Recovery does not follow a steady path

Today is five weeks since my hysterectomy and to be honest, I’m exhausted. I’ve done too much, had too many adventures, and now I need to rest. A lot.

I was warned many times that recovery does not follow a steady trajectory, that it’s fits and starts and sometimes you go backwards. Today is the first day I really felt my self going backwards, and while it’s to be expected, it’s disheartening.

I should have seen it coming. I drove for 18 hours over the weekend to see my granny, and while that was good for my soul, it was hell on my body. My granny is the only reason I’d travel so far so soon after surgery but now I do have some regrets.

So I’m withdrawing a bit from my physical presence in the world, and a little from social media. Facebook drains me so much, and Twitter is only really for dipping toes into. I’ll poke my nose up on Instagram occasionally, that’s about as far into social media as I need to go. As for physical things, if I don’t need to be out of the house I won’t be, and I’m certainly not driving anywhere if I can help it.

I also have my younger daughter for two weeks over the school holidays. She’s a human chaos agent who I love to bits, but I don’t know how it will go with the two of us home all day!

Anyway. I will recover, given time and nourishment. I’ve ordered food boxes for the next two weeks to help get nutrition on track. Fingers crossed things go well!

Three days out

Three days out from a hysterectomy and sleepless nights abound. Musings on my future surround me.

I’ve laid so many plans so many times. This time perhaps they will come to fruition in a way that will nourish my family for the future. Laying out each piece, twisting and turning it until it fits just so. Watching them occasionally be knocked sideways and sometimes fly off the table, gathering up new ones to fit in their place. Life.

My hope going forward is that this surgery will ease my pain. I have been in near constant pain for years now, but a combination of surgery, physio and neuromodulators should help tremendously. Scans show fairly severe adenomyosis and bowel adhesions, and removing and releasing those should give me a new lease on life.

Looking to the next few days, I will have surgery under Auckland’s level 2 rules. That means one named visitor may visit me in hospital. Not the small selection of people I had hoped would be able to be there to support me, but not a total lockdown scenario at least. I have a wonderful support person coming in each day, and good people keeping the moving parts of my life going while I’m in hospital.

Coming home will be interesting. I hope that it goes smoothly. I have refrained from reading horror stories online as they will just create worry. I have exercised and nourished my body as best I can. The one thing I have not done is rested. Apparently I am incapable of that!

Recovery will be a process that cannot be rushed. I only have the chance to heal right once, and I’m going to do it properly. Follow guidelines to the letter. Be gentle on myself. Prioritise myself. Stop laughing in the cheap seats!

If you can offer moral or practical support please be in touch. This is a big thing to go through and I don’t know how it will go. Hold me in your thoughts.

An enby by any other name . . .

It kind of spilled out of me. I’d known for a good long time that “woman” was not the label for me, and definitely not “lady”. But it took years of soul searching and perhaps seven years of attempting to be truly femme before I found my people and discovered that my lifelong uneasiness with womanhood was not a personal oddity but a viable identity. So. Hello. Today I present (to all perhaps one of you who didn’t know already) Jay, enby, at your service.

I didn’t want to rock the boat for ages, so I didn’t say anything to anyone until the idea was fully formed. Even now I screw up my own gender mentally or orally, but I’m growing into myself now. It only took 34 years to find me in there, amongst all the childhood hang ups and young adult fears.

I’ve come a long way since I last posted. When I last wrote, I was screaming out for help. Now, I am in a good place, and gradually figuring my life out. I’ve had some horrors behind me, and I’ve stepped past them and carried on. I’ve had some failures, some by my own fault, some heavily coloured by the year that was 2020. Now it is time to begin again, with a solid relationship to hold me steady, and a world of opportunities to explore. I will forge a new path ahead and be excited by the potential in my future.

it’s been a rough road, and I am grateful for the people who have brought me so far. For those who support me first and ask questions later. For my cheerleaders, and my helpers, and my tear-drying humans who are there when no one else is. I couldn’t have gone so far without all of you. I am this new, strong, amazing human being because of my communities and my family.

What does the future hold? Adventures!

Eleven months and one day

Eleven months and one day ago, I embarked on a four day bender that was the end of the most loving partnership of my life.

Eleven months and one day ago my world dissolved.

I thought last night was a full year, but I was wrong. Nevertheless, I curbed my drinking last night so I could say I made the milestone somewhat sober.

I’m wrecked.

So today is day three of my eleven-month-anniversary bender. So much has shifted and changed, and my grasp on the world is different.

I have held life with a light touch these last sixteen years, since my failed suicide attempt at fourteen. I am lucky to have made thirty. I don’t know if I will make thirty-one. I have plenty of reasons to live. Children. People I love and who seem to like me well enough. But still I hold on lightly, ready to let go. Because I am unwell, and because I have given up on a future.

I am doing all the things I’m supposed to do. Medicating. Eating. Working. The drinking isn’t good, but it’s not all the time. Still the blackness beckons. Still I don’t want to keep going. Still I want to give in to the insistent voice in my head that just doesn’t want to hang on a moment longer. I pull myself through moment to moment.

Eleven months and one day ago I lost all hope. Truth is, it’s not really come back. I’m going through the motions. Even the love I bear toward several very special individuals is not a protection, not a really strong motivation to not-die. A new job that I’m happy with doesn’t matter. The destruction I could leave in my wake isn’t a dissuasion. Nothing matters.

The Taylor Centre have given up on me. I can’t afford a private psych. I can’t really afford to go to my GP and I don’t think she can help. I am adrift alone, with occasional interjections from loved ones.

I have held on for eleven months and one day. I’ll probably continue to hang on a while longer. But don’t hold me dear. I am too likely to make an untimely exit and leave you all.

Love isn’t enough. Hope isn’t there. Faith burned off a long long time ago. The future is incertain, the past is agony. In eleven months and one day, I have learned mostly that I am fragile and broken and there isn’t anything that will fix me. I fight to stay connected to the world, but the fight isn’t going well. 

I have my rules for going. I must write farewells. I must call the Taylor Centre. I don’t even know if I can follow my own rules any more. I feel rash and impulsive. What does it matter? The people I love know I love them. There’s nothing I can say to be a balm to the wound I would cause. The Taylor Centre are utterly hopeless and I have no faith in them. The only people that have ever come through for me are my ex and my mother. I’m not going to call on him – it’s not fair on him to be in any way involved in this. I’m not going to call on mum – she’s too far away to help. I don’t want anyone to feel like they could have done more.

Do not go gentle into that good night

Rage rage against the dying of the light

I have done my raging. I have found peace and resignation. It has been fought, and won, and fought, and won, but every battle has bled me a little more, until I am white with exhaustion. 

Once more into the fray – into the last good fight I’ll ever know

Bled white and exhausted, but still I fight.

Being the only woman in a male-dominated company

It means being always on your guard. It means absorbing shit that you really shouldn’t. And now, it means being a little terrified.

You see, I have a workmate who makes me feel uneasy. He invades my personal space. He makes inappropriate comments. And recently he started touching me.

The first time it happened, I made a fuss. I yelled. My workmates all heard; there was uneasy laughter. They didn’t say anything.

The next time it happened, I yelled again. More uneasy laughter. No-one did anything, again.

What does a girl have to do to get people to realise that she’s not ok with being touched and that she isn’t feeling safe?

My next step is a formal complaint. It’s going to happen. But meanwhile, I’m sitting here with headphones on and music turned up, trying to pretend I’m not terrified to be alone in the building with him.

This isn’t ok.

But it’s reality, for many women in tech and other male-dominated industries. We are expected to suck it up, to deal with it.

I refuse. I will make a fuss. This is not ok.

Let. Us. Smoke.

Smoking in mental health units is in the spotlight at the moment, as a family and community grieve a woman who went AWOL from MidCentral DHB’s Ward 21 after being let out for a cigarette. She died, missing and alone.

When I was first at Te Whare Ahuru at Hutt Hospital as a day ptient in 2004, the octagonal courtyard was assigned as a smoking area for both inpatients and day patients. It was completely enclosed by the building, and it was a safe place for smokers. Fast-forward to 2010, and my short inpatient stay. The courtyard was now smoke-free in accordance with hospital regulations, and smokers had to hid down the side of the building. To get there they had to be let out of the locked ward and trusted to not do a runner.

I remember one day, I was feeling very intense suicidal feelings. I told the nurse, just like I was supposed to, and said that I probably shouldn’t be let out alone. As a result, I was not let out unless there was a nurse available to take me, and I waited a good ten hours for a nurse to come free. It wasn’t intentional – they were just so understaffed. My agitation built and built – the nicotine patch simply didn’t help. The ritual was my addiction – lighting up, inhaling, relaxing.

I spent the rest of the day and into the night highly strung and unable to rest, until they got so sick of me floating around that they gave me a lorazepam at 3am. It was Waitangi day, the 6th of February, and the next day my daughter turned six. I was too out of it to celebrate with her, wrapped in a benzodiazepine haze.

Meandering forward to 2017, I spent three weeks in Te Whetu Tawera, Auckland City Hospital’s mental health ward. The first week, I was first in ICU, where all smoking paraphernalia was banned, and then in Ward A, which had no smoking area. I had no leave. I was trapped, and the nicotine patch wasn’t helping. I needed my ritual. All I wanted to do was sleep to get through my hospitalisation, and it wasn’t til I was given my first escorted leave with  nurse that I turned a corner and started looking at living again. That leave was ridiculous – we went straight to the dairy so I could buy cigarettes and get my fix.

Ward B, which I was moved to after twelve days in the unit, had a smoking area. This small mercy made it a much nicer place to be. It meant that I didn’t have to leave the ward and the hospital grounds to smoke – a matter of about 10 metres, but an essential according to the DHB.

I understand the push toward a smokefree New Zealand. I really do. It’s a terrible habit, and it takes 8-10 years off a heavy smoker’s life. On the other hand, serious mental illness takes 10-20 years off the average sufferer’s life, and honestly? We have bigger things to worry about than our smoking habits.

Nicotine withdrawal is the pits, but nicotine isn’t the only chemical in cigarettes – however, it’s the only one dealt to be nicotine replacement therapy. Even with nicotine patches, or gum, or inhalers, or whatever, withdrawals are hell. What I find hard, though, isn’t the chemical addiction. It’s the social and ritualistic addiction that I have built around my habit. Roll, light, inhale, relax. Chat. Socialise. Be a member of a socially unacceptable club.

I know that many people who have a cigarette addiction get incredibly jittery and anxious when they can’t smoke. Why add that pressure to someone already in the terrifying ordeal of a psych ward? Especially someone in the ICU, where everything is so frightening. Zombies all around, demons in your head, and no ritual to banish the fear. Paper-pushers and box-tickers simply have no idea what it’s like.

When we come to hold someone to account for the deaths of people who are pushed outside the ward for a cigarette and go off to die, we need to start with lawmakers and the Ministry of Health and work our way down. This policy is putting vulnerable people at risk, and it’s taking away the basic human rights of people who are held against their will.

Let’s go on about those basic human rights for a minute. Smoking may be frowned upon, but it’s not illegal. It is a solace to the involuntarily incarcerated of our mental health facilities. Why on earth are we depriving them? What fucked up stupid idea is it to make being in a psych ward even harder than it already is? I have every right to smoke in the real world. How dare the state take that right away from me when they take away my freedom? I’m not a felon; I’m not incarcerated due to breaking any laws. I’m locked up already – what right do they have to make it worse?

One of these days I may be the one you hear about in the news, the one who’s gone missing after being let out for a smoke. For my sake, for the sake of people like me, review this policy. Aren’t people’s lives worth more than an auahi kore sticker? Aren’t the immediate concerns of the rights and lives of real people more important than the long-term risks? Isn’t the right to choice more important than bureaucracy?

Let. Us. Smoke. If you’re going to take our freedom, at least protect our lives.

How society treats mental health patients

As a starting point, it would be wise to stop telling people to seek help and support that you know isn’t there. Austerity has gutted our communities of organisations that can make life liveable with mental health issues. Admit that it is not mental ill health that plunges people into crisis, it is the lack of support, protection and assistance that does that.

Mental health treatment is underfunded, so society needs to start paying for it. If people have to leave work because they are in distress do not punish them by forcing them into poverty and then make them beg for the tiniest crumbs of financial support in the form of benefits.

We need support. Real support. Not just nice sentiments, not just kind words. Real, actual support.

Support means services. Services that we can access. I am struggling to see my psychiatrist because the Taylor Centre only does psychiatric appointments between 0930 and 1530, Monday to Friday. I work full time. I can’t make it to these times. I’ve been lucky at my current job because they give me time off to go. But I am going to have to start a new job soon, and I can’t rely on that being the case. My private psychiatrist will see me out of hours – at $200 a pop. Once every two to four weeks, that adds up quickly. I am not well paid.

Support means money. It means that when the shit hits the fan, we don’t get pushed into penury. I spent three weeks in a psych unit this year, and a further three weeks off work afterwards. My benefit was $2 less per week than my rent. Without the kindness of friends and strangers, I would have lost my home. That is simply not good enough.

It’s not my fucking fault that my brain breaks. I don’t choose this life. I don’t choose brokenness; I don’t choose my reality being so very fragile. I don’t choose to be suicidal, and I don’t choose to be unwell. I don’t appreciate being treated like I’m not worth supporting. I don’t deserve to lose everything, over and over, because I’m a psych patient. I don’t want to have to rely on a few good people over and over until they give up on me.

We, as a whole society, need to do better. We need to get our shit together and treat people who are unwell and not ‘contributing’ as fucking people, not burdens. We need to give them their rights as people, to good and fulfilling lives, not to struggle and scrabble. We need to give them the keys to wellness by supporting them, caring for them, being kind but also being practical.

Three weeks from now, I hand my work keys back, and I don’t know what the future holds. I don’t want to have to fear that my disclosure of mental illness might count me out of a new job, or that I might be discriminated against because I’m not your average neurotypical person. I’m even more scared of needing a benefit, because the pressure and the work obligations are so hard, and because they won’t pay me enough to live.

Make the changes. Make our society a place that mentally ill people are supported, valued, cared for, loved, treated with kindness . . . accepted.

The Shape of My World

The shape of my world is splinters of depression, mania, mixed states, and odd periods of something close to normality. The shape of my world is held together with duct tape and superglue and falling apart at a moment’s notice anyway. The shape of my world is love and care, but the jagged splinters of everything else cut and I bleed no matter what cushions there are around me to soften them.

The shape of my world is moulding the soft parts of myself around the shape of other people in order to make them more comfortable. It’s padding the shards so they only cut me, if I possibly can. It’s service and care and love while I bleed inside.

The shape of my world is lopsided and confusing, and I’m the only one who can negotiate it with any safety. People who come into my world can end up confused and hurt and even scarred, and I don’t want that any more. I want to keep the people around me safe. Happy. Comfortable. I need to try and right my world before I let anyone too far into it again.

The shape of my world is ephemeral, ever-changing, wispy and smoky and insubstantial. It could be blown away at a moment’s notice, and grasping at it achieves nothing. I try to capture it in moments, in hours of pleasure, in little glass bubbles made of experiences. But glass is fragile, and a sudden wind can send them all crashing from the shelves that barely hold them to the concrete floor of reality, and in that wind I will be gone. If you hold a bubble of my happiness, hold it dear, it may be one of my last anchors in times of storm.

The shape of my world is bounded by my fears, my hopes, and my dreams, and when those fade the boundaries of me bleed into the nothingness, until the blood loss is so bad that I pass out of reason and into a living death, and I need rescuing before I bleed to death.

The shape of my world is unstable, shifting, changing. It is difficult to deal with, challenging, confronting. This is me. I lay myself raw before you. Enter the mists at your own risk. I will try and pad the splinters, I will do my best, but there are so many, they are so scattered and disparate and sometimes I don’t know they’re there until they’ve sliced me or you to the bone.

Two stories

I broke. Sitting on the dining room chair, in my forget-me-not blue satin dressing gown, my mind finally shattered.    “Let me go. Please. Let me die.”

    “No.”

    “Please. Please! Please . . .”

    “NO.”

    I was sobbing as I spoke, barely coherent. I just wanted to be let go to die. My hands twisted my forelock compulsively, fumbled with my necklace, anything to keep busy. I knew deep down that he would never let me go, would never release me to death. It’s not the sort of man he was.

    “You have two options. You may take some lorazepam and I will watch over you until you sleep, and we can go to the hospital in the morning; or, you can come with me to A&E right now. What will it be?”

    “Let me sleep tonight. It will be a long night waiting for psych services otherwise. We can do that in daylight tomorrow.”

    Somehow, with all the emotion and mess in my mind, I was still with it enough to make a logical decision. I took my lorazepam and got into bed, and he sat beside me, waiting for sleep to come. As I was drifting, I started remembering some of the good times with this man, my ex-husband. He was here with me now at my darkest hour. Perhaps he still cared.

    “Why are you here for me?”

    “Because I don’t want to have to explain to our little girl that I let her mother die.”

    Not about me at all then. It was about him, her, their world, the world that I was no longer really a part of. Suddenly the wee warm glow that I had been guarding turned icy cold in my grasp, and as I slipped under the benzodiazepine haze I felt so much more detached from life. I thought I had given up before, but now, this, I really had given up on life. It was over. My body just hadn’t caught up with my brain yet.
    A part of me had started dying the day he cut off my credit card as his way of saying “it’s over”. Another part of me died the day I lost my job, and all the friends I had in that world locked me out. And the last little spark that I was holding out for died on Monday last week, when I sat in court and saw guardianship awarded to my ex-husband. He was legally her guardian now. There was no need for me. I could let go.
    Looking back, I can see the downward spiral clearly. At the time, it seemed like the most natural progression in the world – lose everything, wrap up loose ends, die. It seems that this is not the thinking of the normal mind, which will pick itself back up and continue on living. Facing starvation, losing my home, debt, and the bestowing of legal guardianship of my daughter to my ex-husband, my mind chose to unravel in a spectacular way. It was a mountain to deal with, but I could have reached out and asked for help much more effectively. When I finally did reach out, I received help from the most unexpected quarter, and I had such hope for a rekindling of my marriage. To learn that it was just so he wouldn’t have to tell my little girl what I had done, and raise her completely alone, was shattering. It pushed me further over the edge, but that didn’t matter. The next day, I was sectioned under the Mental Health Act, and put in a locked ward for three weeks, until my mind could recover a bit.

    I still loved him. I still love him. He was integral to my world for so many years, he was the man I adored, and the choices I made that estranged us are some of my greatest regrets. As mania gripped me all those months ago, though, it seemed like I was doing what I needed to do, and although he gave me permission, I took too much, and wound up hurting him. He let go because he needed to, and I needed to realise that he had let go completely. There was no going back. There is no going back. Ever.
    What does this mean for me going forward? Will he still be there in my times of crisis? They will come, over and over, like the irregular menses of youth and menopause, unexpected and unwelcome. Will he come and sop the mental bleeding? I know I cannot rely on this. I must build myself a network of people to help me. I am already doing so, and doing all the things that I should do to stay well. Taking pills, eating well, sleeping well, easing back on alcohol, no illicit drugs, I’m being a good girl. Long may it keep me healthy.
    I hide the misery. For every upbeat thing I say, my inner self digs its hole a little deeper, waiting until it is deep enough to be buried inside. For every good day, there is a bad night. For every good conversation, an internal monologue of self-sabotage. For every drop of hope, a cup of despair.
    We approached that room as two selfish souls. I wanted only to die. He wanted only to not deal with the fallout of my death. The conflict we faced was not one of despair and compassion. It was one of different brands of selfishness.

    “Let me go. Please. Let me die.”

“No.”

    “Please. Please! Please . . .”

    “NO.”

    We agreed on a regime of lorazepam and sleep, until the psychiatrists could see me in the morning. His selfishness, which I had made the mistake of reading as caring, pushed me beyond reason. I was dead. My body just didn’t know it yet.

    He didn’t want to tell my girls I had died. He didn’t want to raise them alone. He didn’t actually care about me – he cared about how my living or dying affected him.

    I say it’s selfishness that I wanted to die, but really I hate that way of thinking. Suicide is not selfishness. It’s the way mental illness kills people. It’s no different to a heart attack or a stroke, really. It’s not about choices or anything like that. It’s about being overcome by illness. I was in the place where all things had come to an end. My own self could go no further, so how could it be selfish to die?
    He had me sectioned. I don’t know whether I am angry or not at him for that, but it saved my life. It was so far gone that nothing save intensive intervention was going to rescue me, and that I got. They drugged me into balance again, and here I am, writing a retrospective. Looking back over those swirling drugged days and nights, I learned a lot about who I am and what I am. 

    I am strong, but my strength is brittle.

    I break spectacularly.

    When I break I cannot put myself back together.

    I need good people around me.

I have good people around me.

    I need to confide in those people.

    I need to recognise my early warning signs a bit better and heed them.

    I am always going to have this brokenness, but I can manage it better.

    I am loved. Not by the man I wanted any longer, but I am loved deeply by many and I am worthy of their love.

    I can survive. Not by my own strength alone, but by drawing on all the resources available to me. People, and skills, and all the things I have learned that are within and around me.
    I live.

Waiting

Waiting to float away on the metallic tasting chemicals, and I wonder at the shape of life. There are no straight paths at my feet. Only gorse and toetoe stands and tiny little gaps to pass through. 

The snoring beside me is regular, but it will be gone tomorrow. Everything is fleeting. What is solid in this chaotic world of mine? There are some good friendships building, but the universe and I conspire to end those all too often.

And what of death, the whispering companion who tried to take me along? He is still present somewhere in the background, ready to come forward again in his own time. I have much fear of that day, but when it comes I will probably welcome it again. My mind is sick enough to leave life at the slightest suggestion, but for now I continue.

I need patterns, routine, love, care. I get tiny tastes, but the hollowness remains.

The chemicals come to take me away.