The birds here are different.

Today I learnt about optimal distinctiveness. 

The idea that you want to be just different enough.

None are more hopelessly enslaved than those who believe themselves free – Goethe

Am I really free?  I feel like I am mourning a sense of agency but maybe I was simply hopelessly enslaved and coudn’t recognise it.

I never planned to spend 16 years in New Zealand.  

Still struggling with jetlag. I didn’t get to sleep until about 4am; woke up at 12:30.

I tried to clean the house a bit. I couldn’t find a mop, the vacuum didn’t work, etc etc.

I did a few loads of washing, then I went to go see mom. I wanted to go to a thrift shop and find some things. I did manage to find a shower chair for $7 but no luck on a yoga mat except the ugliest one I have ever seen in my life for $4 with a cat on it. I couldn’t bring myself to buy it.

I don’t know why writing feels like hard work this evening. I would rather watch Heated Rivalry. I am hoping tomorrow I will be able to get some answers about what next in my plan to discharge mom.

She was mumbling and not making much sense today. It was worrying. Her feet are swollen, she had a rash. I trimmed her fingernails and tweezed her chin hairs today. Spending time in the nursing home is so depressing. I think the Nigerian CNA has the hots for me. African men love me. The first time I remember a man actually coming on to me when I was 19 or 20 it was a Congolese refugee.

Some things are so strange here – like tipping, and tax. You always have to add a few extra dollars to cover tax. I forgot how the price is not actually the price.

I have so much disdain for this place. I hate it so much. Everyone just seems so basic and lacking in any kind of taste. I’m sure they’re nice people but wow I have seen some incredibly ugly stuff at the op shops the last few days. I keep thinking back to my youth here. Some of the street names are familiar – Harlem, Jackson, Higgins. They are all probably named after white men. They remind me of my youth here, how a car represented the ultimate freedom. I don’t know when it was I realised it was the absolute opposite of that.

This is so hard.

I feel so scared.

Why do I always have to do the hard thing?!Why can’t I just take the easy route sometimes?

I am so afraid everything is going to fail. I am so afraid I made the wrong decision. I am so afraid it’s going to be too hard for me. Harder than I thought. But I am committed to trying. I must make it work. I will figure it out. I will not have to choose between New Zealand and Chicago, between Warwick and my mother.

Even feeling the feelings is hard. But I have no internet and I haven’t downloaded the next episode of Heated Rivalry. So I close my eyes and try to sleep but the feelings come, washing over me, in waves of grief and guilt and fear and sadness. Always so much sorrow inside me, like an infinite well, buried deep inside me, under layers of cheerful optimism.

I want to talk to my beloved. He always makes me feel better, just hearing that reassuring voice, knowing he is there, instantly makes me feel safe and protected. I try to text him. Of course I ran out of data so I can’t. Without his comforting presence I think I might start spiralling. The tears keep coming. I think it’s good to let it go.

A lot of people have asked me how I am doing and have expressed care for me over the last few months. I didn’t have the time or space to be vulnerable. I don’t think I have ever worked as hard in my life as I have the last 3 months. It was so intense – those 16 hour days, every minute of every day needing to be accounted for, barely space to breathe. I am so grateful I spent that last week with my beloved – and even spent some time relaxing with him. I really didn’t think I would actually finish emptying that room. But we built a shed! And I managed to pack everything up, even the Ceramics NZ magazines. That was such a huge mission I had been dreading but I got it done!

I just wanted things to be easy. Not that they ever were. But I could stay in Wellington, in a house I owned, with the love of my life, working at a meaningful job I enjoyed, making art, surrounded by an amazing community. But these things are more precariously balanced than I thought and just a small change and everything is gone.

Mom seems weaker than before. It’s getting harder for her to stand up and walk. She looks kind of withered. Her feet are swollen. She’s probably dehydrated.

I feel like it’s my fault. Why couldn’t I have found her a better place to live? Why did I let them do this to her? I kept asking for physical therapy, they would do it for a few weeks, then it stops. II have to ask again, can get she physical therapy, and then they go through this whole insurance approval process, and then a few weeks later they say she can get a few more week of physical therapy. And then the next time that’s finished I forget to ask again for another round, until the next time I see her. Why is my life too busy to be here for her?

I just hope I’m not too late. I hope the damage isn’t too great. I hope we can spend the next few months together and she can know how loved she is.

I know I am going to have to find some things to do because I know the two of us are going to go batshit alone in this house.

To be honest one of the things I am most worried about is the admin I ma going to have to deal with. I am going to have to figure out all of the medicaid/medicare/insurance/in-network/co-pays etc etc stuff once again after having to figure it all out a few years ago. I honestly think it was traumatising because I somehow blocked eveyrthing I learnt from my mind and I am just drawing a blank at even how to get her insurance card. So I am going to have to figure all that out again.

And there is no internet! I think that is actually an additional stressor I really need to sort out.

Which leads me to the issue of staying in this house – it feels like such a huge ask and something I am not entirely comfortable with! I need to sort out that concern if I want to make this work – I have to go forward with 100% commitment and without shame or guilt. My heart is open and I present that to the world.

The sexting thing. I haven’t brought it up yet but it has been on my mind. Now that I have no internet it’s not so much of a temptation but I’m beginning to understand the appeal. I like feeling seen. Who doesn’t like feeling seen? This helps me feel good about myself and my decisions and my life. It’s a distraction. Of course I know it’s a distraction!

What would Warwick say about Joe McCleery? I wonder if I should talk to him. Warwick will know what to do. God I love that man. (Warwick, not Joe McCleery).

I really become someone who relies on his opinions. He is so moral and virtuous and thoughtful and curious. Of course he is not perfect but he does help me to see sides of a story that I wouldn’t without his insights.

It’s day 3 and I’ve already written 5000 words. I really hope I can figure out something to do with all this. Right now it’s the heavy output phase – the idea generation phase, where I just let thoughts and ideas flow out of my head, to process what I am feeling, to help get me out of my head. Hopefully once things settle down a little but I can get into some kind of editing and completely stage, where I’m not processing emotional rollercoaster after emotional rollercoaster all day long and then need to have a little cry followed by heaving sobs interspersed with an episode of Heated Rivalry. I’m not a huge fan of editing – I worry this may be my downfall. But for now I am trying to get it out, processing some feelings, trying to get some little understanding which way my heart is pushing me to go tomorrow.

That part of my life is over.

It’s ok to mourn it. It’s ok to feel grief to have to given it up.

Why do some dementia sufferers get angry and aggressive and others not so much? I feel so lucky my mom is still nice to be around.

I managed to sleep at a regular-ish time last night, and wake up at a decent time this morning (8am!).  But here we are again – it’s nearly 2 am.  Warwick suggested I listen to the 5 hours long history of the fall of the Persian empire to fall asleep.  We listened to it in the car on the way driving up to his parents in December and  I fell asleep immediately.  Not so lucky this time.

Cars and in my beloved’s arm, that is where I seem to sleep the best.  Here I am alone, tossing and turning, somehow implicitly endorsing the American imperialist war machine, the sounds of planes taking off and landing at O’Hare my only company.  

—

A few weeks later the dystopian nightmare honestly feels like a joke.  I don’t know how long I take this and retain my sanity. 

I was supposed to have interim care organised within 48 hours.  Over a week later they finally sent someone – honestly I am too upset and tired to even go through all the bullshit again that I have been through.  Each time I feel like I am making progress something goes wrong.  Today I got a message from the Blue Cross Blue Shield that my mother’s been ‘terminated’ as of 1 April.  What does that even mean?

It feels like a satire.