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Days of slikkery rain sheened the hand-sized leaves of the London Plane tree outside my kitchen window, even more haunting in its post-dusk grayness. Its somber tone spoke to gloom, to the lethargy of inner canyons of depression—my hangout within the consciousness of daylight.

My terminal illness weights my spirit, confines my feet in leaden boots, and moans for release, but there is none, save sleep, with “the cocktail.” But even there, troubling dreams abound that seem unrelated to any experience that I’ve had or read about.

Such interludes characterize the dark night of the soul when the Sacred feels painfully absent, when abandonment to isolated ash-pits tastes grainy, the “dessert” of fruitlessness.

It only occurred to me yesterday to begin writing of this experience: in faith, know that the Sacred is never closer to the sufferer confined to inexplicable darkness. Purification is what the mystics call it, and no one is free from it.

Release from such psychic-scraping does occur, its duration, though, unknown. Only through endurance does spiritual growth occur, and that’s the point of experiencing plant earth.

With the Psalmist, I often cry, “Create, O God, a clean heart within me.” On my own, this is impossible—so often referenced in this blog.

“It’s not surprising that this has happened,” said the nurse practitioner from hospice, come to evaluate my continued participation according to Medicare guidelines. Twice last year, I was almost discharged for not being sick enough.

From behind her mask, her dove-gray eyes filled with compassion as she responded to questions of my physical decline the past two weeks: sunken brown eyes, skeletal frame, snaking veins crisscrossing my abdomen, thighs, and arms, and protruding ribs like a xylophone. In my bathroom mirror stood the image of a forlorn Nazi prisoner milling around the ice-packed grounds of Auschwitz. I paused and looked again, pinched the flabby skin of my bruised forearm. This was real.

“Your symptoms give specificity to your decline,” she continued, “especially the weight loss, despite the amount of food which you eat. Your advanced years, your weakened metabolism, and your diseased lungs also stress your breathing and wear you down,” she said while folding her notebook and dropping it in her pouch. “You now fit our hospice template: six months or less to live.”  

I heard the words, “six months or less to live,” that defined the limits of my terminal illness, but still had to open my psyche to this reality and to surrender more deeply to the implications of my transition. I’d been in a holding pattern for over two years, blogged my experiences, worked the Twelve Steps of Chronic Pain Anonymous, and even participated in ZOOM meetings for the terminally ill.  Now, there was palpable change in my body that required response, providing that my mental faculties hold out.

No more denial. No more rationalization. No more idealization.

More than ever, each twenty-four hours is a gift from Creator God to be cherished.

Routines are like pages in a book whose material inspires, entertains, and instructs. Skilled in the craft and art of bookmaking, authors nuance the next right word to carry their project forward, until the work is completed.

I liken the routine I follow, daily, to this process. At first it was awkward to string the components together, not knowing what was wrong who me. For several years, what I call picky eaters or symptoms, have lodged in my lungs gnawing on my limited energy and enveloping me in more symptoms, especially inertia and shortness of breath.

The eventual diagnosis, ILD with RA, set the necessary pacing and parameters for living in this aging body. I learned timely pauses interspersed among activities of daily living. I learned to accept help with personal care and meal preparation, with its clean-up. I learned to rest/sleep atop my bed when wipe-out reduced me to inactivity. Such patterned each day within the doable routine of my housebound status.

However, the progression of my terminal illness has mandated major adjustments: use of continuous oxygen, the use of a speech amplifier to increase the volume of my voice, the dependence upon my walker, longer night-sleep maintained by low doses of liquid morphine and Lorazapan, and recently, time-released doses of morphine, 24/7, to help me breathe—all within my flexible routine.  

Like authors at the end of their day, I’m glad to let go of my routine, until the following morning. It’s working, with God’s help.

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