A little hope

Sometimes by Sheenagh Pugh

Sometimes things don’t go, after all,
from bad to worse. Some years, muscadel
faces down frost; green thrives; the crops don’t fail,
sometimes a man aims high, and all goes well.

A people sometimes will step back from war;
elect an honest man; decide they care
enough, that they can’t leave some stranger poor.
Some men become what they were born for.

Sometimes our best efforts do not go
amiss; sometimes we do as we meant to.
The sun will sometimes melt a field of sorrow
that seemed hard frozen: may it happen to you.

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There’s an elephant in the room

The members of the psychiatry team don’t want to endanger their long-term relationship with Charlie by actually giving him any treatment. They tell me this in all seriousness, with straight faces.
And what about my ***** long-term relationship with him? I want to scream.
I don’t have the option of doing nothing. In fact, I have to do and say 50 things every day which endanger my long-term relationship with Charlie. I have to make him eat when he feels so ill he thinks he’s going to throw up. I have to make sure he takes his long list of medications, drag him to hospital appointments, and do all the crap, thankless tasks that a mother of a seriously ill child has to do.
I do these things even when Charlie is literally kicking and screaming against them because I know they’re necessary. Because I love him. Because I want what’s best for him and want him to be as well as he can be.
Does he love me for doing them? Probably not. Does he blame me for doing them? When he’s angry (which he often is) he shouts all sorts of blame and abuse at me.
And let’s not forget the main reason why their long-term relationship excuse is a joke. This one is the elephant in the room, which no-one likes to acknowledge, but which I thrust into their faces…
How long-term is Charlie’s future exactly? Given that the liver professor says his liver will probably stop working completely in the next couple of years and given that his name isn’t on the transplant list, Charlie’s future doesn’t look very long-term at all at the moment.
And why isn’t his name on the list? Oh yes, it’s because the doctors think that he won’t be able to cope psychologically with a transplant.
What might help with that, I wonder? Who might you go to help prepare your son psychologically for something like that? Oh yes, that would be the psychiatry department…

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Blood and guts in the psychiatry department

I can hardly describe the rage I am filled with when dealing with hospital psychiatrists. Not all psychiatrists do this to me; I have noticed that the ones who work in hospitals are almost always the worst. Possibly because they are not subject to the rules of a market economy ie people don’t have much choice about seeing them.
The latest ones we don’t have much choice about are Madame X, a psychologist employed by the transplant department, Professor Y, a psychiatrist specialising in autism, and Madame Z, a… well, I’m not exactly sure who she is or what she does, but she’s the silent third member of this coven. Our meetings are sometimes also attended by a nameless student who is Madame X’s shadow, following her from meeting to meeting, presumably learning the art of how to be completely useless.
We have spent five months waiting for help from them, with Charlie pitifully pouring out his soul on their grubby blue sofa, weeping and telling them he thinks he’d be better off dead.
I have had to trawl through the moments in Charlie’s early childhood when I realised he was different from other children, that he wasn’t just amazingly intelligent but also autistic. I have had to talk about all this while sitting next to him on the grubby sofa, being watched by the useless triumvirate, which he found unspeakably distressing. These were things he’d never had to listen to before and which he mulled over and wept over at home for weeks afterwards. Of course, this did nothing to lift his depression, but I cooperated with them in the belief that it was necessary in order to get the help Charlie so obviously needed.
So now, five months on and taking stock of our desperation, my husband and I decided we needed to pin them down to a treatment plan. What exactly were they going to do to help?
It took two hour-long meetings to elicit the facts that, not only had they not completed any kind of evaluation, they didn’t have any treatment plan and what’s more had no plans to make one. In fact, they seemed to have no idea whatsoever what to put on a treatment plan. Instead they just told us that Charlie didn’t fit into any of the existing programmes in the hospital because his case was too complicated.
Couldn’t they put together an individual treatment plan, we asked? They supposed that they maybe could, but wouldn’t know whether it would work because it would never have been tried out before. This was just one in a long line of pathetic excuses, of which the following are my favourites…
…it seemed to them that Charlie was often too upset to talk to them.
…that once when Prof Y had asked him if there was anything she could do to help, he had wailed, “No-one can help. Just leave me alone.” At which point she had indeed taken him at his word and left him alone in his hospital room.
… and this one takes the prize: they didn’t want to jeopardise their long-term relationship with Charlie. I think I will have to devote a whole new post to this one, because I want to do it justice. Until next time…

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This is my story…

… my 14-year-old son Charlie is in end-stage liver disease and only a transplant can save his life.
But wait, it gets complicated: the doctors won’t put him on the waiting list for a transplant. They say he may not be able to cope with it psychologically because he is autistic.
He’s our precious son, so we have to change their minds.
To achieve this, we first have to change Charlie’s mind because he says he’d rather die than go through the operation. And when the doctors hear him say this, they say it’s impossible to give a transplant to a teenage boy against his will.
But is it really against his will? Or is this just his fear talking?
Charlie has gone through years of medical treatment which he would have turned down if he could. In the past year alone, he has had liver biopsies and MRI scans, endoscopies and colonoscopies, more ultrasounds and blood tests than I can count, intravenous feeding and, worst of all for Charlie, naso-gastric feeding for months. He didn’t want them, but he’s not an adult so he didn’t get a choice.
When a procedure is successful and has helped him to feel better, he’s been glad and realised it was worth it after all.
Deep in his heart, I am sure Charlie believes the transplant, like everything else, will happen anyway, no matter what he says.
What he doesn’t realise is that this time the goal posts have moved.
Livers are precious and doctors won’t waste them on people who might not look after them.
This time, if Charlie continues to refuse, he will be refusing the chance to live into adulthood.
So we’re stuck here in limbo, hoping Charlie’s liver doesn’t deteriorate suddenly… which it might. Hoping we can persuade him to embrace the transplant and that the doctors will put his name on their list.

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