on co-morbities and dealing with the losses of chronic illness.

as most of you know, i’m on twitter. a lot. in fact, most of the time i have twitter running. the constant stream of phrases and conversations and ideas is soothing and comforting, and it is this organic place where you come to know strangers who soon become friends. facebook is like a house party of people you already know, and possibly don’t like but feel obliged to talk to – twitter is like going to a really rad bar full of strangers, and starting up conversations with people who are soon really important to you.

anyhow. one of the twitter accounts i’ve followed off and on for years is by a woman who goes by the online moniker jaythenerdkid. you can find her HERE, which also links to her publications elsewhere. she talks about mental illness in a way i read as being that sort of need to talk about it – the need to be open. it is not brave. it is survival. she also does this in light of a huge follower count, and frequent attacks by mobs of people – she remains honest. it is a tremendous gift, to do this. this is not an easy thing to do. i admire her ferocity, her willingness to talk about her experiences as a PoC in both australia & the US, the experience of being a Muslim woman, and mental health and chronic illness. her account is one that i find benefits from actually reading it on her page, rather than just in the feed – i know quite a few accounts that i feel benefit from this sort of reading.

Anyhow, today, Jay was talking about her experiences with the brain damage that comes from mental illness. this is something i find a remarkable number of people are unfamiliar with. depression – especially the severe, chronic sort that comes with a bipolar, BPD or a clinical depression diagnosis – damages your brain. i have an ultra-rapid-cyling special sauce version of bipolar I, which tends to have a really acute effect on memory. my memory is terrible. it is embarrassingly terrible. i forget words, places, people. i have even less sense of direction as i ever did (which was not much to start with). my spacial awareness is laughable. and this is co-morbid with chemo-brain. chemo-brain makes everything fuzzy, like mould is growing on the surface of your thoughts. everything slows down, and gets forgotten. i can’t remember what i tell people, what i’ve told people. i forget words frequently, in the middle of a sentence. my sharp mind is dulled.

i have spent a lot of my life investing my sense of self around being intelligent, as many ‘intelligent’ people do. i have done well: i had high marks at school, finished in the top percentile of things, i did well in my undergraduate degree and gained a full scholarship for my masters. i scored my dream job before i had finished my masters degree and was awarded a lucrative fellowship to work in the US for two weeks, fully funded. these things mean nothing in the face of the fact my sharpness is dull. i am a butter knife.

so this makes me re-evaluate my sense of self. the fierceness of depression is something i’ve not had in a long time – my bipolar, after 8 months of different brutal meds, finally responded to the combination i am on now in 2012. i have had minor/moderate depressive episodes, but it remains manageable with additional variations to my standard medication protocol. i experience mania, but i do not experience depression. and i can deal with the mania. i am lucky. but the damage is done. the chemo brain can improve? but might not. the damage is done. so what am i, without that sharpness? who am i now that i can’t recall where i bought every one of my books, and forget the name of co-workers i supervised. what will become of my career when i return to work, with my capacity to concentrate low, and my ability to quickly write box lists, or intelligently compose short texts for catalogues possibly damaged?

there are things i work at to improve neuro-plasticity. this is because, right now, one of my co-morbities is in remission. the fact i am not depressed means i have enough energy to read up on techniques on how to try and work around my limitations. i negotiate long term memory by emotions, tastes, and smells. i am doing new things – playing computer games again, which i haven’t done in ages. i am letting myself avoid thinking about Difficult Things because sometimes, i just need a break. and i am reassessing my ego, again.

what are you, when something fundamental to your identity has shifted? what am i frightened of? i am scared, and angry at the changes which chemotherapy & depression have bought upon my brain. i am furious that there is almost nothing about the co-morbidity of depression and chemotherapy in terms of brain damage. and i am sad that i am a butter knife and not some sharp blade.

but. it makes me question what i should value most about myself. should it be that i am fast on my feet, intellectually? should it be the cleverness that i used to define myself by? or should i try and become a person focussed on being aware of who i am, right now, not who i was last year? i want to aim to be kind, and generous with my time, and a good friend, a good partner, a good relative. what is it to be good? i don’t even know, really. but i need to reframe myself, away from focussing on the fact that i am smart and able to do nice things with words sometimes, and learn, remember, to value things about myself and others more than i value intelligence, whatever that even means. i am someone who is tenacious. i am, as one of my facebook friends said once, TOUGH. i am stubborn, and i try to be kind. there are a lot of other ways i would describe myself, and i need to do this around things other than ‘i am smart’ or ‘i remember things’ or ‘i have an idea of space around myself’ because these things have slipped. i may still be smart, but i have lost chunks of my capacity. i used to be better. i used to be more than this. but the value of a human being does not lie in cleverness, or in memory. for me to say that suggests that smart people are better, or have more value. they do not. and the whole idea of intelligence is so much more complicated. i have acted in ways that were not at all intelligent many times: how does ‘being smart’ fit in with that?

i need to let go of the anxiety i feel about my memory. not because i want to, but because the grief at yet another thing cancer and bipolar have taken from me gets too much sometimes. i need to find a way, somehow, to navigate this and to stay alive and not be consumed by the bitterness of what i have lost. i am here, alive right now. despite probability. despite the cancer, and the bipolar, both of which are doing their bit to chisel away at my life.

everyone copes with it differently. i respect Jay for talking about the grief of it all – that we are alive, and we grief as we feel parts of ourselves slip from us, one tiny bit at a time. one breathtakingly terrifying moment. this is what it is to grow older, keep moving, with chronic illness. we lose parts of ourselves. and i guess the only thing we can do is restructure what and how we understand our-self and try and keep going, with the lights slowly dimming. we learn to feel our way with hands, rather than seeing. we muddle along. and we try and be this new person, who lives in a fog, hands out in front, wading through the greyness.

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About elizabeth

various things.
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2 Responses to on co-morbities and dealing with the losses of chronic illness.

  1. greenspace01 says:

    I hate losing my sharpness. I loved having a good memory, being quick to learn things, quick to see possible solutions to problems. I’ve been frightened of losing my intelligence and memory since I read Flowers For Algernon in my teens. I grieved for my mum’s losses when she had dementia (which she hated too). But you’re right; there is so much more to any person than cognitive ability. And butter knives are less likely to cut someone than sharp knives are.

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