Mackaya Bella

On chronic pain and presence.

There is no single day of my life now that isn’t marked by physical pain. Pain that makes the edges of objects blur, pain that twists the daylight, pain like a hot screw being pushed into my hip joint, that wears out my lungs, makes my shoulders shake. My partner, the best of men, brings me tea, brushes my hair, gives me his hand to squeeze as wave after wave of the pain slam through me. His steadfastness is like a lighthouse in the dark of a storm.  

I suffer from endometriosis, and intense nerve damage because of it. I also have a handful of mental illnesses including bipolar 1 and OCD. I can only walk with a cane, and sometimes need to use a wheelchair. I am housebound most days. All of those facts, seen together,  have depressed me. But I’m learning things. I’m learning that pain can be a gateway to a different kind of awareness, if you are patient, if you watch for the small chances that come to you and pass by so quickly you might miss them if you blink. It’s not noble, suffering. It’s not beautiful. But it can be a teacher. 

So I want to write here, about my chronic pain and mental illness as well, in the coming months and years. I want this place to be a record, of sorts. That I learned things, that I grew. That I strung my life from moment to moment, each one aglitter with something singular and belonging to itself. Love, for many, many of them. Anguish and grief, for some. Each one leaving a trace on the world that can’t be easily washed away. I want to write here about what I love as well as what I’ve lost. 

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On one of the days when the pain retreats from my legs like a dog beaten back, I take my cane and totter outside to the garden, where, in the shadow of the large oleander that grows in an arc over the paving stones, the mackaya bella is flowering. 

At first we didn’t know what it was, the flowers in their pale lilac bells ghosts against the hunter green of the ivy. They tipped upwards, as if they were cups to drink from, a faerie chalice. Em identified them in the end, remembering them from her childhood in KwaZulu-Natal. That day, I’d leaned over the bush beside it to take a picture, but had to sit down again, unsteady on my legs, and then shortly after, had to go back to bed. Still, I pored over the picture, editing it to post to Instagram with care and soft wonder. It took a few days until I landed on a good pain day, when I could go back out, alone this time, to smell it. 

It had been a rough day in other ways. Things at work weren’t going to plan, I was beset with deadlines and messages that required quick responses, all the usual stuff of contemporary white-collar life, except on top of it all, I’m autistic, so the world seemed to come at me from all sides, like a hundred thousand tiny needles pressing into my skin all over, sore and insistent. 

But here were these flowers. I leaned over the brush just as before, almost tipping over, and pushed aside a branch to bring the flowers to my nose. They were faint, retreating, but there, there. Rose syrup with cinnamon in a glass on a garden table and the leaves are green, green. Shadows of leaves over me, the wind in the trees making them dance, shadow and light, shadow and light. And there I was, my body, for once, God, holding me upright as I did something I wanted to do. In the end the smell didn’t even matter, it was the fact of breathing it in, after so long stuck indoors, in bed, that moved me so. I was drinking from the cup of life, again. I was suspended there, one hand on my cane, one on the branch, swaying slightly as I kept my balance, in that moment of the light moving across me in coruscations of gold and green, the wind seeming to push me closer to the open blossoms. Alive. In pain, exhausted, but alive. 

Since I’ve become physically ill, I’ve also become hungry for the world. Spending most of my days in bed, I focus my attention deeply on what’s right in front of me. My grandfather, when I was little, taught me to watch the world closely. He told me that a game I could play, when I was uninspired, or bored, or feeling terrible, would be to watch the world through a ten-centimetre square. He used to do that when he was small, his imagination bearing him aloft and away, past the daily drudgery of his life to worlds where armies of ants and beetles fought battles on the grass, or where a bird, darting through, bore a message from a golden fairy queen to an emperor far away. The whole world could come to you, then, he taught me. 

I’ve learned over years of illness not to yearn too much for what my body can’t give me. Instead, I am learning, bit by bit and often in a fraught and clumsy way, to meet it where it is, just today, in my own ten-centimetre square. Today, I smelled a flower I’d never known before, growing from our own garden like a gift left to us by the people who lived here before. A flower that tipped itself upward to me and spilled its scent into my very breath, like a kiss. 

And today, just today, that’s enough.