I starting writing this three weeks ago thinking, ‘Is this going to be the first post of 2018?’ I wasn’t sure where this was going but it didn’t matter. Something grabbed me, took me away from my private journal, sat me down and said: you need to write this here.

So, this isn’t going to be polished and pretty. This isn’t written for anyone and this is written for everyone. This is a marker, an reluctant acknowledgment of a process. My silence has been a decision. Now, I just want to be honest about where I’m at.

I’m the primary carer for my dad. My dad, who is… There are so many words I could use. But there aren’t many words that come to me. Just very heavy thick emotions.

Disabled. Illness. Fibrosis. Long-term. Unwell. Disease. Chronic. Progressive. Dementia. Terminal. Dying.

I don’t know which words to use and I’m angry because some words have more weight than others. Some words are more difficult to hear than others. Nothing is too hard to say any more. I choose my words depending on who I’m talking to. But I’m angry and sometimes I say words out of anger because they are harder to hear, they are harder to accept… I don’t care if it’s uncomfortable. This IS uncomfortable. I’m angry because we don’t know how to talk about this. This thing that happens to everyone, around everyone.

The first thing I learned this year in psychotherapy: loss.

Death.

I’m angry at everyone who calls me brave. I’m angry at everyone who says it’s going to be okay. I’m angry at everyone who asks why, what did he do to make this happen to him. As if some people deserve this more than others. I’m angry at everyone who says nothing at all.

I know everything will be okay. I know I will be fine. I know things will get better. I like my life. I am excited for the rest of my life. I want to live. But right now, I am surviving. I am just surviving.

I know things will get better, of course it will, of course I know this. I know, I know, I know. I keep telling people I know. I KNOW. Through clenched teeth, jaw and heart. I know not to worry. I know I’m doing a good job. I know I should stay strong. I know I need a break. I know everything. Through clenched teeth, jaw and aching heart. But it doesn’t change anything.

I know things won’t get better for him. He doesn’t get better. And there is just one way things do get better. And I don’t need to feel better right now, really. I know I will. But right now, I just want someone to do the brave thing back and sit with me, sit with my feelings. I want someone to take the time to understand my sadness. I want someone to give me space where I might be able to say the things I might not say out loud.

Like the effect this has had on me. It has changed the way I view permanence and time. On permanence, everything feels temporary, everything IS temporary. I’ve cut out so many things, jobs, activism, commitments, relationships. It’s been painful, cutting things out of my life, because everything in my life is a part of me. I’ve been cutting out parts of me. And I am sorry. My life is him, just him. I am sorry. Nothing else matters as much as him right now. I will keep cutting. I am sorry. I don’t know if I’m left with holes or just scars. Am I a shell or am I just wounded.

And time. When time is running out… Time doesn’t mean anything anymore. I could look forward, I had a five year plan, then twelve months, then six, and now, right now, a week is all I can think about. It’s excruciating. This uncertainty has infiltrated all of me. It is the not knowing. Everything comes with a disclaimer: I can’t. I don’t know. I might be able to. I want to but. I really want to. But. Unfortunately. Right now. Not now.

And time. Not enough time, never enough time. It doesn’t feel like I have enough time. No matter how much I cut out. It doesn’t feel like I ever have enough time. I don’t understand why or how but I will keep cutting to find more time, to scrape more space for you. To be here for you, to be present for you, to do enough for you. It’s still never enough.

And time. And when you can’t remember… Time doesn’t mean anything anymore either. A month becomes a week. A day becomes three days. The times when you don’t show up becomes all the time. And the time when you’re there doesn’t exist.

I started living with dad again almost three years ago.

I started grieving for dad almost two years ago.

I don’t know how this ends.

I know how this ends.