You are currently browsing the tag archive for the ‘terminal illness’ tag.

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.

It was February 1, 2022, an overcast day, twenty-eight months since my sign-up to receive hospice care for my diagnosis of Interstitial Lung Disease with Rheumatoid Arthritis.

The doorbell rang. It was the hospice nurse practitioner to evaluate my continue participation that occurred every six weeks, given the Medicare protocol for my disease and treatment.

During our last evaluation, my insides had jellied when she said, “Liz, you continue doing so well, perhaps too well. Not much decline since our last being here.” She looked away, then added putting away her stethoscope, “We’ll certify you for another benefit period, then re-evaluate next month. Now, you’re not to worry. We’ll work this out.”

But I did. I still remembered the compassionate response of the ER doctor that Halloween morning, 2019, “You’ve come to the right place, Liz. From here on out, palliative care will serve your medical needs. No more going to hospitals for tests. No more doctors’ offices.”

Only after the nurse left did I learn the difference between hospice and palliative care: Patients not ill enough to qualify for hospice and too ill to benefit from home care services. Perhaps that’s where I belonged.

Yet, hospice did pick me up.

“I said this would work out,” the nurse practitioner said, her eyes smiling behind her mask. “We’re going to hold on to you, after all. That new medication for your breathing warrants our continued surveillance.”

I smiled, another experience of God doing for me what I could not do for myself.

At 6:35 A.M., I awoke with this disconcerting dream:

After a long absence, I discover that my doctor has moved his office to a high-tech clinic in the city. As I follow a nurse to an examining room, I see a former friend sitting on the floor of another examining room, looking disgruntled, her shapely legs stretched before her upon the hardwood floor. My heart sank. I hoped she had not seen me.

This glimpse into my psyche reveals more of my shadow. My need to see my doctor suggests regaining control of my health rather than allow the continuing diminishment of my body under hospice supervision. I’m determined to fix myself—And only the best will do: a high-tech clinic in the city.

The former friend mirrors my stinginess of heart, resentments, whining and demanding and sulking behaviors, deeply entrenched in my psyche, still rooted within the recesses of my shadow, despite decades of Twelve Step work.

And my former way of handling conflict— I hoped she had not seen me. —was to flee the scene or ignore what had occurred. Such pretense had thwarted development.

The dream reminds me of the critical practice of emotional honesty, with God, myself, and others. I still have a terminal illness.

Available on Amazon

%d bloggers like this: