the outside world, although messages were still read out to her.
I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”
Memories of who we were before M.E. seem almost fanciful when we need all our energy to make do. Mag’s fortitude was striking. Her life shrank to the very basics of survival, and still she rifled through day’s pockets for wee pleasures.
The lack of funding for biomedical research and the disparagement of the M.E.-community enraged her. She faced complacent institutions and their indifferent, even contemptuous representatives with unceasing anxiety, and was let down in countless ways. Two beloved long-term care-givers worked hard to balance the scale and tended to Mag’s needs with boundless empathy and precision. Their insight into M.E., learned on the job, does them proud. If only it were easily transferable. If only people wanted to know.

During Mag’s funeral service, attended by her carers and friends from the support group whose gatherings she had never been able to join, the depth of love for her was palpable. Only an elderly couple had known our friend in blooming health, neighbours since she had bought a battered house and set to doing it up, by herself. In the end she lived in a hospital bed in a darkened room on its ground floor, unable to tolerate a hug, or being washed, because she hurt so much.
And now let’s talk about rage. We have seen too many notices about M.E.-related deaths & suicides. These are not ‘tragic’ losses, they are shameful! To most of the world Mag (and thousands like her) – bed-bound, in constant pain, with a catalogue of spreading and ever more debilitating symptoms – do not exist. Mag had severe M.E. for 25 years! Imagine what could have been achieved if research had not been impeded by the ‘it’s all in your head’ brigade. Years, even decades of unmediated, unattended suffering, can drive a person to that last desperate step. It is appalling that these conditions persist. We need a radical change in attitudes and substantial funding for long overdue biomedical research, now!
I mourn the life Mag could have led. Missing her has only just begun.
@marjojo2004