Sometimes you need bed, sometimes you need to push through: What a brain tumour taught Jamila Rizvi about endurance

Jamila Rizvi was diagnosed with a rare brain tumour in 2017. “Our narratives of illness are, in my view, too focused on stoicism and solitude,” she says. (Supplied)

It’s odd, how often we view moments of endurance as requiring almost entirely physical strength: climbing mountains, scrambling up rock faces, running marathons across deserts. These feats are usually portrayed as traditionally masculine: hard-core workouts, ripped abs, various “tough” displays.

But what so often goes unmarked are the moments that require every ounce of strength you possess, but appear ordinary: getting out of bed and going to work when your heart is a comet-pocked wasteland, speaking in public when anxiety turns your legs liquid, putting your feet on the floor after surgeons have sliced you in two, and shuffling down a corridor, gritting teeth with pain and effort. Uncurling from the fetal position when depressed and doing anything at all.

Author and commentator Jamila Rizvi, who was diagnosed with a rare brain tumour in 2017, knows exactly this. “Endurance isn’t something people who run marathons or win the final challenge on Survivor do,” she says. In recent years, she has endured two surgeries and 36 rounds of radiation. The lingering consequences include that she is now unable to produce cortisol and has impaired vision in one eye. Scars circle her scalp.

For years I’ve watched Rizvi — currently deputy managing director of Future Women (FW), a group that supports public and private groups working towards gender equality — work doggedly, giving speeches, chairing meetings, hopping between airports. She has also worked as a Labor staffer and editor-in-chief of Mamamia.

Now 38, she is a bright light in the media and I have long admired her tenacity. Every now and then an Instagram post will appear where she speaks of ongoing pain, tears, frustration and vulnerability at the changes her illness has wrought in her life. And yet, she continues.

Her boss, Helen McCabe, the founder of FW, says she is “at a loss” to explain the resilience of the colleague she has worked with for six years. “Her capacity for work, for people and for making a difference is probably unmatched,” she says. Her passion fuels her.

How she stays upright

I asked Rizvi how it is she manages to stay upright and found a story of talking, running, baking and a desire to stay alive that is “only slightly short of boundless”.

When you are feeling a bit blue, what do you do to pick yourself up?

Wholesome, ordinary, sentimental stuff. Reading old letters. Scrolling my favourite photographs on my phone. Drawing with my son. Hugging my partner. Walking the dog. Calling my mum and dad. Sending my sister stupid memes. During the two years when I was acutely unwell, I took up baking. I went from someone who would burn packet mix muffins to the person who makes everyone’s birthday cake at the office. I find the unforgiving nature of baking strangely calming. It requires a degree of concentration to follow a recipe exactly and it’s precisely enough to stop my mind from wandering to where it’s unhappy. Also, running has helped. I was the fittest I’ve ever been going into that first surgery. I was running 10 kilometres most mornings, at a pace I would never be able to match now.

When you are feeling really, deeply low, what do you do to pick yourself up then?

Tell someone. I’ve spent too much time in a place of fear to stay there alone. No matter how terrifying the thought, I’ve found it’s always better to say it aloud. To spend time in the company of someone I love and knows me well, or sometimes, in the company of a near stranger who is willing to listen. Human contact and company are what pull me out of the dark and difficult times. Our narratives of illness are, in my view, too focused on stoicism and solitude. Speaking the unspoken fear or sadness aloud is simultaneously an act of vulnerability and bravery. People are a salve.

What have you learnt about endurance since your diagnosis in 2017?

That endurance isn’t just something people who run marathons or win the final challenge on Survivor do. Ordinary people, unsung and largely unnoticed, endure the unimaginable every day. When you spend lots of time in hospitals, it’s like catching a new train where life and death sit comfortably together on the fold-out seat next to the door. That sustained proximity to death makes endurance mandatory.

You think you can’t do it. You hear experiences described that you can’t comprehend are about to be yours. Friends say things like, “I can’t even imagine”, but you must imagine — because it’s going to happen regardless. And you learn that the human capacity for endurance is fuelled by a deep desire to stay alive. A desire that is only slightly short of boundless.

There are a lot of cliches around about how to endure rough spots, do any of them particularly grate with you?

There is a British woman called Emily McDowell who makes realistic cards for people going through difficult times. One of them says: “Please let me be the first to punch the next person who tells you everything happens for a reason.” The words are surrounded by pastel flowers. I will admit that this and the similarly frustrating “You were given this burden because you’re strong enough to handle it” do grate on me.

Generally — and I emphasise the generally — however, I try to give people some grace because it is genuinely difficult to know what to say when someone is seriously ill, especially if you don’t understand the experience. But yes, please don’t say those things.

What do you think people fail to understand about chronic illness?

That being tired is not the same as fatigue. That being medication-dependent is not like taking a Panadol when you have a headache. That you can look in the mirror and expect to see the “before” you, years after she disappeared. That consideration doesn’t have to sound like pity. That the shift from a good day to a bad day can happen in a matter of minutes. That even constant, baseline pain is still painful. That sometimes you just need to be in bed. That sometimes you just need to push through and do it anyway to remember you’re a person and you’re alive. That just because you shared details of your condition yesterday, doesn’t mean you want to today. That no, we don’t want to try the vegan diet that cured your aunt’s Crohn’s disease. That being told you look great doesn’t make you feel better. That sometimes you just need to hate your body and the world that made you like this.

‘You get on with it’

When I spoke to Rizvi on Friday, she was in Canberra flying between meetings. We spoke about the marathons that recurring illnesses, or operations, feel like, and she told me about the moment she stood up for the first time after her first surgery, at her surgeon’s urging, and immediately vomited blood that was black, like tar. She had drips, cannulas and various cords attached to her body.

But her husband and sister were on either side of her, and when her sister said to her: “This is fine. This is completely normal”, she was able to go on.

Endurance should not be seen as a tale of woe, but survival, she says, often enabled by a support team (especially, in her case, her husband).

And we should not look at the ill, or the recovering, “with pity but with awe”. “If the world viewed someone who survived cancer as an incredible potential employee like someone who had run a marathon,” she says, then people would be more comfortable being vulnerable and open about experiences with poor health.

The truth, Rizvi says, is people adjust: “We adjust to the circumstances we’re in. Even the incredible and the unimaginable become normal with time. You find a new baseline. You hold onto what’s worth pushing through for. And you get on with it.”

This is part of a regular series called Staying Upright, where I explore how humans manage to persist, despite everything. Feel free to contact me here.