Stupid & Hurtful Things People Say

People say [unkind] things to relieve themselves of feelings of pain, anxiety, and loss, not to offer you any relief. It is, in fact, a denial of your humanity to say those things. Accepting it without response may keep the peace, but it won’t be your peace.

The Dying Time, by Joan Furman & David McNabb

People say stupid and hurtful things to the dying and their caretakers. They also say stupid and hurtful things after someone dies.

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Breakdown

There is no such thing as a nervous breakdown.  This is why I didn’t have one.

I also didn’t have one because I’m a strong person. Very strong.

Another reason I didn’t have one, even when my daughter was dying, was that four years in graduate school equipped me to fend off and defend against all manner of psycholgoical and emotional traumas in myself and others. It was not possible to have a breakdown.

Finally (coming full circle), I couldn’t have a breakdown because breakdown is not a DSM-IV diagnosis and there is therefore no medicine for a breakdown, no capsule or prescription or take-two-and-call-me-later-rest-in-bed-it-will-get-better for a breakdown. Because there is no such thing as a nervous breakdown.

So, what I was doing screaming and screaming in my front yard is beyond me. All I know is that one day–one more day after lots of other days like this one before it–days in which my daughter was barely responsive and we had to get her to the emergency room . . . one day I screamed. I started screaming as we were putting my daughter into the back seat of the car, and there was an old lady walking down the street on her morning walk, and she slowed down and stared at me as I screamed.

I opened my mouth and screamed more, and I looked that old lady right in the eye, and by that time I felt my mouth was a huge, round “O,” as if I were screaming “O!”

I had car keys in my hand, and my daughter in the back seat, lying down. Her eyes were round like “O” and I was the mom, and I was losing it. I screamed more as I got into the car, and I kept on screaming. I drove, and I screamed. I screamed at the stop sign. I screamed and I yielded at the four-way stop, as a middle-aged man stared at me and I saw his mouth make another “O!” as I screamed some more. I drove four or five blocks and came to a red light, and the red light also looked like a red “O.”

I screamed, and felt it was wonderful and horrible to scream; it was fitting and it was completely correct to scream. I felt very  nearly outside my body, watching it scream.

Finally, I stopped screaming when the light turned green.

I kept driving, and tears and snot ran down my face.

I called to my daughter in the back seat, “I’m so sorry, I’m so sorry! I’m so sorry!” but she was insensible and had been. Afterward she didn’t remember being taken to the car. She didn’t remember this last trip to the hospital. And that was what this was–the screaming trip that was also the last trip she would ever make to the hospital.

What person could possibly handle all this, and such a fragile child, with limited help, and not scream at some point?

I screamed so loudly that my throat burned and my eyes felt that they might pop out of my head (although I learned from Myth Busters later that it’s impossible to have one’s eyes pop out of one’s head, even after screaming for five blocks).

Later, it would be almost 12 hours before anyone at the hospital could get an IV into our daughter, because her veins had collapsed and there was not a vein to be gotten. The Medivac people had to come down to get a vein, because they were expert at it. I was terrified that she would die while waiting for an IV, die apart from her people who loved her. Afraid she would die in an ugly, sterile place with cinderblock walls painted gray.

Why, in this day and age, are there still cinderblock walls painted gray?

That day I learned that I can have a breakdown. I could tear my hair out. I could roll on the ground and tear at my own face with my fingernails and become a mad woman.

I’m capable of that; I know this now. It makes me groan“OH!”

Acting Weird is Not a Symptom

Listen up: acting weird is not a symptom. Just ask any emergency room nurse who has known your child for all of 30 seconds.

“What are her symptoms?”

“She’s acting weird.”

“What? Acting weird is not a symptom. What are the symppptommmms?” This, drawn out slowly and with empasis, as if Nurse Ratched is talking to an imbecile.

“She’s acting weeiirrdddd,” I respond. “And, for her, acting weird is a symptom. This is our fourth visit–”

“Ma’m, acting weird is not a symptom! So if you can’t tell me what her symptoms are,” she says, with a swift glance at my daughter, who is silently watchful, “and she doesn’t look like anything’s wrong with her, then you can wait because I have patients who are really sick to attend to.”

There is a quick intake of breath by Olivia, who has seen and recognized the look on my face, the narrowing of my eyes. Nurse Ratched raises an eyebrow and leans toward my daughter, evaluating whether that quick gasp is a symptom. No. No symptoms. Only a wide-eyed 11-year-old. The nurse turns to leave.

“As I was saying, nurse, this is our fourth visit in–,” but she’s already gone.

“. . . in as many months,” I finish lamely, shrugging my shoulders at my child helplessly. Her head falls into her hands and she mutters, “It’s OK, Mom. I’m feeling better.”

But she wasn’t better. Every time we arrived here, her symptoms were different. One time she couldn’t speak, but the ER nurses assumed she was normally incommunicative. The next time, she was lethargic and clammy and her blood work showed she was dehydrated. I can’t forget how the nurses stared at me, as if I had been depriving my child of something so basic as water.

This time, she was acting weird: dispirited, joyless. Weary. That wasn’t Olivia. Our Olivia was the most joyful, happy, and loving person any of us had met. This was a human being who seemed to have been born to embody joy. At school, they had been attributing her lethargy to boredom, but it seemed to me that, as her body wore down, her spirit must have known somehow, and it wore down with her. She wasn’t herself: and that was a symptom.

Several visits before this one, Olivia had landed in PICU. One of the nurses attached to a specialist told me that this “didn’t look good.” We stood outside the unit where Olivia slept, surrounded by specialists I had never met before, and I wondered. . . what did not-looking-good mean? Was the nurse saying, in so many words, that my daughter was going to die? Was there no one who could get a clear message to me as I stood down there, in the bottom of a very deep well?

Because that’s what it seemed like, being in a very deep well. I remember that I felt my brain couldn’t function. My good friend, Elaine, stood beside me. Like someone needing an interpreter, I turned to her and asked, “Did she just say Olivia is dying?”

Elaine grimly nodded, “Yes.”

I asked again, “She’s going to die? Now?”

“No,” Elaine answered, “No, not now. Soon. She is going to die from this soon.”

Now we were at the hospital again, and with each visit, we wondered which crisis would lead to sudden death. I imagined a sudden death because she crashed so quickly: in a matter of half an hour, she could be in a crisis. Nobody had told me what the process would actually be. Everyone focused on getting her better so that she could return home and live longer. They said she was dying, but they sent her home. They said she was dying, but they gave us no help. I didn’t even know what we were waiting for. What symptom were we to watch for?

Would she suddenly die on the 20-minute ride to the hospital?

I came to hate the hospital. I feared the bureacracy of the hospital, the faceless paternalism and control of my child and my family; control of the body and, seemingly, the soul. Entering the hospital with my ill child stripped me of my credentials, authority, and autonomy: we were trapped in its giant maw.

I saw the opening maw of hell, 
With endless pains and sorrows there;
Which none but they that feel can tell–
Oh, I was plunging to despair.
–Herman Melville, Moby Dick

Somewhere inside, an old verse rolls around: “Thou hast made marvelous to me Thy lovingkindness in a beseiged city.”

When Olivia’s blood work came back, suddenly there was much bustling around our curtained cubicle. Olivia was whisked onto a gurney and up to a room and loaded with IVs and medications. Nurse Ratched would not look me in the eye so that I could give her a glare that said, “See? Acting weird IS a symptom!”

And here we went again.

Lamentations

That was and still is the great disaster of my life–that lovely, lovely little boy. . . There’s no tragedy in life like the death of a child. Things never get back to the way they were.

–Dwight D. Eisenhower (1890-1969), on the death of his first son at age three

My son, a perfect little boy of five years and three months, had ended his earthly life. You can never sympathize with me; you can never know how much of me such a young child can take away. A few weeks ago I accounted myself a very rich man, and now the poorest of all.

Ralph Waldo Emerson, letter to Thomas Carlyle

My daughter died halfway through the year 2000.

kollwitz03.jpgWe started that year, I journaled, “quietly, at home with the children.” January first came and went without fulfilling any of the dire predictions of Y2K computer chip failure and resulting doom. As was my practice, I sat with a cup of tea and my journal on the evening of New Year’s Day and reminisced over the previous year, also looking ahead hopefully to what the new year might bring.

The previous year, 1999, had not been a good year. We had trauma upon trauma, with five near-death experiences accruing to family members: a daughter-in-law nearly bled to death after childbirth; twins almost drowned in the swimming pool; my husband had been electrocuted at work and lived to tell about it. My mother used to always say “bad things come in threes,” but to us they came in fives that year. I was glad to leave 1999 behind. The year 2000 could not be worse, I thought.

Although I wrote that I hoped to grow in lovingkindness during the new year, I noted that I still felt disabled by the fear so much trauma had caused in 1999. Near-death experiences are almost as good as actual deaths for reminding one of the impermanence of life. They are received as traumas to anyone who is attached to this life.

I haven’t written or spoken publicly about my daughter’s death until now. I recall I could barely communicate about it for the first year after she died. Now it’s time to write about it, and I’m going to write about it here.

Lamentations

Midway through February of 2000, I had an odd urge to read the Old Testament book of Lamentations. Knowing what I know now, I think about how the spirit searches all things, and how on the deepest level, I knew that reason for lamenting would soon be upon us. Death and undoing were already at work in our daughter’s body, although at the time we didn’t know, and couldn’t have known this: To all outward appearances, our 11-year-old daughter was the picture of health.

The book of Lamentations begins:

How lonely sits the city that was full of people!
She has become like a widow who was once great among the nations!
She who was once great among the provinces has become a forced laborer. . .
All her majesty has departed from the daughter of Zion;
Her princes have become like bucks that have found no pasture;
And they have fled without strength before the pursuer.

An ominous enough beginning, but what follows in this ancient book is chilling. I listed all the lamentations (and accusations) that Jeremiah recorded:

From on high He sent fire into my bones!
He has spread a net for my feet…
He has turned me back…
He has made me desolate…
He has made my strength to fail…
The LORD has given me into the hands of those against whom I am not able to stand.
He has called an appointed time against me to crush my young men…
Far from me is a comforter, one who restores my soul.
He has drawn back his right hand…
He has burned in Jacob like a flaming fire
He has bent his bow like an enemy
He has set his right hand like an adversary, and slain the pleasant
He has poured out his wrath like fire
He has swallowed up Israel
He has destroyed its strongholds and multiplied mourning and moaning
He has violently treated His tabernacle
He has destroyed His appointed meeting place
He has despised king and priest
He has abandoned His sanctuary
He has beseiged and encompassed me
He has made me dwell in dark places
He has walled me in so I cannot go out,
He has made my chain heavy.
He has blocked my ways
He has made my paths crooked
He is like a bear lying in wait
He is like a lion in secret places
He has filled me with bitterness
He has made me drunk with wormwood
He has broken my teeth like gravel
He has made me cower in the dust

Into the Pit

This could not have a good ending. And it doesn’t; Jeremiah wrote, “My enemies have silenced me in the pit and have placed a stone on me” (Lamentations 3:53). We see here a foreshadowing of the death of Christ and, one hopes, the resurrection. I am reminded that the human life is, as Buddha said, one of suffering. Or, to put it as Christ did, “In this world, you have tribulation…”.

Lately, the journals of Mother Teresa have been in the news. She experienced so much spiritual and emotional darkness as she worked with and served the sick and dying in the streets of Calcutta. If there was ever a spiritual giant who didn’t experience darkness and the silence of the pit, I haven’t heard of it. So, when I look back on my grim reading of Lamentations at the beginning of the year my daughter died, I see that all the blame and accusations I would later aim at God, and all of the anguish I would feel, I was reading before it even happened. Eventually, when I was reduced to great inner silence, the words of Jeremiah’s laments would return to me.

He has made me dwell in dark places. . .

While it doesn’t make the loss go away, I do find it strangely comforting to have company in the pit. With or without God or faith of any kind, human beings will suffer. My own preference is to find comfort in the good and terrible company of those who are lamenting. This is part of the agony of being human.

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