In the summer of 1997, during her third year of motor neurone disease, my mother put her arms around me in the kitchen as we watched the old family dog being put down. Candy (I named her when I was six) was suffering from all-systems-down syndrome, or "old age", and, after she'd fallen in her own excrement for a fifth time, we decided to put her out of her misery. The vet answered the phone, arrived, stroked and injected Candy, and took her away. Mum said: "Maybe he could do the same for me."
But no. The very logical law in this country allows us to put a distressed animal down, but we have to leave human beings in that same position to soldier on. Last week the law lords decided not to change this, by ruling that the husband of Diane Pretty, who has motor neurone disease (MND), wasn't allowed to help end her life. They said that her human rights were not infringed by the law banning assisted suicide. Had they watched someone they loved die of the disease, would their decision had been any different, I wonder?
Motor neurone disease is a progressively degenerative disease of one-half of the nervous system and affects 4,000 Britons. To explain which part of the body we're talking about: if I were to hit your arm, your sensory nervous system would send a message to your brain saying, "That woman's just hit me," and it would send a message back via the motor nervous system telling your hand to give me a good whack back. When a person has MND they can't hit back, because the message isn't getting there. This results in muscle weakness and wasting.
It takes about five years to spread itself around your body, but its journey varies. My mother had it in her right arm, before it moved down to her legs, while a woman with MND living close by had it in her vocal cords first. Whatever its deadly route, it leaves the brain and vital organs until last, so that although you're crippled and need constant care for your last year of life, your mind functions perfectly normally. In the end you lose the power of speech and you're virtually paralysed; communication is impossible, leaving you feeling trapped. On top of that, people are mopping up after you like a baby - wiping your rear, feeding you through a tube, brushing your teeth and so on. You usually die of a chest infection or pneumonia; this makes you want to cough constantly, but you can't because your chest muscles don't work; and because you don't have the muscles to swallow, you choke on phlegm, which needs to be sucked out constantly by a carer. Eventually you die. It's not a nice way to go, put it that way.
Mum contracted the disease in November 1995, while I was studying for my A-levels. She worked as a GP in Northallerton, North Yorkshire, and was a loving, lively soul who was adored and admired by all who met her. She liked the simple things in life: gin and tonic, Twix bars, people, the countryside - that sort of thing. Flopping in front of the television wasn't her cup of tea - she was always up and about, "doing". All in all, her illness was overwhelmingly wrong because she was such a good, active person. Everyone was distraught by her death, and at the funeral the church overflowed with friends and patients.
It all started when she and my father were holidaying in Spain. She felt a series of jumpy movements in her right arm and told my dad (also a GP), but they dismissed it. She had more over the next few weeks and her arm felt weak, but - typical mum - she didn't tell him. She was convinced it was MND and eventually said something. They went to see a couple of neurologists; one thought it related to trapped nerves in the neck, but another was sure she had MND.
There isn't a way of diagnosing MND - all you can do is rule out everything else. The main way of doing this is an MRI scan, which mum hated because she was claustrophobic; it involves lying, stock-still, in an enclosed space while the machine takes a picture of your insides. Her self-diagnosis was correct: it was MND. She was referred to a consultant neurologist at Newcastle upon Tyne's Royal Victoria infirmary who specialised in MND and was doing trials with Riluzole, a drug designed to help it; she asked if mum would take part, and she said yes. Though it didn't help her, Riluzole is thought to help others with the disease and is now available on prescription in this country. The trial involved a few sessions of what mum called her "Japanese torture" - electric current sent hurtling down needles stuck into muscles all over her body, to find out if her legal drug of choice was having an effect.
It was seven months after the diagnosis, while I was sitting on my bed watching some mind-munching afternoon television (post A-levels heaven), that she came into my room and told me she had MND. Typically, she said it in such an undramatic way (as if she was asking me what I wanted for dinner) that it didn't register that she was going to be very ill and die. There was no fuss or wailing - we just made a pot of tea and got on with it. When I think about what she went through, it amazes me that someone could be so wonderfully selfless from start to finish.
After that she stopped working, because her right arm was too weak to examine properly or resuscitate. She spent her time at home, learned to write with her left hand ("otherwise I can't spend your father's money in Marks & Spencer's", she'd say) and did the cooking and housework, which all took twice as long with one hand. She didn't complain once, and did it all with get-off-I-can-do-it-myself dignity.
At the start of 1998 things started to go downhill: the disease began spreading into her legs. Because her muscles were wasting, she tired quickly and usually read the day away on the sofa. Her legs and arms hurt, and nerve twinges caused her to drop things. She could walk, but often seized up if she stopped: "If I keep going I'm all right," she said, "but it's useless for window shopping." If there was something in her left hand, a seizure could cause a fall because there was no way of stopping it; hence she sometimes returned black and blue from a trip out, saying she'd been fighting again. During a trip to the Bahamas with my father she fell and bruised her eye and, to her amusement, the other guests had a good stare at him during breakfast. She ignored it all, though, and even kept up her walking hobby - until she needed an electric wheelchair.
This was chosen from the local hospital on a hot summer's day in 1998. It terrified the dog, who was chased around the kitchen by her constantly. She got all the fun out of it she could, especially after a few gin and tonics, when she sped around and left a few dents in the walls. In reality it took away her last bit of freedom, and she hated it with a passion, often cursing it as the control stick stuck. We had a second chair for trips out that dad or I would push. On one occasion we went to her much-loved Lake District and I endeavoured to push her around a lake. The path was very steep, so it took me a while, and halfway around she crumpled into a little heap and cried, saying: "I don't want to live like this - it's not dignified."
We had to install a lift at home so that she could get upstairs. It was pricey, big and ugly, and sat slap-bang in the middle of the living room; the big, cream doors creaked open, you drove in, and it moved up into my bedroom. On the way up mum used to joke that it was like an old horror film where your mother appears through the floor, and on the way down she'd do the Queen's wave as I watched her disappear.
One cold Saturday night in January 1999, there was a knock at the door of my student flat. The police told me that my mother was dead. I rang home and dad said that she'd killed herself. It wasn't a surprise - just before I had left for London she had cried with me and told me that she didn't want to drag out this "undignified life that isn't really a life", and I knew that she would end it at some point. The disease was progressing, she couldn't sleep, and it wouldn't have been long before a nurse or one of us would have had to care for her 24 hours a day. She was a doctor and knew which drugs to take - I'm sure that anyone in her position would have done the same. She downed them with a pint of gin and tonic.
My mother had the means to leave with her head held high, as she deserved. It's sad that other dignified human beings such as Diane Pretty, who don't have the same resources, can't end their lives at the same point. Leaving it longer means a year of dribbling in a chair, paralysed, while your mind ticks away normally. Surely in our advanced society we can devise a system of inquiry where a medical team examines separately each terminally ill person's wish to die; if they find that the person is well aware of what's going on and wants to die, a qualified person could then fulfil their wish. Doing anything else means treating people with less respect than dogs - and, in our so-called "free" society, that's crazy.
