I must warn you that I have written this through blurred vision caused by a lot of tears. It’s upset me a lot to write it because the subject matter means so much to me. I’m not naive, I realise that other people might be upset by the subject as well. This is your “look away now” warning.
I should also say that I don’t have a illness, disease or disability. I am, however, the primary carer for my wife who has progressive Multiple Sclerosis. I make this disclaimer to make clear that I have no first hand experience of what a disabled person goes through. No matter what I witness, I don’t feel what a disabled person feels.
That said, I do have firm views on the issues surrounding disability and disabled people. One of which is the issue I fear most – death. More specifically, the prospect that my wife will feel so defeated by MS, in such despair and pain, that she wishes to end her life. I am prompted to write this by two events: i) Monday 13th June marks the start of Carer’s Week 2011 and ii) as I write this, the BBC documentary on assisted suicide, made by Sir Terry Pratchett, has yet to be broadcast.
The publicity for this documentary has hit me very hard because one of the case studies to be featured in it concerns an MS sufferer who was roughly the same age as my wife when he chose to end his life at the Swiss Dignitas centre. For those who haven’t seen the press coverage ( I don’t intend to repeat entire newspaper/magazine articles but here’s an example from the Daily Telegraph ), a 42 year-old MS sufferer, Andrew Colgan, chose to travel to Switzerland’s Dignitas centre with his mother and drink the poison that would end his life, and therefore his suffering.
My wife was diagnosed with MS in 2005. Four months after we were married. So far this disease has robbed her of her mobility, control over various body functions, her livelihood, in fact most of the things that the majority of people take for granted every day. We’re both in our early forties and our friends have children of various ages. This is another part of ‘normal’ life that is denied us. It’s reported that Mr. Colgan had to “fall” out of bed in a morning and crawl around to move independently. My wife can do neither of these things. I must lift my wife out of bed onto a wheelchair, shower her, help her go to the toilet, lift her into a chair, off the chair, in and out of a wheelchair, into a car, out of a car, you get the idea. She gets tremendous nerve pain in most of her body (although not at the same time) and painful spasms in her legs. I must dress her, undress her, change soiled clothes, do all laundry, make her meals, get her drinks, feed her when she lacks the strength, prompt medication, take care of all affairs; and, when all this is done, I am also her husband.
I watch her face screw up with pain and hear her scream when I lift her. ( Please don’t ask, “why don’t you have a hoist?” – this would provoke a diatribe that I don’t have the energy for right now ) Despite taking handfuls of painkillers and anti-spasm medication of varying hues, sizes and strengths, she still feels a lot of pain. And every time I witness her in pain or lose control of a bodily function, I think to myself “is this the one?”. Is this the occasion that flicks a switch in her mind to begin to feel that the struggle isn’t worth it. Because I imagine that’s how it starts – that one instance of pain too far, that one loss of control that makes a sufferer think “That’s it. Enough.” albeit briefly. And that thought intensifies with every subsequent episode until the sufferer starts to envision the practicalities of making it happen. I have the utmost respect and admiration for Mr. Colgan’s mother who, not only accepted his decision to end his life, but travelled to Zurich with him to be there at the end. To watch her son die voluntarily. The bravery which she must have displayed to go with him to Switzerland is something I can only aspire to achieve every day. I cannot, CANNOT countenance the idea of my wife wanting to kill herself. And yet, despite my gut reaction, when I consider it rationally, I can only come to the conclusion that anyone who despairs of feeling intense pain and suffering must have the right to make this choice.
I don’t intend to watch the BBC documentary because, as I hope you can imagine, it covers a topic which is far too close to home. As Carer’s Week begins on 13th June, my thoughts go to Mr. Colgan’s mother, the carers of the other people featured in Sir Terry Pratchett’s documentary, and carers everywhere who witness the person they care for in pain and suffering, and think “Is this the one?” with the same feeling of dread as me.