This past weekend I read Suleika Jaouad’s book Between Two Kingdoms: A Memoir of a Life Interrupted. It follows Jaouad on her four-year journey through leukemia and a bone marrow transfusion in her early 20s. As part of her illness journey, she wrote a column for The New York Times about being young and having cancer, and how clinicians could have dealt with her illness in a way that better addressed her demographic. For example, she found out at the last minute that the chemotherapy would likely affect her fertility, and had to decide quickly if she should harvest her eggs and freeze them for later.
Jaouad’s descriptions of the pain and exhaustion of her illness are frighteningly clear – you feel like you’re with her, experiencing her symptoms, like the sloughing off of her esophageal lining that made it difficult for her to swallow without pain.
But what I was most interested in was how Jaouad coped with post-leukemia life. Once she had left behind the intense part of the treatment, including the relapses and “maintenance” chemotherapy, she had to learn how to live as a “post-cancer” person. She writes:
“My immune system keeps misfiring. I still push my body too hard…I am forced to accept my limitations and slowness – a lesson I must learn again and again. I get discouraged. I stop writing these pages. I rest, recover, and begin again.”
This quote resonated most deeply with me. I feel the same way with my illness, though I would change “immune system” to “brain.” My brain keeps misfiring. I am forced to accept my limitations and slowness, and yes, it is a lesson I have to relearn. I also get discouraged and stop writing. After a rest, I have to figure out how to begin again. Sometimes it’s hard to begin again. To always be beginning again.
I feel like I’ve had eight years to figure this out, having been diagnosed with bipolar back in 2013. Why can’t I just accept my limitations instead of constantly fighting against them? Or is that just how it goes – we push and push until we find the breaking point, then we have to back off, recover, and then start pushing again?
Maybe it goes back to the idea of being conditioned to be productive. I need to remember that productivity isn’t the only marker of success. Success can also look like managing your mental health so you don’t have too many lows or highs. Success can look like completing my counselling homework in the weeks between sessions. Success can look like being able to do small things like make lunch or cook dinner.
Maybe one day this lesson will sink in. For now, I’m still beginning, resting, then beginning again.
Note the featured image for this post is one I took on a trip to Newfoundland back in 2012-ish.