Archive

Physical illness

20140805-202509-73509057.jpg
My neighbour is in pain. Great pain. Pain to take her breath away and halt conversation. She is taking morphine. For these few days her world has contracted to her house and her boxes of pain relief.

My neighbour and I have been friends for some years, and it does not normally matter that she is older than me, old enough to be my mother. She does not like anyone to dwell on her age. But when I drop in to keep her company for a while after work, I am more conscious than usual of our age difference. This illness makes her very fragile, very vulnerable. I feel afraid for her.

This fear makes me awkward. When the morphine sends her into deep sleep, she doesn’t answer the door bell, or the phone. I hover awkwardly, wondering if I should use the spare key she gave me for emergencies. But is this an emergency? I don’t want to invade her privacy. I bring her chocolates and then worry that she might have no appetite, then books and worry that they might not be to her taste. I would like to do more to help her, but am afraid of offending against her immense dignity.

I try to imagine how I will feel when I am older, and might experience pain and sickness of my own. Will I have family near me? Will I have to rely on blundering offers of help from neighbours? Will I be afraid and lonely, or cheerfully resigned?

20140531-143717-52637639.jpg

I have been quiet for a while, immersing myself in keeping the household running, and everyone on an even keel while they sit exams. We are about half way through now and so far no one has missed breakfast, and no one has run screaming out of an exam hall. So that’s a success in my book.

Most of my (at home) job is reactive at the moment: I sit around being available for the next person who needs help with revision, or to go on a walk, or just to be distracted for a bit. We have watched lots of films (Julie) and documentaries (Duncan) and a lot of very silly sitcoms (everyone). I have explained calculus in words of one syllable, learnt the German word for mobile phone and copied out quotes from Lord of the Flies.

Meanwhile I have been having a battery of medical tests. How can so many tests involve fasting? It is cruel and unnatural. But the results of these tests are that I am in rude good health. Any pain I experience now is either imaginary or cannot be explained by current medical science. How charming to be told that lots of women of my age report similar pain – no hurry to try and find out what the problem is then. But the main thing is, I’m not going to die from it.

20140513-185754.jpg
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.

20140506-131808.jpg

“You will certainly go mad in that house alone, my dear. You will see visions. We have all got to exert ourselves a little to keep sane, and call things by the same names as other people call them by. To be sure, for younger sons and women who have no money, it is a sort of provision to go mad: they are taken care of then. But you must not run into that.”

The indefatigable Mrs Cadwallader in Middlemarch. I love the fact that for her sanity is obviously something you have to work at, and seems to boil down to having the right vocabulary! As if insanity was a matter of having an unfortunate dialect.

Recovery has not been as easy as I imagined, and has not always gone in the right direction. I have discovered once again that patience is not so much a virtue as a necessary life skill. Good books help: I am glad I saved Middlemarch to my middle age, when I needed something to get me through these interminable afternoons (and when I was old enough to understand it).

However things are improving and I am looking forward to getting back to normal.

20140428-171409.jpg

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.

20140425-081158.jpg
I had the most wonderful dream that I was walking in bluebell woods, just as I had really done a few weeks before with Joe, when I took this picture. In my dream it was the warmest and most pleasant of days, and I was indignant when I was woken from this dream, not once but repeatedly.

Woken by my kind jolly anaesthetist to say that all was well, the operation was over, and the clock hands had mysteriously turned through two hours.

20140423-091930.jpg

I prepare a list for Joe of things to do while I am in hospital recovering. The list seems to grow and grow! Belatedly I realise that I can never set down all the things that seem important to me in any given day.

It is not just a list of things to do – bins to be put out for collection, or people to be paid. It is a list of things to know, things to be aware of. Knowing that given half a chance Duncan will leave for school skipping breakfast, having nothing to eat until the evening. Knowing that Julie has a mock exam one afternoon, increasing the risk of a crisis and so avoid commitments you cannot break in a hurry. Knowing that Sandy who cleans our house has just had an operation herself and needs to be reminded not to do heavy lifting.

All these odd bits and pieces make up a mother. All these stray items of information, injunctions and inspirations. Motherly tentacles reaching out into the lives of the family, checking the pulse, testing the temperature.

20140418-094123.jpg
Five more days until my operation – I feel a strange mixture of hope and fear. Hope that this will finally “fix” me.

Meanwhile Julie has been keeping me distracted: another crisis, written about in more detail on my JuliesMum blog (for those that like to read these details). But so far this week, I’m glad to say, she has managed a wobbly calm.

20140412-100927.jpg
You should be careful what you wish for. Told that I had to have an operation to remove part of my thyroid, I was frustrated to find that I would have to wait for some unknown period of time. I was warned that it would take two or three weeks for a letter to arrive from the surgeon, then an appointment to meet them, then the operation itself at some undefined date. Clearly there was no urgency in my case, but the wheels of the NHS did seem to grind exceedingly slow. In the meantime, so many things – work, holiday, friends – were piling up because I didn’t have the faintest idea when to expect my operation.

Sure enough the letter finally arrived, telling me to phone for an appointment. I phoned and phoned and left messages, but the number was not manned, and no one phoned me back. I did some research: it was the right number, but the department chronically understaffed. The letter said that I must phone within 7 days, and this time had almost run out: did that mean I might lose my place?

It was all quite stressful, and in the middle of it, Julie had a crisis, ended up in hospital again with an overdose, and for a couple of days I didn’t have time to keep chasing.

Finally, remembering that my company pays for private healthcare (of which I disapprove), I checked that I would be covered, and contacted the surgeon’s private secretary. Success! She picked up the phone immediately and within 10 minutes I had arranged to meet the surgeon in his private clinic in 2 weeks time. I sat back on my heels, astonished. Eat dust NHS.

But it was only when she phoned back later to check some detail, that I realised I had misunderstood. The appointment was not to meet the surgeon, but for the operation itself.

I was aghast! Now things are moving too quickly! I don’t feel ready to go under the knife so soon. And it feels positively indecent to have this surgeon cut into me without so much as meeting me first. By the time he sees me for the first time I will be unconscious. All the energy I had expended fretting about the wait now went into anxiety about the undue speed!

Of course I will go ahead in two weeks if I can: it is too convenient not to. Getting it out of the way will improve the outcome medically, get it finished before the children’s exams, let me recover in time for my holiday, and many many other benefits. I will just have to learn to live with my abandoned principles and my squeamishness.

However there is one sting in the tail: the operation can only proceed in two weeks if my notes are promptly passed from the NHS to the private hospital. And of course that means relying on the department secretaries who are too overworked to even pick up the phone 😦

20140327-172400.jpg
The situation is this: I am not terribly ill, but I am in some pain and discomfort, and feeling very sorry for myself. I wait impatiently for the date of my operation to be set, with a growing list of things that have to be put off or put on hold until I know. Can I finish planning the summer holiday? Can I promise to take Julie to a university open day? Can I commit to visiting my father?

In the meantime, my energy is in increasingly short supply, and must be meted out carefully. Did I really bake bread once? I cannot imagine kneading bread dough at the moment! The house has to run itself as much as it can. I have two firm sources of support: principally Joe, who runs all sorts of errands for me, often when he is exhausted himself, and who is the proverbial pillar of strength. My other ally is the Internet: now I not only order food, but whole dinners. If you live in England, I can thorough recommend family meals from Cook, which are delivered frozen and can be heated up in the time it takes a teenager to ask (sulkily) “what’s for dinner?”

Two things that I find the energy for because they are life-affirming. My office now looks over the botanic gardens, and I walk there every lunchtime, come rain or shine, absorbing the colours, the blossom, the textures, the smells. The other is music. I have signed up for a short online course to learn about Beethoven (from Coursera) and wherever I have ten minutes alone I listen to a movement from one of the piano sonatas: really listen, not have it on as background music. Both of these are luxuries I could not even dream of last year when Julie was so unwell and so dependent that I had no lunchtimes, nor ever ten minutes alone. How I relish this now!

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

M.A. Counseling Psychology & Grief Recovery Specialist

(Un)Diagnosed and still okay

The life and times of Bridget's family as they navigate an unexpected journey with a rare genetic syndrome

Sectioned

A blog about mental health & mental healthcare

purplepersuasion

Mental health blog by a service user with bipolar disorder. Winner of the Mark Hanson Award for Digital Media at the Mind Media Awards

Brotherly Love

A personal exploration of autism from a brother’s perspective, including family relationships, philosophy, neuroscience, mental health history and ethics

The Chatter Blog

Living: All Day Every Day: Then Chattering About It

partialinsight

Stroke and visual impairment

Lily Mae Martin

Life in particular

The Riddle Ages

Old English Riddles, Translations and Commentaries (Please note that we are no longer maintaining this website. Visit theriddleages.com for revised and brand new material!)

annkilter

What ships are for...

Thunderhawk Bolt

That weird kid from school... all grown up

The Small Places

Life in particular

The Bipolar Codex

Kate McDonnell: Art, design and bipolar disorder

Life in particular

Premmeditations

Reflections on premmie parenting