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,
There is no way around it, being a quad can suck. If your guy was a bit of a player too, then he is going to find it extra hard. These are the things that helped me. A lot of company, even when I didn’t feel like it. Good food. Good docs. Good meds, depression meds when necessary. You didn’t say where you were based, but if you can get him talking to others in the SCI community it may help. I was pretty reluctant at first (I think some part of me didn’t want to admit I was actually a quad) but it does help to know you’re not alone out there.
Oh, and DON’T let him watch any films like
The Diving Bell and the Butterfly
. Major downer!
Let us know how you get on.
All best,
Ritchie
I looked up The Diving Bell and the Butterfly. ‘The story of a man who suffers a paralysing stroke, and his attempts to communicate with the outside world,’ it said. I wrote the title down on my pad, uncertain whether I was doing so to make sure Will avoided it, or so I remembered to watch it.
The next two answers were from a Seventh-day Adventist, and a man whose suggested ways in which I could cheer Will up were certainly not covered by my working contract. I flushed and hurriedly scrolled down, afraid that someone might glance at the screen from behind me. And then I hesitated on the next reply.
Hi Busy Bee,
Why do you think your friend/charge/whatever needs his mind changing? If I could work out a way of dying with dignity, and if I didn’t know it would devastate my family, I would take it. I have been stuck in this chair eight years now, and my life is a constant round of humiliations and frustrations. Can you really put yourself in his shoes? Do you know how it feels to not even be able to empty your bowels without help? To know that forever after you are going to be stuck in your bed/unable to eat, dress, communicate with the outside world without someone to help you? To never have sex again? To face the prospect of sores, and ill health and even ventilators? You sound like a nice person, and I’m sure you mean well. But it may not be you looking after him next week. It may be someone who depresses him, or even doesn’t like him very much. That, like everything else, is out of his control. We SCIs know that very little is under our control – who feeds us, dresses us, washes us, dictates our medication. Living with that knowledge is very hard.
So I think you are asking the wrong question. Who are the AB to decide what our lives should be? If this is the wrong life for your friend, shouldn’t the question be: How do I help him to end it?
Best wishes,
Gforce, Missouri, US
I stared at the message, my fingers briefly stilled on the keyboard. Then I scrolled down. The next few were from other quadriplegics, criticizing Gforce for his bleak words, protesting that they had found a way forward, that theirs was a life worth living. There was a brief argument going on that seemed to have little to do with Will at all.
And then the thread dragged itself back to my request. There were suggestions of antidepressants, massage, miracle recoveries, stories of how members’ own lives had been given new value. There were a few practical suggestions: wine tasting, music, art, specially adapted keyboards.
‘A partner,’ said Grace31 from Birmingham. ‘If he has love, he will feel he can go on. Without it, I would have sunk many times over.’
That phrase echoed in my head long after I had left the library.
Will came out of hospital on Thursday. I picked him up in the adapted car, and brought him home. He was pale and exhausted, and stared out of the window listlessly for the whole journey.
‘No sleep in these places,’ he explained, when I asked him if he was okay. ‘There’s always someone moaning in the next bed.’
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,
There is no way around it, being a quad can suck. If your guy was a bit of a player too, then he is going to find it extra hard. These are the things that helped me. A lot of company, even when I didn’t feel like it. Good food. Good docs. Good meds, depression meds when necessary. You didn’t say where you were based, but if you can get him talking to others in the SCI community it may help. I was pretty reluctant at first (I think some part of me didn’t want to admit I was actually a quad) but it does help to know you’re not alone out there.
Oh, and DON’T let him watch any films like
The Diving Bell and the Butterfly
. Major downer!
Let us know how you get on.
All best,
Ritchie
I looked up The Diving Bell and the Butterfly. ‘The story of a man who suffers a paralysing stroke, and his attempts to communicate with the outside world,’ it said. I wrote the title down on my pad, uncertain whether I was doing so to make sure Will avoided it, or so I remembered to watch it.
The next two answers were from a Seventh-day Adventist, and a man whose suggested ways in which I could cheer Will up were certainly not covered by my working contract. I flushed and hurriedly scrolled down, afraid that someone might glance at the screen from behind me. And then I hesitated on the next reply.
Hi Busy Bee,
Why do you think your friend/charge/whatever needs his mind changing? If I could work out a way of dying with dignity, and if I didn’t know it would devastate my family, I would take it. I have been stuck in this chair eight years now, and my life is a constant round of humiliations and frustrations. Can you really put yourself in his shoes? Do you know how it feels to not even be able to empty your bowels without help? To know that forever after you are going to be stuck in your bed/unable to eat, dress, communicate with the outside world without someone to help you? To never have sex again? To face the prospect of sores, and ill health and even ventilators? You sound like a nice person, and I’m sure you mean well. But it may not be you looking after him next week. It may be someone who depresses him, or even doesn’t like him very much. That, like everything else, is out of his control. We SCIs know that very little is under our control – who feeds us, dresses us, washes us, dictates our medication. Living with that knowledge is very hard.
So I think you are asking the wrong question. Who are the AB to decide what our lives should be? If this is the wrong life for your friend, shouldn’t the question be: How do I help him to end it?
Best wishes,
Gforce, Missouri, US
I stared at the message, my fingers briefly stilled on the keyboard. Then I scrolled down. The next few were from other quadriplegics, criticizing Gforce for his bleak words, protesting that they had found a way forward, that theirs was a life worth living. There was a brief argument going on that seemed to have little to do with Will at all.
And then the thread dragged itself back to my request. There were suggestions of antidepressants, massage, miracle recoveries, stories of how members’ own lives had been given new value. There were a few practical suggestions: wine tasting, music, art, specially adapted keyboards.
‘A partner,’ said Grace31 from Birmingham. ‘If he has love, he will feel he can go on. Without it, I would have sunk many times over.’
That phrase echoed in my head long after I had left the library.
Will came out of hospital on Thursday. I picked him up in the adapted car, and brought him home. He was pale and exhausted, and stared out of the window listlessly for the whole journey.
‘No sleep in these places,’ he explained, when I asked him if he was okay. ‘There’s always someone moaning in the next bed.’
