Looking for the Off-Ramp

By Scott Robinson

What’s this that steals, that steals upon my frame? Is it death? is it death?
That soon will quench, will quench this mortal flame. Is it death? is it death?

If this be death, I soon shall be From every pain and sorrow free, I shall the King of glory see.
All is well! All is well!

(Anonymous; from The Southern Harmony)

I am a big fan of Shapenote Singing—a type of rough-and-ready American hymnody, invented in the late 18th century, and written in a unique notation style that allowed untutored people to learn to read music very quickly.

A lot of the lyrics seem, like the one quoted above, needlessly grim—even morbid—to modern ears. And because people rarely talk like that now, I assumed that not only the language, but the ideas it expressed were dated. I considered them quaint “hymnal piety”—a small price to pay for all the things I loved about the songs.

Now, I’m not so sure.

Living with an incurable, degenerative disease has given me insight into why people might look forward to the end of life. I used to assume that 18th and 19th century literature expressed this eagerness for death so often because people’s lives were hard back then, and their physical suffering great. I assumed it was an artifact of the past. And the surprising thing is, as a hospital and hospice chaplain, I had sat at the bedsides of many people who were ready to die. You’d think I’d have learned from those experiences—that I’d have noticed that, though the language was less florid than what I encountered in novels and hymnals, the sentiments were the same. But I’m slow.

During my chaplaincy training, I met an elderly, seriously ill woman and her two adult sons, one of whom strode back and forth incessantly, full of restless energy and spitting defiance at his mother’s illness.

“We’re gonna beat this thing,” he promised over and over; “We’re going to get you out of here.”
I listened as the patient told me quietly of all the people in her life who were gone; her husband was gone, her brothers and sisters, most of her friends–everyone was gone, and she herself was sick and depleted. Her eyes filled with tears as she said softly, “I just want it to end.”

It took my doctors years to correctly diagnose my Parkinson’s, and at one point they had diagnosed me with a much more vicious disease, from which I could expect a horrible death within three to five years. I remember being glad that it wasn’t something potentially curable, like cancer, that I’d be expected to fight—to use up all the energy trying, against the odds, to stay alive, that I could have put to better use preparing for a good death, and living well until I died.

Farewell, my friends, adieu, adieu,
I can no longer stay with you,
My glittering crown appears in view, All is well! All is well!

Of course, not everyone shares those priorities. In his 1988 interview with Barbara Walters, Patrick Swayze vowed to do everything he could to beat his stage 4 pancreatic cancer. But even he recognized that a reckoning had to come sooner or later.

“The issue is,” he said, “when do you get tired? When do you decide the fight isn’t matching up to your quality of life?” I was happy to have been spared that decision.

But the sicker I get, the more I think about how long I want to be around. As a hospice chaplain, I would call a patient’s next of kin after a visit, to let them know I had seen their loved-one, and how it had gone. And over and over—especially when the patient’s primary diagnosis was dementia, which can take an interminably long time to end a life, while making it harder and harder for family to care for the patient–I heard patients’ children, tentatively and guiltily, confess to being anxious for the closure that their loved-one’s death would bring.

“I just feel like I been waitin’ for the other shoe to drop for three years, now” one demented woman’s son told me. And as I did with many others in the same predicament, I assured him that his feelings were normal, understandable, and nothing to be ashamed of. And I don’t want to put my family through that agonizing, slow process.

Parkinson’s Disease is not a hospice-eligible diagnosis, so in order to enter hospice care, I would need to be dying of something else associated with it–like aspiration pneumonia, that often strikes as patients find it harder and harder to swallow food. Once I had that, I would go fairly quickly. (There’s a reason that doctors and nurses call pneumonia “the old man’s friend.”)

But there are so many other questions. By exercising regularly and keeping as fit as I can, I am slowing the progress of the disease, and living better in the meantime than I would otherwise. But am I dooming my family to a long, drawn-out deathwatch?

A friend of mine cared for his strong-as-an-ox father for eighteen years, winning two-man rowing regattas on the one hand, and making innumerable hospital trips on the other.

Once, when my children were running down the hallway in his house, he sprang up from his chair in panic, because apparently the sound of small children running is very similar to the sound of an old person falling (or, more precisely, trying not to fall). I am nowhere near as hardy as that old man, but I still fear traumatizing my wife by lingering on long after I have become a “fall risk.”

Of course, I could just give up now and still live for years, only weaker rather than stronger, and more dependent rather than less, and I wouldn’t want my family to have to cope with that, either.

At the moment, all I have to deal with is dizziness, weakness, fatigue, sleep disturbance and occasional dyskinesias and bradykinesia (very slow movement), plus increasing trouble swallowing. I’m not in pain, and though there is the occasional anxiety attack, I am generally in pretty good spirits. (Not that anyone ever gets my joke about teaching them the Parkinson’s handshake.)

But I can feel the disease getting stronger, and it takes more and more medication to make it through the day. Despite my exercising, I am getting weaker, and even a maxed-out Botox regimen is not stopping my neck and shoulders continuing to pull my head down into a hunch. As the days pass, I am finding it easier and easier to imagine myself wishing it would end

O! cease then, fond nature, O! cease from thy strife,
And let me now languish, and die into life;
Bless’d powers receive me, I mount on your wing,
O! grave, where’s thy vict’ry, O! death where’s thy sting?*

* Sarah Anderson Jones, 1801. Jones evidently “borrowed” and adapted the first two lines of this verse from Alexander Pope’s “The Dying Christian to His Soul”: Cease, fond Nature, cease thy strife, / And let me languish into life. There is a lot of this sort of thing in shapenote lyrics.

An ordained Interfaith Minister, Scott Robinson taught music for ten years at Eastern University outside Philadelphia. Since leaving teaching, though his primary ministry has been hospice chaplaincy. He is active in the Third Order of St. Francis, a religious order in the Episcopal Church. His book The Dark Hills is available from Sacred Feet Publishing. Scott’s group Mandala performs his original interfaith kirtan, a type of audience-participatory call-response devotional music. He lives in Philadelphia. Learn more at opentothedivine.com.