“As we live longer and longer, the vast majority of us will travel back and forth across these realms, spending much of our lives somewhere in between. These are the terms of our existence.”Suleika Jaouad, “Between Two Kingdoms”
Jaouad is speaking of the kingdoms of the sick and the well. We all travel them both. Her new book about them is stunning.
I’ve been gone from here for a while – since November 5th. I was in the kingdom of the sick.
I can’t believe that it’s been that long. I was six weeks through chemotherapy treatment for non-Hodgkin lymphoma when I last wrote here. At that point, I was chuckling about the chin hairs that had dropped out of contention for “most annoying postmenopausal inconvenience.” Recently, however, I had to search extensively to find those pluckers that I must now manage again. Instead of cheering the sign that my body is getting back to “normal,” which is to say, pre-cancer, I am more often feeling whiny about sitting with that magnifying mirror again to make myself presentable. Never mind that my mask hides them from public view. I have my pride.
So much has happened. I could write my own book if I wished, as Suleika Jaouad has done so powerfully. She was 23 when diagnosed with leukemia. I was 79 when diagnosed with lymphoma. Our stories are very different, and yet the same in many recognizable ways. They both end in the present, with recovery and deep questions about how we move forward now that the physical enemy – cancer – has been overcome.
During the months of treatment, I had accepted the very real possibility that I might have 2-3 more years of life, given the aggressive nature of my cancer and a 50-50 chance of surviving it. I had stood toe to toe with my mortality and given it permission to act – now or later – it didn’t matter which. I was that sick most of the time. Now my lifespan is again an unknown. That matters.
I had faced my profound vulnerability when there was no other choice, no other place to turn, no possibility of keeping my cherished independence when I had to have help to keep me going. It was a deeply humbling experience which did not become any easier along the way, but which forced me to become, perhaps, a bit more honestly human. Maybe. Stay tuned; I could easily backslide.
When cancer became a reality, I had wanted so much to “do it well.” To be brave. Perfect, even! To “fight” it, the way everyone expects a cancer patient to fight. To draw on every spiritual well that I could. To emerge triumphant.
But I didn’t do any of that for very long. Instead, I lived every moment of the 21 weeks with the ground shifting beneath me. Nothing was predictable. There was no constant except change. Six four-day hospital stays – one for each of the six cycles of chemo – showed up and I was in a foreign land of lab results, multiple i.v.’s, blood transfusions, fevers, profound weakness and surprise medications.
Living alone didn’t help. A pandemic didn’t help. Winter and two blizzards didn’t help. Even with the support of friends and family, I was on my own to do the actual living of it.
Then in mid-January, treatment ended and recovery began.
“Complete remission,” the pathologist’s report read. I was stunned. So was my doctor! But there it was, in black and white. I began the “recovery” phase in mid-January, but soon discovered that this time was not to be an automatic return to “how things were.” That was a considerable disappointment. What I wanted most – to be well – was not to be easily gained. Too much had happened. I thought that going forward and “doing that well” would take me back. Back to the familiar. I was wrong. It was not to be a slam-dunk.
I have been impatient with my post-cancer life. I walked through that door of recovery but did not return to my old, familiar pre-cancer world. I had longed for that old world. I was deliciously happy back then, and I knew my purpose in life. I was centered and invested in deepening my spiritual life. I loved writing my blog! It was all so familiar and fulfilling!
But the recovery game was a brand new one, and I didn’t know how to begin playing it. Depression hovered close by early, wanting to take hold. I had thought there would be joy at surviving. Physical weakness and fatigue still set strict limits. Days were still so interminably long when I didn’t have the physical or mental energy to do what I wanted or needed to do.
Joy and hopefulness were just occasional glimpses. I felt stuck. The big question was, “Who am I now? I don’t recognize myself.”
Then I read “Between Two Kingdoms” recently. About sickness and recovery. The sick part, I’d done. Recovery was still a mystery. But I breathed a sigh of relief. It gave me a new perspective.
[Recovery] is about accepting that you must forsake a familiar self forever, in favor of one that is being newly born.Suleika Jaouad
Forever. I will never return completely to “the former me.” Cancer – indeed, any prolonged suffering – changes us. That’s okay. That is one of “the terms of our existence.”
Thankfully, the new “me” is showing up. I’m giving her space. I’m taking up life again on its terms and I’m more alert to the ways in which I am being “newly born.” It’s slow, but it’s already worth it. It’s a fresh fascination that keeps me alert.
I am visibly reminded that my body is changing once again and that it may or may not return to its former glory (whatever that means at nearly 80…). It is always a work in progress. (Hasn’t it always been???) It is getting stronger very slowly, but it is improving. And I am learning to thank this aged frame for all of its heroic work in these past months. And for its continuing bravery.
My spirit is improving sooner than my body, but they’re still good friends.
I am rediscovering an eagerness for writing again and finding new graces to ponder.
And nearly every day, I am reminding myself of Mary Oliver’s iconic words:
“Tell me, what is it you plan to do with your one wild and precious life?”
The answers come slowly, but I’m working on it.
And it is so good to be back! I don’t know if I’ll manage a weekly blog yet, but my heart is in it, and my energy is following.
And I’m okay with that.
(If you would like to briefly acquaint yourself with Suleika Jaouad, you can find her TED Talk – “What almost dying taught me about living” on YouTube. You may find you’d like to know more.)