untethered

Profound sadness over the premature death of a stranger.

An untethered existence

trying to figure out what the fuck my purpose is

2am club

take flight

lift the veil from those troubled thoughts

let them float, and drift, and sail

upon the night’s inquiring breeze

they might remain

just out of reach

enough to grasp elusive sleep

or rest, unbothered by the torment of the mind that

now seeks calm

tethered to a trail, a maze, a map

unspoken foes

cast them all aside

it matters not

tis not their time

take this and drink it down, breathe it in

feel it’s touch

slip into the other place

you’re safe

once more with feeling

I’m failing 

Recognisable pattern 

Do I create failure for myself?

Am I in the wrong job? Wrong place? Wrong time?

But it feels like any job would be hard? Everything is hard. Existing is hard.

Because of my brain. Because of me.

Because I can’t focus 

I can’t get things done 

I shouldn’t have made friends 

I knew better

It makes it harder to manage me 

I am hard to manage 

I don’t mean to be

I try 

I really try 

But I fail 

Over and over

How do I break out of this pattern 

Psychologist, psychiatrist, coach 

Therapy and meds 

Stimulants, anti anxiety, antidepressants 

Why am I like this

hey, does it ever make you wonder what’s on my mind

I often have wondered. I haven’t seen you for so long but I do think of you. Every time I hear that song. A few more songs added to the playlist today. Did you choose them, sing them?

I remember sitting on the grass at lakeside. It’s not there anymore, development means it was long ago replaced with concrete. But back then it was this big open space. We had gelato and you sang for us. I remember watching you. You had no idea how much I looked up to you.

I knew back then you had struggles, you were open about them. But I don’t remember them being the whole of you. You were the vibrant, quirky, loud, slightly loopy loveable weirdo I sat next to. You taught me and coached me. You told me about the pyjamas and running on the treadmill.

Do you remember the awards night? You were wearing a scarf because you had a hickey on your neck 😂 most of that night is a blur, but you got me home safely. You teased me about throwing up in your car and ruining two pairs of your shoes. Or was it three?

That year is the one where I first started losing myself. I didn’t know it at the time. You are there in those significant, positive memories.

I regret so much that I didn’t reach out. Not that I could have changed anything. But I could have been present. I wanted to be your friend. Listening today about how much you struggled… about how every low was harder and harder.

Until you were so exhausted, there was no way forward.

I wish it wasn’t that way.

I cried for you today. I wish I’d cried with you, instead. To feel that life was just too hard. Oh Ali. I understand that, and yet I don’t.

Your family spoke of you with such fierce love. You were theirs. Your aunt read part of your letter. Signed off xoxo. You aren’t hated, but you are so, so missed.

The third week of March. You won’t be held in by dates. You chose your last moments and they were yours alone. I hope you knew how loved you were.

Be at peace <3


unravelling

Nine weeks ago mum had a bad seizure with a prolonged recovery period.

Six weeks ago she had another. This time dad called emergency. Two ambulances arrived, and one of the paramedics led her out of the house. She followed.

Three weeks ago mum was transferred to a transitional nursing home following a three week hospital stay. She made a friend on the ward: Betty.

Tomorrow mum moves to a permanent nursing home.

These last weeks I’ve spent so much time with her. Looking at old photos, holding her hand, seeing a single tear on her face. Listening over and over to the same snippets of the past.

Telling her the same things over and over. Learning how to use these to distract and redirect her.

She’s getting fierce. ‘Why am I here?’, ‘I want to go home’. Dad has said for a while that she’s lost her spark. There’s a new spark, a defiant one. A frightened one.

I’ve cried so much. The gasping, sobbing, can barely breathe crying. The silent crying. In the car, at the coles deli counter, on the phone. I’ve cried with people and alone.

I’ve watched dad try so hard not to cry in front of me.

Her diagnosis is Alzheimer’s. The personality changes, behaviour we saw twenty years ago? ‘Something else psychiatric’ according to the geriatrician. This diagnosis only accounts for the last four or five years.

It changes entirely my understanding of us, our relationship. It wasn’t dementia that caused her to be the way she was towards me. Does it matter? My therapist says not. The diagnosis is different, but her behaviour was the same.

Mums best friend from childhood writes to me. Tells me about growing up in industrial London. Some tiny, precious fragments about mum and her family. I cry again. I want to take her memories and try to piece together who my mum was back then. How did she become this suburban Australian woman?

Mums friend describes her as an outgoing, fun child and teenager. I wonder if this is the fundamental difference: I was a shy, reserved child. I wasn’t like her. Is this where it began?

I slip in and out of tense.

I’m so grateful for 2020 in some ways. Unemployment meant I spent more time with mum and dad. Took mum out for coffees, shopping. Found a new kind of peace and balance between us. Me, absolutely in the parent role. Mum needing nurturing and guidance and reassurance.

She still mutters about me. ‘Look at the size of her’. She says it now: she said it 40 kilos ago. My size doesn’t really matter. I’m not thin.

She said it audibly to Betty in the hospital while I stood three metres away, making them coffee. Then she surprised me. She told Betty about my beautiful hair, that falls right down my back, though I often tie it in a messy bun.

And she told Betty ‘anything she does, she does well’.

I don’t recall her ever complimenting me before. (It’s not true, but that doesn’t matter).

Has that always been her mode: compliment in secret?

I’ve been chaotic. Nursing home tours, forms, centrelink, guardianship process and hearing. And my own shit: psychologist, new psychiatrist, dietician, cardiologist, stimulant meds round 2. My anxiety is sky high.

The biggest part of mum’s legacy I take on: I mustn’t live in denial. Twenty years ago, we thought frontotemporal dementia. She could have had 15 years of treatment for whatever was actually going on, and that might have delayed the Alzheimer’s. Which might have been slowed with treatment. But she couldn’t face it, whatever it was.

I’ve had a start. 2012 I first saw a GP and psychologist, voice shaking, heart racing, body trembling as I spoke about my fears. I’ve made slow progress, but progress still. Now I keep going.

I love you mum, so fucking much.



do i look like I’ve been crying

Somehow it snuck up on me, though all the signs were there.

Dad and bro caught up yesterday (I tried to invite myself).. and decided it’s time for mum to go into care.

it’s the right decision. I’m still heartbroken. For her, for me. For my dad who has had to concede that he can’t cope anymore.

this has been twenty long years of slow progress but it feels so sudden. Like my world is collapsing.

fuck fucking fuck. I hate this so much. I just want my mum to be whole.

multitudes

Five thirty am, and I’m lying in bed.. haven’t slept… crying because I can’t bear the thought of my dad not being here.

It is so hard watching parents age.

Mum had a bad episode last night. Grand mal seizure, wandering around the house, sitting on the floor and moving herself around with her hands and backside, then finally stretching out on the floor for a while before becoming aware of her surroundings again. My heart breaks thinking about dad watching all this and feeling helpless. He’s stopped calling the ambulance now when she seizes, though my brother has told him to call next time it goes on for an hour like this. She’s usually conscious and denying anything has happened by the time paramedics arrive and refuses to go to hospital.

I did manage to get her to the dentist week before last, that was an achievement. And I regularly take her out for coffee now. I’ve worked out some strategies to cope with listening to her repeat herself every two minutes. I tell her I love her every time I say goodbye, and sometimes she says it back to me now.

My brother seems to be getting more distant. He’s in charge of mum and dad and doesn’t include me. I’ve asked him to. I think my sister in law has an issue with me, though I don’t know what. They have their distinct couple life a good distance away. Separate. Except when he comes in to order things around.

I saw psychiatrist #2 this week. I was so nervous before seeing #1 and I walked out feeling great. Took me four months to admit to myself it wasn’t a good match (I wrote myself a list of reasons to remind myself… reasons). This time around I wasn’t nervous, and I walked out feeling so broken. There is so much I need to change. He needs at least another one hour session to get through the initial consultation and already I feel hopeless. It’s nothing I don’t already know… but it’s a lot. My multitudes of wrong.

He pushed me on what I feel. Some of his clients don’t feel things fully? What do I enjoy, what makes me happy? There’s very little in my life that I enjoy. I’m alone, with my multitudes of wrong. None of my friends understand it, not really. How can I explain it?

I’m not sure I even know what it’s like to be normally happy. I know small amounts of it. But that’s not my life.

I’m someone always on the fringes. The edge. I know a lot of people, but I’m not part of the story. When I was a teen and in my early 20s I was told I’m a snob. I’ve learned to try and make people laugh, try to win people over. Which works, temporarily. But they don’t necessarily like me.

it’s always been this way for me.

My ADHD diagnosis was supposed to be an answer, an explanation. It was. It is. But instead of harnessing my ‘superpower’ it has further eroded my confidence. I used to have this belief that I’d try again and things would go better. Now I know there are things I will never be good at. No matter how hard I try, what strategies and tools I use, basic adulting is always going to be hard. I’m always going to struggle to regulate my emotions. To focus. There is no magic pill. There is only me.

an island

Isolation has made me realise how starved for human contact I am. Magnified, and pushed it to the extreme.

I close my eyes and imagine some faceless, nameless person. He’s a body, empty and without feature.

But he holds me. I hold him, wrap myself around him, lay my head on his chest and close my eyes. He’s warm. We breathe together.

I’ve never had any version of this person in my life. I want it so badly, thinking about it makes me teary.

here come the dot points

how to be a friend to someone with depression: a list!

  • Try googling the subject line if this is new territory
  • be present
  • be available. So long as it doesn’t impact your own wellbeing
  • remember: this is not about you
  • I choose who, how and when I share
  • I have autonomy over both my body and mind
  • just because I choose to let you in once, you don’t have the right to demand or expect inclusion
  • it’s ok to tell me you’re concerned, and remind me that you care
  • it’s not ok to tell me what I should do or say. For fucks sake, I think I know more about this situation than you ever will!
  • respect my boundaries
  • don’t be pissy if I ignore your well intentioned advice. I’ve got this. I have bad days, and I get through them. I haven’t failed yet
  • your assumption that I need a new GP and psych because I’m not ‘fixed’ yet is ridiculous. You know a tiny fraction of my truth
  • It’s entirely possible that I will always have depression, and my life will be about managing it and keeping it under control
  • it took me years to acknowledge and accept this, but trust me.. I’m right
  • you might disagree, but you’ll never be right about this stuff
  • don’t assume that just because I’m not talking to you, I’m not talking
  • learn to listen. If this doesn’t come naturally to you: practice
  • when I tell you ‘this isn’t helpful’, stop talking. Just stop
  • believe me when I say, over and over, that I appreciate the intent and the good place you are coming from
  • accept that it is not your job, role, or right to try and fix me