One year on

Dear friends, we're off on an adventure! Three months of an adventure, in fact. I've finished my work, and I've just hit one year since my stem cell transplant. My phone keeps giving me “highlights” from a year ago, highlights inevitably featuring a hospital bed. One with a facecloth on my bald head and a bowl of cereal in my hands grinning at the camera, and another of Mohamed lazing on my bed getting a foot rub from my aunty…

But now we are in 2024, and we are decidedly not in the hospital. The last few months have been a ride; I unsurprisingly overdid it with my drive to do ALL THE IMPORTANT LIFE GIVING THINGS when I felt well and the beginnings of feeling strong, and inevitably crashed. So the last month has been viral infection, shingles, and getting mistakenly given a live MMR vaccine… (the upshot of the massive kerfuffle being that they got my immunology test done and my immune system is (relatively) strong!)

The cancer roulette, you never know what you're gonna get. In the end, I didn’t get measles, and I did get confidence that I am strong enough to travel.

I’m a girl who likes to pass tests (with flying colours), so this was especially wonderful.

I was tidying the house in all the places I don't usually tidy before we left, and found my old diary from 2021, the time of my diagnosis. It was sobering, really, to read it; the wild uncertainty, managing grief and gratitude, the physical pain, the navigating a less than one year old relationship that just had an incurable cancer diagnosis whisked into it. When I'm home, I'll go back to that diary, and see what I can share of it. The raw and unfiltered workings of the mind.

On books, I'm reading an incredible book at the moment. Usually I only take books on long travels that I don't much care for (but are entertaining enough), so I can drop them on a hostel bookshelf somewhere and pick up another - often a gem, sometimes not, almost always something I otherwise would never read. Once I found The Inconvenient Indian by Thomas King in a hostel in Puerto Escondido, Mexico. This booked smashed apart my ignorant understanding of north American colonial history but it also had a name and phone number, complete with country code, in the cover. Naturally I messaged the person, who had interestingly never read the book, but had been in Puerto Escondido with friends a year or so earlier. Like books found in hostels, some are quality and some are mere passings by. This interaction was of the passing-by quality, but it was entertaining nonetheless.

The book I am reading now is called Awakenings by Oliver Sacks, and I originally mistook it for a novel.

But incredibly, this is all true. He is a doctor, and these are his case notes; people who were, in many cases, “asleep” or deeply Parkinsonian for decades, lost in the back wards of chronic hospitals, place for the “dead and dying”, until this dopamine drug “awakened” them, and brought them able again to commune with the external world, for a time, at least. It is a narrative medical, human, and spiritual study of human beings usually confined to statistics, of people many thought were no longer “there”. These people, once “awakened” inevitably then experienced unimaginable “tribulations”, their response to the chemical non-linear, chaotic and unpredictable.

But this book is not merely a set of case studies, it is an analysis of the essence of being-in-the-world. It is an essay of how such severe illness, or living-with-illness, cannot be seen, or treated, independent of someone's life, character, relationships or history. It is a study of the nature of space and time in our subconscious brains, and it is a deep reminder of the humans that live within bodies that can act, out of their control, in ways we may find frightening, abnormal or grotesque. It is a lesson in accommodating illness without relinquishing yourself to it, and offers many opportunities to reflect on our own “suffering” in a world full of suffering.

At the end of one of the case study narratives of a woman dubbed “Miriam H.”, Sacks writes:

Against all odds, Miss H. has always managed to be a real person and to face reality without denial or madness. She draws on a strength unfathomable to me, a strength that is deeper than the depth of her illness.

I think that is all we can really strive for: rather than an absence of illness, (for there will always be illness), to cultivate strength deeper and more profound than the illness itself.

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I wrote at the start of ALL THE IMPORTANT LIFE GIVING THINGS without telling you what they were. One of those things was that Mohamed and I got married on the beach in Dunedin in a small and intimate morning ceremony in May. It had a pretty short lead in time as weddings go, but that meant it was simple, relaxed, and so very wonderful. We don’t post on social media, but I want to share this here: the slideshow dad put together for us, with the gorgeous photos from our friends and family.

Each photo tells a story of the gifts of love given by those who surround us.

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I admit now, a ways down the page, that — snap! — because it has taken me so long to write this, we have now been on our trip for two weeks, and we are now staying in a village in the northeast of Malaysia. We are doing a “Workaway” where you do some hours of work each day in exchange for board and food, and an opportunity to experience local culture and meet local people. So far, we have sung karoake in a purpose-made room in the matriarch’s son’s new house, spent hours arranging sections of the Quran, learnt much Bahasa Malayu language, hung out with heaps of local school children, and sweated in all the places, all the days. One of the most wonderful things, is with all the moving, the heat, the unusual food and circumstances, I have stayed well, and so far, had very little of the post-treatment issues that I have been dealing with this last year. These are all wonderful things.

Throughout my life, I have written when I have been struggling with something, or when I have been travelling, trying to make sense of the world around me. So I may share some some travel musings in this Substack over the next few months, for those who are interested…

For now, one year on from the hospital, here are some photos:

My fun game in the tourist spots of Singapore was to find ways to take photos of people taking their “Insta” shots. Mohamed was a willing apprentice. Spot the woman taking a photo with her teddy bear in the foreground :D

Getting comfy in the night train.

Just going for a dip…

Everywhere for a free Palestine.

Kidlets on a farm visit

Can you tell how stinking hot it is? Here, we were at “Bubur Asyura” a religious celebration where many groups each make a thick porridge, cooked in large woks over gas fires, and mixed with large poles. The porridge was then dressed with ribbons of colourfully dyed egg, and given to elders in the community. Mohamed and our fellow Workawayer were interviewed on camera to share their experience, of course

For Malay karaoke vibes, check out: Cek Mek Molek

The job was to arrange these panels of a verse of the Quran in the right order. Some had numbers, some did not, some had the wrong numbers, some needed fixing, and some, we eventually found out, were missing…many hours were spent consulting a version online, and searching for the matching words on the panels…needless to say I was second in command for this task.

And with this winding tale, I will sign off. We just got a massive lizard out of the rafters of one of the bedrooms, and it's time to go to bed.

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