After much thought I am forwarding to you one of the last messages my dearest friend wrote, three weeks before she died from motor neurone disease (MND), surely one of the cruellest of deaths. My hesitancy comes not because I do not wholly support your campaign, I do, and so did my friend, but from the sadness which is still raw, even after nearly two years.
But perhaps two years is an indicator that the grief should be directed more constructively. It is about how long my dear friend lived after her diagnosis, a classic prognosis for MND. Her wish was to die at home and with the best possible support from her husband, daughters and friends and an excellent palliative care team – that is what she did.
During her illness she explored the Dignitas option for which she was accepted, and she wrote to me saying what comfort this gave her. But classically when she could go to Switzerland, she wasn’t ready and when she was ready she was too ill to travel. Other options were explored too but finally she altruistically decided to leave her brain and spinal cord for research and in this interest to see the disease to its natural end.
Her enormous courage and stoicism in the face of extraordinary mental anguish and physical discomfort at every level is, I think, underlined by a scrawled message in her barely recognisable hand: "It's so much worse than I imagined"
Highly intelligent and erudite, even in the extreme effort to write when she could no longer speak, she still got the grammar right…I treasure that apostrophe! She wanted me to use the photo I took of her message to advance the case for dying with dignity and her family is happy for it to be so used.
I hope it will be a useful addition to your evidence so that one day compassionate legislation will be passed.
- Elisabeth Inglis, first published in The Damage Done, August 2016
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