“Hi Liz, may I come in?” It was Carolyn, the doctor from hospice, gowned, gloved, and masked in yellow, standing in the open doorway. “I wanted to give you a hug before you left.” Her voice was soft, caring, and sweet like the honeycomb of the Psalms. My heart stirred, remembering her responses to my questions, yesterday, coached in words I could understand, words that I set to memory last night atop my bed.

“Yes, by all means do.” I pushed myself from the edge of the bed and stood, albeit a bit wobbly, and fell into her expansive arms. Instantly, her energy tripped my psyche into gladness, more tingly than freshets ambling down limestone rocks. Indeed, hospice was the new direction and I would take it.

“And you do understand about the little blue pill you’re going home with—Dexamethasone—how it will help your breathing? That you take with breakfast starting tomorrow? she asked.

I nodded. Yes, everything was clear. Only the supportive services of hospice were yet to be experienced.

Again seated on the side of my bed, dressed, my bag packed at my feet, I looked out the window, the sun glinting upon the iced roof shingles of St. Nicholas Greek Orthodox Church.

A new way was opening before me. I only had to follow, alone, with my God.

 

 

My decision to forego further medical treatment for my terminal lung disease came unexpectedly easy; it flowed organically from my willingness to change.

“Hi, this is Liz, living in St. Louis with chronic illness. Thanks for the meeting. Hi everyone!”

For over two years, I had been calling into daily phone meetings of Chronic Pain Anonymous. What I heard amazed me. Fellow sufferers, from around the world, applied the principles of the 12 Steps of Alcoholics Anonymous to the negative baggage of their pain and illness. They still had a full life. Crippling physical disorders did not define them. At the heart of their recovery was a new God of their understanding to whom they surrendered, one day at a time; at times, one moment at a time.

Tired of my glum world, I would find my own God. As long months passed, I continued listening, studying our literature with CPA buddies, and praying for discernment. Occasionally, “charged words” heard during meetings stirred my heart. I knew I was on the right track.

And then it happened in that emergency room last month. Like the morning sunrise, the change emerged, blindingly evident, upon my former wasteland. My enthusiasm knew no bounds.

For those trapped within organs that barely function, with medication, for those with fibromyalgia, chronic fatigue syndrome, nerve pain, migraines, wasting diseases of any kind, there is a community waiting for you: Chronic Pain Anonymous. Information about this spiritual fellowship can be found on CPA.org. Join us and come alive!

 

Brown Pelican in flight at sunrise on Captiva Island, Florida

“I really didn’t wanna come here! But I had to have a conversation about my chronic lung infections—with you guys! I’m sick of them!” The ER doc dragged a stool next to the gurney that I was sitting on, the spread draped across my lap, my sandals dangling from my feet. From a deep place in my psyche, I heard words spewing forth like pent-up mountain streams, clean from ego-driven demands.

He listened, with full heart, as did others during the next forty-eight hours following my admission to the hospital. I was on a fact-finding mission. More questions surfaced in an orderly direction, totally beyond my imagining. I was breathless as the new direction of palliative care for my interstitial lung disease began to emerge. It was like listening to a composer experiment with harmonious chords: each confluence of notes warmed my heart.

Clearly, I did not want more infusion therapy for my recurring lung infections, my experience of the past thirteen months. Six treatments had already diminished my functioning, and I was losing ground, fast.

Indeed, I would follow this hospice path. There was nothing to be decided. Never again would I be hospitalized or suffer long hours tethered to an IV infusion pump. Never again endure needles, tests, the heart monitor, vital signs around the clock, restorative therapies, food empty of nutrition, demented roommates, and the noise of television—and this last admission, construction noises on the street.

That night, all treatment stopped. I felt free. I was going home.

 

 

 

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