It starts on the right side of the head, just behind the ear. It sits in the hard cavity ridge you can rub with your finger at the top of the jawbone. By noon the next day it will have moved up and over the top of the skull, before settling on the back of it, slightly skewed towards the nape of your neck. There it will stay for a few days, just about a week. By the end it will have seeped throughout the entire brain, behind the eyes, settling into the sinuses. A week feels like an eternity.
We bought twenty acres, back when I was running marathons and managing work, our child, the gardening, knitting Christmas presents, baking pies for fundraisers, walking in the woods on Sunday afternoons, balancing budgets, replacing my mother’s misplaced credit card, renewing the car tax, advising a friend on postpartum depression, volunteering at the library, researching what type of chickens can endure harsh winters, writing letters of complaint to the council about noise pollution in our little village.
We bought twenty acres when all of it just seemed like normal life and our plate wasn’t full, and what’s twenty acres when I can add amateur landscaping to the list. Then one morning I was tired, more tired than usual. I dragged my feet and packed lunches and sat and watched TV. I looked at the vine growing through the window frame that I was planning on tackling in the sun but all I could see was the work, the hours of work.
The next morning I was tired again, but packed the lunches and got rid of the vine and kept the TV off and washed the floors and responded to those work emails and told myself that being tired was just an excuse for feeling a bit fed up and spoilt. I told myself to pull up my proverbial bootstraps as I slipped on my tall green rain boots. The boots that are covered in scratches from the brambles and woods that I tromp through every day, working on our twenty acres.
Time heals all wounds; even those we didn’t realize existed. My husband tells me this in a moment of panic, searching for words to explain the unexplainable. He tells me to wait, wait and wait for my body to heal. Let time take its toll. I don’t point out that it’s the wrong use of that expression.
He tells me this as he helps me out of the bath and wraps around my shoulders the navy terry cloth towel that came as a gift from the gym I joined years ago. It’s twice the size of a normal bath towel. It’s supposed to be a beach towel, by far one of the dumbest marketing campaigns I’ve encountered. He wraps the towel around me once, twice, tucking the end just above my breastbone and kisses me on neck. Wait, wait, wait, just wait, he says.
Why were they handing out oversized beach towels in an urban, landlocked city?
Wait behind a treadmill, waiting for my turn to use it.
I can barely remember what going to the gym felt like. I remember the changing room and the ridiculously strong hair dryers that sat in their little holsters. The fake vanities, industrial in stature, framed with small LED lights. I pretend to remember the feel of the treadmill under my feet, the pressure on my joints. I imagine I turn redder and redder, my calf muscles hardening as they hit their limit.
Waiting is passive. It is a non-action. I sit on the edge of the bed, the towel wrapped too tightly around me, crushing my chest just enough that I need to take shallow breaths. I don’t dry my skin, instead I sit and wait for it to dry in the air, until the only liquid that is left is in the drip from my hair, a trickle that runs down the top of my spine, into the blue. This is me not drying myself. This is me waiting.
The doctors tell me to wait. Wait and see. Perhaps you’ll fight this. Time is your friend. Wait and see. We have no answers, is what they want to say. Wait for the test results, wait for the next appointment, wait until you are more rested. Wait until hopefully you recover by yourself, because at the moment we’ve got nothing. Wait until I retire and a new doctor can deal with you.
One day there are clumps of hair in the sink. Wait, wait, I tell myself, maybe it will stop falling out and regrow. It’s best to cut it all off, I tell myself. I put the scissors down and decide to wait until the next morning. Wait and maybe tomorrow it will have stopped. I’ll wait for it to grow.
Wait, stop rushing. Start prioritizing. Enjoy the sunshine.
If anything, aren’t I learning that life is too short to wait? No one seems to find this funny.
I make a bucket list.
When I was sixteen my parents forbid me from dying my hair purple. I was allowed to dye it any natural color I wanted, but nothing unnatural. It means you are trying to change who you are, they said.
I put down ‘dye my hair any fucking color I want’.
I put down ‘pierce my nose’.
I put down ‘go on an all-expenses paid vacation where there are cocktails by the pool and I never have to clean the dishes’.
I put ‘run a marathon’ and then cross it out.
My list is small. My list is trite and stupid and full of anger and resentment towards the people who I want more from. I tear it up and tell myself that life is too short for anger and resentment.
I like my hair the way it is. I just wish there was more of it these days.
You want to be angry with someone because you are angry at whatever this is, my husband tells me over the phone. He sits at work and I sit on the bottom step of our stairs, sobbing into the phone, trying to explain to him through the hiccups and snot and spit that I can’t do this anymore: it’s not just the pain, endlessly described to me as inflammation, the ongoing list of allergies, the various erroneous reactions to medications, increasingly making things worse as I wrack up more side effects than I thought possible, than they thought possible. He offers to come home early, and I decline. He can’t fix it. He can’t fix me. All he can do is watch me wait.
Another test result comes in with no answers. A day in the hospital with nothing to show for it, a day in a waiting room. I rationalize it on the way home: it’s not bowel cancer, it’s not lung cancer, it’s not brain cancer. Clearly it’s not cancer. This is a good thing. But I need them to find something.
I’m learning to second-guess my responses, now that everything is tinged with weakness. With the pain management comes the endless doubt of self-inflicted genuine hypochondria. The management feels like recovery and yet it’s not. I’m just moving slower, doing less, slowly stagnating.
I feel better because I’m not pushing myself. I’m waiting for the day when I return to normal. I’m getting thirteen hours of sleep and smiling in the morning. But it feels fake, both the pain and its management. If I feel better now, why I can’t feel better all the time? Maybe it’s all in my head, maybe I can go out and help lift the groceries out of the car. Maybe I can carry my four-year-old daughter down the drive to pick up the mail. Maybe I’m done waiting.
A mother at the school gate tells me about her husband: he had it in his lungs but they kept saying he was too young, it was just bad pneumonia, bad bronchitis, bad pleurisy. Then one day he passed out, turned blue and they had to helicopter him out to the hospital. Four weeks later he was gone. I come home and tell my husband. I know it’s not cancer, but still, can you imagine? I ask him. I want him to tell me to stop worrying.
Lying in bed, I know we both settle on that story more often than not. What if waiting is exactly what I shouldn’t be doing? I waited six months before I told anyone and even then the doctors told me to wait longer: maybe it’s the flu, maybe it’s a virus, a really bad one, maybe it’s two viruses, back to back, what bad luck, maybe it’s lead poisoning, your house is so old, maybe it’s legionnaires disease, all that gardening and the old tanks filled with stagnant water, maybe it’s food allergies, maybe it’s hay fever, really, really bad hay fever, maybe it’s stress, anxiety, depression, that’s it, it must be depression, and you don’t even realize. You do seem sad and down and not your usual self.
One day I wake up and can barely move my left hand. I hold it to my hip, trying not to knock into things with it. I can’t tie my shoes, thank God for Birkenstocks and automatic cars. My husband is away on business again and I don’t tell him for two days, instead I drive carefully, using my wrist for support, going slowly around corners. All I have to do is get back and forth on the school run.
Everything else can wait.
The muscles loosen after a week and movement returns. The doctor writes it off as delayed temporary nerve damage from so much manual use even though I haven’t been doing anything manual for months. Maybe you slept on your wrist at a funny angle. These things happen. Maybe you held your daughter too long. Maybe you bumped into something. I raise my eyebrows and the work ‘quack’ hovers on my lips. I change doctors the next day.
Finally they give me a diagnosis, per exclusionem: myalgic encephalomyelitis, chronic fatigue, yuppy flu. Whatever they call it, it doesn’t change how I’m feeling, or more specifically what I’m not feeling: hopeful. It’s not ideal, it’s far from ideal. Diagnosis by exclusion does very little in terms of reassurance. Especially when it comes with the news that there is no treatment, no knowledge of duration, no information to tell me about what the future may look like. You won’t die it from it, one doctor reassures me.
Will I end up in a wheelchair?
We don’t know.
Will I get my energy back?
We don’t know.
Will my hair stop falling out?
We don’t know.
Will I get worse?
We don’t know.
Will I get better?
We don’t know.
What do you know?
You won’t die from it.
Another one finds me in the waiting room, whilst I’m trying to find my keys somewhere in the bottom of my bag and wondering if I should drive myself home in such a state. We have no idea what we’re doing most of the time, he says. I want to kiss him.
I repeat it all to my husband. At least it’s not cancer, he says.
I am perfecting the art of inaction. I embody it. I wait, pretending to act. I have a diagnosis that is not a diagnosis but simply gives the illusion of one.
The next day my youngest daughter has her last day of preschool. The staff dress all the little children up in graduation gowns, complete with mortarboards. They give them all a scroll and one by one the little children walk across the stage that has been erected in the preschool grounds.
I clap as hard as I can when my girl walks up. She is wearing ladybird rain boots, despite the hot July weather. They gave me this magic gown, she shouts from the stage, oblivious to the pomp and ceremony the staff are trying to replicate. They said it means I’m going to become a big girl now, it’s magic, she says again, holding her scroll so tightly it flattens against her chest. I keep clapping, watching her tiny lips move as she talks to herself.
She has been waiting to grow up. And now she is grown. The nice ladies, in their matching red shirts, told her so. She’s done. She waited, waited, waited, waited, and then one day someone told her she was done growing up and just like that, she was.
My husband comes home from work, having been unable to make it to the graduation, and laughs as I recount the day’s events, mimicking our child’s enthusiasm as much as possible in my dressing gown and a rolling pin.
It’s a matter of semantics, I tell him. That’s what the problem is: we’ve been using the wrong words this whole time. It’s a matter of patience, not waiting. We’ve been looking for a verb, an action verb, because if I’m in action I’m not dead.
To wait is to stop, to sink, to flounder, to wallow, to wan, to fade. To have patience is something else, something noble, something brave, something alive.
After years of learning patience, the diagnosis is changed. We didn’t see it, we didn’t know it was there, these things happen, we’re sorry. Suddenly the semantics mean very little. Suddenly there is no time for waiting, certainly no time for patience, because there is no time. They give me a month, a week, a handful of days until there are none.
My husband takes my daughter to school. He tells her to stop waiting for life to happen to her, stop watching the world go by. He tells her to makes lists, to enjoy every minute life has to offer, fill it with as much as she can because there is never enough time. Waiting is inaction. You’ll turn into the shark that dies because it stops swimming. He still misuses his metaphors and clichés, yet they serve their purpose.
She pierces her bellybutton and dyes her hair Winter Moss Green, making it look like mold has taken over. She slams her bedroom door and refuses to talk to him for three days after he tells her she can’t go to a party.
I want to tell him to wait, wait for her, she needs time to heal, time to grow, time to make a real list. He will just have to wait.
ANN MAHDAVI is a Franco-American writer based in the UK. She is a graduate from the Creative Writing MSc program at the University of Edinburgh and is currently working on a collection of short stories, whilst teaching and lecturing.