vinyarb

Tony was active, gregarious and active. He would play rugby and skydive. He has a loving wife and is the proud father of two. However, a massive stroke in 2005 resulted in him falling into a Locked-in Syndrome. He is paralyzed from the neck down, lost his ability to speak, and can only communicate via a series of blinks.

His eyes are hooked up to a computer, and he “speaks” by blinking his words, letter by letter. It is a painfully slow and laborious process, not to mention frustrating.

“I cannot scratch if I itch,” he says. “I cannot pick my nose if it is blocked and I can only eat if I am fed like a baby – only I won’t grow out of it.”

Feeling utterly helpless, and unable to end his own life, he is fighting to change the law on assisted dying, so that a doctor administering a lethal injection for him will be immune from prosecution.

Over a 4-day twitter exchange with Observer readers and Elizabeth Day,  we get to see just how lucid and humorous Tony is. Which only makes it harder to imagine how he spends his days; being totally locked in, unable to do anything while his mind wanders, inevitably thinking about how depressing his situation really is.

This has gone on for 7 years.

Mother

My mother suffers from Multiple Systems Atrophy. A degenerative disease that affects the nerve cells in the brain, causing problems in  movement, balance and other autonomic functions. There’s currently no cure. In other words, people suffering from MSA basically get worse over time.

In 2008, my family (including my mum) and relatives went for a trip to Japan. While MSA was already affecting her movements, she could still speak relatively well. She could walk slowly with the aid of a walking stick, although we brought a wheelchair to make travelling easier for her.

Today, she’s very much living the same way as Tony. She has since lost the ability to speak. Her movements are limited to a very rigid right arm. Even communication via eye movement is a strain because when she gets tired, even using muscles to lift her eyelids become tough (something that to be honest, we simply take for granted).

I can’t imagine how difficult and agonizing it must be to live like this. Sometimes I lie in bed at night, keep very still, and try to enter her world, live in her shoes for a few minutes, and I can’t. Its too scary an experiment, even for me. As a more traditionally asian family, we never talk of death. In the years following diagnosis, we have (unfairly or not) kept the prognosis from her in the early years, and have simply kept up medical appointments and appearances that things will get better.

I mean, who knows what medical science can turn up tomorrow, right?

But today, I can tell that the end is near.

As much as I can’t bear to let her go, I believe its for the best. Because even though she’s never complained of aches or pain, I can see and feel the agony in her eyes, her frustration when she cries because she can’t get what she wants to say across to us. In all these years, she’s never complained of an itch, even though I believe that its humanly impossible to not have an itch even once an entire day.

I think Tony’s and mother’s situation are pretty similar. Both are stuck in a fast-moving world. And seeing what he goes through firsthand via my mother, I fully understand why he wants to do what he wants to do.

I would too, if I were him.

To end of this post, i’ll leave you with an answer Tony had for @le_zadok when he asked “Do you have any fear about dying?”

“No, but I have a fear of living like this when I am old and frail.
I shall be sad, though.”

 Tony Nicklinson on The Guardian

Photograph: Stephen Shepherd for the Observer