Tag Archives: miscarriage

Grief Songs

When my mother was dying, I listened to Patsy Cline. “Crazy.” I Fall to Pieces.” Sweet Dreams.” Her songs set the soundtrack to my grief. I listened to them when I wrote in a D.C. apartment I shared with two Scripps Howard interns.  At the time, my mother was not yet dead. So my grief was anticipatory. But we didn’t have that concept back then. Anticipatory grief.  I had no language to orient me. I kept silent.

Patsy’s songs vocalized what I could not say. She sang of lost loves and unrequited loves and vanished dreams. She sang of desire and brokenness. She sang of memory’s cohering power.

Patsy didn’t write her songs. But she made them her own. When she sang them, she sounded like she was on the verge of weeping. The word I’d use now to describe her sound is mournful. Her voice ached, and that ache mirrored the pain pulsing in my own heart, a pain I could barely acknowledge as true.

I’ve always found it difficult to listen to music when I am grieving. So many songs and artists have felt like an affront to my sorrow, or like betrayal. But Patsy’s music feels like an affirmation, like I have permission to be happy and sad in the same breath. She relieves my guilt. She assures me I am not alone. She reminds me we all have something to mourn.

I now live a few blocks from an apartment where Patsy lived with her first husband, the one from whom she acquired the Cline name. I have walked the same streets she walked. I have seen the same architecture, the same trees.

I find it strange to think of myself sharing a literal path with her, even if her music has accompanied me on the path I’ve walked alone for fifteen years, a path that started when my mother began to die.

We often think of death as an event, and sometimes it is. A terrible accident or crime. But death can also be a process that takes years or days or months to culminate. In my mother’s case, we had three months from when her kidneys began to fail until she died. Three months where neither of us said the word dying. If we spoke it aloud, we would make it true. Also, the word dying felt false.

Because even as she experienced deadly organ failure, my mother was alive. She was living in the same ways she’d lived most of her adult life, although restricted by dialysis and insulin dependence.

She woke up each morning and made her Dunkin Donuts coffee. She watched “Good Morning America” and read The Baltimore Sun. She clipped Susan Reimer columns for me. She called her mother. She called me.

She listened to me complain about the roommates who didn’t like me for reasons neither of us could discern. She supported me in my refusal to date an extremely nice boy. How could I develop a relationship with someone else when she occupied so much of my attention? What was the point of loving someone new as I stood on the edge of losing the one person I loved more than anyone? I never voiced these questions to her. They languished in the silence between us.

When I visited her, we watched “The Golden Girls,” and she cooked for me. She baked me cookies from a Pillsbury roll. She made vegetable soup from a box mix, then sent me home with a Tupperware container full of dinners for the week. She took care of me, even as I began taking care of her.

In the midst of all this normalcy, it was easy to pretend things were normal, to pretend appearances could equate with experience.

In suburbia, where I was raised, normalcy is an aspiration. So is being okay. In the worst moments of her life, my mother clung hard to these myths of normalcy and okayness. And I affirmed them by staying silent.

I knew how to perform normalcy. I did not yet know how to mourn.

***

I visited Patsy Cline’s house in Winchester, Virginia recently. This was the first trip I took after losing a pregnancy that came after two years of waiting for my body to be able to sustain conception. I am not exaggerating when I say I wanted this baby as much as I have wanted to resurrect my mother. I am surprised by how much I want, how wanting compresses me, constricts me.

Mourning, too, is a kind of wanting.

I am mourning what I’d thought of as a baby growing inside of me, even though doctors used different words. Embryo. Fetus.

I am mourning the baby I wanted, and who did not come to be.

I am mourning the baby I want and might not ever have.

***

I find myself listening to Patsy’s songs each morning before I start my day. She sings me into my sadness, the way she did when my mother began to die.

So many people ask me, “How are you?” Or they send me texts like, “Are you feeling better?”

And I feel pressured to give the answers I suspect others want for their own relief. Fine. Yes.

But Patsy lets me be.

It is hard to tell the truth when we are grieving. And this makes me feel more alone, the pressure to perform normalcy.

The truth is I am sadder than I’ve been in a long time. The truth is grief has no finish line. The truth is grief is the shadow side of love.

Grief is what we inherit as a consequence of our love. It is proof of how powerfully we have loved.

This is why so many love songs are really about loss. This is why Patsy always sounds like she’s about to weep. She understands grief and love as separate sides of the same brilliant coin.

I listen to her at night now too, the same way I did years ago when I could not yet acknowledge my grief.

Now I let her sing me to sleep. I let her remind me of how terrible and beautiful our sorrow can be.

Patsy (2).jpg

On Speaking Up

Two weeks ago, I sat in my endocrinologist’s office and waited … and waited … and … waited. I had an 8:45 a.m. appointment. He entered the room at 9:25 a.m., more than 30 minutes late.

Then he rustled through my latest labs, which showed a worrisome increase in thyroid stimulating hormone. Despite my efforts to lower TSH through an autoimmune diet, exercise, meditation, and supplements, I came to that appointment with a hard conclusion: Starting medication would be the kindest thing I could do for my body.

Twice during this appointment, my endocrinologist raised his voice at me. The first time, it happened when I named my ideal TSH level.

I chose this level after researching blogs, books, and studies about Hashimoto’s, hypothyroidism, pregnancy, and miscarriage. The doctor made it clear he did not care how I had arrived at this number I chose. He invalidated my knowledge, which I came by honestly and with professional expertise.

When I heard the sharpness in his voice, I felt tears welling, but I breathed. I remembered the metta prayer. I placed my right hand on my heart, so that I would remain calm and unemotional, given how gender bias negatively impacts the way male doctors may relate to female patients. (How dare I speak at all … )

The second time he spoke sharply was when our conversation veered toward medications. I expressed my discomfort in taking medications that contain gluten, sugar, or lactose. The most popular thyroid medications contain at least one of these ingredients. I asked my doctor to confirm that the prescription he was writing would respect the boundaries I needed to set.

“I don’t have time to answer your questions,” he replied, his voice rising again. He may as well have said, Shut up. Because that’s the silencing implication of his words, which he spoke at a volume I perceived as disrespectful.

For me, being silenced is worse than being yelled at or not being listened to. It’s a complete invalidation of my voice, of my right to speak on behalf of myself. Silencing says, You don’t matter. Your ideas don’t matter.

Later, I looked up the medication’s ingredients myself. (In less than two minutes and without an MD, I found them on the manufacturer’s web site.)

The next morning, I called my endocrinologist’s office because I needed to address the silencing. I needed to say silencing is an unacceptable communication tactic, as far as I’m concerned. I needed to know it wouldn’t happen again.

So I said I felt frustrated by my appointment. I said I felt disrespected by my doctor. I said my previous experiences with him had been positive, and that his behavior seemed out-of-character. I asked for assurance that I could trust him to be attentive and respectful at future appointments. The woman with whom I spoke said she would pass this information along to the office manager, who would call me back.

I’m still waiting for that call back.

I guess I shouldn’t be surprised by further silence, but I am. I’m surprised because I tend to expect the best in people. I’m disappointed, too. I’m also angry.

Even as I write this, I feel my heart clenching, my throat tightening. I want to scream, just so I will be listened to. Just so I will be heard. That was all I wanted from my endocrinologist that morning. A little understanding.

But I also know I’m extraordinarily lucky. Because I had a mother who taught me my voice mattered. She taught me to be skeptical of physicians, to do my own research, to ask my questions, and to fight for respect if it was denied.

My mother became a patient advocate after her experimental organ transplant in 1994, at a time when the field was still relatively new. Her own experiences taught her that advocacy is what all patients need in a healthcare system that, at its most broken, can be deeply dehumanizing, especially to women.

The worst part of navigating an autoimmune disease isn’t doctors who behave badly. It’s not having my mother beside me. It’s having to go alone to doctor’s appointments when I feel anxious and scared.

But the best part is learning to see myself as powerful, even in situations when a doctor’s behaviors intend to deny me power. My mother taught me to get back up when I felt knocked down, to keep going. She taught me I deserved kindness and respect. She taught me not to accept anything less, especially from men.

I don’t know if I’ll continue seeing this endocrinologist. There are many, many endocrinologists in the sea, and I’m resolved to find one who can handle a patient like me, a patient who does her own research and who speaks for herself. That’s the only kind of doctor who deserves my money, trust, and time.

Last week, I went to my first appointment with a functional medicine physician. We sipped tea in his office, and he listened. He showed me a chart with all possible medications and their ingredients. He ordered much more detailed tests than my endocrinologist has ever asked for. He told me he has “a passion” for Hashimoto’s because his wife and daughters have the same disease.

I felt comfortable telling him how I dreamed of my mother the night before our appointment. I shared that, in my dream, my mother was on the phone with my endocrinologist. She was shouting at him to order a very specific endocrine test, unrelated to thyroid disorders. I told him the test she requested was now on his new lab order. He just smiled.

I don’t know what will happen next, or what my future tests will reveal. But for the first time in a year, I am not afraid of the unknown. I feel understood. I feel heard. I feel safe.

 

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