Here goes

I’ve been wanting to write again for a long time.

For most of 2023, I was living beneath the surface. A brain tumor that first announced itself more than a decade earlier, when I was living and working in Beirut as a foreign correspondent, re-entered our lives late one night in October. My partner David had to watch me seize uncontrollably for several minutes, afraid that I would suffocate before the paramedics could arrive. Mercifully, our five-year-old daughter slept through it all. She didn’t have to see me like that.

Despite the seizure, we didn’t think the tumour had returned. I’d been getting scans every six months, and there had apparently been no sign of it growing back. So instead, we thought that I had experienced a PNES - a psychogenic nonepileptic seizure, which can be (but is certainly not always) triggered by underlying distress. I may in future posts explain why we presumed it was PNES; suffice to say, the extreme stress and pressure I had been experiencing in my professional and personal life was enough to support that theory.

Days later, David and I were having coffee together when I received notice of the subsequent brain scan via text message. The text included a link to my scan, which I could look at myself on a downloadable app. This had never happened before; for ten years, my bi-annual scans would be read together with my specialists. This time I had a chance to look at it first.

I opened the image, and saw the familiar sight of my brain lit up with contrast dye. For the first time, there it was, as clear as day. A bright blob around the edge of my frontal cortex - a blob where it shouldn’t have been. In that moment, the next year of my life lit up like an airport runway.

Photo by Jordi Moncasi on Unsplash

I knew what the months ahead would hold: surgery, radiation and chemotherapy. I knew this because my specialists had been preparing me for it for the past decade. The tumor wanted to come back, and it wanted to progress. Its inevitable return had been hanging over our lives since 2012.

I will eventually write about what followed - for those interested in or affected by brain tumors, the biopsy following surgery showed that mine had progressed from a grade 2/2.5 to a grade 3 astrocytoma with IDH mutation. That differentiates it from the better-known glioblastoma, which is IDH wild type. In the old parlance, that grade progression meant my brain tumor had officially graduated from ‘benign’ to ‘malignant’ (though those terms have less meaning as medical science becomes more sophisticated, and cancer becomes more personalised).

Academic articles describe this as a ‘life-limiting condition’. What that means for me and my family is unknown at this stage. I’m not likely to die from it in the next decade, and probably not in the next two, but there is currently no cure and no official ‘remission’. Like everyone else with this rotten disease, I will likely have brain cancer for the rest of my life.

Why am I writing this now?

Because I want this part of my life to be a visible part of my work. I have had the great privilege of platforming dozens of victim survivors, who have generously and courageously shared their stories so that they may help others. I want to live up to their example.

After a decade of extensive work in this area, I am driven to continue writing and advocating in the area of gendered violence, coercive control, and patriarchy by so many things: the future of my gorgeous little girl, the people whose lives are so drastically affected by it, and the opportunities we have to re-imagine and re-orient harmful practices and systems.

Ultimately, I want this Substack to be a collaboration.

I want this to be a platform not just for my thoughts and ideas, but also for yours. I don’t like the terms ‘followers’ - ultimately, we support and inform each other. My work is and always has been collaborative. I’ll be platforming ideas and opinions from some of the world’s most prominent experts and advocates, as well as innovative thinkers that are not known. Some of the best and most effective strategic thinkers I’ve ever worked with are people entirely unknown to the public.

How often will I post?

Life is unpredictable, but I will try to post at least once a fortnight. Ultimately, I would like to post weekly.

Will there be free articles?

Yes! For starters, this Substack will be free to read. I will introduce a subscription service once it has built some momentum. I’m hoping that if enough people can subscribe to this, it will provide at least some funding for me to support my work on coercive control, and give me time and space to work on my next book. If you have the capacity to pledge financial support for this work, I would of course appreciate it.

Let’s go into the mystery together…

Photo by Luke Stackpoole on Unsplash

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