Agency
Allison Whittenberg
Losing Religion
I’m through
with sunsets!
I’m through
with sex!
I’m through
with life!
(he confessed
in his still-potent
voice while in his
starving blue gown
on the sixth floor
of Mercy Fitzgerald
daughter propped him
walking his cemented
joints unsure if
his articulations
where dizzy delirium
or final clarity
mother had been gone,
going on a decade
daughter couldn’t
recall him being in
circulation what congress
was he referring to
always going into
the hospital for the last time
hitting the rafters
with histrionics about
His Peter and the
gold of sunsets
and titillating
existentialism.)
This poem takes into account the utter nuttiness and bottomless despair that infected my father during his last days—during the end, he was having hallucinations, and he was liable to say anything (and he did). I listened to everything, absorbing it. I tried to understand, but at that time I didn’t. Being in a hospital is disorienting, being in pain is maddening, and realizing you have a chronic illness is soul-crushing. And so, this poem I’d written is also in response to the wear and tear that caring for my father toward his last years. He was diagnosed with Parkinson’s Disease; I saw the devastation it took on him up close. I watched him crumble from a fit, energetic, independent man to a shattered, weak, dependent patient. It started so small, with a slight tremor in his hands, and ended huge, with him being intubated in intensive care. Most people live on average sixteen years after first seeing Parkinson’s symptoms. My father died ten years after the onset of his movement problems. Most receive their Parkinson’s diagnosis with their spouse or family member sitting next to them. I was that family member. I heard it all and researched it all and asked all the questions and contacted the foundation. When I got my diagnosis, I was alone. I had no partner in my life, so once again, I had to investigate a weird disorder. I did all the schooling about this disease I had by myself. There wasn’t anyone there; there was no plan to move forward together. I had to make whatever logistics I could on my own. I know that Parkinson’s is not scleroderma. Scleroderma is not a brain disorder.
It doesn’t innately lead to memory or concentration difficulties, as Parkinson’s did.
However, scleroderma, like all chronic illnesses, leads to constant stress. This could, and, in my case, did, lead to depression and hopelessness, which increasingly made ideas for going forward muddled.
I had the same racing thoughts: I was going to die, I just knew it/ I was going to die, I just knew it./ I was going to die, I just knew it.
Then my mind started to gallop: Iwasgoingtodie.Ijustknewit. Iwasgoingtodie.Ijustknewit.Iwasgoingtodie.Ijustknewit.
On one hand, there was a rational core to all this, as my father did; I had an encroaching disease. I was breaking down, not with shakes but with the freezing that my hands were in.
Around this time, I avoided making thumbs-up or okay signs for fear that my fingers would stay like that and I would have to shake out the paralysis. I had fallen a few times during this time (more than a few; I went smack down while walking down Philadelphia’s streets). Increasingly, I looked at a flight of stairs like it was Mount Everest. As I declined, I had no idea what to do. As stated, I had a habit of sleeping in the nude, so I was never big on self-planning. (If an emergency struck during the night, what would I do but waste crucial moments clumsily fishing on my bathrobe?)
So round and round, I went. One merry-go-round I hopped on was a quest for healing. I sought a cure.
“There is no cure,” the rheumatologist told me, point-blank as a lead ball.
“There’s holistic stuff all over the internet,” I said, as I had researched many avenues.
“Don’t believe any of them. They will not cure your scleroderma. They will just make you go to the bathroom,” she told me. And then, as if to read my mind, she said, “And stay away from echinacea.”
“Why do you say that?” I asked, not letting on that I had had my heart set on that herb.
Several sites claimed its pain relief and its ability to reduce inflammation.
“Your immune system is haywire, and echinacea will make it worse.”
“How about basil?”
She shook her head.
“How about rosemary?”
“No, sorry.”
“How about cinnamon? “
“I am sorry, no.”
“How about ginger? Come on, everyone raves about ginger as an anti-inflammatory. I have been rubbing ginger root over my chest and neck trying to calm down my skin so my color would return.”
“And it hasn’t, right?”
“Well, not yet. I’ve only been using it morning and night for eight weeks straight. I’ve only gone through 30 stacks—Rome wasn’t built in a day, you know.”
“Miss Whittenberg, these “cures” aren’t cures. All you’re going to do is waste your time and money.”
I nodded. This doctor was right. The examination I did into herbs and spices, powders, and potions was ad hoc at best. Though I read every pamphlet, brochure, booklet, and book on this illness, I didn’t have a fundamental understanding of the human body as a system, and how one organ triggers another. I didn’t “get “ the framework, and “getting” all the possible connections was crucial. I wanted to do something, but I was forgetting the Hippocratic oath—first, do no harm. An amateur pharmacist is, after all, in the end, a drug dealer. Who was I to argue; I didn’t have a medical degree.
“I have always taken multivitamin/mineral supplements. This is over the counter, but they contain zinc and iron. In high mg levels. “
“Good.”
“So will this help?”
“If it makes you feel better.”
“It doesn’t. I’m getting worse. This stuff has
vitamins A, D, E, and K. It has B-12.”
The doctor nodded.
I pressed on. “What about cryotherapy?”
“A cold tank? Miss Whittenberg, you have Raynaud’s.”
“I know, but this isn’t just plain cold; this is like 145 degrees below. It’s like freezing Walt Disney’s head. I read that extreme cold, when done in short bursts, improves your health.”
“That’s nothing but a spa treatment. Whatever benefits you get won’t last. “
Well, God forbid, I get temporary relief from this misery—I mean that would be just awful, I considered saying, but I thought better of it.
It wasn’t all worthless. The vitamin E gel I found at a holistic shop worked wonders with my digital ulcers. It had the antifibrotic action to break down the excess tissue, and my hands did look, and I believe, move better. What’s that saying about a broken clock?
My dad always told me that doctors have cures for every single disease known to man, but they don’t want to share it because they want you to keep coming to them and coming to them. His sentiments haunted me as I took him from one specialist to another specialist as the care for his disease wore on. My point of view evolved drastically after I got sick—it does make one wonder.
So I continued concurrently, waiting, being a patient-patient while all the while keeping both eyes wide open, scoping for a miracle.
Reading the Sunday paper, the health section featured a man in his fifties with RA. He was pictured doing a handstand, and the article detailed that since his diagnosis, he had turned into a fitness nut. Running, weightlifting—becoming a total gym rat. He described how he learned to fight through his pain and stiffness. He said he struggled through it till he got to the other side of it.
That article was an inspiration, and I examined my life. Never one to have a lot of vices, there was always room for improvement.
It never hurts to cut down on added sugars.
Or to drink fresh, filtered water from stainless steel containers rather than plastic leaking bottles.
I switched from my beloved coffee to (to my taste) horridly “healthy” herbal tea.
I took up yoga again as the gentle stretches did help lengthen my constricted muscles. I even thought of getting into meditation, but that was a step too far—how could I do something like that? I couldn’t shut off my mind. I needed to keep it revving and think about how I was going to die. I was going to die.
I was going to die; I know we all are, but I was going to die, particularly from this disease.
I much more liked holistic healthcare (I don’t care if it “works”. The idea of treating the “whole person” is not just a glossary of symptoms and side effects. Due to circumstances, I was continually required to live my life without all my emotional, spiritual, and mental facets. I felt better (temporarily). I felt warmer than when I dealt with conventional medicine.
All this, though, came at a cost. Acupuncture and massage sessions weren’t cheap. Scheduling them wasn’t easy when I tried to keep a regular work schedule and being available to pick up, transport, or just spend time with Tiego—didn’t leave a lot of spare time. Many natural remedies can be quite expensive. Yearly, Americans spend some thirty million dollars—to anyone with back pain, migraine, fertility issues, or panic attacks who gain even a second of relief or solace: it’s worth every penny.
To me, alternative medicine is very close to, if not on par with, conventional medicine. All the sick person wants to do is attain control, to get ahead of things that are slipping through your grasp. Of course, there is such a thing as universal energy. Of course, there are healing properties all around us; how to seize that fire, that life force. That force of life ebbs and flows, in the ether, in a dream.
Allison Whittenberg is an award-winning novelist and playwright. Her poetry has appeared in Columbia Review, Obsidian, Meridians, Feminist Studies, J Journal, New Orleans Review and others. Whittenberg is a ten-time Pushcart Prize nominee. They Were Horrible Cooks is her collection of poetry. Killing the Father of Our Country is her latest novel. Her plays have been performed at Interact Theatre, Downtown Urban Arts Fest, Hedgerow Theatre, and many others. Her newest plays SLINKY and ADJUNCT will have full runs in 2027.
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