After cancer, my “normal” life is long forgotten, but how can I get back to life as a person who is well?
In Suleika Jaouad’s gripping bestselling memoir “Between Two Kingdoms: A Memoir of a Life Interrupted” she quotes Susan Sontag from “Illness as a Metaphor.”
“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”
At 22, Jaouad was diagnosed with acute myeloid leukemia (AML) which can have a poor prognosis. After an over four-year battle including a harrowing bone marrow transplant, Jaouad wondered if she would ever rejoin the kingdom of the well. With her unending treatments finally behind her, she wrote, “I find myself 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 too found myself standing at this same threshold. Normal was long forgotten. I wondered if I had a tomorrow.
Finding out I had pancreatic cancer, where only five people in 100 who get this sad news see five years, caused me to ask a lot of questions about the life I had been leading and its disconnect from the life I wanted to live. How many hours per week did I need to work? How much money did I need to make? How much professional prestige was enough? These were all good questions. All with sketchy answers.
Many mistake completing our treatments as a destination, as I did, but in fact, it is only the first step in the arduous journey back to the kingdom of the well. While we were out of town, things changed. Our remaining friends are scared to ask us, “How’s it going?” or “How are you feeling?” fearing an answer they don’t want to hear. Our mortality reminds them of theirs.
Not only have I lost friends to cancer, but I’ve also lost friends due to my cancer. Honestly, I can’t blame them. I remember pre-cancer how hard it was for me to talk with someone with cancer fearing not only would I say something stupid but also, I would find out something I didn’t want to know.
After cancer, my calendar is pockmarked with follow-ups not only with my six-month follow-ups but also with other specialists who treat the many side effects of my cancer. I see a gastroenterologist to monitor my digestive health, and an endocrinologist to monitor both my diabetes thanks to losing a third of my pancreas, and my osteoporosis thanks to my abdominal radiation.
Like most survivors, every new twinge or bruise raises concerns about my cancer’s return. Every health glitch morphs into a medical emergency. Before cancer, I shrugged off these things. Now alarm bells blare drowning out life. This has become my new normal whether I like it or not. I hear similar stories from other survivors. We are happy to have survived, but we could do without the endless bridge outages and washed-out roads blocking us from rejoining the kingdom of the well.
There is a point for many of us where we feel we have been banished from the kingdom of the well for life. Our treatments seem to have no end. We wonder if they are our end. But once they are over, we begin our long journey back to the kingdom of the well.
If you want to know more about Jaouad’s journey, without reservation I recommend reading “Between Two Kingdoms.” Her TED talk “What almost dying taught me about living”has been viewed almost five million times. If you haven’t yet watched it, I would encourage you to. After all, we are all in this boat together.
Sadly, at this writing, Jaouad has had a relapse, every cancer survivor's worst fear. Happily, she is doing well having survived a second bone marrow transplant.
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