(Trigger warning: cancer, death, illness, grief, The book contains graphic medical content and speaks about grief surrounding suicide.)
“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” Susan Sontag wrote in Illness as Metaphor. “Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”– Suleika Jaouad, Between Two Kingdoms
This book did a good job of breaking my heart, and piecing it back together with gold glue.
As someone who has also had their life interrupted by unexpected medical conditions, Between Two Kingdoms was a book that I delayed reading until I was ready, and it took a bit to work up to being brave enough to read, but it was worth trying as I knew it was an important story to read and to share on the Lady in The Lighthouse blog.
I was first introduced to Suleika Jaouad back in 2019 when her TED Talk ‘What almost dying taught me about living’ first aired and took the breath out of me. I recognised her experience from my own experience. I lost my health, independence, and the security in my life before I had even realised what had happened. It changed the way that people viewed me and spoke to me. It raised more questions than answers when I started to resurface into a hybrid of my medical and ‘normal’ world. How do we find ourselves after being in survival mode for so long? Who even are we after a life changing experience? How do we re-enter the world?
Like many people who are affected by illness or injury Suleika took comfort in words and art. While undergoing treatment for leukaemia, she created a blog post to share her experiences and musings about life with illness from her hospital bed, which then transformed into the New York Times column ‘Life, Interrupted’. Here, she stayed connected to a vital part of herself – writing – and found a community of people who were also experiencing the same things when illness or injury had interrupted their lives and security.
Released in 2021, her book Between Two Kingdoms, Suleika conveys the realities of illness, highlighting an incredible amount of unseen emotional turmoil that occurs when illness or injury strikes a person and the flow-on effect to their whole life and the people around them. The change in relationship with her partner to one of a patient and carer. The strain on her immediate family; she relied on her brother as her transplant match, her father for ensuring adequate research into her treatments and medical trials, and the insurance paperwork to cover it all, and her mother, falling back into the role of caring for her vulnerable daughter’s every need. Suleika has a curious way of writing about emotions that she endured without sentimentality and platitudes that usually come with medical experiences.
We are learning that sometimes the only way to endure suffering is to transform it into art.– Suleika Jaouad, Between Two Kingdoms
Similar to my own coping mechanism, she also had a daily art project to keep herself going and something to focus on during treatment, which the people around her and her audience from her writing were also participating in their own daily project. Her own 100 Day Project was mainly about journaling while she was unwell in hospital, which later fed into the writing in this book.
In remission, Suleika found respite in a small town, allowing her to be removed from the location of so much medical suffering, and that is when she starts to process the grief she had sidelined while trying to survive. Recovery was not what she expected or was told it would be like from all the stories and myths about leaving the hospital and re-entry into life as it was before. As we have both discovered, recovery can be the hardest part as that is when the treatment stops and the healing begins. How do I process what I have been through? How do I live ‘normally’ again after this life-changing, perspective-altering, commonly misunderstood thing has happened to me? How do I move forward while working through the emotional debris left in its wake? Why am I conflicted about honouring my new found wisdom while despising the experience that gave me it?
What could possibly be so hard about transitioning back to normality?– Suleika Jaouad, Between Two Kingdoms
Having time away from New York City inspires her to take a trip around America, for two reasons – to see new places, break out of her shell and rediscover who she is now, and to visit all the people who wrote her letters of support while unwell. This journey, as Part Two of the book, is another 100 Day project – the maximum time she could take between appointments and check ups. Borrowing a friend’s car, some camping gear, taking to the road as a brand new driver, with her dog Oscar, Suleika makes a journey that encourages her to open her heart despite life’s heartbreaks and fall into the hospitality of her supportive community.
When meeting with a fellow cancer survivor on her trip around the USA, Suleika makes note of the way a life changing experience can alter the way that we refer and talk about ourselves. How often do we refer to ourselves as the pre-diagnosis, sick, and recovering versions? As though that life changing event interrupted our lives, cutting apart sharp slices of our memories and experiences, like a book that has been divided at the spine into three parts.
As Suleika said in the TED Talk, ‘Once I stopped expecting myself to return to the person I had been pre-diagnosis, once I learned to accept that my body and its limitations, I actually did start to feel better. In the end, that’s the trick. To stop seeing our health as binary; between sick and healthy, well and unwell, whole and broken. To stop thinking that there is some beautiful, perfect state of wellness to strive for; and to quit living in a state of constant dissatisfaction until we reach it’. This is what it means to be recovering and healing after life-changing illness and injury, and to live a whole human experience – in sickness and in health.
To be well now is to learn to accept whatever body and mind I currently have.– Suleika Jaouad, Between Two Kingdoms
I love the writing in this book – the referrals to the kingdoms of the well and sick, travelling between the two while also literally travelling from the stationary setting of the hospital to a road trip around America. Suleika has an incredible gift for writing and I can’t wait to read more from her.
As I said earlier, you may need to work up to this book. Perfect for anyone who enjoyed Wild by Cheryl Strayed, To Shake The Sleeping Self by Jedidiah Jenkins, or Eat Pray Love by Elizabeth Gilbert. This book has a medical foundation, but is still the same in essence and reason for travelling – Who am I now?
As I write this post, Suleika is undergoing treatment as her leukaemia has returned. She created The Isolation Journals – a newsletter and a global movement of 100 Day projects. If you would like to follow her or subscribe to her newsletter, click on the following links: SuleikaJaouad.com, Facebook, Instagram, and the Isolation Journals Instagram.
I wish her good care and health, strength and courage, and a lot of light from the lighthouse.
Take good care, readers. I’ll keep the light on.
If you or someone you know is affected and needs support, please contact the following organisations:
Beyond Blue – Beyondblue.org.au
Lifeline – https://www.lifeline.org.au/
SANE Australia – Sane.org
Black Dog Institute – https://www.blackdoginstitute.org.au/
RUOK? – Ruok.org.au
Headspace – Headspace.org.au
Kids Helpline – https://kidshelpline.com.au/
MensLine Australia – https://mensline.org.au/
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