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Monthly Archives: July 2013

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It is a year, a whole year, since Julie had to spend a night in hospital. She remained a day patient right up until a few months ago, but for the last 12 months she has slept in her own bed, and has not slept at the hospital.

How resilient the young are! Julie was surprised when I pointed this anniversary out to her: surprised and a little dismissive. She has already forgotten her shuttling, nomadic existence last spring when weeks at home would be interspersed with weeks back inside the hospital. She has forgotten the monotonous journeys, the charts, the meetings, the phone calls, forgotten the tiny triumphs of leaving the safety of the hospital for a night, and the disappointment of having to return to it, temporarily beaten.

Thank goodness she has forgotten! And I, though I remember more, am fast forgetting how it felt: I have almost forgotten, for example, the particular gut-wrenching dread of the phone that rang in the middle of the night. Much of the anxiety, fear and anger is fading fast away. I bump into staff who treated her in those two horrible years of hospital care, and I no longer try to avoid them – I can greet them with an open welcoming face. (Well most of them: those that were kind and meant well.)

Some things are harder to erase, and perhaps erasure is not what we want. There are some things that maybe we should occasionally remember, if we are ever to move on from them, to exorcise them. Going further back in time, to the year before the last one, Julie spent a year entirely in hospital with rare visits home; and this was a very dark period. There are things we sometimes bring out and roll around between us, Julie and I, delicately dissecting them, exploring them like a tongue a missing tooth. We cannot make sense of them alone because neither of us knew completely what was happening. She tells me in pieces her experiences, the staff, the other patients, I tell her some of what the doctors told me, what it felt like on the outside, how I loved her and missed her.

But we bring these memories out only when we want to now; they do not hijack our days and intrude where we do not want them. Not this week for sure, when there is more to celebrate: because we are about to go away on our first family holiday in three years! We tried and failed repeatedly to arrange holidays during those years, but Julie’s illness (and the hospital’s response to it) was too unpredictable: there would be another crisis, another change of hospital leave policy, a sudden change of medication. Now she is free, and we are free, to travel as a family again.

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I do not have a post for this week. All my “writing” thoughts have been taken up with events unfolding on another blog: MyDaftLife, and by comparison with these nothing I could write about seems important enough. All my thoughts have been with the writer who lost her son, buried on Tuesday. I know Sara only from her blog, but from her writing I feel as if I have often spoken to her in person, laughed and cried with her, met her children.

All of us whose children’s lives have not been easy, whose children have had to spend time away being “cared” for by others, will recognize the pain of the last few months for Sara. Her son in hospital, her on the outside, gamely trying to keep it all together, despite the relentless grinding of the system. But the tragedy of his sudden death is beyond our words to describe.

It is astonishing that Sara has continued to blog for some time despite the immense pain she must be suffering at this time. It is our privilege to be allowed to read her words, and to witness her dignity and courage in grief. And through her writing, her son lives on.

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In our house, Dr Sheldon Cooper from the Big Bang Theory is a hero. Oh, we get how he is arrogant, self-centered and insufferable. But we also get how he is vulnerable, how he struggles in a world full of nonsense, but that he also survives. In our house, survival despite vulnerability is heroic. And Sheldon does not just survive: he often triumphs. This is a character who comes close to a breakdown when his regular barber takes a holiday, but he still refuses to compromise: the world has to meet Sheldon on Sheldon’s own terms.

I don’t know if the character of Sheldon Cooper is supposed to have Asperger’s Syndrome, but they could comfortably be discussed in the same sentence. His mannerisms – his little tics, his lack of empathy, his attachment to routine – are greeted with smiles and winks in our house. They remind us fondly of our son, Duncan, who does have a diagnosis of Asperger’s Syndrome. These days Duncan hardly displays any of these mannerisms in public – we rather miss them – but we still sometimes see them at the end of the day, when he is tired. We know that he has his own particular spot on the sofa.

I have felt many different things about Duncan’s diagnosis of Asperger’s. At first it was just relief – here was something that at last seemed to fit, a recognizable pattern in the chaos. But later there was a real sense of loss and despair when I reflected that this was a lifetime sentence. Then I began to learn more and I began to feel more confident, more capable of solving the endless problems. Over time, as we all adjusted, there was some feeling of identity there, and sometimes a sense of pride.

Ironically, just as we began to accept the “badge”, my son grew up and started taking matters into his own hands; and he decided that this label was not for him. He knows other kids at school with a diagnosis of Asperger’s, and he doesn’t want to be associated with them or their label. Those with the label are the ones who struggle at school, who are often withdrawn from classes, or who appear with an adult in constant attendance. To my son, this is not how he sees himself: he sees himself as a survivor. This label – for him – is associated with needing support to survive; and he copes (largely) alone.

As far as my son is concerned, in the ongoing battle between himself and the rest of the world, it is the world that is going to have to compromise.

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I am smitten by my daughter’s new psychiatrist. He is text-book tall, dark and handsome, and has an accent that makes me weak at the knees. I could listen to him read out a list of psychiatric medication any day – and in fact, that is pretty much what he does read out in the meeting. But of course to my dismay, I have the curse of hayfever and appear with a luminous nose and eyes like fried eggs.

Over the years we have worked with many different psychiatrists, and each of them stands out as a very strong character – some charming, some stern, some repulsive. They have a powerful role, and of course they are aware of this – in the armies of mental health professionals, they are the generals, they alone have power to prescribe – and to section – and they are often in overall charge of their medical unit. Their influence over their patients, especially young patients, can be huge: they can be involved at every level of decision making, from where they live, their education, or whether they can learn to drive. They all develop their own particular way of handling this responsibility.

The patients, and of course the parents of young patients, confer on them almost god-like status. Because you want them to be god-like: you want there to be a cure. You want them to have the power to see inside the soul of your loved one, see what is lost and damaged, and use their powers of magical healing. This is almost always a mistake, and brings inevitable disappointment. Beware the charismatic psychiatrist, and beware prenouncements. “Julie is self-harming because… xyz” they may say, “If we do abc, then she will stop self-harming.” In the end it will turn out that they were wrong; sometimes “abc” was very painful to do, and caused damage of its own.

It must be tempting to speculate, it must be tempting to try and impose order on the chaos of your patients’ lives. They invite you to do it, they beg you to tell them if they are depressed or not, to tell them if the voices they think they hear are symptoms of psychosis or not, to decide whether their mood fluctuations are normal or not. All you have to go on is what they tell you, and not very much else, so you can make up pretty much any story you please. It is like making constellations out of stars: you can see the Big Dipper, or you can decide to draw yourself a whale in tights.

So far Julie’s new psychiatrist has avoided pronouncements, and seems wise. He speaks very little, looks carefully at the evidence, and draws conclusions that are boring but cannot be faulted. I don’t think he will do any harm to her, unlike some of the others. In the meantime, I am more than happy to attend any meetings he is pleased to call. And gaze adoringly.

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