I spent the last week in Wellington. It was really great, but the word that stayed in my mind and kept coming up in conversation was the same: frustrated.
I’m aware that I sound extremely impatient. I only started Humira treatment a month ago. It can take up to twelve weeks to see the effects – or it may turn out not to be the right thing for me. The rheumatology nurse said they see a 95% success rate in patients they put on this programme. But I’m not sure how that success was defined. I want to see a dramatic reduction in my symptoms, and I want to see it now.
I’ve been sick for almost three years. That time has been so confusing, depressing, draining, and isolating. I have felt in turns alienated, furious, and suicidal.
Here’s some context: I caught a glimpse of one of those “Challenge Yourself” lists on Tumblr. One of the challenges was to tell the truth for a week. I’m disappointed by the fact I am finding it quite hard. I don’t know how much of a reflection that is on me, and how much of a reflection it is on the need to function in polite society. Anyway, I’m going to write a column about it. And I’m going to practice it even though it’s hard.
So when I whine “I’ve been on this miracle drug for a month and nothing has happened,” what I really mean is “I’ve been sick for three years and I am bloody well over it.”
I always look forward to my Wellington trips, for two main reasons – I get to see my city, and I get to see my friends. I lived in Wellington for a long time, and it’s not just the familiarity that makes it feel like home. It’s the people that live there, the vibe of it. I feel like I fit in.
I am lucky enough to have a wonderful writing mentor (whom I shall not name because he keeps insisting I am ruining his tyrannical reputation by telling people he’s actually very kind), and the purpose of this visit was to have a workshop with him. After months of producing nothing, I managed to write two short stories in the four days before the workshop, so at least we had something to look at. He provided encouragement in the form of cookies, chocolate, PLEASE USE PAGE NUMBERS OR SO GOD HELP ME, and gin.
The short stories form the start of my new project, and my new project is at the heart of my frustration. I want to be a writer. I want to write, all day, every day. It’s not just my health that is stopping me from doing that, obviously, but it’s the primary barrier. I had many people gently harass me about applying to do the Masters in Creative Writing at Victoria University, which has been a goal of mine for almost as long as I can remember. That would involve moving back to Wellington and being in a fulltime course, which just isn’t at all possible for me. Not now, and not in any near future I can envisage. That makes me feel very, very sad, and very angry.
I try valiantly not to feel sorry for myself. I recognise all the ways in which I am extremely privileged. Occasionally, I have days where I think: “Fuck this shit. I am 28. This is not ok.”
My limits become especially obvious to me when I am away from home. Travel is a logistical nightmare. I struggle without my routines and structures. Medication presents challenges. Pain restricts me. And the constant fatigue means that even though I am in the same city as my friends – so close, so close – I often can’t get to them. I miss out. And that just sucks.
Luckily, I did make it to meet Stephanie de Montalk. I’m sure you’ll remember me talking about the book How Does It Hurt? Stephanie has a chronic pain condition, and that book is the result of her PhD at Victoria. She invited me to visit her at her home, which is near the university. I had such an incredible time talking with her, I could have spent all day there, all week. What an amazing woman. Her energy is so calm, yet fierce. You have to be both of those things to face illness.
I also spent some time reading Mutes and Earthquakes, which is a book about the Creative Writing MA. It contains some of the exercises done in the workshops, and students’ work, along with essays on writing. In the introduction Bill Manhire says “Reading and writing, and then reading and writing, and keeping on going – that in the end is what makes the difference.”
Grace Paley said this – she was talking about authenticity in writing, but I think it applies broadly – “If you say what’s on your mind in the language that comes from your parents and your street and your friends, you’ll probably saying something beautiful.”
I will keep on going. I will try to say something beautiful.