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mental illness

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I’m not a big fan of diets, but here I am downloading the NHS diet plan and back to counting calories.

Julie has been in and out of hospital like a yoyo the last week, so our family life has been pretty chaotic. But as soon as she started to stabilise again, she declared that one of the things she wanted to do was lose weight.

Now in the aftermath of crisis Julie’s head is not in a good place. Dieting can seriously mess with your head at the best of times: all those obsessional routines about calorie counting, all that guilt when you “sin”. She’s already surveying the wreck that is her sixth form career after two months of chaos and trying to work out how to recover that. To diet as well: is that a good idea?

I figured the best thing would be to offer to be her diet buddy. I could do with losing a few pounds anyway, and by dieting alongside her I could offer her support and moderate some of the extremes of behaviour.

In fact it’s been quite fun. Its been a few years since I’ve looked at the world of dieting, and there are lots of apps and much better sources of advice. I insisted we try the NHS plan because it is moderate, and because Julie had already successfully used their running program last year. We printed out the star charts and put them on the fridge, as instructed, and signed up to a free calorie logging app which allows us to be “friends” and share information. There’s been a fair amount of giggling and “Did you know…?” conversations. It’s fun to work on a project together.

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Necessity is the mother of invention. Julie is difficult to communicate with in crisis, and while she is in and out of hospital she has to communicate with lots of new people, some of whom seem to have their own agenda when it comes to helping her. Scratching my head, I hit on an idea that seems to work better than I expected. The Priority Game.

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When I tell people that Julie has gone back into hospital, they’re often very dismayed and shocked. I can understand that, though I wish I could explain that by the time an admission to hospital takes place, it comes as something of a relief to everyone concerned. The worst time is the time nobody else sees: the time immediately before admission, when the crisis is building, and we’re descending into chaos.

I try to keep normal life going as long as possible, even if it’s just going through the motions. This is because often we do pull back from the brink, and it’s easier to get back to normal if you’ve kept the engine running. So often Julie has hardly missed a day at college, and I’ve hardly missed a day at work, and nobody is any the wiser, even though the most appalling scenes are being enacted in our bathroom, and we’ve spent half the night in A&E.

But sometimes the crisis does gain the upper hand, and you find yourself going over the cliff edge. And actually once you’ve let go and committed to falling, free fall is quite a pleasant sensation. (Just as long as you don’t think too much about what’s going to happen at the bottom.). Just before you let go is a horrible feeling: everything is starting to disintegrate under the pressure, you miss out on sleep and exercise and eventually you know you’re losing. I know I’m feeling the strain when I start doing things I never normally do: putting my keys down in the wrong place and spending half an hour hunting for them, or snapping at someone at work. For a day or two, going to the hospital and letting somebody else take over the job of caring for Julie is a secret relief.

Of course hospital is not an easy solution and not a viable long term one. Acute psychiatric wards can be tough environments, even when they try to be comfortable and welcoming: impossible to disguise the amount of human suffering they contain. This is Julie’s first stay in an adult ward, and there are new norms and protocols to adjust to. Everyone seems so much older than her; everyone seems to smoke. Visiting there after a long day at work is a strain, and Julie is missing out on college. But they try to relieve distress, it’s a place of safety, and the initial plan is for her to come home again very soon.

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For the last few months there has been some quiet activity going on in the background of our lives here: a hall booked, a band engaged, and invitations sent out. Last weekend it finally happened: our family had a party.

We are not the kind of people who have a lot of parties. We’re quiet, and even before Julie got sick we would rather have had teeth pulled than arrange a big event. But when Julie got sick, we became very very unsociable indeed. We just didn’t have the time or the energy to talk to people, or even begin to explain what was happening to us, or how terrible we felt about it. We could scarcely get to work, or look after ourselves, let alone share a cup of coffee or send a Christmas card. It was only very imaginative and very determined friends that managed to keep in touch.

It’s been five long years and for the last couple of years we’ve gradually started to dig ourselves out of our shell. We lost some friends during the bad years, but adversity meant that we made some new ones that have become much dearer to us. We’ve recognised how vital friendships are, and that different friendships have brought us different things, the value of which is not always obvious at first. Sure some people shared our grief and pain, but we’ve also learnt to appreciate the people who didn’t really get it, but still stopped to talk to us, and offered help. We’ve got better at talking, and better (and bolder) at talking specifically about mental illness. We’ve also learnt to incorporate a near-permanent state of crisis into our life and carry on regardless.

This year, I decided I wanted to have a party to celebrate everything we have achieved, and to mark the fact that we have survived (so far) and that we do have such good friends. At one point, feeling very unwell and forced to have an operation, I almost called it off, but I’m so glad I didn’t.

It was a fantastic party: everybody was on good form, the food was great (not my cooking, but caterers!), the music was brilliant. People came from great distances, everyone stayed until midnight, people brought out guitars and jammed with the band, teenagers fell in love. The next day we just sat around and dissected it endlessly, reliving the funny moments and the nice moments, while other people sent us dozens of emails to say what a good time they’d had.

It was a brilliant night – a night to remember. Now when I look back on these years I won’t just be remembering the rubbish bits, I’ll be able to say, “Do you remember when we had that party?”. And we did it all by ourselves.

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Jane Eyre: how I hated that book! For two years we slaved over it at school, reading and rereading it, our set text for O level. It’s strangeness, it’s originality, it’s rich vocabulary, all ground into dust. I can still remember the horror, when we read it aloud round the class and I was handed the midsummer night scene in which Jane and Rochester finally declare their love to one another. I was fifteen: I was scarlet, mumbling the Victorian endearments.

It was thirty years before I could bring myself to read it again. I had remembered the plot, there are still a few passages I remember word for word (“Reader, I married him.”). I had forgotten what an odd-ball Jane is, and what a bully Rochester can be. But I was surprised at what I had misremembered.

Everyone remembers the madwoman in the attic: Rochester’s first wife. Bronte’s nightmare depiction of madness is still haunting, still buried somewhere deep in our collective unconscious. The lunatic, shut away from sight, raving and dangerous.

But though that image had remained vivid, I had misunderstood it. According to Rochester, “it is not because she is mad I hate her.” He hates his wife, he declares, because she has “a nature the most gross, impure, depraved I ever saw”. Had Jane gone mad, he claims, he would care for her tenderly. The madness is an inconvenience, preventing him legally divorcing from a monster. His wife’s former “vices” are rather vague, mixed up with the discovery that her mother was “a Creole”. We are left with the distinct impression that the first Mrs Rochester’s sin was not so much to be secretly mad as secretly black. “Her family wished to secure me because I was of a good race” says Rochester smugly, and Bronte does not bother to discuss this.

It may have been obvious to Victorian audiences – comfortable in their notions of racial superiority – that Rochester’s West Indian marriage was “impossible”, even before his wife went mad. But all that remains to modern audiences is the raving lunatic with her hideous strength and low cunning. In endless dramatisations of the book, this is all that appears on screen: any undercurrents of racism are written out. Perhaps they, like the book’s religious fervour, are too unsettling.

Myths about mental illness are strangely persistent. Downton Abbey, written recently, screened last year, rehashed the Rochester plot line: a character, under pressure to marry his girlfriend, reluctantly reveals the existence of a wife in an asylum from whom he cannot divorce. There is not even a fig leaf of “incompatibility” here: it is clear we are meant to sympathise with this man’s plight. He is, after all, a good chap, and clearly the mentally ill are unlovable and not fully human.

Give me Charlotte Bronte any day. An old unreconstructed racist she may have been, but she did try to give Rochester a better reason to hate his wife than her descent into illness. As Jane herself says: “It is cruel – she cannot help being mad.”

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Joe and I finally managed to sit down and have a useful conversation about how we felt about Julie’s continuing self harm. It’s difficult to find time for this sort of complicated and subtle conversation when you are both busy working, and also trying to manage the practical problems of having to care for a member of the family with such a serious mental illness.

Such a conversation was long overdue. We were both having difficulties with the situation. Incidents still occur regularly, and there is no sign yet of them coming to an end. Julie has been improving in lots of ways – she has been on a very successful work experience placement for example – but she is still ill. In the bad old days everybody knew that she was ill; these days not many people realise what goes on behind the scenes, but quite a bit still goes on. She had to call for an ambulance for example, the other day, to the astonishment (and alarm) of many of our neighbours.

The problem in the long term for parents is that you don’t stop reacting, and the reaction doesn’t stop being painful and destructive. When there is a particularly frightening or messy incident, you experience a wave of distress and anxiety which can continue for days, long after Julie herself is beginning to bounce back. It doesn’t really matter whether you’re very actively involved in the event – getting stuck in with the First Aid box and then sitting with her in A&E – or just hearing about it afterwards from your partner.

Nor does there seem to be any way of protecting yourself, keeping the emotion boxed in, or bracing yourself for the impact. I know that some families reject a child who has serious mental illness (quite a few end up in care) and I can see how for some families this is the only solution that gives them a fighting chance of survival.

Sometimes I get angry after an incident. I got more angry when I was recovering from an operation and I was feeling physically very vulnerable. Joe often gets angry. It does feel sometimes as if all the love and care you pour in is being rejected, and it can take a day or two before you can forget this when you speak to them. Joe still feels guilt too – I stopped feeling guilty long ago – but he still wishes he could keep his little girl safe and stop these bad things happening to her. Both of us experience feelings of despair and hopelessness, overwhelming grief, sudden flashbacks, and difficulties sleeping.

It’s important to acknowledge these huge emotions and their impact on us and on Julie. There’s no point trying to pretend to Julie that we don’t feel anything, as if we were automatons. At the same time, we have to be careful not to beat up on her when she herself is at her most vulnerable. How easy it is to let the anger slip out, to list all the things she has jeopardised, to threaten and invoke the spectre of the disaster she has almost brought down on our heads. The hard thing is to find safe ways of saying “We love you, we hold you, we hate what you’re doing to yourself, but we know we can’t stop you doing it. We will go on being here for you no matter what you do.”

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Remember staycations, when we all stopped going abroad because of the recession? Well I’ve gone one better by not even leaving home at all. In fact two better because I’m still working during the days!

Julie and her dad have set off for Scotland, leaving me to look after Duncan. We get on pretty well, my son and I, but we’re not exactly in each other’s pockets. So once I’ve cooked supper for the two of us I have most of the evening free. Hours! With almost complete and solitary control of both the television and the stereo.

I love Julie so much, but it’s only when she’s away that I appreciate how much time her illness takes up; how much time I spend checking in with her, discussing problems, dreaming up new strategies. Only now I realise how many things I do every day just to make sure she stays OK; how many TV programs I watch that I don’t really Iike, just to keep her company, how much food I prepare just to make sure she eats sensibly, how many emails I compose to the school or her care coordinator. And then there are the many things I don’t do in case she suddenly needs me: get lost in a good book, listen to music I love, phone friends, have a second drink (in case I have to drive).

We all do these things for the people we love; we all have moments when we grumble about it; there are far worse things in life than having to compromise on the television you watch. But oh what a luxury to have a few weeks alone!

So for the next couple of weeks I’m going to spend my evenings watching some operas on DVD, reading lots of books, listening to lots of music, and down a few extra beers. That’s all I need from a holiday at the moment.

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This week I am not going to talk about myself but about my friends Sue and Paul and their daughter Eliza (obviously, not their real names). And for once I’m going to post this simultaneously on both my blogs because I know different people read them.

Eliza, a couple of years younger than my daughter Julie, has her father’s height and her mother’s dark good looks, likes films and train rides, and is also nonverbal and severely autistic. In parenting terms, this means that Sue and Paul have been dealt quite a difficult hand, but they have accepted this challenge and developed their own ways of managing her condition. And the remarkable thing is, that though their life is necessarily different because of Eliza’s autism, Sue and Paul don’t let this define them. They are a joy to visit, very attentive to guests, funny, observant and generous. Paul still manages to work outside the home, they live in a wonderful (if anarchic) old farmhouse, and they still make time for Eliza’s younger brother. And they have often been extremely kind to my daughter Julie, going out of their way to help her see that there is a good life to be had out there beyond her own immediate troubles.

Julie and Eliza were thrown together at school. Our local authority, lacking any specialist provision for autistic children, arranged for Eliza to attend mainstream school, where an entire team of adults was employed solely to supervise her. In practice Eliza, like Julie, was mostly unable to attend mainstream classes, and so was largely confined to The Centre, a tiny (and cramped) in-school unit, catering for all ages and disabilities. Some of Julie’s friends were registered blind, some were in wheelchairs, one had cancer, some had learning disabilities, and Eliza had autism.

Eliza might not speak very much, but the girls struck up a quirky sort of friendship. After so much adult supervision, Eliza clearly preferred the company of someone her own age, and revealed an unexpected sense of humour. It was a natural step for us to start visiting her at home, where I would enjoy a cup of tea with Sue while the girls bounced on the trampoline together, Eliza shrieking with pleasure.

The story of how Eliza came to leave school and end up out of education altogether is a story in itself, but all I will say here is that Eliza developed epilepsy, and didn’t tolerate the drugs given to control her seizures very well. It was too much for the school: she was sent home. Sue and Paul coped, and educated Eliza as best they could themselves – because after all what else could they do?

But the physical illnesses meant regular trips to hospitals, and trips to hospitals with autistic children often entail some friction. Sue phoned me out of the blue last week, desperate: Eliza had been taken ill, they were at the local hospital, but Eliza, distressed by the wait, the lights, the noises and her assessment, was trying to leave, and the staff wanted to have her sectioned. This is the English term for being detained under the Mental Health Act. She phoned me because she guessed (rightly) that I had some acquaintance with this process. A psychiatric assessment team had been called, and they would have the power to detain Eliza, probably in a mental hospital, and give her treatment against her will (one could guess this would involve sedation).

I have some acquaintance with the Mental Health Act, but not much that was relevant to Sue. For someone like Julie it is better to avoid sectioning if you can: once you have been detained involuntarily, you can then be legally discriminated against for the rest of your life. We have always avoided the curse of sectioning so far by simply consenting to treatment. When Julie was Eliza’s age (underage) we consented for her. You can do this with a clear conscience of course if you already think this treatment is in the best interests of your child.

It was only when I hastily looked up the Mental Health Act for Sue following her phone call that I even realised that it applied to people like Eliza. Eliza is not mentally ill (as far as I know), but she could be categorised as having a mental disorder. If you have a learning disability, you can be sectioned if your disability is “associated with abnormally aggressive or seriously irresponsible conduct”. I feel ashamed not to have realised this, despite following Sara Ryan’s blog, which last year described her son going through exactly this process. This puts Sue in a very different situation from the one that I faced with Julie. My daughter was distressed and heading for mental hospital anyway: I could consent. But Sue’s daughter is autistic, she does not belong in a mental hospital. It is not in her best interests to be separated from her family. And I did not dare tell Sue that once in mental hospital, Eliza’s sedation and restraint would be almost inevitable. After our experience of local mental hospitals, I cannot see what alternatives they would have, when faced with the arrival of a traumatised and highly distressed Eliza on a Friday night.

Now this story does have a happy ending. To our great relief, common sense did prevail for Eliza. Although the regular hospital staff clearly felt out of their depth in dealing with her, once the psychiatric assessment team finally arrived (many excruciating hours later), they quickly recognised Eliza’s condition and rejected their request to have her sectioned. Their job was then to persuade the regular staff to attempt to treat her again, making allowances for her autism, and her high stress levels. How they managed to persuade them to do this must be one of their professional mysteries.

It is a nonsense and an abuse for us to threaten autistic people like Eliza and their families with sectioning because she does not conform to our rules of behaviour. We are not Victorians, and detention of autistic people is barbaric. We know a good deal now about how autistic people experience the world, the difficulties they have in adapting to it, and why they might behave in ways that we find inconvenient as a result. Tearing Eliza from her close and supportive family, and moving her to a new place with unfamiliar people would have been the worst of all possible decisions.

Thank goodness the psychiatric team agreed. But they should not have been faced with the decision. The Mental Health Act should not be available for use in these circumstances.

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Somethings never change. Five days after my thyroid op, I am healing up well but still a bit to go. But home comes Julie from school today, self harms yet again and has to be packed off to hospital for stitching. I must have done a good job at hiding my feebleness from her then 🙂

I have taken to writing more about these incidents back on my JuliesMum blog (today’s is here). I am not sure why I feel the need to separate out these two parts of my life: I suppose I am vaguely aware that not everyone relishes the (often rather gory) details. My JuliesMum blog is often read (or used to be read) by many people who have their own struggles with mental illness, who are neither surprised nor repelled by news from the roller coaster, but who may not have heard the tale from a carer’s perspective before.

It is hard for Julie at the moment, with exams looming and me out of action. I was a little harsh on her when I packed her off to the hospital, frustrated by being unable to change anything, but I am truly sorry she feels so bad. Let’s hope she feels stronger soon.

"A NEW NORMAL" by Celenia Delsol (c) 2021

M.A. Counseling Psychology & Grief Recovery Specialist

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