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The Dark Invitation

I met a tiny frail nun once, in Australia, while walking along a harbor, and we got to talking. She said no one defeats cancer; cancer is a dance partner you don’t want and don’t like, but you have to dance, and either you die or the cancer fades back into the darkness at the other end of the ballroom. Brian Doyle

Sometimes the universe sends you a dark invitation to a place you never expected to visit and wouldn’t have chosen as a destination if you’d had any control over the matter. A place where the light is dim, the walls too close, the air too thin and the way out unknown.

Suddenly, your old life seems far away, inaccessible, a distant memory. All that seemed easy, ordinary, predictable, boring even, is gone in an instant. You plead and bargain to go back, promising that this time around you will pay attention and appreciate all that you had. But it’s too late. That life is gone.

This new place is like a war zone with threats everywhere … medical missteps, a careless nurse, a long list of side effects and risks. So many risks. Seizures. Brain bleeds. Infection. Cognitive impairment. Deafness. Neuropathy. Death.

You cling to your husband, feeling lost, isolated, alone. You don’t speak the language, and even if you did, you wouldn’t know what questions to ask.

Together, you work to protect your nine-year-old daughter, wanting to be together as a family in the ICU, hoping at the same time to insulate her from your terror and the way the diagnosis and treatment will upend her life.

Slowly the shock subsides. A friend sends a set of instructions for this strange new world – what to ask, how to find the right guide, what supplies you’ll need. She gives you permission to jettison the hospital assigned oncologist. A horrible woman, uncaring and arrogant, interested only in explaining to you and your husband in painstaking detail about the horror awaiting your son if left in her hands .. “deaf, sterile and severely cognitively impaired. Living at home for the rest of his life, unable to graduate from high school. College out of the question …” Together, you refuse to accept that her grim future is the only possible outcome for your sweet boy and agree to find another doctor immediately.

Another friend organizes meals. She is focused, organized and fiercely loving. She makes sure the eager volunteers pay attention to what your family needs right now. Delicious, organic, nourishing meals, left on the porch in time for dinner. No chemicals, no empty calories, nothing with bananas as the radiation has made your son bananaphobic and no ringing the doorbell in an attempt to engage in a conversation for which you have no energy.

The universe offers opportunity after opportunity. Travel, adventures and experiences you might have put off or said ‘no’ to in your prior life. But now you recognize their importance and you say ‘Yes!’ instead. Eating whale meat in Iceland, ziplining in Puerto Rico, hot air ballooning in Napa, following the Tour de France, climbing the leaning tower of Pisa. You understand that life can change in an instant, taking the light and hope with it.

Your boy finds the wisdom to listen to his illness. To dance with it. To go where it takes him. To learn what it has to teach him. To lean into the experience and appreciate every beautiful moment. He loves and trusts his doctors, his favorite nurses and especially Shannon, his nurse practitioner. They see his courage, his strength, his wisdom, his quirky sense of humor. When he asks each one to say what celebrity they think they most resemble, they consider the question seriously, offering their opinion, eager to hear his thoughts in return. They treat him like the adult he has become because of the cancer and the way it has interrupted his life. They care for him, fight for him and love him as if he were one of their own. It is an unimaginable gift, a blessing neither he nor you expected in this black, muddy place.

During the eight years he lives with brain cancer, you watch new qualities emerge in him as he finds his voice and his passion. He learns to suffer no fools and brook no bullshit, and he inspires you to do the same. He stands up for himself and what he believes in, even if it means that some of his friends walk away. He finds the light and holds it high for his family and those who love him to follow. He takes the lead even on the darkest days, sure that there’s a way to navigate the anxiety, unease and despair that rise up and threaten to swallow everyone else. When you ask how he manages to contain his anxiety before quarterly MRI scans, he tell you that he doesn’t worry about them in advance because he can’t control what’s on them. Because you and Dr. Nicholson are always hopeful, he is, too, trusting you to find the best next new treatment to try, one that will beat back his disease and allow him to keep living his life.

In the end, his willingness to open his heart to this new world is what sustains you after he’s gone. His vision teaches you to see that your life is your life. That all any of us have is right here, right now.  You  may not be able to avoid the dance but you shouldn’t let fear or sadness close your eyes to the beauty and the magic of even the darkest invitation.

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