Textling #103

A tribute to

Mag Friel

5.

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. The lives we’re all missing out on.

Our friend has gone. Hope had expired, and the fight in her was done.
We are bereft.

 

Audio when I can

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Textling #102

A tribute to

Mag Friel

4.

Mag’s funeral service was a wonder. We had two months to organise in customary slow-motion; carers did the running. Mag’s favourite songs were traced, hymns she loved, psalms, poems. Two old friends, met during their stay at the CFS/M.E. Unit at Oldchurch Hospital, Romford, in 2004 (long since closed), were kept abreast and shared their memories. Still severely ill, they perhaps understand most closely what Mag went through and how she could have reached that point beyond endurance.

Order of Service, lyrics, CDs, were posted in advance to those too sick to come. We have all felt wretched when missing pivotal events, and hoped – this time – to infuse the dreaded ‘there in spirit’ with a dose of lifeblood.

Robin song, which Mag adored, filled the church as people arrived, most from the support group whose gatherings she had never been able to join. There were chairs, four-legged and wheeled, recliners, and mats on the floor for lying down. 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.

The vicar, who, years ago, had visited to give her communion, poignantly interwove the service with testimonies from friends, reading for people who could not attend. The depth of love for Mag was palpable.

The last tune played was the Archers’ theme, and here we smiled. Mag’s final words to us: “See you on the other side!”

 

Audio when I can

Textling #101

A tribute to

Mag Friel

3.

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.

 

Audio when I can