Chapter 5: “Mom, please make it stop!”

“Much of your pain is self-chosen.

It is the bitter potion by which the physician within you heals your sick self.

Therefore trust the physician, and drink his remedy in silence and tranquility:

For his hand, though heavy and hard, is guided by the tender hand of the Unseen,

And the cup he brings, though it burn your lips, has been fashioned of the clay which the Potter has moistened with His own sacred tears.”
– Kahlil Gibran, The Prophet

“Just please, please make it stop…”

I would rather not remember this. I would rather not write about it. I tried to write about it in the last installment, and watched in smug comfort as I veered off into a rant about modern pharmaceuticals. Blocked for over a week since I posted it, I’ve fought the inevitable realization that I must face and deal with the helplessness, the frustration of months of watching and empathizing with a child of my body so deeply in pain for so long a time. I struggled, even in my dreams, resisting my need to go into that suffering, to bring it back in ideas and words, to share it with anyone else. It’s such an intensely private thing, that kind of pain. Inside of me, those memories are clearly labeled: Not For Public Consumption.

I don’t want to write this. I don’t want to remember it. Even now, my heart is pounding, and my breathing is altered, obvious fear responses. Even now, I’m trying to find excuses not to write this. Even now, I’m driven back to this screen again and again, knowing I must.

I start by remembering the day I walked into his hospital room while he was suffering an allergic reaction to Vancomycin. He was asleep, his long, unnaturally slender body sprawled over the hospital bed, which had been raised to catch the errant summer breezes from the open window. His hospital gown lay over his hips, granting the minimal amount of modesty needed to a body raging with fever. The bedsheets were tangled at the foot of the bed, fighting for space with the pump for the air mattress and the clunky VAC unit. Tubes from the VAC unit clung to his left leg in several places, looking for all the world like tentacles feeding on prey; clots of sickly green pus being drawn through them with the unit’s every gurgling rasp. His skin was a dull, angry reddish-purple, raised in irregular welts from the rash.

I closed the door behind me and stepped quietly into the room, knowing by this time that rest was a precious and rare commodity for the hospitalized. As I neared, I noticed rapid the pulse beat in his throat, how shallow his breathing was. I could feel the heat radiating from his body as I stood beside his bed, noticeably warming the air around him. What’s more, in an eerie sort of way I knew, as if I were going through it myself, that sleep was the only way he could escape the unending pain. My throat tightened, and his body blurred as tears abruptly filled my eyes. I fought hard not to sob aloud in sudden, aching grief and terrible helplessness. He was suffering, had been suffering for a month by that time, and there was nothing I could do for him. Nothing.

My knees tried to buckle; I turned and left the room as quietly as I could. I did not want him to see me crying. He had his share of pain to deal with. He didn’t need mine too. I found myself a few moments later in the chapel, sitting by myself, breathing carefully, trying to re-establish some control.

I had given up the comfort of a personal God a long time before this, so I had no one to which I could beg that my son be released from this hell. There was no Supreme Being to hear any anguished pleas to let him go free, that I would rather it be me suffering in that bed. But there is a kind of solace in those hospital chapels nonetheless, flowing from the walls that have seen countless grieving family members pass into and out of them. That serenity that allowed me to calm myself, to remember that this pain was my son’s ordeal — and that witnessing that pain was mine.

I’ve since heard someone call that kind of thinking “pointless melodrama.” I can only assume they’ve never been through the experience. I don’t envy them the lessons in compassion that kind of thinking brings.

His eyes were open when I returned to his room — there had been another round of needles, blood draws, and lab tests, pain in acute, abbreviated doses. He turned to look at me as I entered, my self-possession restored, but my newly rediscovered cheerful smile faltered as he said, “Mom, I hurt all over.”

“I know, honey. I know.” And I did. I knew he hurt — I was hurting for him.

“Please make it stop, Mom. Please…”

Self-possession tattered but holding, I left a few moments later to talk with his nurses. They couldn’t give
him anything but Tylenol, and even then small doses of that — his liver enzymes had soared to dangerous levels and the doctors did not want to offer any further insults to it by introducing more pain medication. He was on his own until they found out why his liver was in rebellion, and could do something about it. Even through my upset at my son’s pain, I realized they were doing the right thing. It was cold comfort, however, and I knew it when I went back to his bedside.

I spent the rest of that afternoon trying to divert him, and maybe succeeding, a little. Skeptics will scoff, but there are ways to reduce pain that don’t involve drugs, and I’m conversant with a few of them. Between the visits of worried doctors we worked on those techniques, and my son got a few moments of relative respite while the experts pondered and prognosticated on what was going wrong.

I could have told them — in fact, I did tell them. It was an allergic reaction, obvious to everyone who didn’t have an M.D. after their name. I’ve written about this before. They eventually got it, and before any serious damage was done, but not before his body had cannibalized itself and consumed half his weight in its struggle to survive.

Unfortunately, this was not the last such episode. After his surgeries the pain spiked — and I was proud of him for not succumbing unnecessarily to its seductive voice and the poisonous caress of narcotics. In San Francisco the bed he was had a defective air mattress, but they left him in it the entire time he was there (despire repeated requests for a change), resulting in a severe backache that drove him to Vicodin and still left him writhing in unendurable agony for hours at a time. Sometimes we could both focus enough to work on alternative forms of pain control. Other times it was back to the drugs and the helplessness.

I reach this point in my narrative knowing I don’t have any answers to the dilemma that patients with long-term pain pose for the health care industry, nor advice for the loved ones who must somehow find a way to endure, however vicariously, that person’s suffering. In the end, I cling to the words Kahlil Gibran wrote in The Prophet. He writes, “The deeper that sorrow carves into your being, the more joy you can contain.” I suspect this is true, and find myself these days clinging to those words. They offer hope for brighter days ahead, even in the deepest depths of agony.

Sometimes, like Pandora and her box, hope is really all you have left.

The fifth in an ongoing series of attempts for the author to make sense of the expensive, inefficient, and nightmarish health care system, and her family’s experiences while trapped in it.

Quote of the Day: Science without religion is lame, religion without science is blind. –Albert Einstein
Metaphors For Life’s website