It’s time to step back into sunlight. It’s where I find myself now, on the threshold between an old familiar state and an unknown future. Cancer no longer lives in my blood, but it lives on in other ways, dominating my identity, my relationships, my work, and my thoughts. I’m done with chemo but I still have my port, which my doctors are waiting to remove until I’m “further out of the woods”. I’m left with the question of how to repatriate myself to the kingdom of the well, and whether I ever fully can. No treatment protocols or discharge instructions can guide this part of my trajectory. The way forward is going to have to be my own.
Referencing Susan Sontag’s assertion that “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” author Suleika Jaouad’s Between Two Kingdoms is an account of her experience with battling cancer in her early twenties, and what came after; not quite well and no longer sick, Jaouad found herself between the two kingdoms and without a road map out. This is a big — maybe slightly unrelatable — narrative because as an ambitious and hard-working young woman, Jaouad was probably always destined for a big life. It felt a little unrelatable that after graduating from Princeton, and after spending a few months of hard partying as an unpaid intern living in Manhattan, Jaouad decided to relocate to Paris; a little unrelatable that the instaconnection that she made with “Will” before she left the US would develop through texts and emails over the next few months until he decided to join her in Paris. When Jaouad’s strange and persistent medical symptoms (fatigue, itching, brain fog) finally leads to a diagnosis of leukaemia and she is urged to return to her family in New York state, it feels like a greater than average loss of a bigger than average future; it would make for bad fiction that Will follows her back to the States, moves into her parents’ home, and becomes one of Jaouad’s primary caregivers for the next few years. This is a big — if slightly unrelatable — narrative and it is well written, introspective, and as Jaouad was unable to find something similar to read when she was going through her years of therapy and its aftermath, I am sure this will serve as a valuable resource for others. As a general interest read, I would recommend this to anyone. (Note: I read an ARC and passages quoted may not be in their final forms. Spoilery from here.)
What would you write if you knew you might die soon? Bent over my laptop in bed, I traveled to where the silence was in my life. I wrote about my infertility and how no one had warned me of it. About learning to navigate our absurd healthcare system. About what it meant to fall in love while falling sick, and how we talk — or don’t talk — about dying. I wrote about guilt. I also wrote a will in case I fell on the wrong side of the transplant odds. To this day, I’ve never been more prolific. Death can be a great motivator.
Before Jaouad began her first aggressive round of chemo, and not finding much written about a young person’s experience with cancer, she decided to start a blog. When it unexpectedly went viral, she was able to turn the exposure into a series of columns for The New York Times ( Life, Interrupted ), and in the years that followed — as she and Will set up home together in her mother’s apartment in the Village — Jaouad was able to help support them with further writing and speaking gigs (she incidentally notes that she won an Emmy for the video series that accompanied her columns; this really isn’t an ordinary life).
Everything that Jaouad writes about her experience with cancer — the long journey to a diagnosis, her need to self-advocate, the treatments, making and losing friends from the cancer ward, the incredible strain on her family and Will — was very well written. From a social worker advising against Jaouad marrying Will (because she was on her father’s insurance and her upcoming bone marrow transplant alone would cost a million dollars) to the incredible pressure her brother was under as her marrow donor, Jaouad’s story made me think about things in new ways. But it’s in the second half of the book — when Jaouad starts to deal with what comes next — that her story enters territory I haven’t read about before.
After three and a half years, I am officially done with cancer — more than four years, if you start with the itch. I thought I’d feel victorious when I reached this moment — I thought I’d want to celebrate. But instead, it feels like the beginning of a new kind of reckoning. I’ve spent the past fifteen hundred days working tirelessly toward a single goal — survival. And now that I’ve survived, I’m realizing I don’t know how to live.
Will’s story — this incredible, ambitious but selfless partner and caregiver to someone he had only just met — was so present in the first half of the book that at one point I wondered why Jaouad was photographed solo (with her dog Oscar) on the cover; I flipped to the author bio at the back to see if it said she “lives with Will in X city” (it doesn’t mention a partner), and then I flipped to the Author’s Note at the beginning where Jaouad wrote which names were changed to preserve people’s anonymity, and I literally gasped when I saw the name “Will”. (And is it maybe a little unrelatable that Jaouad rebounded with a man who turns out to be the bandleader on Stephen Colbert's The Late Show; and is it wrong that it bothered me a little how much Jaouad agonised over being the one to finally end things with Will — while dating Jon, who she's still with — and although she sounds very generous in her painting of Will as an unappreciated angel at the time, I didn't get enough resolution about that relationship; and recognise that nobody owes me more resolution than I got.) The ending of this relationship, while Jaouad wasn’t quite well yet, no doubt prompted what came next — a one hundred day solo cross-country drive to meet up with people who had written to Jaouad in the early days of her blog:
I buy a sheaf of road maps and spread them across the kitchen table. Tracing my finger along the curving purple lines of interstates, blue squiggles of rivers, and green swaths of national parks, my itinerary springs to life. The drive will sweep in a counter-clockwise circle around the country, going from the Northeast to the Midwest, through the Rocky Mountain states, down the West Coast, and across the Southwest and South, then finally back up the East Coast. I’ll travel roughly fifteen thousand miles, drive through thirty-three states, and visit more than twenty people. Oscar and I will go to a boarding school in Connecticut, an artist’s loft in Detroit, a ranch in rural Montana, a fisherman’s cottage on the Oregon coast, a teacher’s bungalow in the Ojai Valley, and an infamous prison in Livingston, Texas. We will go where the letters take us and see what we find.
The variety of people Jaouad meets on this trip (not all are cancer-related connections) give her a new perspective on life, and between the road trip and the writing of this memoir, you get the sense that she has finally found her path towards the kingdom of the well. Again, this part is maybe not super relatable — how many new cancer survivors would have the time, money, and freedom to make a trip like this one; how many have access to a family cabin in the woods in which to later write this memoir? — but again, I got the sense that Jaouad was always destined to live a bigger than average life, and that comes down to talent and drive more than just opportunities (but the opportunities don’t hurt). I was touched and enlightened by this whole thing and am glad to have picked this up.
* I want to note that I’m a little miffed about the VW campervan on the cover — Jaouad writes that she bought the van after her trip, while writing Between Two Kingdoms at that Vermont cabin — and the whole composition just comes off as too PR-staged and Instagrammy to me.
I also want to note that Jaouad's experience chimes with what Jenn Gunter writes in The Menopause Manifesto (reviewed here.) From having her symptoms dismissed for the longest time, to needing to be the one to bring up to her oncology team the possibile side effect of infertility (Jaouad wouldn't have known about that possibility or insisted on an egg harvesting before she started chemo if she hadn't been researching her condition online), women need to fight to get the medical care that they deserve. It wasn't until Jaouad went to Las Vegas (where she was giving a talk) with a group of her fellow young, female cancer patients that she had the nerve to ask if any of them were experiencing similar sex-related side effects:
I also want to note that Jaouad's experience chimes with what Jenn Gunter writes in The Menopause Manifesto (reviewed here.) From having her symptoms dismissed for the longest time, to needing to be the one to bring up to her oncology team the possibile side effect of infertility (Jaouad wouldn't have known about that possibility or insisted on an egg harvesting before she started chemo if she hadn't been researching her condition online), women need to fight to get the medical care that they deserve. It wasn't until Jaouad went to Las Vegas (where she was giving a talk) with a group of her fellow young, female cancer patients that she had the nerve to ask if any of them were experiencing similar sex-related side effects:
No one on my medical team had ever broached the topic of sexual health and cancer during my treatment. No one warned me that menopause is a common side effect of the treatment I had undergone. No one advised me about the available remedies to help with the hot flashes and pain. I had waited for my period to return after the transplant; it never came. At the age of twenty-four, menopause wasn’t even a word in my vocabulary. In turn, I’d kept quiet about the changes in my body, believing that something must be wrong with me. I’d told no one about what I was experiencing — not my medical team, not Will, not my mother, not anyone — until now...That night, we were just a group of young women who had received little to no information about the sexual side effects of our disease, trying to puzzle it out together. I cried afterward, overcome by an odd combination of emotions: heartbreak over our shared loss and profound relief — even joy — about breaking through the silence, the shame of it all, together.
As with Gunter's book, I am happy that Between Two Kingdoms exists in order to bring this kind of information out of the shadows.
