All posts by maginlasovgregg

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Why I’ve Left My Last Male Doctor

On Sunday night, an itchy, painful rash appeared on my back. I took off my shirt, faced a mirror, took a photo of the rash and texted it to my friend Anne, my husband, my sister. We all need someone we can text photos of our rashes to in the middle of the night, right? I am grateful for my people.

The next morning, the itching turned into a tingling, burning pain. I drove to urgent care and lifted my shirt once more while a doctor examined me in a box-sized room.

“Definitely shingles,” he said. And I started to cry because I’m not used to men believing me when I tell them something is wrong. I am not used to medical professionals taking my health seriously. I live in the body of a woman. I am used to being gaslighted. I am used to being dismissed, disbelieved. I am used to being objectified and shamed.

At each doctor’s visit since my miscarriage, I am reminded of the midwife who told me she wouldn’t confirm my miscarriage because she didn’t want to be wrong and “look stupid.” I am reminded of how another person’s ego can matter more than my body.

I saw my GP the day after my diagnosis. I asked him to clarify when I could return to my exercise routine. He avoided my question and spoke at length about how my shingles ridden body is a danger to pregnant women in the first trimester. He did not tell me to quarantine myself, as the chance that a pregnant woman would catch chickenpox from me is profoundly rare and involves skin-to-skin contact. I’m not in a sexual relationship with a pregnant woman. Nor do I have plans to walk around topless in order to infect a topless pregnant woman with chickenpox. My life is not an episode of “Crazy Ex-Girlfriend.”

So why would this doctor speak such absurd words to me, if not to remind me that my body is less valuable than a fertile, pregnant body?

But I doubt my doctor was conscious of the message underlying his words. My experience is that men are frequently unconscious of gender bias or gender inequality. Claiming ignorance allows them to claim power, to claim women’s bodies. Patriarchy looks like this, and like this, and like this, and like this.

My experience of my GP is that he enjoys being the smartest person in the room, and his answers matter far more than my questions. I should have left him two years ago, when he minimized an abnormal TSH test. But I was sick, and I needed help. I did not have the energy to find a new doctor. I was willing to put up with this doctor in order to get the medical treatment I needed at the time. Women learn to put up with a lot of bullshit in order to get what we need, and I am no exception.

I wish I could be more assertive. I wish I were not conditioned into silence, obedience, people pleasing.

At my urging, my GP recommended two endocrinologists –– one female. He cautioned me that she had “a strong personality.” I am now a patient in this female endocrinologist’s practice. She is among a small number of “outside” physicians that Johns Hopkins surgeons trust to interpret thyroid ultrasounds. Hopkins values her medical opinion, whereas my GP’s language insinuated those opinions as threatening.

We live in a society where “strong personality” is code for opinionated, is code for bitch.

I am okay with being opinionated. I am not okay with being perceived as a bitch because this perception makes me easier to dismiss as unstable.

In the past year, I’ve lived more fully into a life with an autoimmune disease (Hashimoto’s thyroiditis). I’ve learned that I need to dismiss doctors who dismiss me. I’ve learned to trust that sinking feeling in my gut when a doctor talks over me or says something absurd.

This has largely meant leaving male doctors in favor of female doctors.

I didn’t stand up and leave my GP’s office the moment he failed to answer my question. I did make a follow up appointment with another physician the next day. I chose a female physician recommended by a friend who lives with autoimmunity and chronic pain. She has taught me to reach out and build a network of female patients and practitioners who can support me.

My experience has been that female physicians listen to my concerns and prioritize my health more often than male physicians. Recent research published by JAMA Internal Medicine supports my experience, although I have certainly been dismissed by female medical professionals. Yet these experiences are far less common.

Years ago, I read a magazine article that said female diabetics are fifty percent more likely to die than men. While I no longer have the article, more recent research supports this idea in regard to type-1 diabetics who have renal disease, as my mother did. I long wondered why she fared so poorly in health systems as a juvenile diabetic, especially because she was a registered nurse. Why did she die while wearing an insulin pump? Did gender bias hasten her death?

After her organ transplant in 1994, my mother became a patient advocate. She created brochures for patients that I edited. She wrote letters-to-the-editor. She helped change healthcare laws in Maryland, and I went with her to the Maryland State House when she testified for the General Assembly.

We never talked about gender bias in the medical profession, or how the gender bias of a society threatens female bodies in countless invisible and insidious ways. That cultural conversation simply wasn’t happening when she was alive.

But I like to think we are living at a moment when a shift has begun, when  voices are rising up to shatter silence. I like to think her legacy propels me to speak out and make change for myself and others.

She showed me what an advocate could look like – in her case, an advocate became a woman in a hospital bed, a woman in a wheelchair, a woman tethered to dialysis machines. She taught me all bodies deserved respect. My body deserved respect.

I wish I’d believed her the first time.

 

 

Nine Ghost Stories

1

Do you believe in ghosts? My mother did. She believed her dead grandparents, Max and Frieda, visited her while she waited for her organ transplant. She believed they stood beside her bed and turned on a lamp when she thought of them. She believed love survived. Love could make a light bulb glow.

2

After my mother died, I heard rustling in her empty bedroom. I heard hangers rattling in her closet. I heard a crash. I heard footsteps, then silence.

3

The morning my mother died, I sat on the sofa in my apartment and read The Washington Post. I sipped coffee and lingered over each section of the newspaper. This was a ritual my mother and I shared when we were together –– coffee and newspapers. When I set my empty coffee cup and crinkly newspaper down on a table, the room turned salt-lamp pink. Then the walls swirled like water. When they stopped moving, when the pink faded to white, I knew my mother was dead. I turned on my cell phone and listened to a stream of voicemails that had collected while I slept. But I didn’t need a voicemail to tell me what I felt in my entire body. A void opening. A void that would never close. Yet, in the moment before this forever void opened, when the room was still pink, I felt intense peace. I felt the way I felt when my mother held me. Safe from all harm. Protected.

4

 A year after my mother died, she screamed my name in the middle of a dream. She screamed me awake. Groggy, I walked to the kitchen of a tiny apartment I shared with a roommate. I walked to the oven, which I saw had been left on all night. I opened the oven to check the pilot light. Sure enough, it had blown out while I slept. Gas flooded my nostrils then, and I snapped out of my dream-daze to realize I had a throbbing headache. I turned the oven off. I called poison control. I opened all the windows, then left the apartment.

I have had countless dreams of my mother since she died. This dream is the only one where she has ever spoken.

5

The day before we moved into our house, I met a man who delivered our rugs. I carried the heaviest rug upstairs by myself. First, I laid down a mat. Then I laid the rug on top of it. I listened to “Car Wheels on a Gravel Road” while I worked. I sang with Lucinda. Singing always makes me feel less lonely. I stopped singing when I heard footsteps in the hall. I heard footsteps enter the bedroom, and I froze. Because it felt like someone else was now in the room with me. It felt like this someone was watching me. I stood up and left.

6

I didn’t tell anyone about the presence I felt in our bedroom, not even Carl. I loved our house, and I didn’t want anything to be “off.” I hoped I was just being weird and imagining things. My aunt and her husband came to visit. They are both sensitive and intuitive. They both believe in ghosts.

Upstairs, my aunt said, “There’s a man here.” We stood outside the bathroom. I hadn’t told her about the footsteps in the bedroom. I hadn’t told her that on the night we visited the house with our realtor, I’d stood in this same spot and looked toward the master bedroom. I felt profound sadness then, all consuming regret.

My aunt lifted her hand to her head, which had begun to ache.

“He’s coming into your bedroom,” she said.

She told me the man died suddenly. She said his family had lived in the house, and that he didn’t want to leave. Then the man appeared to my aunt’s husband. He walked through the linen closet and into our guest room.

The next day, I hoped the ghost story was bullshit because I did not want a ghost. Still, I looked up the man’s obituary and learned he died after collapsing from a brain hemorrhage in the house. I imagine he fell in the same spot where my aunt and I stood, where her headache bloomed. The house passed to his son’s family. In the 1990s, his son’s widow sold the house to the owner who proceeded us. The man’s family had lived in our house for more than fifty years. I can understand why he wanted to stay. I can understand his grasping toward the past, toward loved ones, toward a space they shared together, toward a love that survives death.

7

On my aunt’s instructions, Carl and I stood outside the upstairs bathroom one night. We stated our intentions for the house. Carl thought this ritual was silly, but he held my hand while I promised we’d take care of the house. I told the man he could stay, and that we would make space for him. “This is a place of healing,” I told him. “A place of compassion.” I told him his family wasn’t here anymore. I said, “Go to the light.” I said, “Go to them.” Then the light above us crackled and flickered and dimmed. The bulb never returned to its former luster.

8

One night I couldn’t sleep. I left our bedroom and went to read in the guest room. I’d been having symptoms of anxiety and insomnia for months. Inexplicable weight gain. What’s wrong with me? I asked no one in particular, then fell back to sleep. A few hours later, I awakened to the feeling of hands on my neck. A firm pressure. I sat straight up in bed and turned on the light. I woke Carl up.

“Who do you think it was?” He asked me, half joking. He does not believe in ghosts, and yet he entertains my belief.

Was our ghost warning me about a medical condition involving my neck? Or was it my mother trying to tell me something? I wanted to believe I’d imagined the hands or invented them in a dream. But the touch felt real. Almost human. I could not ignore it.

A month later, I lay on an endocrinologist’s examination table. He palpated my neck. After an ultrasound, he diagnosed with with autoimmune thyroiditis. My question of “What’s wrong with me?” was finally answered.  It wasn’t the answer I wanted, but at least I had a diagnosis. I could begin to heal.

Since my diagnosis, I haven’t felt hands on my neck. I haven’t heard footsteps. No more lights have crackled or flickered or dimmed.

9

In gothic traditions, ghosts interrupt silence. They tell secrets, solve mysteries. They are Freud’s unheimlich ––the uncanny, the return of the repressed. Ghosts defy erasure. Gast. Geist. Gaeston. Most languages have a word for them. Language gives shape to the invisible, to the life force that underlays death. We fear ghosts because we fear death, because we insist on separating life from death. Ghosts challenge this belief in separateness. They insist endings can also be beginnings. I am not afraid of ghosts. All the ghosts I’ve ever known were driven by the same beautiful blazing engine: Love. I believe in ghosts because I believe in love.

 

 

 

What We Carry

“Behind the story I tell is the one I don’t. Behind the story you hear is the one I wish I could make you hear.” — Dorothy Allison, Two or Three Things I Know for Sure

For years, I taught Tim O’Brien’s “The Things They Carried.” My veteran students sat up straighter when we read from this story. Their voices rang out more sharply in class discussion.  These students understood the to-the-bone uncertainty of war. They knew how a pleasantry once taken for granted could become a refuge. They understood how love conflates with hope, and how both feed our will to survive. They knew grief as a burden we never set down, no matter what Elizabeth Kubler-Ross has written.

I loved teaching O’Brien’s story. I loved seeing how people who did not think of themselves as readers dove deep into a text and met themselves for the first time, saw their yet untold stories shimmering back at them through art. I don’t believe in healing as an aspiration. I don’t believe in closure or happily ever after. I believe in integration. I believe sorrow has something important to say. I believe we wear our losses the same way we wear our scars. Sometimes out in the open. Sometimes hidden. Sometimes the burden of what we carry is only visible to us. Sometimes we need to hear: I see you. You are not alone.

 O’Brien’s writing acknowledges life altering experiences so many learn to hide in order to fit in, to keep the peace, to pass. He tells stories we learn not to tell. Stories about grief, shame, vulnerability, and failure. If I only do one thing right in my job, it is to affirm people who believe they do not have a story worth telling. It is to help them find words to tell that story, to say I see you. You are not alone.

The first book that ever said, “I see you. You are no alone,” to me is Dorothy Allison’s Two or Three Things I Know for Sure, which my first MFA mentor assigned during my first semester in a non-traditional MFA program. I entered that program unsure I had a story worth telling, only sure I did not want to be a traditional academic. I had recently completed an M.A. in literature program that felt toxic to me, particularly in how male academics related to power, related to women, related to anyone whose ideas threatened their sense of power.

My MFA mentor founded a women’s studies program at a state university. She left her traditional academic path to build her life as an artist. She gave me Allison’s writing, which told me “I am not here to make anyone happy. What I am here for is to claim my life, my mama’s death, our losses and our triumphs, to name them for myself.” Before I encountered those words, I actually thought no one would care about the story I wanted to tell, a story about a mother and a daughter, a story about what love looks like before and after loss, a story about what happens after the worst thing happens.

I am still writing that story. Today that story looks closer to a book than it has ever looked. It will become a book, and I hope you’ll read it! Lately, my book is being shaped by new ideas about how trauma and loss influence who we become, how we relate to ourselves, to others. I have been thinking of Allison’s words, “two or three things I know for sure, and one of them is that if we are not beautiful to each other, we cannot know beauty in any form.” I am beyond fortunate to have found beauty in so many unexpected places. I work at a community college where people are so frequently beautiful to each other that I am daily moved to tears.

Recently, a colleague in another department shared Adverse Childhood Experiences research and articles with me. I read them at night, before I fall asleep. This might not be the best practice, because I find myself waking more frequently in the middle of the night, and going back to the research, which does not help my sleep. I’m not sure what I’m going to do with this research, but I know it is feeding something nascent in me right now. I am hungering for what my students hungered for when they read O’Brien. Perhaps I want to understand my own experience against the experiences of others. I want to know if there’s more to thriving than simple luck.

My ACE scores are high. So too are my resilience scores. Even so, I have been diagnosed with PTSD, and my responses to perceived threats are probably similar to those of my veteran students. In traditional academia, I experienced profound silencing of people (and particularly women) who survived abuse. I experienced a culture that privileges thinking over feeling, a culture of negativity and hyper criticism and perfectionism. Now, I have learned how to recognize how beauty coexists with toxicity, how two or three opposing things can be true at the same time.

I have learned how to set boundaries, how to say no, and how to resist pressures to carry what is not mine to carry. And yet, I am still learning how to hold on, how to let go, how to find beauty in the grasping and the release.

A Genealogy of Loss

1. My grandmother’s first child was born in August 1942. He died in January 1943. The word baby appears at the top his tombstone. The age 4 ½ months appears on the bottom.

2. He died in the same hospital where he was born. He died in the hospital where my mother was born eleven years later.

3. He died in the hospital where my sister gave birth to her first child. A boy, born in August.

4. All of my grandmother’s granddaughters have given birth except for me. Their first children have been boys.

5. Eleven months after she lost her son, my grandmother gave birth to a girl. She named her daughter for her lost son. Beverly. Bernard.

6. Beverly and Bernard had blonde hair, blue-green eyes. Seven letters in each of their names.

7. Family systems psychologists believe patterns repeat in families. Behaviors duplicate. Addictions multiply. We choose our partners based on our parents, our siblings, our grandparents. We echo their patterns, or repeat them, or break them. Lately, I have been wondering about those patterns. I have been wondering if we inherit misfortune, the way we inherit eye color, hair color, left handedness.

8. How else to explain the patterns of misfortune that cycle through families, a genealogy of loss? Or specifically, how else to explain the patterns of misfortune that cycle through my family, all the sad coincidences?

9. Some researchers believe anxiety travels in our genes. Others says it doesn’t. Who can really know?

10. In college, when I was overwhelmed, my mother told me to make lists.

11. She said, “Once it’s down on paper, you can make sense of anything.”

12. So here’s what I know:

13. When Bernard started to cry, my grandmother called the doctor. She told him her son kept pulling on his ear. She did not believe the doctor’s over-the-phone diagnosis of an ear infection. The doctor did not listen to her persistent pleas. I am afraid the doctor perceived her as a complainer. I am afraid he was a man who did not perceive a woman as credible.

14. When I was pregnant, I started writing about Bernard.

15. I do not know why. Maybe I was afraid I was going to miscarry. Maybe I already knew I would. (Intuition runs in the family.) Maybe I wanted to understand my grandmother in a new way –– mother-to-mother.

16. When I was pregnant, I requested Bernard’s death certificate.

17. A few days later, I started to bleed.

18. My husband tells me correlation does not necessitate causation. He is an ENTJ on the Myers Briggs. I am an INFJ, the most intuitive personality type.

19. A midwife examined me on a Friday afternoon. She told me I’d have to wait until Monday to receive my lab test results. She would not tell me I was having a miscarriage because she did not want to “be wrong and look stupid.”

20. Her doubt fed mine.

21. Even after I peed on a pregnancy test stick and received a negative result, I doubted the intuition that ripped through me.

22. When Monday came, I called to complain about the midwife. I asked for a written apology. My family tragedy was not about her self-perception or lack of confidence or whatever she had going on in her head that day.

23. I am still waiting. I have, however, received a bill for the trans vaginal ultrasound she performed, a procedure that women identify as traumatic. I had two trans vaginal ultrasounds in one week.

24. Bernard died on January 4, 1943. A Monday.

25. Beverly’s first and only son was born in January 1966. He was 46 when he died. His mother was 69.

26. I was out of town when Bernard’s death certificate arrived, but my husband e-mailed me a photo.

27. The cause of death is adrenal hemorrhage caused by bacterial meningitis. No ear infection recorded.

28. The family buried Bernard on June 5, 1943. They had to wait because the ground was frozen solid that winter. Jewish custom is to bury the dead within 24 to 48 hours.

29. All winter and spring, Bernard’s body lay in a freezer, in a morgue.

30. By his funeral, my grandmother was already pregnant with Beverly. I imagine her standing at the grave, full-bellied and overfull of grief. How did she stand there? How did she not slide into the same darkness that held her son?

31. Five years later, she delivered a second son on June 6. Her son lived past infancy. He has survived two sisters and one brother, a mother, a father, a nephew.

32. In Hebrew School, our teachers said ancient rabbis did not consider a child to be a child until it cried. They said a child was not a child until the eighth day, when circumcision was performed, or a name was given. At 13, I thought this sounded like a clever rule. Now, not so much.

33. Jewish mystics believe the number 36 is a symbol for life multiplied. Double chai, it’s called. I conceived at 36. I miscarried at 36.

34. My grandmother lost a child in 1943.

35. I lost someone who has no name in 2017. I lost hope, possibility, my last shreds of faith.

36. But I am making a list. I am trying to make sense of it all.

Bubbie with Bernard

 

 

Why Silence Is the Wrong Response

We had a neighbor who never said anything after my mother died. I kept waiting for her to say, “I’m sorry for your loss” or “I’m sad your mother died.” Each time I ran into her, I expected her to offer a condolence. But she never said a word.

This woman was not a distant neighbor. She lived a few houses down. As a girl, I played with her children. She fed me at her dining room table. She told me stories about her own childhood.

Now, when I think about her, I do not remember the nice things she did. I remember her silence. I remember how her silence hurt me.

When she failed to acknowledge my mother’s death, my neighbor also failed to acknowledge my mother’s life. Her silence angered me. Her silence amplified my fear that my mother would not be remembered.

You see, the word remember means to reconstruct, to put back together. Remember is the opposite of dismember.

When a person remembered my mother, that person reconstructed the part of my mother that mattered. That person revealed the impact of my mother’s spirit in a world where her body would be forever absent. But silence erased her completely.

Silence is how the dead die twice.

A few weeks ago, I shared my post “How to Comfort the Bereaved” on Facebook. A few people commented that silence was the best response to bereavement. They reasoned that when we are silent in the face of another’s loss, we are safe. We do not risk saying the wrong thing.

I liked these responses because I understood their intent. I believed people genuinely believe they are doing the right thing by staying silent.

But I need to say now that I believe silence is the wrong response. I interpret silence as erasure. I interpret silence as cowardly. I interpret silence as taking the easy way out. Even well intended silence can have this effect.

We are not to blame for our silences. Modern society does not teach us how to speak openly about death or how to comfort the bereaved in meaningful ways. So we must teach ourselves.

In that spirit, here are a five things people have done or said that brought me comfort during a time of grief.

1. Say the word died. Do not say “passed away” or “met her maker” or anything else that belongs in a children’s book or cartoon. When you say died or any of its variants (death, dead, die) you reverse the spell of cultural denial that hangs over death for many Westerners. When you say died, you make the the subject of death less taboo, less shameful. You make it easier to talk about this normal bodily process that happens to everyone. You make grief and death less confusing

2. Be present. Invite a grieving person to lunch, to take a walk, or to another low key, low stakes one-on-one social event. After my mother died, lunch dates with family and friends saved me. Sometimes, I cried at the table but I also remembered what my life looked like before my loss. I remembered I used to be a girl who did normal things like eat pizza and laugh. I also glimpsed a little of my future: I could again be a girl who laughed and ate pizza. I could reconstruct my life around my loss.

3. Tell a story. If you knew the person who has died, share a story about what that person meant to you. At my mother’s shiva, my close friends told stories about my mother, stories I’d never heard until that day. From these stories, I learned my mother had relationships with my friends. They trusted and valued her. These stories affirmed something I needed to hear, that my mother would live beyond my own memories. She’d live in theirs too.

4. Send a card. If you do not know what to say, let the card speak for you and sign your name at the bottom. When you send a card, you let a grieving person know that the loss has not gone unnoticed by you. You relieve a grieving person from the burden of having to tell you about the loss. My sister saved a stack of all the sympathy cards we received after our mother died. I keep them in my attic now. Once a year, I look through each card and remember how many lives my mother touched. I realize the full impact of her legacy will never be known.

5. Say “I’m sad.”  The more common expression “I’m sorry for your loss” is not a terrible thing to say, yet it can feel like pity. But saying “I’m so sad X died,” extends compassion. Did you know compassion literally means “to suffer with?” Compassion is not supposed to be easy. Culture tells us to deny suffering and sadness, but grief lets us reclaim them. When we say, “I’m sad,” we turn away from pity. We turn toward empathy.

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

How to Comfort the Bereaved

1. Do not say, “Everything happens for a reason.” Just don’t. Okay? No matter how many times someone has said this sentence to you, recognize its words as vacuous substitutes for real words that actually have something meaningful to say. What reason are children taken too soon from their mothers, or mothers from their children? What reason does your child get to live and another has to die? Luck? Chance? Probability? Suffering is random, indiscriminate. Not personal. When you personalize suffering, you are not offering comfort. You are saying, “You deserved this.”

2. Do not say, “It was meant to be.” See above.

3. Do not say, “This was God’s plan.” I don’t know what kind of god or God or G-d you believe in, but these words make your god/God/G-d sound like a calculating psychopath. Do you really mean that? A glimmer of my own god, which I call goodness, tells me such putrid malevolence can’t possibly exist. Or if it does, it’s called evil.

4. Do not ask, “What can I do?” You might be short on ideas. This is normal. Grief is overwhelming for everyone involved. But now is not the time to give a grieving person one more thing to do –– i.e. authoring your “To-Do” list. Figure out what you can do, and then do it. For example, you do not need to ask permission to leave a meal on a porch. Not a good cook? Leave a bag of potato chips. Anonymous potato chips can be a great comfort. Better yet, start a meal train and/or order takeout.

5. Do not ask “What happened?” You know the answer already, i.e. something horrific. So why are you really asking? Are you afraid this horrible something might happen to you? That’s not surprising. Another person’s loss can force us to confront our own deepest fears, ones we’ve buried so far down we can barely see them. Do not turn away. Call each of your fears by name until they rise up from the deepest part of you. Understand their power. Understand projection.

6. Do not ask, “How are you?” When a rabbi asked me this question at my mother’s shiva, my heart shriveled into a piece of coal, and I said something sarcastic that he well deserved: How do you think I’m doing?

Let me rephrase that now: How do you think a grieving person is doing?

Not so good. Right? So instead of asking this question, offer a hug, a hand, a potato chip. Offer yourself as a person others do not need to perform happiness around.

7. Do not ask, “How can I help?” See number 4.

8. Do not say “Time heals all wounds.” I wish this expression were true. But, in my own experience, time has not been a great healer because, in this world, we have something called “triggers.” Maybe you’ve heard this word. Maybe you’ve even joked “trigger warning!” before you’ve said something that freaked out a lot of people? Or maybe you have no idea what I’m talking about. So let me explain. Triggers are like giant arrows that rip through time and take us right back to our worst traumas. Sometimes you know what will trigger you, and sometimes you don’t.

For example, the morning I began to miscarry my first pregnancy, I fell to the floor and wept the same way I did when I lost my mother fifteen years before. In that moment, two losses swam inside of me. Mother. Baby. Both gone, forever. And there was nothing I could do. In that moment I was me, the 36-year-old, with a cute house & beyond amazing husband & a horribly behaved dog. And I was the 21-year-old who could not even stand up, because the ground – or what she thought of as ground –– had disappeared.

At best, time can offer perspective. But it’s not a magic suture.

It is okay to be broken open by our losses, to be cracked into a thousand unknowable pieces by them. As Leonard Cohen once sung, “That’s how the light gets in.”

9. Do not say “It’s time to move on.This, by far, is the absolute worst thing to say. A loss can live inside a person forever, and a person can live inside a loss, around it, through it, and on into a life s/he never possibly imagined, a life fundamentally shaped by what has been lost.

Respect the awesome, holy, transfiguring power of loss. Honor it. Build an altar in your heart for it. There is no other way to proceed.