Navigating the Harder Times
I have never experienced the pain or foreboding of cancer. I pray I never will. However, I have been elbow deep in Suleika Jaouad's cancer journey, Between Two Kingdoms, and her words transfix me. It is as if they are my own.
Suleika is about one year older than me, which again creates a vortex within her written journey. It parallels so much of mine.
She grew up working hard and staying steadfast in her studies and rehearsals - she is a musician. I danced growing up and also had aspirations of getting out of my hometown. There was too much of the world to explore just to stay confined to one zip code.
We both took off, she to Paris and me to cruise ships. And, while we were each basking in our new and blooming lives, love struck us. Her man flew across the Atlantic to start a life with her, and mine was navigating the ocean with me.
Naturally, when at your peak of happiness, something must bring it tumbling down. She had been dealing with strange health woes that kept mysteriously attacking her body in different ways, and my eczema kept getting worse and worse. We both had no idea why our bodies were behaving so poorly. We, in turn, had no idea what ravenous storm would cloud our very existence.
Severe eczema and topical steroid withdrawal (TSW) can feel like a death sentence. However, our mortality is not in question (unless a severe infection or eczema herpeticum is contracted). Cancer is always going to trump our conditions in that regard. But the everyday battles during the worst of our disease put us in a dark place.
When she learned of her rare cancer, it flipped her life upside down like a spatula to a hot pancake. Nothing can truly prepare you for that diagnosis. Same for TSW and severe eczema. You know you aren't alone, but it feels like a prison sentence, our souls tossed into solitary confinement with no predicted release date.
A rollercoaster of emotions
Jaouad endured years of bad news, a rollercoaster of emotions and rugs constantly ripped from underneath her. The conflagration of pills, side effects, and mental anguish took such a toll. I remember feeling the same at the beginning of TSW. No answers, no helpful medical professionals who would even entertain a TSW diagnosis. My husband and I were left to lean on one another, as well as a small group of men and women who were in my same boat, helming the high and elusive seas. She had her boyfriend, Will, who she deemed "the scaffolding" in her life.
In the end, nevertheless, those who care for us most are the ones who take on the brunt of the hail and gale force winds swirling around us.
We always have a profusion of hope at the beginning of a war. Our partners, too. We feel like Leonardo DiCaprio atop the Titanic, shouting, "I'm the king of my condition!" But as time rolls on, that verve begins to blister and pop. You grow more impatient, impertinence creeping into every conversation because the frustration of not getting better, or worse, getting better and then getting worse again, is driving you mad. It is a cycle with no destination. Platters of pain are being delivered on a carousel.
You're strapped to the carousel. Your partner is not.
The last goodbye
For those who know what it is like to lose a partner during TSW or horrible bouts of eczema, I see you. Jaouad sees you. When her boyfriend finally left, she felt the scaffolding holding her up for so long collapse into ruin. That's how it felt for me, too. I believe that is how it feels for all of us. It's hard to blame volunteers in our life's destruction for leaving - it's gruesome to witness and take part in. I cried during the chapter where she desperately clung to their love.
But I also learned, and am still learning, that we are whole without our partners, even in our lowest, most foul times of life. Jaouad is teaching me this all over again.
Who we are
We may be suffering more than many others, and the toll that suffering takes may come with more loss than others may ever experience, but I believe it also comes with a gift. We see the world through a different lens with an opportunity to breathe in sweeter smells, see brighter colors. Joy is more abundant and more noticeable.
So, even when things are falling apart, and if we lose partners or friends and family along the way, we are still complete. We still have the capacity to start anew. We are the master of our ship. The winds may be wild, but keep steering towards the shoreline.
I hear it is not the destination but the journey that counts.
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