Liberty Pack, 82, elegant and beautiful, was once a yoga teacher, and, along with her husband, Barrie, a ballroom dancer.
When she was 72, Liberty was diagnosed with a rare, late onset form of slowly progressing, motor neurone disease that laid waste to the nerves and muscles in her torso.
This left her ribs overlapping her hips, contorting her spine and leaving her in constant pain. Even sitting upright was impossible.  Liberty’s weight fell to 30 kilos. Slowly, her body was wasting away.​​​​​​​
"She basically has no core strength. When she stands, her body simply folds in two."
Making Liberty’s life even harder, the need to tend to the stoma – an opening in her body due to a bowel resection for Crohn’s disease.
A twice-weekly task which took 10 to 15 minutes when she was healthy, now requires four, to six hours. “My eyesight is just about shot and that’s terrorising me,” she says. Despite this, Liberty remains determined not to let the task defeat her.

Barrie, her carer and closest confidant, carries her over his shoulder into the bathroom and puts her gently down on the floor so she can attend to the stoma. When it’s done, she calls him to carry her back to her chair.

“I’m just in awe of Liberty and her mind and the way she is able to put everything into perspective, notwithstanding the pain she’s in,” Barrie says.

Liberty’s co-ordinating VAD practitioner, Dr Clare Fellingham, sees in them resilience personified. “They’re both well aware that if Barrie wasn't there, Liberty would have chosen to leave this earth many moons ago.

"Being able to self-care and deal with her stoma once every five days, is her line in the sand. When she's unable to do that, she’ll know it’s time.

“People need to make their own decisions about when they have reached that limit of their suffering.”

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