You don't have to understand the world. You just have to find your own way around in it. - Albert Einstein

Monday, 3 March 2014

on Madness, a Memoir by Kate Richards, and Not Being a Doctor

It's often not good for me to read books that are detailed descriptions of other people's mental illness. I'm glad that people are writing and publishing this stuff, it's vital for raising awareness in the wider community. But I find it difficult to immerse myself in such a book, to really go there along with the author. It just reminds me that I'm mad too, and of the suffering it causes in my life and others, and brings all that sensitive stuff up to the surface. I really appreciated this comment in this review on Readings - While I would suggest that this is perhaps not the book for those who are currently suffering deeply from mental illness themselves, it would serve as an invaluable resource for the people who work with and care for them.

So when I found Madness: A Memoir by Kate Richards in the library I wasn't sure I really wanted to read it. But there was one particular detail here that made me really want to try to read this book - the fact that Kate Richards is, herself, a doctor.

I was going to be a doctor. All through my later childhood years I had no doubt at all that I was going to become a doctor, and neither did anyone else who knew me. It seemed to be a given, a natural fact of life, that this would happen. But then it turned out that I had mental illness and temporal lobe epilepsy and I was never going to be able to attend a university long enough to acheive such a qualification. I didn't know, in the beginning, that it was going to be 'never.' I really thought I would get well enough one day to make that choice again. I thought that I was choosing to put university off til a later time when I would be in better health. But the years have gone by, and now I know. If it were possible, I would have done it by now. I've tried often enough. Now I know that it really is unattainable for me.

Quantum mechanics tells us that an infinite number of dimensions exist, in which all possible choices and alternatives in every life are respectively made manifest. I've always felt very aware of the reality of an alternative dimension in which I have better health and I became a doctor. I feel like it's just on the other side of some metaphysical sliding doors, just like in the Gwyneth Paltrow movie - me in a white coat, listening to patients tell me what's wrong with them. I sense her every time I go to a hospital and see all the equipment that I never learnt how to use, and all the forms and paperwork that I'll never have to fill out. I feel regret for this life that I never got to live in exactly equal proportions to the gratitude I feel that I don't have to live like this - the long hours, the fluorescent lights everywhere, the overwhelming responsibility squeezed by the limitations of a ridiculously inefficient and ignorant medical system. I am so, so, thankful that I don't have to bear those pressures, as much as I am so, so sorry that I can't help all those people who would have been my patients. I am so often aware of the contrasts of my potential and my reality.

Kate Richards is on the other side of the sliding doors. I could have been her. Kate Richards went to medical school and got her MD - with honours. I admit, I'm envious that she has something that I wanted. I'm reminded of another alternate reality I've always wondered about - the one where I do have health problems, but I also have resources that I saw others had, but I didn't. Middle-class people who have families who can look after them and the money to pay for treatment and support them. I've had to look after myself and rely on benefits since I was fifteen years old. My mother, wonderful, caring, person that she is, did not have the financial, educational or domestic resources to support me or know how to. My father didn't appear to have the interest. He did start paying for counselling and health insurance when I was nineteen, but after about two years I didn't get better. The cheques stopped coming and he suggested I get a job. I always found it so hard just to keep up with looking after myself. I was often envious of other people who could just go home to their parents or some equivalent when things got tough. I never had that option. I used to wonder, if I lived with family and had meals put on the table and someone to drive me to appointments and pay for whatever treatments would be best, rather than the ones the government is willing to pay for, could I have stayed at uni and gotten my degree? I really think I could have.

I hope I don't sound like I'm bitching about my disadvantages here, because honestly, I'm not. Again, my gratitude that things have worked out this way for me is at least equal to my regret. I'm also always aware how extremely lucky I am to have the benefits of a socialist society. 

Reading Kate's memoir, it seems that she has considered these issues as well, and it seems she agrees with me, basically. It turns out that Kate has the parents that I imagined in my alternate reality. Kate is fully aware of how much they help her, and does wonder at one point about the people who don't have that support. Hello Kate, here I am. I'm pretty fine after all, I just don't have a degree, or a house. 

But here, Kate has shown me a glimpse through the sliding doors that I had never seen before. She relates a conversation with a counsellor.

'You went to uni?' she asks.
'Yes.'
'What did you study?'
'Medicine.'
'Really?'
'Graduated with honours. In between hospitalisations.'
'How did you manage to pass your exams?' she asks.
'Bursts of extreme concentration. Some days I'd study for twelve hours straight. Other days I didn't get out of bed.'
'How about school?'
'It wasn't ever what I'd call serious depression at school. But I think it was more extreme than the normal teenage emotional rollercoaster. When I was seventeen I knew, I mean I really knew, that I could go on living for a couple more years at most. I was exhausted. Turning up to school every day and trying to appear normal when inside... I was a witch or a banshee or I was dead and rotting or I was just plain ridiculous depending on the day. It was exhausting.'
'So are you practicing medicine?'
'I can't. I mean I wouldn't - I mean if something happened, if I made a mistake because I was unwell, I'd never forgive myself.'
'All that training!' she says.
I look at her hard. 'Yes.'

There it was. The glimpse into an alternative dimension that I hadn't even thought of before. The possibility of having a medical degree, and then not being able to practise medicine. When the counsellor says 'All that training!' I can just about hear her say 'What a waste!' even though I'm just reading her words as text. I bet Kate gets that a lot, and it had never even occurred to me.

I think again about how things balance out in the long run, in strange, wonderful absurd or tragic ways. With every blessing lost, you release a burden.

One thing I've noticed about people with mental illness is that we compare ourselves to others. We consider how well or unwell we are compared to others, and how well we are coping. There are always some people who are coping better than we are, and some who are not coping as well. We compare our mental illness symptoms, our medications and their side effects. I don't mean to say that this is a bad thing - in fact some therapists see this as positive behaviour. I just mean that I've noticed that we do it. So of course, I am comparing my experience of mental illness with Kate's.

Reading Kate's account of her illness, I can certainly relate to a lot of her experience. The sense of familiarity for me in reading her story was heightened by the setting in Melbourne, in a lot of places that I knew. I could visualise scenes she described because I knew the locations. It always seem to give me a feeling of connection with an author, knowing we have inhabited the same spaces along our lives.

The main difference between us is that she has experienced psychosis, and I haven't. I have never actually had a psychotic episode. I believe I've been quite close to that state on some occasions. I feel like I've seen or sensed it just on the other side of one of those metaphysical sliding doors, but the door is just the sheerest of veils. I've felt the allure, the seductive quality of that state, promising a way out of the horrific certainty of reality. I've sometimes felt that I had to stay very still, and if I moved, I would fall into that state. But throughout all these experiences, I've known in some deep, certain part of myself that that world wasn't really real in the same way as the floor I'm standing on and the food I eat and the people who love me. I've known the difference, and never lost that knowing, and so, by definition, I've never actually been psychotic.

Still, even though the voices in Kate's head are a symptom of psychosis and mine are not, they have quite a lot in common, the way they talk to us. Hers have a fascination with rotting that mine do not, though they both agree about death, in particular, that we really should be dead. I appreciate that Kate has been so brave as to share her voices with us. Kate's voices sound like this - you are rotting bitch rotting we are gutting you like a fish / don't move don't breathe don't fucking breathe suffocate BITCH stab yourself you're a fucking animal we're watching you bleed where's the red we're going to kill you you deserve this / watch bitch you killer KILLER / kill yourself kill / keep the fires burning you are dead kill her you are dead / asphyxiate decapitate dilate / shhh bitch / rip yourself stab knife your heart stick it in...

My voices sound like this - you stupid fucking bitch so stupid / die just die just fucking die you should be dead / I should be dead cut my head off cut my fucking head off with a sword / hate hate self hate self forever I'll hate me forever / we should all be dead they should let us die / stupid bitch YOU STUPID BITCH stupid fucking cunt hate myself hate you hate me let me die die die / how could you be so fucking stupid you can't exist you can't be here /oh the shame oh the guilt guilt GUILT I have to die let me be dead kill self I should kill myself kill me I should die...

When I first mention the 'voices in my head' to a doctor, they really prick their ears up, until we clarify that I do not hear my 'voices' audially. They are not an auditory hallucination. It's a train of thought running in my mind, and therefore classified as 'uncontrolled ruminations' by the doctors. Therefore, not psychotic. But I think of it as a 'voice in my head' because it feels as though it's not a part of me, that it is actually another entity talking to me. And it bloody hates me. I would never talk to another person the way my voices talk to me, and if a real person actually talked to me like that, I wouldn't want anything to do with them. But I'm trapped with the dialogue going on in my head, over and over again. Always.

It's always there, on some level. When I'm well, I just hardly notice it. It's like a television on in the next room, I can 'hear' the buzz, but it's got nothing to do with me and I can ignore it. Sometimes I go a long time forgetting that it's even there. It becomes more persistent as I get more depressed, and when I'm really very unwell, it feels like a monster that is actively trying to kill me, that I have to constantly battle to stay alive.

Recommended treatment for hearing voices is usually anti-psychotics and Cognitive Behavioural Therapy (CBT). I learned CBT about ten years ago and it was extemely helpful in my relationship with my voices, even though they're not technically voices at all, medically speaking, but ruminations. I learned how to stop them. Once I notice that the nasty voice has started going on, I can make it stop. Instantly. Just like that. I just remind myself of what I learned in CBT, and process it in a fraction of a second, and stop it. I turn my thoughts to something else. This is a wonderful skill and I'm so glad I have it, but the catch is, it doesn't last. Once I've stopped the voice, it can start again at any time. Maybe even in just a few seconds. Some days, I stop the voice dozens or hundreds of times in a day. If I can keep focussed on something and concentrate enough that my mind is filled with what I am doing, there is no room for the voice to come in. But as soon as I let my mind wander, it finds a way in. Eventually I notice what's happening, and stop it. Sometimes it goes on for quite a while before I notice and remember to stop it.

I used to think that one day, with enough therapy, I would get self-acceptance, and stop hating myself, and the voice would stop. Now, after all these years of therapy, I don't even think that the voice has much to do with my self-esteem or lack of it. It's just a constant. I'm starting to think, as I get older, and see that I  can be so strong against the voice, and not listen to it for so long, and yet it's still always there, that it's not going to go away. I don't think I'll grow out of it anymore. I think it will always be there, to some extent. I hate that thought. It feels like a failure. I just have to remind myself of my successes - that I don't believe what the voices say, that I know not to believe them, and that I can stop them, however temporarily.

Another big difference between me and Kate is how we've responded to treatment. Kate did not want to accept that she had a mental illness for a long time. She didn't trust her treating practitioners and went through significant periods of not co-operating with taking her medications. This would result in psychosis and hospitalisation. I've never been like that, though I must say, looking back, I could have done with a bit less trust in my treating physicians, myself. For better or worse, I've mostly taken meds exactly as directed, and only very occasionally forgotten them. I haven't always wanted to. I haven't always agreed with the doctor's choice of prescription. But I am not willing to become known as an 'unco-operative patient.' I know what happens to people who get that label in a hospital, and it's not pretty. I do exactly what I am told as a patient, out of fear of effective punishment by the mental health system, rather than because I think the treatment is okay for me or not. But then again, when she did take her medication as directed, she ended up in hospital seriously ill after the levels of Lithium rose too high in her blood, which is very dangerous. So, what, if it doesn't kill you it cures you? Why would people want to comply with taking medication that has such desperate side-effects? It's a complex question. Cancer patients can, and sometimes do, choose not to be treated with chemotherapy because of the unbearable side effects. Mental health patients often do not get such a choice.

Kate's book ends with her having been relatively well, that is, managing symptoms, for four years. For me, it's been more than five years since I was last in hospital. But she knows now, like I do, that it will always be there in some form. She will have to manage it for the rest of her life.

I'm so thankful for Kate for writing this book, for going public with her struggles. I always admire people who do this, which is why I've written this post, and why I'm going to click the Publish button, in spite the voices screaming at me about how wrong it is that I am disclosing to the world at large all these terribly intimate demons.

2 comments:

  1. I'm so glad you write your thoughts. You are eloquent, insightful and amazeballs! x

    ReplyDelete