Two days later Will ended up in hospital with an infection. A precautionary measure, they called it, although it was obvious to everyone that he was in a lot of pain. Some quadriplegics had no sensation but, while he was impervious to temperature, below his chest Will could feel both pain and touch. I went in to see him twice, bringing him music and nice things to eat, and offering to keep him company, but peculiarly I felt in the way, and realized quite quickly that Will didn’t actually want the extra attention in there. He told me to go home and enjoy some time to myself.
A year previously, I would have wasted those free days; I would have trawled the shops, maybe gone over to meet Patrick for lunch. I would probably have watched some daytime television, and maybe made a vague attempt to sort out my clothes. I might have slept a lot.
Now, however, I felt oddly restless and dislocated. I missed having a reason to get up early, a purpose to my day.
It took me half a morning to work out that this time could be useful. I went to the library and began to research. I looked up every website about quadriplegics that I could find, and worked out things we could do when Will was better. I wrote lists, adding to each entry the equipment or things I might need to consider for each event.
I discovered chat rooms for those with spinal injuries, and found there were thousands of men and women out there just like Will – leading hidden lives in London, Sydney, Vancouver, or just down the road – aided by friends or family, or sometimes, heartbreakingly alone.
I wasn’t the only carer interested in these sites. There were girlfriends, asking how they could help their partners gain the confidence to go out again, husbands seeking advice on the latest medical equipment. There were advertisements for wheelchairs that would go on sand or off-road, clever hoists or inflatable bathing aids.
There were codes to their discussions. I worked out that SCI was a spinal cord injury, AB the able-bodied, a UTI an infection. I saw that a C4/5 spinal injury was far more severe than a C11/12, most of whom still seemed to have use of their arms or torso. There were stories of love and loss, of partners struggling to cope with disabled spouses as well as young children. There were wives who felt guilty that they had prayed their husbands would stop beating them – and then found they never would again. There were husbands who wanted to leave disabled wives but were afraid of the reaction of their community. There was exhaustion and despair, and a lot of black humour – jokes about exploding catheter bags, other people’s well-meaning idiocy, or drunken misadventures. Falling out of chairs seemed to be a common theme. And there were threads about suicide – those who wanted to, those who encouraged them to give themselves more time, to learn to look at their lives in a different way. I read each thread, and felt like I was getting a secret insight into the workings of Will’s brain.
At lunchtime I left the library and went for a brief walk around town to clear my head. I treated myself to a prawn sandwich and sat on the wall watching the swans in the lake below the castle. It was warm enough for me to take off my jacket, and I let my face tilt towards the sun. There was something curiously restful about watching the rest of the world getting on with its business. After spending all morning stuck in the world of the confined, just being able to walk out and eat my lunch in the sun felt like a freedom.
When I had finished, I walked back to the library, reclaimed my computer terminal. And I took a breath and typed a message.
Hi – I am the friend/carer of a 35 yo C5/6 quadriplegic. He was very successful and dynamic in his former life and is having trouble adjusting to his new one. In fact, I know that he does not want to live, and I am trying to think of ways of changing his mind. Please could anyone tell me how I could do this? Any ideas for things he might enjoy, or ways I could get him to think differently? All advice gratefully received.
I called myself Busy Bee. Then I sat back in my chair, chewed at my thumbnail for a bit, and finally pressed ‘Send’
When I sat down at the terminal the next morning, I had fourteen answers. I logged into the chat room, and blinked as I saw the list of names, the responses which had come from people worldwide, throughout the day and night. The first one said:
Dear Busy Bee,
Welcome to our board. I’m sure your friend will gain a lot of comfort from having someone looking out for him.
I’m not so sure about that, I thought.
Most of us on here have hit a definite hump at some point in our lives. It may be that your friend has hit his. Don’t let him push you away. Stay positive. And remind him that it is not his place to decide both when we enter and depart this world, but that of the Lord. He decided to change your friend’s life, in His own wisdom and there may be a lesson in it that He –
I scanned down to the next one.
Dear Bee,
