Don’t Bright Side Me

I don’t have 800 articulate words tied up in a neat bright-side bow in me today. So this instagram post it is. For context I am now into into my third week in hospital. Some of the manic symptoms are settling. The caption accompanying this instagram post is:

The symptoms are horrible, but it is never just about the symptoms. The symptoms and connotations severe mental illness carry with it. leave me staring at the rubble of my identity during and in the aftermath of every episode. It is never just about the symptoms…

#bipolar1disorder #vulnerability #psychiatrichospital #mentalillness #stigma #identityloss #thoughtfood #abductionsfrommybeautifullife

Other reading:

Visiting Someone In A Psychiatric Hospital?

From Holiday To Hospital In Under A Month

Covid Lockdown In A Psychiatric Hospital

I recently encountered Covid  restrictions and a lockdown as an inpatient in a psychiatric hospital. And while the specifics are relevant, my experience was more complex than donning a mask and staying inside. But let’s start with the specifics.

There is the loss of the hospital dining room and its well-stocked salad bar. This normally bright spacious room filled with chatter and choice has closed, gone into mourning. The ability to choose your own food and sit where you liked – a small token of independence – replaced by a tray delivered to your room at 7am, 12 pm, and 5pm with a sharp rap at the door. You get little choice and a small window to eat before the kitchen staff are back to collect your tray.

There is not being able to leave the hospital grounds until discharge. No opportunity to test where you are at with a short visit home. Another small freedom lost, and you become totally reliant on visitors to bring you anything you might need from the outside world. Until restrictions turn to lockdown and the visitors are banned from visiting.

All staff start wearing masks, and the buzz of their anxiety fills the hallways like a swarm of bees. Within a few days patients are told to wear masks anytime they are outside their rooms.

For anyone who has lived on this planet for the last year, none of these restrictions or lockdown conditions will sound unusual. Everyone has lived some version of them.

But my experience of them as a psychiatric hospital inpatient was different to my experience of them when I’ve been well and at home.

Here’s why:

Even with access to an excellent private psychiatric hospital, being an inpatient strips me of autonomy and leaves me feeling as vulnerable as a slug on a busy highway.

The admission process alone – which includes providing a urine sample for drug testing and the thorough inspection of your bags (for any means of self-harm or suicide) by two gloved nurses – is a humiliating experience.

 It screams: ‘You cannot be trusted’ and whispers sharply: ‘We are in charge of you now.’

It’s made worse if the nurses attempt light conversation about the contents of my bag.

‘‘That looks like a good book…’

I don’t have the energy for it, and it makes me feel like a toddler they are trying to distract from something unpleasant.

As a patient in a psychiatric hospital I frequently lose the right to my feelings. For example:

One of my admitting symptoms (usually prodromal to mania) can be intense pathological irritability. It is completely different to feeling irritable in a normal context. And it is not the same as the irritability I feel when I am forced to interact with one of the nurses whose attitude grates on me even when I’m well.

 I try to be polite, but when my tone slides into curt, she cocks her head and says:

‘Your irritability levels are quite high today.’ before self-importantly noting this down as a symptom for the day. And I am powerless, because if I protest that would just be further proof of my mental illness to her.

And then there are the cringeworthy names I am called, mostly by nurses and kitchen staff:

‘Dear, Darling, Love.’

 I am ‘Darling’ to only my mother. ‘Love’ never fails to sound derogatory to me. As for ‘Dear’ – one of my worst and earliest hospital experiences involved being called ‘Dear’:

Fourteen and a half years ago when I was less than a week into my first episode of mental illness, I experienced a severe psychotic episode. I was led into the Special Care Unit (the highest security locked ward) of the psychiatric hospital by two nurses, one gripping each elbow.  On the way there, one of these nurses said:

‘Don’t worry Dear. You won’t remember any of this in the morning.’

The next morning I was so sedated by the (necessary) medication I‘d been given, I may not have looked as though I had any memory of the horrors of psychosis. But I remembered all of it. The proof is in the account of that night in my memoir being published this year.

If I knew where to find the nurse who called me ‘Dear’ (on that occasion), I would give her a copy to show her just how much a patient experiencing florid psychosis can remember.

There are many other factors that contribute to my sense of infantilisation in hospital. But elaborating on them would take me well over my word limit. So I’ll leave it here, for now.

Thankfully this recent admission was short (two and a half weeks) but the combination of the inherent lack of autonomy in being a psychiatric inpatient and the above mentioned  Covid factors hugely amplified my vulnerability.

And I have never felt so powerless.

You may also like to check out:

2020 Ends In Hospital

Visiting Someone In A Psychiatric Hospital?

On Uncertainty

On Uncertainty

Written for QLD Mental Health Week 2020

How does uncertainty make you feel?

I ask because uncertainty is having a moment right now. It galloped in with the Covid-19 pandemic, and the further we get into it the more it seems to be digging itself into our awareness.

I used to be deeply uncomfortable with the pebble of uncertainty in the shoe of my life. I liked to know what was ahead. It gave me a (false) sense of control and the misguided belief that just because I couldn’t see uncertainty in my life, it didn’t exist. I deluded myself for decades that when there were no clouds on the horizon, the course of my life was somehow more certain than if I could see trouble ahead.

Then all the certainty in my life was put through a paper shredder within five days of my first baby’s birth.

I got my new baby experience with a side of florid postnatal psychosis severe enough to warrant admission to the locked Special Care Unit of a psychiatric hospital. My sense of certainty and control over my life went down the toilet.

After I’d recovered from this psychotic episode I felt entitled to some certainty. I wanted to know this nightmare was over. And I wanted a guarantee it would never happen again.

So when my psychiatrist mentioned ‘a possible underlying Bipolar Disorder’ and that it would ‘take three to five years to know for sure’, the inside of my head threw a combination of a tantrum and a pity party.

When I got sick again after three years, after seven years, and after nine years and my diagnosis of Bipolar 1 Disorder was confirmed, I still felt entitled. Entitled because: ‘hadn’t I suffered enough yet?’ Entitled to not have to tiptoe through my life with everything clenched, waiting for the next time this thing pounced.

I have only recently acquired some degree of acceptance of the uncertainty this illness introduced into my life. I didn’t enjoy the last two episodes in 2018 and early 2020, but I also didn’t waste energy resisting them. In the same way I no longer spend any of my resources anxiously wondering when it will happen next and how bad it will be, because without wanting to sound nauseatingly Zen, the truth is: It will be what it will be when it will be.

Uncertainty exists in everyone’s life every day. But instead of it floating along in the background, right now it is constantly being rammed down our throats. It’s like having a nasty little gremlin on your shoulder whispering over and over again:

‘You do realise bad things could happen to you at any minute’, when the true risk of something bad happening to you is probably not that different to pre-Covid times.

For our mental health to survive this pandemic we have to learn to live with uncertainty, because the end of it is nowhere in sight. And just like my psychiatrist couldn’t give me any certainty when I first got sick, the smartest scientists in the world aren’t able to accurately answer this question about Covid-19: Will it ever be over, and if so when?

Uncertainty is an uninvited, kicking, snoring bedfellow. So how do we get comfortable with it?

First we tease out what about this situation we can control and what we can’t. For example, we can’t control the flow of information that feeds our uncertainties rushing over us every day, but we can control how much of it we absorb.

And once we’ve done what is in our control to help ourselves, we have to try and unclench from the need to know what is going to happen next. We need to stop trying to know and plan for a future that is like a spiderweb in a storm. Here’s what I mean:

During one of my admissions to hospital I sat staring out of the window of my room feeling as though there was no point in doing the work to rebuild myself because my future was too uncertain, my illness could tear me apart again anytime.

Over a couple of days of intermittent staring I noticed a spider in its web just outside my window. Every night it stormed. Rain, wind, a couple of times hail tore chunks out of the web, at times almost destroying it.

That spider showed me the way out of my tangled thoughts, by not only rebuilding every time after its pristine web was wrecked, but doing so in the face of the risk of the same thing happening again, whether the next day or in a year.

The sword of an uncertain future has hung over every single one of us since the day we were born. Nothing has changed there. It is just up to us whether we choose to battle with uncertainty and lose, or whether we accept that being alive will always mean living with uncertainty, pandemic or no pandemic.

You may also like to check out:

Lessons For A Control Freak

The Other Curve Being Flattened

When Covid-19 And Bipolar Recovery Collide With Unexpected Results

Tokenism In Mental Health Awareness

Vulnerability And The Exploitation Of Kanye West

vulnerability image

Kanye West is unwell again. Hurtling through a manic Bipolar episode while the world laughs. And as someone who lives with Bipolar 1 Disorder, I feel for him.

In the early years after my diagnosis, during one manic episode (while hospitalised) I started discussing my sex life with strangers. My friend who was visiting me steered me gently away.

Kanye doesn’t seem to have anyone to steer him away, gently or otherwise.

Kanye is a wealthy, influential man, who probably has access to the best mental health care available. But I don’t believe his problem is accessing top quality care.

His problem is that he lacks insight and no one around him is game to have the difficult conversations with him. The conversations that point out that while he may be a brilliant artist when he is relatively stable, when he develops manic symptoms his brain needs a break from the world, and the world is not entitled to its contents.

Instead, when Kanye becomes unwell his mania is left to run free.

He has been open about his choice not to take medication to help manage his Bipolar Disorder. That is his right. Medication doesn’t work for or agree with everyone.

But he seems to be unaware that to successfully manage this illness without medication, you need to employ other strategies. You need to hone your insight. And if your insight when you are unwell is shaky, you need a mental health directive.

This means sitting down with your doctors and people closest to you when you are well and discussing how you would like to manage your symptoms when you are unwell. And if you experience manic episodes, one of the most basic requests may be to not have access to the media – social or otherwise – while symptomatic. Why?

Because mania can gobble up your inhibitions, make you see the world through a paranoid lens, and sprout delusions of grandeur.

Kanye recently gave an interview to Forbes magazine during which he rambled for four hours, to this effect:

‘…They want to put chips inside of us, they want to do all kinds of things, to make it where we can’t cross the gates of heaven. I’m sorry when I say they, the humans that have the Devil inside them. And the sad thing is that, the saddest thing is that we all won’t make it to heaven, that there’ll be some of us that do not make it.”

“Clean up the chemicals. In our deodorant, in our toothpaste, there are chemicals that affect our ability to be of service to God.”

If Kanye were a homeless man on a street corner sharing these ideas with the world, the interviewer from Forbes magazine would probably have walked past quickly, maybe shuddering at such overt insanity.

Instead that interviewer sat and listened to him for four hours. Noted down delusional quote after quote and then published an article in which they even describe Kanye’s lack of awareness:

‘If it all sounds like a parody, or a particularly surreal episode of Keeping Up With The Kardashians, West doesn’t seem to be in on it.’

Of course West isn’t in on it! He is walled off from reality by illness.

Did that interviewer ever pause to consider why much of what Kanye was saying made no sense? I suspect (with disgust) that they were fully aware their high profile subject was mentally unwell, but chose to exploit him while he was most vulnerable.

I have written thousands of words I thought were brilliant, while in the grip of mania. But once my symptoms recede, I am relieved no one else has read these largely nonsensical word vomits. Because if they had, that would invalidate the quality of my writing when I am healthy.

But Kanye’s word vomits are out there for all the world to snidely pick at, to brand him a rambling idiot and someone to be sniggered at.

At the time of publishing this post, headlines announcing Kanye’s withdrawal from the presidential race are emerging.

I understand stress and sleep deprivation are a president’s companions for most of their time in office, that pushing through is a corner stone of juggling the demands of the job.

Stress and sleep deprivation are the perfect fertiliser for Bipolar episodes to flourish. Bipolar episodes, once active, can’t simply be pushed through. They have no respect for deadlines or work demands – let alone international or national emergencies.

Whether Kanye recognised the risks of pursuing the presidency himself or whether someone in his circle came forward to have the hard conversations and steered him gently away, I am relieved for him.

 

You may also be interested in:

Misunderstood Mania

Psychiatric Medication And Stigma

If I Were Kanye Westwritten two years ago with a different angle to this post

 

 

 

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