UK Disability Activist tells her story and speaks out against the UK DPP's apparent softening on assisted suicide in the wake of the Martin decision. It was just another normal day today. Me and my husband Merv were at the mirror. Poor Merv was trying to do my hair while I complained about the state of it.
It's been like that for 20 years, but would that regular domestic picture have even existed if assisted suicide was allowed?
There was a time when we couldn't row, when I never complained because I was locked in my body in silent agony.
I was the one who couldn't breathe, at all, the one who couldn't move anything, not a finger, a toe, not a sniff, not a smile, not a scream.
Unheard, unmovable, without the aid of six people, because of the pain, I lay for nearly five months with only the blink of my right eye.
I promise you it's not true that only "in space no one can hear you scream" - no one can hear you with Guillain-Barré syndrome and sadly for me that included some of the nurses, who left me for many hours to my own devices.
Move on some years, about another five from now I'd say, the director of public prosecutions (DPP) has been persuaded that assisted suicide is not only okay, it's a good option.
Well, say it did become common place and there I am in intensive care. How would I have felt?
For starters given my lifestyle as a theatre director and drama therapist in the local psychiatric hospital, how would/could people have envisioned a life for me?
I'm 37 my little boy's one, my husband's 13 years younger than me (already the cause of great distress to his family). Let's imagine, the conversation.
My sister says she wouldn't want to live, if it was her - so perhaps I wouldn't want to.
My in-laws are sad but possibly relieved, (go on just a bit), at the thought of an end to my suffering.
My brother is insisting that I will get better, but not long after is telling Merv that it's amazing he hasn't already left, brave little soldier.
And my mum… well she just keeps reading poetry to me and spelling out the alphabet so, so, slowly, bless her.
There's me, screaming, but no-one can hear me: "I want to live, I want to be with my baby."
"Forget anything I said, ever."
I had one eye that worked, and but for that, the machine would be off.
The fact is my friends, the world would be a different place with euthanasia.
In Oregon we have "death doctors". In the Netherlands we have the Groningen Protocol for babies not thought to be perfect.
We now have Medicaid offering euthanasia instead of treatment that prolongs the lives of those with cancer.
More recently we have the Belgian Parliament with legislation that gives poorly children, yes children, the right to request to die. Wouldn't that be some conversation, some slippery slope there?
So let's hope Keir Starmer, the DPP, keeps his head and then I and people like me can keep ours.
As for me, when I finally came up for air, it's been a hard road, a cruel road at times but I can still breathe, I can still catch the intoxicating scent that is… life.
As for the hair issue, maybe I just need more appointments with a good hairdresser, or maybe just a thank you for all the love to the one you've got.
- Nikki Kenward (née Russell) and her husband work on the Distant Voice group, which is allied to the ALERT campaign, with the goal of defending vulnerable people's right to live.
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