Yesterday I threw everything I have in my bag of tricks at the pain and none of it worked. It’s rare that I can’t get some relief. Usually some combination of drugs, distraction, positioning, rest, meditating, icecream gets me through in a bearable level of comfort. Yesterday nothing touched the sides and it was all I could to lie there feeling it vibrate through me. No position would allow the pulsing in my hips, back, neck, shoulder, head to quiet. Sleep wouldn’t come. I scrolled into the wee hours, then into the less wee ones. The fearful, tearful hours. 3AM thoughts are never kind. They project monster shadows from under the bed. The future looks less like a life and more like an abstract smudge of pain, limitation, exclusion.

Fear is like petrol on a bonfire for pain. Our bodies naturally go into panic when pain is bad, that’s the point. It keeps us safe: Take your hand off the element, Get away from that jellyfish, Fix that broken bone. Do something. Fight or flight or freeze or fawn.

Chronic pain is counterintuitive. The fear response hypes up our amygdala. The adrenaline and projections of catastrophe increase the volume on the warning signals. The pain gets worse. We move less because it hurts more. We avoid things and our bodies learn again that those things are dangerous. It hurts more the next time we try. The cycle is vicious and has sharp teeth. Or we push through, put on a mask, cling to the things that give us life. Show up at the party, get in the sea, go to work. Crash, hard, out of sight. Cry. Medicate, in every way we can think of.

Today is all puffy eyes and wheatbags. The blessing of a new cycle of anti-inflammatories. Soft pink things. Trash tv and kindnesses from friends. More icecream, probably. Get through another day. Try not to let my fear tell my fortune.

In the last months of the shitfire that was 2021, Emmie and I made a list of 98 possible names in a google doc called PUPPYPUPPYPUPPY. It started with Dot and ended with Leonard and held 98 futures where we had a dog in our lives. 

We trawled websites and Trademe and analysed the compatibility of sizes, ages, breeds and adoption methods. I started scrolling puppies instead of Facebook. It was a good time. 


We landed on a breed which is variously known as Shihpoo, Pooshi, or Shoodle: Shih-Tzu X Toy Poodle. There was a breeder with pups near Marton. Our favourite op-shop is in Marton, which we gratuitously took as a sign. The puppies were available on New Years day, which would give us 10 days before we needed to return to work. The internet said that it was plenty of time to get her settled, and of course the internet is never wrong. 


In the intervening weeks we did everything we could think of to prepare. I was determined that we would train this dog well, so that I could look after her with commands rather than exhausting my physical capacity. We were recommended trainers online and I read books and we listened to podcasts. The trainers made it look so easy: “potty train your dog in a week” etc etc etc. We knew from friends that it would be hard, that she would chew and bite everything and everyone, that we’d be sleep deprived for a bit. We also saw the love and joy that they derived from their relationships with their dogs, and were so excited to finally have one of our own. We figured we had the perfect set-up: our back-yard and bank account were secure, and I’d be at home most of the time to keep her company. We knew it would be an adjustment for Robot, our big black 11-year-old cat, but thought she would small enough that he would learn not to be afraid of her. The timing seemed right. 


The timing wasn’t just about housing and money, but also about babies. Emmie and I had always presumed that having a baby wasn’t going to be possible for us. I was never going to be able to carry or care for a baby, and we relied too much on Emmie’s income for her to take a year (or more) off to do so. It wasn’t a decision we thought was ours, until my family offered us some extra financial support a few years ago. We considered it very seriously, even getting to the point of asking someone to be our sperm donor. We each swung wildly from “we can definitely do this” to “we should definitely not do this”. After more than a year of deliberating, we landed on a no. In the end it was a positive improvement in my physical and mental health which swayed us. I had seen how hard having young kids is, both physically and mentally. I didn’t want to lose the hard-won gains of many years of experimenting with medications and working on pain management techniques. I had come a long way in adjusting to living with a chronic pain and fatigue and shitty mental health and felt like I had built a life that I wanted. I couldn’t bear to lose that, no matter how much I wanted children. 


It was fairly inevitable to start focusing on a dog after letting go of the dream of having a child. We like dogs a lot. We loudly admire every dog we pass on the street. We go to the dog beach and and try and talk to other people’s dogs on the regular. We’re often found hanging out with the dog in the kitchen at parties. So we were beyond excited to bring home the caramel coloured fluff ball that would soon be named Mojo. Emmie drove to Hunterville on New Year’s Day, and I impressed on her the importance of video calling me as soon as she had her in the car and every time they stopped. The puppy barked miserably for the full 2 ½ hours home, but as soon as she was out of her crate and with us, she was a joyful, licky, wriggly, adorable little creature. I was already in love with her before Emmie walked into the yard and put her in my arms. 


I don’t think I can quite write the experience of the 3 weeks Mojo was with us. It was so much harder than we had imagined, harder than anything else I’ve attempted. Our house, our bodies and our relationship were a complete shambles. She was never calm unless she was asleep, which required a lot of cajoling, barking and tears all around. My physical and mental health fell apart. I started having multiple panic attacks every day. I was afraid to be alone with the puppy, because my body and anxiety couldn’t keep up with her. We argued over toileting, training, feeding, baby gates, treats, commands, the cat’s misery, the dog’s misery, our own misery. She got more and more frenzied. We had to hold her like a rugby ball so she couldn’t jump up and bite our faces constantly. 


And yet she was wonderful. She was hilarious and unbelievably adorable. She loved people, and wanted to lick the face of everyone she met. She was fascinated by the world, and so anxious to get out there and see and smell everything. She was clever, and learned commands and her name super quickly. We took her to the beach and the cafe and to parties and everyone loved her. It was incredible having this tiny friend who looked at me like that, and who needed me so much. 


We tried so hard to make it work. We bought everything we could think of to make it easier and it didn’t help. We asked the internet what to do and it didn’t help. We got a trainer into our house and it didn’t help. We went to puppy training school and left in tears. We tried and tried and she got more and more frenzied and we got less and less functional. Emmie was due back at work and even with extra help via my disability support she had to take emergency leave. We knew we were doing it wrong but couldn’t figure out how to do it right. 


We both came to the conclusion that we had to give her up pretty quickly. She went back to her breeder who worked with her to settle her, and found her a new home. We don’t know where she is now, and that’s hard. She was only with us for 3 weeks, but it feels much more significant than that. All those possible futures. The grief and guilt have been huge. We miss her like billio. 


My stomach flips now every time I see a dog on the beach or the street, the way it does when I see other people’s kids on Facebook. Of course the intense things I feel about losing Mojo are largely fueled by the loss of having kids. I wanted the kid life a lot. I wanted that kind of relationship and love that only comes by being primary carer for anther being. Having a dog was supposed to be a way to experience a bit of that. 


I know grief will soften, and maybe there will be another dog one day, but right now I’m sad and angry to have lost this possibility. I think a lot about my friends who have experienced infertility and child loss, and those, like me, who never got to try. We hold it together in public, and love the children around us, but it is quietly devastating. Noone talks about it much. 


Mojo wasn’t the 76th future we wanted and expected. I imagine these is something philosophical to be learned for that. Until then we will just miss her, that tiny, soft, lovely ball of fluff. I hope she is always as loved as she was by us. 

Activism = not accessible. Mostly.

A few years ago, when I first started using a walking frame, my girlfriend and I went to join the slut walk from Courtenay Place to Civic Square. I thought I was really clever because I’d made a sign for my walker that read “Slut Walker”. It was a good march, lots of bare nipples and placards and chants. Emmie and I started somewhere in the middle of the crowd, but as we walked along, people started passing us. By the time we were half way there, the march was well ahead of us. We weren’t part of the thing anymore, we were just two people walking down the street. I pretended that it didn’t matter, but it really did. Even thinking about now it makes me cry a little bit. It’s the literal version of all the times I’ve been left behind, and felt invisible, irrelevant and excluded because of my physical ability.

So this weekend most of the queers I know will be marching to celebrate our community and the battles that have been fought and the people who continue to fight them. It will be colourful and beautiful and full of pride. But I won’t be there, because as far as I can tell it won’t be accessible. I could be gracious enough to sit by myself somewhere and watch and cheer as they come down the road. But (a) I’m not and (b) that would be a shit time.

There are heaps of things that can be done, like checking that the footpaths on the route are safe for wheelchairs, and letting people with impairments set the pace. TBH, a lot of the time, I still wouldn’t be able to join in, but I’d be more likely to try. I’d be less likely to be steering clear of the whole thing so I don’t have to think about it.

Accessibility gets forgotten at community events like these. It’s hard for volunteer-led organisations to do everything necessary to be fully inclusive. Resources are stretched and we all have blind spots (they usually align with our privilege spots). And yes, I should probably be joining the committee and asking the questions and making sure that someone does something. But I can’t right now because chronic pain.

I’ve recently got involved with InsideOUT, an organisation that aims to create safe spaces for young people of diverse sex, gender or sexuality. It’s run by a group of young people who try really fucking hard not to leave anyone behind. They know that there are forms of exclusion beyond the ones they’ve experienced.  I’m inspired and humbled by them. Instead of marching tomorrow, I’m gonna make them cupcakes. With two types of rainbow sprinkles.

I was at a party on Saturday, sitting on the couch, drinking a mojito, talking to someone new. She asked me, what do you do? I searched through my mental list of responses and settled on the frank answer: I’m not working at the moment because I have a disability. Then I replayed the party to that point in my mind. I watched myself mixing drinks, getting the door, walking about. Really? What disability?

No one ever asks, of course, but I always find myself explaining. Over-explaining. Awkwardly stammering about upper body weakness, pain, assistive equipment. Anything to justify the disconnect between “disability” and able, social, normal looking me.

I count myself lucky to have the ability to do pretty much anything if I want to. I’m learning that it’s worth overdoing it sometimes, if it makes me feel a little bit independent or social or sane. It’s also a lot easier to ignore pain if I’m doing something fun and engaging.

I’m not sure why feel like I have to explain myself; I bet people don’t judge me half as harshly as I do. But I’m always worried they’re gonna think I’m faking it.