I struggle with my limitations. I’m not sick like I was in 2019. I haven’t had trouble with the mechanics of walking since I last flew up to Auckland in February. I don’t have days and weeks of migraines every month like I did for most of last year. But I’m sick. Always tired, often in pain, with flares of allergic type symptoms. I’ve lost the feeling of being well, I can’t remember how long ago I had that feeling. I’ve lost the confidence of knowing how my body is going to respond to something. The confidence I completely took for granted – that I could put shoes on and go wherever I wanted.
I miss walking. I miss heading out the door with no particular destination in mind. I miss walking and keeping on walking. I miss ending up somewhere a long way away, and the satisfaction of aching feet at the end of it, of having got somewhere under my own steam. I miss the quiet of walking. The way I get lost in my own thoughts. The sky above me and how wide it feels. The thinking I do when I walk. How the steady rhythm of my feet on the ground unravels me.
There are other things I miss too. I miss getting up at dawn. I miss the feeling of being able to get up before anybody else and steal some time in the dark quiet. We watched an old episode of Grey’s Anatomy last week and there was a scene where Meredith arrives to start a shift in the pink-grey dawn and I was suddenly gripped with longing. To be out at the first glimpse of morning. To have the whole day stretch out in front of me, all those minutes and hours to do things and go places. I can’t remember how that feels. Did I think that time was mine to eek out to the very last second? I did.
Time is different now. Deadlines come and go. I make dates and arrangements and hope I’ll be able to meet them. I’ve stopped making lists. There’s not much point in planning a day. If a migraine comes, there’s nothing to be done. I make an electrolyte drink, maybe eat something, go to bed. And then I lie there waiting. Hours pass. Days pass, sometimes. Doing nothing except lying. Watching the strange scribbles and blurred waterfalls which move down my eyelids. Maybe listening to a podcast on low and letting the words wash over without making sense. At least the time goes more quickly. That is, it inches.
I’ve ditched the diagnosis I was given when I first got sick. It took me a year but I finally stopped treating the rehab psychologist like a god in my head who must be obeyed or else. He spent one session listening to me and then the next three sessions telling me why I was wrong and how I should think in order to be right. He meant well. But for all my efforts to comply with his ideas about how I should be thinking, I didn’t get better. And when I didn’t get better, my first thought was, it’s my fault. The burden of responsibility for being sick was heavy.
I finally found some hope by doing the opposite of what the psychologist told me to do. I researched. Thanks to that and a good GP I have answers now. Instead of a vague neurological diagnosis I have a diagnosis which fits what is actually going in my body. And a treatment plan that has nothing to do with “thinking right.” I do think, of course I do, and I think in the direction of wellness, because I’m not stupid. But it’s a gentle thinking now, kind thoughts towards the particular white blood cells which are set on overreacting. You’re doing ok, I tell them. We are doing ok.
On New Year’s Eve last year, all those strange days and months ago, Ali and I walked up to the Organ Pipes – the basalt rock formation to the side of Mt Cargill. It was early evening and the sun was heading west. It was incredible to be up so high, to look out over green bush and pasture and hills, and the mountain ranges far off – grey and shadowy against the hazy sky. I looked down at the land as it lifted and fell and thought about how much there is to surmount on a journey by foot, as people once did, way back. And it occurred to me that when we travel by car we lose touch of that sense of actual travel, of our feet trekking up hills and down valleys, one foot after the other.
I had no idea then how this year was going to go, in any of the ways it ended up going. None of us did. At that point I thought 2020 had a promising ring to it! I so badly wanted 2020 to be different from 2019. If 2019 was a place I was trying to get away from I was standing in the airport at the airline counter desperately trying to buy a ticket out right now. I wanted to walk out onto the runway and climb up into a plane. I wanted to watch the door close and not open again until I was somewhere else. Somewhere completely different. Somewhere far away from 2019. Well we all know how that went.
We didn’t go anywhere at all. 2019 just reinvented itself into a year worse than nightmares. And now that we are heading into the final stretch towards December, we can’t help hoping – are we are over the worst? We’re abundantly lucky here in New Zealand, and we know it. We voted our thanks and our belief in science at the weekend. But without a vaccine there’s not much to hope for. And there’s work still to be done. The work of staying vigilant, of keeping things going. The work of supporting those who’ve lost jobs, of loving those who are grieving. The work of listening to those who got sick with COVID-19 and are still sick, months later. The work of supporting those for whom, owing to systemic injustice, the COVID fall-out is greatest.
Standing up at the Organ Pipes at the end of 2019, I thought I had a metaphor. I thought travel by foot was my metaphor for 2020, my metaphor for getting through life. I knew I couldn’t fly out of 2019, I knew there was no escaping anything that quickly. I thought what was needed was a simple process of moving slowly and steadily in the direction of somewhere else, one foot after another. But I never imagined I wouldn’t be able to go anywhere. I had no idea I needed a metaphor for staying put. Yet here I am.