Category Archives: advocacy

Not Everyone Will Like You

First grade was hard for me. We moved to a new neighborhood, and I started first grade at a new school.

I’d finished Kindergarten at a Jewish nursery school in Baltimore, and I read way above grade level. I also read on the bus, at the bus stop, and under my desk in class. When other kids played outside, I stayed inside to read.

Another girl started teasing me. She called me a bookworm and told other kids to do it too. Bookworm! Bookworm! They yelled. I cried about the whole thing to my mother.

Here’s what she told me:

“Not everyone will like you. There’s nothing you can do about it.”

She said these words simply, with no explanation. She did not tell me that these children were wrong not to like me. She did not tell me I was wrong for wanting to be liked. She simply spoke the truth as she understood it.

Not everyone will like you.

Of all the things my mother ever told me, these words are among the most important. She freed me to be myself. She freed me to not waste time winning over people who were never going to like me. She freed me from good girl conditioning that leads to the toxic trifecta of people pleasing, repression, and resentment.

Still, I didn’t learn the lesson immediately at 6. That day, I sat on her lap, while she ran her fingers through my hair. I breathed her Youth Dew. I sobbed into her dress with the floral collar.

I said, “Mommy, why won’t they like me?”

“They just won’t,” she replied.

I wanted everyone to like me. Sometimes I still do. But I also know that likeability is a trap for women. And I am coming to believe that my health depends on risking not being liked.

________

This has been a hard week for me. I had lab done work last Friday. My endocrinologist’s office left a vague voicemail message on Tuesday, asking if I could come in as soon as possible. (Don’t you love those messages?)

Short story: my TSH is increasing, even though my endo upped my dose of Levoxyl in December. My TSH has been increasing since I started Levoxyl in September. After six months, my TSH is still too high for me to safely sustain a pregnancy. My body is not responding to one of two medications I can take to treat this condition. My choices are limited because the widely prescribed meds contain ingredients like gluten and sugar that are not safe for me.

I turned 36 on February 16. My window of fertility is closing.

I received this news at work because that’s where I spend most of my time. I closed my office door. I texted some relatives and friends. A few wrote back. A few haven’t. It’s hard to hold other people’s bad news. It’s hard to face the truth that not everything works out in the end. Not every illness can be remedied.

Before class, a colleague asked me how I was doing. We were casually chatting in the bathroom. I told her the truth about the news I’d received. I said, “I know a lot of people say ‘fine’ when asked that question, but I’m not feeling ‘fine’ right now. I’m sad.”

I risked not being liked for being an oversharer. I risked her potentially saying, TMI and dismissing me. I risked her potential silence.

She said: “That’s what I love about you. You say what’s actually on your mind.”

I am so grateful to work with women who have the emotional capacity to be present to one another in times of distress. I am so grateful to work with women who do not hide who they are.

________

Last week I also spoke up about an ongoing issue at my gym.

Short story: I’ve fallen in love with Spin. (Spin is the best thing ever!), and I love my spin instructors. I am steadily increasing muscle mass while decreasing fat because they push me.

But something is happening to make me feel irritated, annoyed, and bitter in Spin. This something is this:

Class members are engaging in behaviors that gym policy doesn’t allow. They’re getting to class 15 to 20 minutes early, saving bikes with towels or other personal items, then leaving the room, sometimes entering late to mount a “claimed” bike. These behaviors appear entitled, even if that’s not their intention. These behaviors might not bother most people, but they bother me. I perceive them as unfair. I perceive them as degrading shared community space.

I needed to speak up about my feelings because repressing emotion negatively affects me. I’m also afraid it is affecting my thyroid health. This is not magical thinking. Countless studies support that stress adversely affects autoimmune conditions. My thyroid is located in my throat, the seat of my voice. I believe self-silencing damages me.

This morning, a person with the power to enforce gym policy told me that people would complain once the policy was enforced. They wouldn’t be happy. They might not like me. (Because I publically removed gym towels from a bike this morning, I will likely be known as the instigator of the policy’s enforcement.)

I said, I understand. I don’t care if people like me.          

 And I really meant it. I truly did not care. This doesn’t mean I’m not a compassionate or empathetic person. I care deeply about other people’s thoughts and feelings. But I can hold my own truths alongside those of others, even when our truths contradict. I know disagreement does not necessarily equate with delegitimization.

My mother’s words, spoken so long ago I barely remember them, came back to me this morning, as I left Spin. I thought of how her voice, which I can no longer remember, still instructs me, still shapes and forms me.

Not everyone will like you. There’s nothing you can do about it, I thought, as I walked to my car, buoyed by relief, feeling pressure in my chest dissolve. Feeling free.

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.

 

Blogs That Have Helped Me The Most: 

 

Books That Have Helped Me The Most: