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OF HER OWN VOLITION

I had imagined that when I quit my PhD, I would spend several months flailing around in a mound of mulch. I wouldn’t have the wherewithal even to get out of bed, now that all the external demands on me were gone. I would ponder, sadly, what will possibly become of me.

To my surprise, that is not what has happened. In fact, the very day after quitting I left the house early with a spring in my step, and went to the centre where I had (reluctantly, up till that point) been working on my writing in an artist residency. That day, I felt so excited I almost couldn’t breathe. It felt like I had taken off some scummy glasses and finally could see the world in high definition. Gripped by a manic intensity, I spent hours filling pieces of paper with lists, with thoughts and dreams and ideas and things I hoped to make.

That was two months ago, and since then things have continued the same way in a stream of sustained and joyful creativity.  Since deciding to quit my PhD I have made connections with a community of artists and writers who I meet several times a week for supportive co-writing. I have formed a “Shut-Up-And-Write” group, taught a workshop called “Writing Under Pressure”, initiated a large-scale collaboration between different cultural organisations to create a festival of self-publishing, collaborated with another writer on a zine about teenage-hood, written and performed two highly acclaimed Moth StorySlam stories, met with an associate professor to discuss our mutual research interests, co-facilitated a reading group session on critical disability studies, collaborated with another writer on a zine about teenage-hood, conceptualised two collaborative book projects together with my partner (one popular academic and a children’s book series) and completed the text for three brand new zines.

Writing this down, I am very surprised at how long this list is.  I am surprised because this has all felt so effortless. Reaching out, making connections, contacting the right people, finding a place to work, sitting down and coughing out the words each day. It has not been draining, not one iota. On the contrary, it has been the very definition of enlivening. The quiet and sweet contentment of every day, of a day well worked and well lived is a reward in itself.

I don’t write down this list as a celebration of productivity for its own good. I don’t think there is anything inherently good or morally righteous about working hard for its own sake. If I had spent those months doing nothing it would be an equally valid, equally worthy course of action. (although of course hard to be with in different ways)

I write down this list as a quiet celebration of a long-awaited reunion with my mind. For the last four years I have treated my mind as a problem. As something that would never goddamn obey instructions. As something I had to medicate to force it to get into line. As something broken. Something I could never rely on. I have been in a constant, deadly warfare with the way I think, work, move. Scared that if I relaxed my efforts at control for even a second then everything would go to pieces. Well, guess what? “Everything” – ie. my PhD – has gone to pieces. There can be no illusions of control anymore. I am a failed academic. I have flunked out, fucked up. I have lost the game. From an academic career perspective, things couldn’t be any worse. But my experience of living in my (AD/HD) mind hasn’t felt this good for a very long time.

 

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What’s in a name?

The other day I watched a documentary called “Hearing Voices” about schizophrenia and the stigma of that medical label. The documentary followed a group of people who preferred to describe themselves as “hearing voices.” They made the argument that everyone has voices in their heads, that what is called schizophrenia is simply an intensification of that, on the same continuum. And that these voices are much better coped with when they are accepted and seen as a part of a person, rather than something foreign and dangerous that besets them from outside, and that should be gotten rid of.

This and the conversation that followed got me thinking, again, about labels and disability. I can understand their argument very clearly, and why that is an empowering position. Especially, as someone pointed out, because schizophrenia is such a particularly stigmatising diagnosis – associated with violent crime, and insanity, and treated with drugs that have horrific sedative side effects. On the other hand the normalisation of the condition (“we all hear voices”) seemed to me to have the danger of erasing the very real difficulties that people living with mental illness can face.

People often identify, for example, with certain AD(H)D traits – being forgetful, disorganised, or late for example. Hence they flippantly say stuff like “Oh i’m so ADD.” And yeah, I can totally see that these behaviour traits lie on a continuum. Especially in a world of technological devices which seems hell-bent on disrupting sustained attention.

On the other hand, seeing ADD as “normal” erases the ways that my life is anything but “normal.” It erases the fierceness of my self loathing when I can’t get to do a task which other people see as simple. It erases the disorientatingness of living a life which always seems poised to disintegrate at the seams. It erases three years of burnout and depression as I try to finish my PhD. It erases the very real disability of ADD, helpfully encapsulated within the medical diagnosis which becomes a kind of symbol, or short-hand, which university administrators can understand at a glance.

And yet…that label, that symbol, in it’s potency is also dangerous. It can be overshadowing. It can signal things to a future employer that I don’t want. It can determine how teachers treat a child in a classroom, or how parents imagine their potential. It is a double-edged sword.

I am lucky to have come to this diagnosis at the age of 30, as a critical, empowered grown woman who could choose how to use it. It was never foisted upon me by a school or parent. I wasn’t signed on for a lifetime of stimulant medication use before I could decide whether that was what I wanted. I have been able to be strategic.

My take on ADHD as a disability is this: Disability is a co-creation of your environment and your body (or in this case, brain). Therefore, adapting to and supporting disability should not be seen as just the task of the person (body/brain) but also the environment. In the environment of a PhD programme with erratic supervision, ADHD is for me a real and substantial and distressing disability, and should be recognised as such. (PhD programmes emerge as a trigger for bad mental illness of many kinds and the broad causes for this should be examined much more deeply.) In a different kind of job with more structure and support, ADHD recedes into the background. Yes, it is still there. Is it a disability? No. I think that analysing disability and mental illness in this way is much more responsible. It doesn’t erase the real conditions people have. But it locates the bad effects of these conditions in a much broader way. In a society that stigmatises mental illness. In a building that isn’t adapted for a wheel chair. In an academic culture that prioritises speed and funding outputs over individual well-being.

giving up

I write this post from bed in my parent’s house in Cape Town. My father has included me on his morning rounds, and brought me a tray of delicious coffee and toast. I will be here for the next six weeks, far away from my love and the fledgling life I had built for myself because I wasn’t coping on my own. For a long time I thought that I was. There were these good days and minor victories, times when the writing went well and I was less frustrated. But there were more bad days. It is hard to describe the hardness of ADD (and specifically, writing a thesis with ADD) because it is all so mundane. It sounds so mundane. Another day without being able to concentrate. Another month with a deadline slipping by. Another letter to a supervisor trying to explain that no, I am not lazy. It didn’t happen, but not for lack of trying. These things sound petty and minor but they end up taking over your life. Frustration and hopelessness winding its tentacles into everything until one day you wake up and feel like you can’t breathe for anger and disappointment.

My mother suggested that I could come home and I realised that I should jump on that like a life-line, which it is. That all this time proving that I am competent and independent has made me blind to some of the real support waiting for me that I’m privileged to have. So I gave up on the daily hustle on my own, and told bosses, co-workers, house-mates, friends: “I’m not coping. I need more support.” It felt almost sacreligious to say those words. I am so trained in covering up, hustling on, because truthfully I need support all the time. So saying it out loud, and then receiving love, sympathy, kindness, accommodations was strange. But good strange. Throwing up my arms and saying, “I don’t know how to do this” feels good. It is a defeat, but a sweet one.

“just” do it

you know those dreams you have sometimes when you’re trying to run away from something, but you’re stuck, you can’t move? That is how it feels sometimes to have ADD. All these tasks pile up, like dirty laundry. From the outside, it seems easily done. Just put it in the machine, turn it on, hang it. Just tidy your room, just return those e-mails. All these “justs”, and yet sometimes (often) it is impossible. The dirty washing taunts from the corner of the room, the unanswered e-mails yank at the corners of my mind, and day after day after day I am stuck – suspended in space.

About obsessive thinking

 

[letter from another student and my response]

early 30s F PhD Student ADHD

from:  xx sent 5 days ago

Hey, how are you? I read your posts with interest because I have the EXACT Same problem with obsessive thinking when my PhD stuff gets tough. I was supposed to finish writing this year and spend the first 7 months of 2016 obsessively reading about the stock market and playing stocks (ugh) and just realized today I have finished NOTHING this year.

Have you managed to make any progress with obsessive thinking? How do you cope with the PhD stuff when you look around and everyone is moving forward and you’re underperforming? The emotional stuff is the worst part…

 

re: early 30s F PhD Student ADHD

to: xx sent just now

Haha oh dear – I hadn’t even thought of playing stocks. You’re giving me bad ideas 🙂 Thanks for getting in touch, it’s really nice to hear from someone in the same position.

I managed to make a lot of progress with the obsessive thinking by going to therapy for 2 years (thank you public health system) Yup, no short cuts. My therapists (I saw one then another after they had left) had 2 techniques, both of which made a lot of sense. Therapist one guided me deeper into the obsessive thoughts (which were about flats that we should have bought instead of the one that we did.) He asked me to tell him about it, what did it look like,how did I feel there? What was life like there? In my vision of the ideal flat, it was beautifully tidy. I felt happy and I was entertaining friends at a barbecue on my balcony. In my ideal flat, I realised, I didn’t have a PhD. I also didn’t have (the symptoms of) ADD. That thought experiment helped me to see that the fantasy was about a wish for a more peaceful life without the godawful burden of writing a dissertation, rather than logical worry about a disastrous decision that had been in my control about which flat to buy. Therapist 2 had a different technique which was to advise me not to engage with the thought spiral at all, but instead to ask myself the question: “What do I need”? when my thoughts got too frantic. Often, the answer that would bubble up was quite concrete, like “I need to get some rest”, or a bit vaguer “love”, or “security.” She trained me to see those obsessive loops as a little cry for help from myself. Refusing to engage in the mental warfare but instead asking that question sometimes brings me back down to earth.

For people that live so much in our heads (I am presuming that you do too, as a PhD student!) and are pretty smart, it can be tempting to believe that thinking can solve everything. Since I was very young, I have relied on my thoughts and analysis to work out what was going on, strategise, and survive the world. I guess the last few years have taught me that those same lightening-fast thinking faculties can also trap me. In this situation, one small action is worth a thousand thoughts. Cleaning the kitchen or folding some clothes instead of (or as well as) fantasising about the flat where everything looks perfect. Dragging myself to a cafe and bribing myself with a good coffee if I read one article instead of spending the whole day beating myself up for not following the perfect and ambitious study schedule I had set for myself. Moving my body in a dance/yoga class instead of sulking in bed surfing Facebook. These actions are the best possible balm for obsessive thinking.

Phew! Ok, that was a very long reply to your question. How are things going for you? Do you have support for ADD, and are you “out” in your university environment? How do you deal with the stress? And also, what part of your work do you like? Lots of questions…I’d love to hear about how its going. permalink

So very out of control

All the years I have spent berating myself for not being good enough, for losing things, for working inconsistently, for never being able to keep up a diary, have concealed an underlying, insidious hope: if I try hard enough, I will not have ADD. I will work consistently. I won’t lose things. I will remember to e-mail people back. I won’t make sloppy mistakes. All of that is possible, I think, if I persevere. When the cold hard facts show that the work is still patchy, the mistakes still happen and my inbox contains several thousand mails, I get completely furious. Because in my logic this must mean that I’m just not really trying.

On the one zillionth repetition of this particular cycle of blame and recrimination, it suddenly occurred to me that maybe I am wrong. Maybe the real truth is even scarier, and for that reason harder to accept. Maybe, I really can’t help it. It’s not in my control and no amount of internal screaming will change that. Let me repeat: It. is. not. in. my.control. that. I. have. ADD(and that I will therefore behave like I have ADD). Yes, there are strategies and APPS and approaches. Yes, you can learn to deal with it as best you can. But I will always have bad days. I will always have a mind that can go from sharp as glass to a foggy blur. I will always worry that I can’t translate myself in a language that other people will understand. I always find it difficult to sustain more than one conversation at once, or be in a group at a party. I am disabled. Yes, disabled. And this is what it means.

There is a wonderful book of essays by psychologist Stephen Grosz called The Examined Life: How We Lose and Find Ourselves. The one story which sticks in my head above all others is about an exceptionally disturbed boy the psychologist worked with. The two of them had a tumultuous and terribly frustrating therapeutic process where the boy did everything he could to anger Grosz (spitting, swearing, shouting anti-semitic curses) and Grosz, despite all his psychological training, could not help getting riled up, stuck, furious. In a consultation with another wise psychologist he came to understand that the boy and him were continuing this fight because they were avoiding facing something very painful: that the boy was unfixable. He was too damaged to be helped. There was nothing they could do, even though they both desperately wanted to. Staying in that cycle allowed them to drown out that reality in angry noise because they weren’t ready to deal with it yet.

For me, this story provided a key for understanding my situation, my mental rage when things don’t go the way I want them to. It is a loud performance to try and pretend to be in control, while actually sometimes there is nothing to do and nothing that can be done.

And now for the silver lining

The last post turned out to be mostly about murk. But now I wanna do a brain exercise where I try to discern what this is all for. SO often writing a PhD with ADD feels purely like a ball and chain. An unfortunate circumstance I have to try to get the fuck out of as soon as possible. Now I want to think about what good has come out of not only the PhD but the battle of the PhD. The battle as battle. Yes, this is a Pollyanna exercise.

  • It has forced me to get diagnosed with, and get support for, adult ADD. This means I understand myself a zillion times better and even more, understand my mother and aunts and other ancestors who I have no doubt inherited it from. I also understand the impact on my relationships and can talk about it honestly and openly with Annelli.
  • I now know without a shadow of a doubt I can never do an unstructured academic project again. I know what can of work will make me happy and able to work with ease when this is all done.
  • I have a huge amount of compassion for people with mental illness, not limited to ADD. I didn’t have this understanding before when I was sauntering along without the demons.
  • I have a much more conscious appreciation for ADD gifts like hyper focus and wild creative thinking that I didn’t have when I thought I was just normal
  • I have been forced to find and learn survival strategies – walking, free-writing, artists’ dates, dancing and to be vigilant about actually doing them. I feel like now I’m able to survive almost anything.
  • I have awoken the fiction writer in me. The one who has tantrums when reigned in by academic prose. I’ve finally learnt to listen to her and let her write too. That had led to a sense of deep peace and simmering excitement.
  • I have learned how hard it is to be an academic with a divergent mind. (or even a converging one). That has led me to develop a whole exciting new strand of work about learning to be an academic and write with creativity

 

Murky silver lining

Speaking to my mom on the phone the other day, I started to tell her how I’ve been feeling really depressed the last couple of weeks – what I read is a “secondary” depression common to people with AD/HD who just get so fucking frustrated with the effects of the disability – the wearing down of small failures, disappointments, stress from bad planning, unreasonable expectations and so on and so on. I have also been reading about “high-functioning” depression and how invisible it is so that people who appear to be successful and together are not able to get recognition and support for also being depressed, how high-function and depression aren’t mutually exclusive.

With that in mind, it feels important to make visible my depression when it’s there. That has made for some awkward conversations. People most often suggest a fix. I don’t know what I want them to say, but it’s not that. I don’t want them to suggest things as if all I am is short on solutions. I am not short of ideas (no person with ADD is) but I am short of support. I think that what I want is for them to see the murky world I’m in, and to sit there with me. That sitting isn’t comfortable or easy to fit into conversational conventions and I don’t even know quite how you do it, but that’s what I want.

The other day I spoke to a very close friend who was feeling very bad. Having had this experience, when she told me about it I didn’t launch into my own list of fixer-uppers (and I have a few). Instead, I went quite quiet and then said, “I’m sorry babe. That sounds so hard.” She suddenly started crying, and I let her.

 

Paying Attention

I have no deficit of attention. If anything, I have too much attention, and a skin as thin as a grape. Just on my walk home from the library, I noticed the following things: the broodly alcoholic who sits on the porch with his dog drinking beer all day is still there. He still doesn’t want to say hello. Rounding the corner, I came across an elderly man and woman, reading on their veranda, surrounding by gladiolus. He was reading a newspaper and she a book. They looked a picture of balmy contentment. Further up the street a crack in someone’s fence revealed an entire Chinese family of many members sitting on the lawn on plastic woven carpets, playing some kind of game. And across the street from them another elderly woman who is always busy with her garden was sweeping up frangipani flowers from underneath an enormous tree – a hopeless task which she does with gusto every day. I noticed that tonight the sky got a rosy pink and a far away church lit up a cross on it’s roof, neon-blue. I noticed that there are birds on the telephone wires, and on a faraway football field a group of little boys played a big match. World, you have my attention. You are beautiful.

 

 

The dancing cure

Last night I remembered something I had forgotten: I need to dance and carouse, or I will wilt. And zumba doesn’t cut it. It needs to be a smokey, boozy environment, music vibrating and sludging out of the speakers, bodies writhing around me, the dance floor a hot mess of energy. When I am there I feel power radiating out of my fingertips. I feel like the world could end mid-song, and that would be fine. I’m not so scared of dying, because I’m thoroughly alive.