Embrace Change: In the Struggle with Chronic Illness, Love and Kindness Can Thrive

On our theme of embracing change, it’s time to share this poignant and helpful reflection from author and change consultant Susan Quinn.

Susan Quinn
28 March 2012

The May 2012 Lion’s Roar magazine includes a special section of eleven Buddhist teachers and writers on embracing change, so now’s a perfect time to share this poignant and helpful reflection from author and change consultant Susan Quinn.

As we collected our things to leave Dr. Solomon’s office, I said, “Doctor, I just have one more question. How can Jerry get rid of his cough?” The doctor looked at me pointedly and said, “He can’t. He needs to cough.” I stood looking at him, dazed and confused. “But the coughing is awful, for both of us,” I pleaded. Dr. Solomon continued to look at me sympathetically and said, “He has no choice.”

In that moment, I finally understood that our lives had changed. Jerry was suffering from bronchiectasis, an incurable lung disease. The cilia in his bronchial tubes were being destroyed, and those little hairs had the critical job of removing the mucous from his lungs and bronchial tubes. Without cilia, he had to cough, or the mucous would settle into his lungs, risking infection. Jerry had begun to share a regular litany with people: “They don’t know exactly what causes it, they can’t cure it, and I won’t die from it.”

My years of sitting practice didn’t prepare me for his coughing. So when he coughs and has to spit, I have watched my reactions; I’ve felt angry, anxious, nauseous, frightened and helpless. One moment I look away; the next moment I’m moved to smile and kiss him, making every effort to stay engaged and present.

Sometimes his coughing up his “fur ball” (as he calls it) interrupts his breakfast and he goes into the nearby bathroom, coughing loudly and spitting. After a few moments, he would begin to come back to the table, when he’d begin coughing again. After the third time of returning to the kitchen, wiping his eyes, his skin pink from the exertion, he said, “Maybe you should just bring my cereal into the bathroom,” and we both burst into laughter. We haven’t laughed about his morning cough in a long time.

Night time is sometimes the worst, especially if we are watching TV or a DVD. As petty as it sounds, I get so exasperated when I miss some dialogue. Some evenings I just want to scream AAAARRGGGGGHHH!!!!!!!!!!!! STOP IT! My anger frightened me at first. It was so overwhelming and intense. At the suggestion of my teacher, I allowed myself to fully experience my anger without venting it on Jerry. Over time my anger, paradoxically, became my companion. It reminded me that I was not angry at Jerry, but at the thunder of his cough and my helplessness in being able to make it go away.

When people express their sympathy for him, Jerry simply and courageously says, “It is what it is.” After five years of a clear diagnosis, though, he says these words less often. What it is is a very big deal. What it is has changed his life in countless ways. What it is is exhausting. What it is is ever-present. It’s not that his condition is always gloomy: his cough sounds a lot like his (very loud) sneezes, so when he coughs, people often say, “Bless you!” For a while he’d tell them that he’d coughed, not sneezed. Then I reminded him that he needed all the blessings he could get. We both laughed, and he agreed; now when someone blesses him when he coughs, he says, “thanks,” and I silently say, “thank you,” too.

In spite of the difficulties, we have our sweet moments. One of us will walk up behind the other, reach out, and hug and kiss. We also have sweet connection in the mornings: Jerry reads the main part of the paper, and as I complete my crossword, he’ll share news stories that we’re both following. In those moments we bond through our passion for world issues, national events and our favorite personalities. Sometimes we read in the evening, and I will read him an amusing paragraph from my book or he’ll read me one that has inspired him. When we find ourselves pulling away from each other and drawing inward, these sharing moments allow us to connect with each other, and they remind us that our life together can still be intimate and much more than his condition.

In this up-and-down economy and as a management consultant, Jerry has been working less often. He’s working only short-term jobs, which limits his travel and exposure to infection, as well as allows him to restore his energy more often. He’s a guy, though, who identifies strongly with his work, so as work tapers off and he faces impending retirement, who is he? He’s exploring what it means to function in this world in a way that is meaningful for him. He’s recently begun teaching online in the industry he loves. He enjoys teaching, and he will be able to do it from anywhere. And he can cough all he needs to cough.

After 37 years of marriage, I still love him with all my heart. Although I only rarely have a “pity party” for myself, I mostly suffer when I watch him wrestle with everything this condition has handed him. I remember years ago that he said, “You know, we can do all the right things—exercise, eat right, get plenty of rest—and then get hit by a truck.” In our case, we could say his truck was bronchiectasis. And I’m with him, lovingly and completely, in the best way I can, for the whole ride.

Susan Quinn

Susan Quinn is a semi-retired independent consultant in the areas of communication, conflict and change. She wrote an essay included in the book, Women, Spirituality and Transformative Leadership: Where Grace Meets Power. In addition, she leads a meditation group in Poinciana, FL, and trains with Lawson Sachter Sensei at Windhorse Zen Community in North Carolina.