February 1975

In the Desert

When I visited the Sonoran Desert for the first time in September 2006, the landscape left me speechless. I felt like I was underwater, experiencing an ecosystem that was entirely “other” to what I always knew growing up on the East Coast.

Carl took this photo of me on our first hike in the Sonoran, a month before he asked me to marry him.

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This was our first hike together, and I was not prepared. But my smile is genuine, even though I’m wearing fashion sneakers that slid all over the pebbly sand. I did not become athletic or even outdoorsy until a few years into our marriage. This trip was a turning point because it showed me what I could do.

Now I am drawn to the Sonoran Desert because of the constant interplay between life and death. While this interplay exists in all ecosystems, it’s most apparent to me here.

We live in a culture that tries to erase death at every turn. Instead of died, we say passed away. Instead of funeral, we say Celebration of Life. But death cannot be erased in the desert. Death defies erasure. The desert is the most necessary memento mori that exists.

Leaving always breaks my heart.

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From what I’m told, my paternal grandmother loved the desert too. She’s buried there now, in the shade of a Creosote.

She lived in a neighborhood studded by prickly pears and Palo Verdes. But she planted shamrocks in her backyard, made them bloom beneath her kitchen window.

The first time I stood in what was once my grandmother’s backyard, my aunt pointed out her shamrocks. I tried to photograph them, but it was too dark. I couldn’t capture their essence. As I stood in the spot where her hands once plunged into rocky earth, I could feel my grandmother’s faith. Her spunk. I could sense her capacity for imagination.

The great sadness of my life is that I didn’t know this grandmother. She moved to Phoenix before I was born. My parents separated a year after my birth. Their divorce was Who’s Afraid of Virginia Woolf messy. But the aftermath is what I remember, and I think it was worse. With the exception of my father’s father, I was cut off from the rest of the family.

Until the day she died, my grandmother carried my photo in her wallet. She wore my name on a charm around her wrist. She never stopped loving me. But I have no memory of her.

Still, I always think of her when I walk the desert. I conjure the story of who she was, and who we could have been together.

Last weekend, when I hiked Saguaro National Park with Carl, tears pooled in my eyes. “I should have seen this with my grandmother,” I told him, then blew my nose.

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Grief is not linear. It’s more like a wave that rolls right back out to sea once it hits the shore. There’s no end point. No exit.

The first time I visited my grandmother’s grave, I wept as I wept when my own mother died. I did not expect the crush of sadness I felt. I placed my hand on her grave, as if I could touch her. This motion staunched my tears. I resolved to know her as best I could.

This year, when I touched her grave, I breathed Creosote and said the metta prayer: May you be happy. May you be well. May you be at ease.

My grandmother died not knowing that I loved her. There is nothing I can do to rectify that fact. On Sunday, I placed a rock I collected from the Chesapeake Bay on her grave. This rock came from the same beach where I scattered my mother’s ashes five years ago. Before I left the gravesite, I picked up a pink pebble and tucked it into my purse.

I wanted to carry a small part of this place away with me, as if I could merge with the desert, with my grandmother, as if such a thing could be.

January 2017

My mother got sick in January. A week after New Year’s Eve, she laid down on our living room floor and couldn’t move. She thought she had the flu. In truth, her transplanted kidney was rejecting, seven years after her experimental transplant.

That New Year’s Eve, I’d gone to a club in Baltimore with friends. I wore a silk top and sparkly earrings. When I went downstairs to kiss my mother goodbye, she said, You are so beautiful.

 Since she died, no one has ever said those exact words to me.

Her last January wasn’t cold. My mother bought me a black pea coat at an Annie Sez on Reisterstown Road. I wore it all winter, through April, when she died. I wore it to her funeral, to the pool the first time I left the house after the funeral, to the grief counselor I saw in those early weeks when I thought grief was something I could work through, then overcome with enough effort. Like turning a C- in Algebra into an A. I wanted an A+ in grief management.

I still have the pea coat. I can’t remember the last time I wore it.

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Twelve years after my mother died, I posted her photo on Facebook.

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It’s a photo that startles some people. We look so much alike.

I wrote, “My beautiful mother died twelve years ago today. She left me her courage, her hope, and her heart.”

A woman I don’t know well wrote that I’d made my mother proud. Then she wrote that I needed to move on.

“There is no moving on,” I wrote back. “There is memory. There is grief. There is love.” But she didn’t respond.

A woman I worked with at the time told me she thought I’d handled the comment well. I agreed.

I didn’t tell her how sad I’d felt when I’d read the woman’s words. How they hit me like icy rain. How I felt like I was getting an F in grief.

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This week, I was walking the windy alley between my garage and house, and I had this thought: In April, my mother will have been dead 15 years. Then I had this thought: By the time I have a baby, she could be dead for 16 years. Or 17.

I have these thoughts even though I meditate, practice Yoga, have a job I love, a house in a great neighborhood, a husband who is devoted to me. I am not ashamed of these thoughts. My mother has been dead for nearly 15 years, and I think of her each day.

She has never seen my college diploma. She has never met my husband. She has never held her grandchildren or known me as professional woman.

I have held all of her grandchildren within hours of their births.

My mother has been dead for nearly 15 years, and I have not moved on.

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I had a cold this week. On New Year’s Eve, I crammed onto our couch with Carl, our two rescue dogs, and my mother-in-law. One dog rested on my lap, the other nuzzled my shoulder. My mother-in-law cross-stitched, while Carl and I watched “Bunheads.” I texted with my friend Anne, then went to bed a little after 9 p.m. I am still not feeling well.

Each morning, Carl asks if I’m feeling better. I have felt pressured to feel better, even when I’m feeling pretty awful. So I say, “Yes,” because I don’t like disappointing people. Also, I want to be optimistic.

I say, “Yes” even though I spent all of Thursday in bed and keep waking at 4 a.m. because my throat hurts and I can’t lay still any longer.

Still, I rallied on Friday. I washed my hands for two minutes. Then I made carrot-ginger soup, and latkes from scratch. I made crab cakes for my mother-in-law. We had a beautiful dinner. So far, no one else has gotten sick.

My mother taught me how to get out of bed, no matter what. She taught me how to get dressed, put on makeup, and go out, even if I felt unwell.

She wore mascara each day of her life. Even on her last day. She never left the house without blush or lipstick.

I wore mascara when I made latkes on Friday. No lipstick.

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I will spend part of January in Arizona. I will visit the Sonoran Desert, one of my favorite places on earth. I will visit my grandmother’s grave. I will wear a red dress I bought in New Orleans and dance at a wedding.

I first visited the Sonoran Desert in 2006. I stayed at a monastery. It was the first time I’d ever seen saguaros, and I photographed them obsessively.

I only stayed a few days. I was not a good monastic. I broke rules. I snuck Carl into my room, then junk food and fashion magazines. I wanted to be outside, in the desert, not silenced by prayer.

In my room, staring out at saguaros, I wrote in a journal I’d given my mother. She’d never written a single word.

I minored in creative writing in college, and used to write short stories. I wrote one short story the year after my mother died, then stopped. I’d begin another short story, but could never finish. It was as if all the words that lived inside of me died with her.

Yet, in the desert, the words came back. And I kept writing after I came home. I filled composition journals, spiral notebooks, and steno pads. I wrote on napkins and index cards. Only this time, I wasn’t writing fiction. I was writing about her and me. I couldn’t stop. Why would I? When I wrote about my mother, I brought her back to life.

My New Year’s resolution in 2016 was to write every day, and I did. I published more essays about my mother, and I started this blog on Mother’s Day.

I plan to keep writing every day in 2017. It’s the only way I can fully honor my mother’s legacy and all she gave me. Thank you for reading.

We Want to Wish You a Merry Chrismukkah

I came downstairs the other morning to find our Hanukkiah sitting on the living room floor, beside Carl’s work backpack.

How sweet, I thought. He’s getting our Hanukkah decorations out to make sure my holiday doesn’t get dwarfed by Christmas. This has been our routine for a few years. I go crazy making sure all his grandmother’s hand-tatted angels find their way onto our Christmas tree branches. He counts the Hanukkah candles leftover from last year, then orders enough from Amazon to last us through the whole eight nights.

Turns out, I was half right.

Carl retrieved our Hanukkiah for our use, but also to light during the Christmas Eve service at the Unitarian congregation where he serves as minister. For the first time since 1978, the first night of Hanukkah intersects with Christmas Eve.

Most families might not notice this cosmic coincidence, determined by a lunar cycle that means Gregorian dates for Jewish holidays shift yearly. In our family, we can’t help but notice. Carl grew up celebrating Christmas. I celebrated Hanukkah. When we married at my family’s synagogue more than nine years ago, we chose Judaism as the dominant religion in our home.

As if the Judeo-Christian complexity of our December holidays weren’t enough, there’s also the minister issue. This is arguably the busiest time of Carl’s professional year, although he might disagree. All I know is that on Dec. 24, he’s officiating at a wedding, followed by two Christmas Eve services.

He’ll be back at his pulpit by 10 a.m. on Christmas Day, a time when most normal people are unwrapping presents or eating breakfast casseroles. This means we will not eat Christmas Eve dinner together, nor will we have time to unwrap presents on Christmas morning, as we have done for the entire twelve years we’ve been a couple.

On Christmas Day, we’re hosting a lunch for his mother, my sister, her husband, and their three kids, all of whom keep kosher. I will be cooking for hours beginning Friday night. As I peel two pounds of grapes for Carl’s grandmother’s fruit salad recipe, I will no doubt be channeling my Bubbie Fran: Eat. Eat. Eat. This is appropriate because Jews will outnumber Christians by 3 to 1 at our holiday table.

I would be lying if I wrote that I felt at peace this holiday season. The darkest time of year is hard on us. But I’m trying not to get swept up in the holiday crazy, to become aware when I feel consumerism’s pull. Sometimes I get it right. The other day, when a man honked at me near Walgreens, I flipped him a peace sign.

Still, I truly lost it earlier this week when a large package arrived for Carl. He’d ordered himself the exact same monastery made meditation cushion I’d purchased for his Christmas gift. This means it’s Dec. 22, his mother’s flight arrives tonight, and I still don’t know what I’m getting the man who wants nothing for Christmas. (Lump of coal? Lump of coal?)

Still, it’s amazing to me that I even have money to purchase holiday gifts. I grew up in a family where money was scarce, and sometimes I didn’t know if I would receive presents on Hanukkah. They were always small gifts, always something I needed. It goes without saying, but I’ll say it anyway: I wish I’d cherished everything my mother ever gave me.

Now my mother-in-law lavishes me with gifts, which she wraps in Hanukkah paper. She spoils me beyond words, and I appreciate her consciousness at a time when it’s 100 percent more likely that the receipt checker at Costco will wish me a “Merry Christmas” instead of “Happy Hanukkah” or miracle-of-miracles Chanukah sameach.

My mother-in-law still lives in the small South Carolina community where she took her son to a big steeple Baptist church a few times a week. Where she finds Hanukkah wrapping paper, I will never know. I do know that I’ll be making her and Carl blueberry blintzes for breakfast on Christmas Day, before they scurry off to church. (Thanks, Bubbie Fran.)

I also know we create refuge by sharing in each other’s traditions, rather than foisting traditions on each other.  I still do not know how to live without shouldering other people’s expectations. But that’s what New Year’s resolutions are for.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Meeting the Dead in Dreamland

“One does not become enlightened by imagining figures of light, but by making the darkness conscious.” – Carl Jung

I woke up at 3 a.m. from a nightmare that my sister’s infant son had gone missing. It was a terrifying dream, full of caves, masked men, and all consuming darkness. In the dream, we never found the baby, but I searched for him until I awoke to heart palpitations. Then I couldn’t go back to sleep. My mind wandered to the worst, worst case scenarios I could imagine, to the kinds of unfathomable losses that no one ever wants to think about. The kind that I cannot even bring myself to write.

You see, I’m afraid if I write them down, I will make them real.

The thing about surviving an earth shattering loss is that it opens you up to the probability of future earth shattering losses. Nothing is safe. Nothing is permanent. Nothing lasts forever. Death traces a shadow across every good thing. Even happiness feels false. You learn to distrust joy. You learn to distrust peace. Life can feel like a never ending production of “Hamlet,” which (big surprise) is the play that formed the basis of my master’s thesis.

Before I did my MFA, I immersed myself in what is arguably the most depressing literary text ever written, a tragedy centering on two children maddened by grief. I was obsessed with Ophelia –– motherless, fatherless, suicidal Ophelia. I, too, was a little mad at this time. I was afraid of everything. Driving at night. Rain. Walking from my car to our house. Most of all, I was afraid of Carl’s death. I thought about it all the time. What would I do if he died? How would I cope?

I needed the answers to these questions because I needed to know I could survive beyond him. I read “Hamlet” and wrote about Ophelia for hours each week. Still, I wasn’t soothed. If Carl was late coming home, I convinced myself he’d been in a car accident. I’d call him repeatedly until he answered the phone –– perplexed, but patient. Sometimes, I’d awaken in the middle of the night just to check that he was still breathing. Sometimes I still do.

But, at a certain point, it’s reckless to allow fear to pollute the present. At a certain point we have to live our lives. At a certain point, “Hamlet” stops being fun and starts being a depressing tragedy that the students I now teach don’t want to read. So I started writing about my own grief, and about my mother.

On the page, I found I could resurrect her. I could bring us both back to life. I found a therapist who taught me how to recognize intrusive thoughts, and how to distinguish catastrophic thinking from reality. I recommitted myself to the meditation practice that has sustained me for the past decade. I found my way into an MFA program and kept writing my way back to my mother, which ultimately saved me.

Yet, death still haunts my dreams.

Last night’s dream was the second baby dream I’ve had in a week. The first dream goes like this: Carl and I awaken to cries coming from a back bedroom of our house. We find a boy –– presumably our son –– standing in a dark room. He’s wailing and holding tiny hooks in his hands, the kinds of hooks that we use to hang our Christmas tree ornaments. Given that we’re currently childless, I’m astounded to see this beautiful, blonde boy in our home. But removing the hooks from the boy’s hands feels like a life-or-death situation. I’m terrified he’ll swallow a hook. I’m only a mother for five seconds, and already I’m afraid of losing our son. Already, I’m thinking of all the seemingly innocuous things that can kill him.

In the dream, panic swept over me. It wasn’t an omygod I’m-not-ready-to-be-a-mother! kind of panic. It was an ohmygod my house is a death trap! kind of panic. And now I’ve had a second child loss dream.

Carl spent years studying Jungian dream work. He’s meditating right now, but If I interrupted him, he’d probably tell me that the lost child –– or the almost dead child –– stand for a hidden aspect of myself. Some buried subconscious fragment is breaking through to the surface. He’d say the panic connects with the difficult emotional work of knowing ourselves, of being truthful about who we are and what we want in life. There are no answers in dream work, only questions. But I think he’d also tell me that darkness cannot be separated from light, that facing the darkness is what makes us truly conscious.

I interpret the dreams from the edge of mother loss. A mother who loses a child never stops being a mother, but that implication is unavoidable, and it complicates the grief that mothers who lose children feel.

My grandmother lost two children. The first loss was her firstborn infant son, who died at four months. The second loss was my mother. She died on April 7. Three years later, my grandmother fell into a coma on that same day. She took her last breath on April 8.

I was with her when she died. I spent the entire day holding her hand, reading Rumi to her because his words felt like the only appropriate response. Watching her die made me less afraid of death, more open to the beauty that can arise from our most feared moments.

I read to her from “Say I Am You”: I am all orders of being, the circling galaxy, / the evolutionary intelligence, the lift, / and the falling away. What is, and what isn’t. The poem’s images focus on interconnection, on how we are all dust and sunlight and stars, on how everything that is alive comes from what is also dead.

One of the greatest gifts of my sister’s children is how they bring the dead back to life. My mother is dead, but she continues to live through this genealogy. My sister and I both resemble her, but I can’t see her features in us the same way I can see them in her grandchildren. My eldest nephew has her smile and sense of humor. My niece has her courage and strength. My dream child had her eyes. Even in the darkness, I could see them clear as day.

The Darkest Time of Year

I never liked Thanksgiving. One year when I was home from college, my mother humored my holiday angst. She made salmon and lentil soup because I didn’t eat red meat or poultry. Then she let me stay home from a family gathering. I told her I hated celebrating the European colonization of the United States, that it felt like celebrating Hitler’s election to chancellor. When I shared this information with her, she sat us both down on the white couch in her living room. She looked me straight in the eyes and said, “The holidays are about family and for being grateful for what you have.”

A year later, we celebrated her last Thanksgiving, although we didn’t know it at the time. This was the first and only time I ever cooked with her during a holiday. I don’t remember everything we made, just how comforted I felt to be with her in the kitchen. How safe and peaceful I felt beside her. I wish I could say I savored the moment, that I felt grateful. But, I didn’t know she was dying then. I was only 20. I thought assembling a salad from a bag mix, then adding raisins and chopped apples, was a high culinary achievement. The moments that passed between us are only special in retrospect.

Since her death, I have wanted to avoid Thanksgiving altogether. I have spent it abroad. I have spent it alone. I have spent it playing Monopoly and eating Thai food with my husband. I have spent it hiking in Shenandoah National Park with our two dogs. In this way, I may be dishonoring my mother’s legacy, since I often choose to retreat from family and tradition. But family gatherings stress me out because I focus on what is missing, on her absence. It’s easier for me to do my own thing, then to embrace other people’s expectations of what the holidays should be. I’m happier this way. I am more honest about myself.

This year was harder than I expected. I agreed to participate in a traditional gathering at my aunt’s house because I am grateful for her. She’s had a rough year. I wanted to support her. I texted my father on Thanksgiving to wish him a happy holiday. He called me a few seconds later and talked at length about everything going wrong in his life. He never asked, “How are you?” He never asked, “What must it be like for you to celebrate holidays without your mother?”

My mother raised me. After she left him, he beat her in front of my sister and me. For many years, she was my only parent. Despite our past, I love my father dearly, primally. Relationships are complex webs. He has worked hard on himself. He is not the person he used to be. I know these past few weeks have been horrible for him. But I have felt triggered by my father during this election. He supported Donald Trump, which makes me feel unsafe, and brings back memories of past abuse. On Thursday, I also felt abandoned and irritated by his lack of empathy. I talked to my husband about it, then I made mushrooms and polenta and drove to my aunt’s house. I spent most of Thanksgiving holed up in a bedroom with my sister, who needed to nurse her infant son, also known as My Precious. Still, my bad mood lingered over the weekend. I do not begrudge anyone their holiday cheer. Right now, I’m focusing on getting through the holidays.

That said, I seek comfort during this darkest time of my year by remembering my mother’s emphasis on gratitude. This is how I lift myself out of sadness. This is how I honor her. I have tried keeping gratitude journals, but I always forget to write in them. (There is still a gratitude journal from 2009 sitting on my night table). So I pause each day to consider something for which I feel grateful. Some days, I have to dig deep. On these days, I am grateful for working radiators and leftovers in the fridge. Other days, I am grateful to live within driving distance of my sister and best friend, who have seen me through the worst of my grief. This weekend, I felt grateful for Carl. We spent all of Friday watching “Gilmore Girls: A Year in the Life” and he knows the show better than any of my friends’ husbands. He even predicted the ending, which I didn’t like. Still, I am grateful for a husband who can spend 20 minutes discussing why my dream ending is more feminist than the actual ending.

I am also grateful to have found a doctor who identified the underlying hormonal imbalances causing my Hashimoto’s. I’m grateful for his hope that I will be able to conceive and sustain a pregnancy after one year of treatment. Always, I am grateful for my niece and nephews, who continue my mother’s legacy in ways she never imagined. Most of all, I’m grateful to have been her daughter.

To Gerda

This week Michelle Obama spoke out against the Republican nominee for president, and his alleged sexual assault of women. She implored Americans to “get on social media” and share “your own story of why this election matters, why it should matter for all people of conscience in this country.”  This blog post is inspired by Obama’s New Hampshire speech and “Dedicate Your No-Trump Vote”  a website created by novelist Julianna Baggott. I’ve been reading posts daily from writers, humanitarians, clergy, and other extraordinary citizens. They are responding to hatred with hope and demonstrating the power of storytelling in shaping a compassionate America, the America I know, and the America my mother believed in. 

I wasn’t supposed to read the letter. My mother kept it in a dresser drawer, tucked beneath her sweaters. Those sweaters still held her rainwater scent even though she’d been dead for a week. I was 21, alone, and desperate to find my way back to her. I wanted to understand how a juvenile diabetic could die while wearing an insulin pump. I needed a clue, an answer to this impossible question. But what I really wanted was my mother returned to me, as if her death had been a misunderstanding or bad dream. I thought I could find her in the possessions she left behind. So I rifled through her drawers, until I came upon the letter.

My mother had typed it in 1998, four years after an experimental organ transplant saved her life when I was 13. In 1994 surgeons placed a dead man’s kidney and pancreas inside her body. The surgery suppressed the effects of juvenile diabetes on her kidneys, which had begun to fail. She’d suspected her donor was a man she’d read about in The Baltimore Sun. He’d withdrawn $50 from an ATM after leaving work late. An unknown assailant knocked him to the ground, left him dying as night faded to dawn. He was not a registered organ donor. It was his mother who said, “yes” when hospital staff asked. Amid her grief, this mother thought of other suffering families. She thought of how her son could live on in another person’s heart or corneas or kidneys. She thought of the hope he could bring to people she would never know. She did the extraordinary. She shared her child with strangers. Her name was Gerda, by the way.

The letter I found beneath my mother’s sweaters was the first letter she sent to Gerda. I’m not sure why my mother saved a copy, but I am not surprised she reached out to connect. Gerda’s loss of her child was the worst thing my mother could imagine, even worse than dying before her own children. She needed to share her gratitude. She needed to say, “thank you” for Gerda’s generosity, which allowed my mother to live seven years longer than she’d expected, allowed her to mother my sister and me.

In that time, a friendship bloomed between these two mothers. I remember cards coming in the mail, and long phone calls. I remember how my mother exclaimed, “It’s Gerda!” when the name flashed on our caller ID, as if Gerda were a member of our own family.  When I deleted my mother’s e-mail account a few months after her death, I discovered an e-mail from Gerda. I don’t remember what the e-mail said, only that I replied. I delivered the bad news, then shut down my mother’s e-mail forever. I did not reach back out to Gerda until 2011. I wanted to understand her generosity. I wanted to know her story. I needed to thank her too.

Like my mother and me, Gerda was Jewish. She lived in Berlin when Hitler came to power in 1933. Her family fled Berlin for Holland in 1939, never imagining that Nazism would trail them across the Continent. After Holland fell to Nazi occupation, a clergy family hid Gerda in the countryside. At night she slept in the forest, not knowing the whereabouts of her own family, not knowing if she’d survive the night. Her parents died in a death camp, but Gerda avoided imprisonment. She emigrated to the United States after the war, attended college and graduate school, began her own family.

I often think about what would have happened if Gerda hadn’t survived, if she hadn’t encountered strangers willing to risk their own lives to protect a denigrated class of people –– my people. Would my mother have died at 41 instead of 48? Who would I have become without her to raise me? My mother believed in miracles –– she thought I was a miracle. She thought her entire life was one continuous miracle. She thought Gerda’s survival was a miracle. I believe in interconnection. I believe one action affects another action in a great, unknowable continuum. I believe kindness ripples through our lives, across generations and decades and continents. I believe Gerda’s experience of being saved by courageous people lit the spark that allowed her to save other lives many years later. This is why I dedicate my No-Trump vote to her, to Gerda.

Today, when I hear a presidential candidate talk about banning Muslims, or deporting undocumented people, I think of her. When I read of first-grader Abdul Aziz being beaten on the school bus for being Muslim, and his family fleeing the United States for Pakistan because they no longer feel safe here, I think of her. When I read of hate crimes against Muslims escalating, I think of her. When I hear a presidential candidate stumble over denouncing David Duke and the Ku Klux Klan, I think of 1939 Berlin. And I think of Gerda’s family escaping to Holland.

When I hear white supremacist hate speech normalize violence and sexual assault and the torture of human beings, I think of Gerda. I think of her separated from her loved ones, hiding from the unimaginable. I think of her sleeping in the woods, wondering whether her parents were alive or dead, not knowing if she would survive the night. I imagine her heart opening in that darkness, her face turning toward the stars’ distant light. Even in her most terrifying moments, she knew the saving power of kindness. She knew only hope can conquer fear.

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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