Books and Progress

I’m currently researching around Alzheimer’s and schizophrenia, for a non-fiction book I’m hoping to write, inspired by (apparent) similarities, and the seeds of an idea, which occurred to me whilst reading Lisa Genova’s novel, Still Alice, about a woman (Alice) with early-onset Alzheimer’s.

Now, I’m aware that schizophrenics see a lot of links and connections that “aren’t there”, so the book may not pan out as I’m expecting. It may not happen at all, because research may prove that the “links” I thought I’d seen are incidental, and therefore my “idea” falls before it’s even really taken root.

But that’s okay. We don’t have to complete a project that doesn’t turn out how we thought it would. It’s not “bad” that I thought I saw a link that, maybe, turns out not to be there. The success is that I held on to the idea, and my belief in it, long enough to manage systematic research, to cope with reading what others had written about people like me, that I managed to take other people’s ideas and findings, and explore them to the point where I came up with my own words, my own answers – and my own questions.

One of the things you learn when you live with a mental illness is that questions, even unanswered ones – perhaps especially unanswered ones – are okay. It’s not a sign of failure or stupidity to “not know”, even if, in these days of the internet, everyone expects you to have an instant response, an instant “fact” (supporting sources not required) that “proves” you’re “intelligent.”

Intelligence isn’t having an instant answer.

Intelligence is living with what happens to you, and learning something from it – even if that “something” is “I feel really rough when I drink pink lemonade after I’ve taken my tablets – there’s obviously some kind of interaction going on there that I should probably try and avoid.” Or “I get angry if I have to deal with difficult situations on an empty stomach. Therefore, I should probably try and set things up so that I can just get up and get breakfast, without stopping to deal with anything else, even if that means other people feel put out for a while.”  Learning doesn’t have to be deep to be worthwhile.

Anyway, I mentioned books.

One of the books I purchased for research is “Living and Working With Schizophrenia”, (Seeman, Littmann, et al, OU Press).  This book was published in 1982, and therefore a lot of the clinical stuff is now outdated – but the rest is the perfect balance between “social functionality is achievable in most cases”, and “there are certain ‘normal’ dreams and ambitions – a university education, or married life – that may have to be surrendered.”.

I know many people, with various mental health conditions, who have had to give up a university place because they couldn’t cope.  I was fortunate; I have a high level of awareness, and knew, on completing my A-Levels (the final two years of High School, for US readers – I’m in the UK) that I wouldn’t be able to manage the social demands of university, and would end up feeling very isolated. I’m fine when I’m working alone, but feeling isolated (which can happen even when I’m surrounded by people) is a danger zone for me.  So, I didn’t go.

Everyone hated me for “disappointing” them, for “letting everyone down.” Teachers and parents never stopped banging on about “what a waste of (my) intelligence” it was, that I wasn’t going to end up thousands of pounds in debt, and probably having a breakdown. I’ve been turned down for jobs I’d have loved to have done, and that I had the core skills for, because “we only hire graduates.” I’ve had the sneering “couldn’t hack uni, then?” comments from interviewers for menial jobs I had no option but to apply for.

I am married, but I wonder, a lot of the time, if my marriage is only successful because my wife is also neurodiverse (she has Asperger’s Syndrome, which has several parallels with schizophrenia, interestingly enough, particularly in the social implications sphere), and a woman with remarkably few expectations of what “a husband” should do, and be like.  We muddle along, we make do, we have our ups and downs, sometimes we hurt and frighten one another, we make up, we cry, we talk, we laugh.  I can, for the most part, manage my marriage, something for which I will always be  grateful. For reasons beyond neurodiversity, we can’t have children – and, as we’ve both discussed, on several occasions, it’s probably for the best that the decision as to whether to or not was taken out of our hands. I don’t think either of us could manage tiny, dependent humans. Not even working together.

Living and Working With Schizophrenia, although published over three decades ago, and four years before I was even born, has, in contrast to many more contemporary tracts on schizophrenia, made me feel normal, for the first time in  a long time. It has acknowledged that I, and others like me, has limitations, but also that those limitations are the least of my life.  It struck me, as I was reading Living and Working With Schizophrenia, that treatments may have improved, but attitudes have, in fact, regressed.

What is “normal”? Well, for a start, “normal” is different for everyone.

For Morgana, my wife, it’s being seen as a capable, intelligent woman, rather than a child who has to be “minded”. It’s being accepted as female even when she’s wearing more “boyish” clothes (she’s tall and skinny, so, even though she wears her hair long, the misgendering can happen, which, understandably, upsets her.)

For me, it’s being listened to and engaged with. It’s not being afraid of the world “outside.” (I mean this literally – there are days I don’t even make it into my back yard, because I live in a terrace, and the neighbours either side frighten me.) It’s not having to think “but what about -” every time I see an opportunity that interests me. It’s about having the same right to pursue careers that I can engage with, that motivate and empower me, as people without problems and limitations, and not just be fobbed off with a menial, low-wage job that is “good enough, considering.” (No one ever says what they’re considering, but it’s clear – “considering you’re crazy. Considering you can’t be trusted around decent people. Considering you won’t understand how employment works. Considering you don’t present well at interview. Considering you don’t have a degree. Considering you can’t drive. Considering they’ll assume you’re a junkie.” In respect of the last, the only drugs I’ve ever taken, other than those prescribed by a doctor, are caffeine and alcohol. In moderate quantities. The same as any “normal” person.)

That’s my definition of “normal”, and a book from 1982 sees no problem with my achieving that, as a schizophrenic person, a person with schizophrenia.


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