Day 100: Between Here & There, in the Wilderness
What the 100-day journey became, without meaning to
This is a love letter to the landscapes that remake us while the body remains a question.
When I started writing these 100 days, I had no idea where I would be in 100 days time. I had zero idea of what I would end up capturing. I had no idea about how so many of you where there for me in so many different ways. That it makes me feel quite emotional to think about.
But today - on what feels quite significant; day 100 - I am on a train, somewhere between Seattle and Chicago, really somewhere in northern Washington state.
Literally transitional. Literally in the wilderness. No signal. Who knows when I will be able to post this? Going past beautiful forests and mountains that I can only see the outline of as the darkness has descended. I did not plan that day 100 would fall in the literal middle of this journey.
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The Empire Builder #8 Amtrak train threads its way through the USA’s most northern states, the landscape shifting from water to mountains to stretches of unknown land. Mountains of history, holding so many stories of the world. of what it has over come and what is to come. Of humanities resilence and how nature can defy us.
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The motion of the train is steady, almost meditative. It mirrors the state of my mind: moving forward, but suspended in an interval where conclusions have not yet arrived.
I am in transit: geographically, emotionally, medically. It is a familiar territory. A territory I once hoped I had left for good
(although, do we ever as we are gifted more time in this world?)
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At first, I was selfconscious about sharing my true thoughts - of dying. Of becoming a burden, again. Of having to potentially re-build a life again, after knowing what happens living with a life altering disease. I joked with friends, “What a terrible time to be committed to writing about what doesn’t suck.” Then, almost immediately, I realised what a gift it is. I shifted my perspective and said, “What a perfect time.”
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Earlier today, I walked through the University of Washington campus. I was inspired by seeing so many young people committed to their passions and wondering what life will have in store for them. So much potential. The light there in November is striking: a particular shade of gold that feels both generous and fleeting. Leaves burn bright before surrendering. The body understands this kind of light instinctively; it is beauty that knows impermanence.
And then, in the same day, I sat inside the Fred Hutch Cancer Center looking at an exhibition of visualisation of immunotherapies and turning genetic modifications on and off again. Like light switches. I wondered about my own light switches and genetic mis-coding. But mostly I noticed going through that building to the exhibition space smelt clinical. You could smell it before even getting into the building. And it really triggered some low-level ptsd in me.
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There, even in the gallery - the light was functional and without poetry, where time is measured not in seasons but in appointments and results. I know this closely. I move between these kind of spaces well, between a world of casual sunlight and a world of clinical vigilance. and what struck me most was how easily a person can belong to both. I looked at people who I wondered what they were going through. Them too on journeys unknown.
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When I began documenting these 100 days, I believed I was recording the aftermath of endings.
I had just lost an election. An election where I had been harassed, stalked, targeted by men who wanted to teach me a lesson about daring to exist visibly and being an ally. It really shook me to my core, and I had been exhausted by the violence of what was to come and with being disbelieved? Or worse, who cares? The 100 day project, I thought, would be a slow re-entry into myself: small acts of creativity, quiet noticing, a reconstruction of meaning. Something to look back over a summer of re-invention, perhaps?! Or fun? Or something. I even got a good chunk of you guys to create along. That was really incredible. From jewlery making, to prepping for TEDx talks, to writing a kids book, to a gratitude a day - so much awesomeness.
I love that we have made things together - marking time, so it won’t forget each other.
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But somewhere along the way, the 100 days became something else. The documentation took on an unintended layer: I have accidentally recorded the return of illness, or the suspicion of it. A lump. Persistent nosebleeds. Pain. Gastro symptoms (all on this trip with me). many hospital admissions and biopsies, that echoed something I have lived through before.
The uneasy knowledge that the body may be telling a story I do not yet have the language for. It is not dramatic. It is, in fact, almost painfully ordinary. This is what it means to live in a body: to be constantly negotiating with its mysteries.
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There is a particular psychological space that opens here. It is not fear, not exactly. It is more like a heightened clarity. A tuning of the senses.
You find yourself noticing everything: the way light falls, the warmth of someone’s hand, the taste of soup, the rhythm of passing landscapes - as though the world has tilted, and you are seeing it at a slant.
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I missed my usual USA late summer trip this year, because of all of this. And more. But the joy of getting to do it, esp when I thought I wouldn’t - at a time of year where I’ve not experienced before - a season of the “in-between”. Where we’re not quite at the end of the year, but the world is winding down - feels significant.
Like Susan Sontag writes - I am Between Two Kingdoms; not fully sick - but not fully well - living in the territory between illness and health. a threshold state that is neither and both. It is a doorway-state, the waiting room of the self. Or the next life.
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I am here again. Getting those passport stamps. But I am not the same person I was the first time I crossed this threshold. Fran reminded me of that a while ago. The first time around, I believed illness was something to overcome, to narrate into revelation. Now I understand that it is not a story of triumph or tragedy. It is a story of living. Because being alive has always meant living with uncertainty, only sometimes it becomes impossible to ignore.
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Today, I am out in the wilderness. the train cuts across the country, and I do not feel dramatic or heroic or undone. I feel aware. The world outside the window is astonishing: rivers fracturing into white foam, pines leaning toward sky, light turning everything briefly precious. The way the moonlight pours its light over the mountain tops brings me to tears.
I wanted to do this train ride because I couldn’t stop dreaming about San Francisco, and then beauty of mountains. Of granite, and volcanos. Of Water that spans a horizon. Sunsets that make magic real. Of seeing places that are small villages & will never see again.
I won’t sugarcoat the fact that I am desperately wanting more time on this planet that I love so much, even with its fucked up-ness. This planet of squirrels, Coca-Cola, Sunsets, amazing books, sunsets and moonlight. I want to try and be in whatever moment I get. So I find myself thinking that the purpose of this project was never to record healing or decline, but to document the fragile, ordinary miracle of continuing.
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And still I wade through the tides.
I do not know what comes next. I do not know what the scans will show or what the doctors will say when I return home from this journey. whether the lump is beginning a story I have already lived once. Whether my already ongoing diagnosis will have a clinical trial, or not.
What I do know is that I am here, on this train, watching the world move past me in a blur of gold and green and late autumn blue. Watching the darkness engulf us - but I do know that I am being steered, I am being taken care of by my incredible friends - you guys - who have all been following along or with me. And I am paying attention.
If there is meaning, it is in that.
If there is survival, it is in that.
If there is beauty, and there is, it is in that.







100 days of Smizzy awesomeness!!!! I have so loved your wonderful writing. Yeay!!!! Thank you sooo much dear friend, for sharing so much of your shizzle on here. So glad you got over the pond for your trip this year after all. Xxxxxxx