Home, Sickness, and Sunshine

I’ve gathered my notebook and pen; I’ve got a freshly made coffee and I have already bought the cats outside and to spend some time in the backyard with me while I write.  I start again by  writing about  the warmth, the sunshine,  the birds, the trees. I am writing about the external, the place, the changes in my location. You see after living in Victoria for ten years I have moved back to Queensland.   I’ve returned to a place familiar but different. The skyline is taller, denser. There are new tunnels and bridges, but the meandering river still weaves its path through the city. Brisbane has changed, but I have changed more.

In this familiar landscape I notice just how much I have changed. The differences in my body and mind. The things I can no longer do, the things I no longer want to do, the things I look forward to doing again, but differently. I am different to the person who left here ten years ago. Thoughts slip through time and place as I make my way through the Brisbane of now. Re-discovering and re-covering the person I am, was and can be. I catch glimpses of my younger self, walking the same streets that I do, sitting by the river. Stopping for shade under the same large trees to try and escape the sun and heat. This place feels like home to me. Here in Brisbane, the river, the roads, the trees, even the sunshine and storms are all helping me ground myself. It’s familiar ground, home ground. I am connecting again with this city, re-establishing, re-connecting and slowly expanding into the new and the old. I can feel myself returning.

I arrived in Brisbane well, or well for me at least. In my years away I become sick. I have a couple of conditions that cause a wide range of symptoms both neurological and physical. I have chronic hemiplegic migraines with episodes every day or so, they cause weakness – hemiparesis – on the right side of my body. A mild occurrence might cause facial palsy, or some numbness and tingling in my arm or leg for anywhere between an hour to a day. At worst, I lose balance and have trouble staying upright. Heaviness drags on me, speech falters, my thoughts are stilted and memory fails. I become floppy, a rag doll stuffed with potatoes, sometimes for  a few hours or a day. And then it will pass, and my symptoms will improve. After nearly five years of almost daily episodes I have developed ongoing movement and coordination difficulties and after each episode my body no longer returns to ‘normal’ functioning. I use a walker most places to help me with my mobility and so I have somewhere to sit and rest as I need to. I also have a diagnosis of fibromyalgia, which can leave me exhausted and in pain, exacerbating my other symptoms.  Activities become a little harder or a little easier depending on how sick I am from hour to hour, day to day.

In coming back to my home town I am reminded of what I am missing, the parts of myself that I used to identify with before becoming sick.  Parts that I used to be proud of. My stamina, my energy, my memory. I am trying now to be proud of this version of me, because I know pride helps to hold back negativity. The dominant narrative suggests that pride is the wrong thing to feel. The dominant narrative tells me that I should feel miserable about my illness, that I am wrong, broken and in need of fixing. In need of a cure. Instead the pride that I foster rebels. It fights this message that launches itself at me from all sides.  I am proud to stand my ground as a sick person, as a disabled woman. My sickness – my impairments -do not make my life any less, or me any less the person than I was without them. To borrow from the poet Laura Hershey, ‘You get Proud by Practising’.  And so I practice. As my get walker out of the car and wait for the elevator I try not to feel self-conscious, and usually I succeed.

Still, awkwardness and shame slips through from time to time. I find myself wishing for a different experience.  Sometimes it stems from my own self-doubt, my own internal bias, other times it is prompted by the abelism  and judgement I experience in the world around me. The frustration of trying to find a ramp entrance, or of not fitting down an aisle or between the racks at a shop. Other times it might be the bit too helpful shop assistant, such as the one who served me at the chemist, peering at me across the counter. She asked me if I was having a nice day out! Out of where I felt like asking her. I sort of mumbled something awkwardly about running errands on my day off. But somehow she seemed to think that going to the pharmacy was the highlight of my week, not the banal and boring chore it actually is.

Nostalgia brushes against me, knocking me slightly off balance. Sometimes it only takes the slightest of nudges and I stumble.  Yes, I can remember a version of me that was symptom free. But that version of me was not better, only different. That version of me that was symptom free, was not the bee’s knees. She had troubles, she had ups and downs, and she was nowhere near as happy or content in life as I am now. I would not want to be that woman anymore. Being sick has taught me to accept myself more wholly. I have learnt/ am learning to let go of perfectionism and to practice  compassion and kindness. Yes, living with sickness demands more of me- more self-awareness, more engagement with who I am and how I am. I’ve learnt to counteract the persistent presence of my illness and the negative stories that abound in society about those of us who are ill and disabled. I work hard at my life. I work hard at living well in my state of unwellness.  It would be easy to slide into a state of persistent longing for what I don’t have; good health, physical strength, absence of pain.   Instead, I navigate my way through this experience as best I can.

Arriving at the end of winter my wife and I moved into a small suburban house with a compact backyard. Worlds away from our home in Bendigo, Central Victoria. Our home in Bendigo was an old farm house on an acre and a half of land with dry and bristling bush around us. There were horses on the property next door and kangaroos came to our front door to eat the grass at night. We had space, solitude, a touch of wildness even.

In Brisbane  we have neighbours,  neighbours so close that we can hear the children playing and the parents fighting. Neighbours so close that we can hear the alarm going off in the morning. Neighbours so close that it makes me want to whisper sometimes just in case they can hear me as well.  We will only be in this house for six months. It is a starting point, a somewhere to move on from.. Although this house doesn’t feel like home, the trees do somehow. And so do the birds, and the sunshine and the sky. I didn’t realise I had missed it so much. The feel of Queensland, the sense of it as a place, as a form, as a part of me almost. Or perhaps as something I am and always have been, and will be a part of.

I am married now. My wife used to live in Brisbane too. We both lived here at the same time, our social circles overlapping, but we never met. In some ways I am glad of that. By the time we did meet in Melbourne I was very different to the person who lived here, and so was she. I like that we both have our histories here, our stories. Now that we have returned our stories are changing, growing. We show each other around, sharing the Brisbane we know. Sharing an unfolding of ourselves.  As we talk, my wife and I, about our past in this city we both agree on how happy we are to have changed in the ways that we have. It has taken  effort, reflection and intention. We are more comfortable now  in our own ways, we are more ourselves.

On a hot, humid day in December my wife Eva and I met up with friends at New Farm Park, an iconic spot along the Brisbane river. Stretches of green lawns are decorated with Jacaranda overflowing with their purple blooms. Even on a day as hot as this one, with the threat of rain and storms soon to come, the place is crowded. Our friend’s three year old is playing on the wooden fort built amongst sprawling Banyan trees. After grabbing a coffee we walked a couple of hundred meters to the ferry stop and take the City Cat along the river to Southbank.

Conversation turned to how much better I am now than I was a year ago. This has been an unexpected and very welcome change since my move North. Last December at Christmastime Eva and I were in Brisbane, but as visitors. Back then we met up with these same friends and their then two-year-old at a nearby pub for lunch. For that trip I was using a wheelchair, relying on Eva to push me so I could spend the day out and about .  My walking at the time was limited to a hundred meters or so. Even that left me exhausted. A year on I am using a walker could walk a  kilometre today, maybe more.

Why am I better? I talk about the changes that have occurred: climate, warm but stable, diet, I have reduced possible triggers and medication, I’ve finally found a tablet that stops my episodes of migraine progressing. I stopped rehab. It turns out that was causing me more harm than good. And I am back on home soil. I realise a couple of things as I go through my list. Working out what has helped is almost as difficult as knowing what has hindered. It varies you see. Yes the warmer weather seems to be helping. My body is easier to connect with. It flows better with less concentration. I can walk further  now, yet my gait seems as bad as ever. My walking is crooked, and without serious concentration I limp and lurch. I am moving though, and it feels okay. For now I have abandoned attempts to walk ‘normally’. Instead I focus on getting myself from A to B. By not worrying about how I look when I walk I am lightening my overall cognitive load. Reducing the work for my brain to do. This is another change I have made. I just keep moving forward however it may happen. I rarely fall.

This recent change in my health has me looking back to the beginning of my illness. I am still not sure why I became sick. Early on I was convinced that I alone was responsible. I believed that I had manifested my illness. I thought it caused by stress, or by  grief over my mother’s death,  for it was in the aftermath of her death that I became chronically ill. For a time I wondered, I’m almost embarrassed to say, whether I  was suffering from a  spiritual affliction  caused by my attachment to Mum. I wondered if I was carrying on something from her life, something she left unfinished. At other times I’ve seen my illness as random, or as genetic  -which is much more likely. I became sicker when living in Bendigo: did I react to the quartz in the ground there as someone  suggested? Or did my body just yearn to abide in Queensland again? Was I away for too long?

It’s a summer’s night early in the new year and I am having dinner with old friends. We  sit on the back  verandah  swatting at mosquitoes and drinking wine. The sun has set and the warmth of the day has given way to  comfortable night. They ask me why I’ve moved back to Brisbane.  I remember my home in Bendigo. At this time of day in mid-summer the sun sits at a low angle in the sky, full of heat that penetrates everything in its path. I loved it there, but it was difficult. It was a home, but not home. I tell my friends I never meant to stay away.

It was always my plan to return, but somehow one year stretched out to ten and those ten years went by very quickly. I also came back because I am sick and it seemed like I was getting worse. I felt the need to be closer to the familiar, to people who knew me well and deeply. Now here I am again, so much better than I was, pulled back by the invisible thread that has connected me to this place all this time.  A thread that weaves like the river does between my past and my present; between the me I have known and the person I am becoming. I don’t know why I became so sick. I’m not sure why I am now so much better. I don’t know if it will last. I do know I will need to manage this condition for the rest of my life. I also know that, like the city I live in I will continue to change, grow and adapt, becoming, more, and more comfortable with who I am regardless of how I am.