Category Archives: advocacy

My Body Doesn’t Lie

Living with late stage Lyme disease is like being on bad drugs. I hear phantom sounds, smell phantom scents, get paranoid: Everyone hates me. Everyone thinks I’m weird or stupid. People say words to me. I hear them. I don’t always understand.

It’s excruciating to be a writer and to hear words floating by, and to be unable to grasp them.

In a meeting this week I said, “I’m having trouble following the thread,” which is a poetic way of saying, “I have no clue what all of you are talking about.” And I thought I saw someone in the room make a suck-it-up-stop-complaining-face at me. I don’t know if I imagined this, or if it’s part of my Lyme paranoia, but I felt shamed and embarrassed. Like I was being weird again & weirding people out. Like I should minimize my own needs for the sake of other people’s comfort.

There is another story of who I am.

That other story goes like this: I am a good friend and a patient teacher. I am smart and strong. If you tell me something hard, I will listen to you. I will protect your confidence. I will help you. I will not judge you or manipulate you with fear or anger.

Even on my bad days, I get a ton done. I support my students because they are everything to me. I take pride in the fact that I’m an overachiever, even as I recognize the multiple problems in that sense of pride. I don’t want to tie my self worth to my achievements, and I have been conditioned to tie self worth to achievements.

Lyme disease took away friendships, child bearing years, energy, hope, trust.

But it didn’t take away my ambition.

Ambition kept me going. Ambition made me fight hard for myself.

________

In December, I started one course of long-term tetracycline antibiotics. My primary care physician added another antibiotic at the end of that month, and I improved drastically. My Lyme specialist added a third antibiotic in February, and this is standard: late stage Lyme disease requires treatment from separate classes of antibiotics. Nothing has helped me more than multiple antibiotics and eliminating gluten from my diet.

Seeing myself respond to treatment is reassuring and counters the effects of gaslighting I experienced in other medical settings, where doctors dismissed and disbelieved my symptoms.

And I can’t stop talking about this shift, which I suspect is starting to annoy to some of my friends. Because I was silenced for so long, I have become the person who can’t stop telling the same chaotic story over and over again. I can’t stop talking about myself.

My story goes something like this: When my symptoms first presented in July 2013. I went to the emergency room, and I was not seen that night even though I could not stop vomiting. I never vomit, like not even when I have a fever. I kept saying something was desperately wrong, but a nurse said I probably just had “a little virus” (in the middle of July).

Staff placed me in a hallway so I would not distress other patients. I fell asleep. I stopped vomiting. I went home, and felt like Hell for weeks. A blood test showed irregularly shaped red blood cells, which I now know is a telltale symptom of my most pervasive Lyme co-infection: Bartonella.

I took four lessons away from this experience.

Lesson 1: Women who vomit uncontrollably are not sexy. We must, therefore, be hidden, ignored.

Lesson 2: Authority figures who dismissed my illness made me question my sanity, my sense of reality. I believed them at my peril. I believed their myth of okayness because I wanted to be okay, and on the outside I looked okay.

Lesson 3: My body doesn’t lie. I’m learning to listen to what my body needs to tell me. My body can be trusted.

Lesson 4: There are excellent doctors & there are super shitty doctors. Do not excuse or minimize the behavior of a super shitty doctor. Believe you can do better. Believe you deserve better, and you will find better. Get out of that practice, and don’t look back.

________

When I wake up and run three miles, when I vacuum my house after working all day, I know a somatic shift has happened. I know I can trust my perceptions of reality. My narrative is valid.

Right now, I am having more good days than bad days. I can grade a big stack of essays, and I can focus my full attention on my students. They get my best energy. And this is why I meditate regularly. I need to bring attention and compassion into my classrooms. My students deserve my best energy. They deserve patience and compassion and generosity.

But, when classes are over, my brain is fried. I am frazzled.

If I rest, I bounce back.

If I don’t rest, my brain melts down.

Resting isn’t always an option. I work in the real-world, and I care about doing my job well.

So I’m learning how to “rest” inside the jumble. I’m learning how to bring my meditation practice into every area of my life. And this is another story that is true about me, a story of resilience and adaptation.

One of my friends is a Yoga instructor, and he has been kind enough to practice Yoga with me each week. He gives me instructions, and he knows I don’t always understand what he’s saying. He knows when I’m not following the thread, and he supports me until I figure it out. He never makes a mean face or rolls his eyes or mutters something rude. He doesn’t gossip about me.  Sometimes he has to stop his practice in order to help me, and each time he reassures me that it’s okay for me to not know what’s going on. He trusts that I’ll figure it out, and I figure it out.

This is what compassion looks like.

In order to have faith in ourselves, we need others to place faith in us.

________

This week, I had a terrible day. Most people around me did not know I was suffering. My friend Anne knew, and she helped me. I made it home, and Carl was there, and he helped me. And my amazing Mayo clinic trained Lyme doctor saw this coming. He had already shifted my meds, so that as soon as I needed them, I had them. Carl ordered dinner, and we ate. I took my meds. We watched Netflix. I fell asleep. And the next day, I was okay. I bounced back.

Writing those words terrifies me, and makes me uncomfortable. The image of a person “bouncing back” is inherently ableist. I am not cured or recovered. I will always have this disease, and it sucks. When I write, “I bounced back,” what I’m saying is that my treatment is working, and I am functional. What I’m saying is that setbacks are not permanent. What I’m saying is that recovery is also impermanent.

And there I go again, repeating the same story.

I’ll stop telling this story once medical communities, once society, starts listening to women, starts listening to the stories we tell about our bodies.

I’ll keep telling this story because it matters, because it needs to be told.

To All the Attention Seeking Drama Queens

In January 2002, my mother learned her transplanted kidney had begun to fail. She began dialysis. We spoke on the phone each night, and I visited her as often as I could. The mother I had known, the jubilant mother, grew depressed and fearful.

I offered to undergo a test that would determine whether one of my kidneys could be transplanted into her body. I was 20-years-old. She begged me not to have this test. She didn’t want to do anything that could compromise my chances of becoming a mother.

That is how much motherhood meant to her. She was willing to die in order to prevent me from making this decision. And she had hope. She hoped someone else in her family would come forward.

To my knowledge, no one did.

I write those words with tremendous anxiety of how they will be read: No one did.

My mother’s story is complicated. Perhaps someone came forward and she never told me?

Even so, she could not survive another transplant. Her death was inevitable, and within months of undergoing dialysis my mother began to accept this reality. For the first time in her life, she rejected the false narratives of cure and recovery so often projected on the seriously ill.

But I still harbored delusions. I called delusion hope. I pleaded with members of her family to understand the seriousness of her situation. I wasn’t ready to give up, to let her go. I believed she could recover, as she had recovered so many other times before. Others did not believe my mother was actually sick.

A relative told me my mother was exaggerating.

She said, “Your mother is a drama queen.”

She said, “Your mother likes attention.”

My mother was not a drama queen. She lived with a debilitating chronic autoimmune disease from adolescence through middle age. She was beautiful. She was sick. Because she was beautiful and sick and female, she fell prey to cultural biases that fail to acknowledge serious illness in young women. When people looked at her they saw pretty. They saw young. They saw stylish.

As my mother’s health deteriorated, I ignored her pleas. I had the test done. It was a simple blood draw – I barely remember the needle prick. In the blur of her multiple hospitalizations, and my struggle to perform normalcy as our lives collapsed, the test was not a big deal. Just one more errand.

My results came back after she died: I was not a good match. My kidney would not have saved her.

I was off the hook. I’d tried. She’d known I’d had the test. She’d known I was willing to give her a vital organ, even if that choice compromised my ability to become a mother. She knew I believed her. I had not abandoned her.

I’ve been remembering this time in our lives recently because of my own experiences of not being believed about illness in the past few years. I have also felt abandoned by friends and family who do not communicate with me in meaningful ways about Lyme disease, for which I am still being treated  — and this treatment takes a physical and emotional toll. To many, it is as if I am not sick at all, as if my illness does not exist because I present as able-bodied.

Is my illness easy to erase because I am young and female? Or because I am capable of holding down a job and publishing writing, so I cannot have a serious illness at the same time? Or is it because I typically do not perform a sick identity on social media?

Or maybe, I’ve just needed too much, and my needs are exhausting. Autoimmune disease. A miscarriage. A broken foot.  And then, out of nowhere, Lyme disease?

Maybe I am now perceived as the attention seeking, drama queen.

But I am not an attention seeking drama queen. Attention gives me anxiety. And drama?  Who has time for that?

Fatigue from Lyme disease and my current treatment plan means a lot is changing in my life. I cannot engage in relationships in ways that are expected of young women. No late nights. No long drives. I have to say, “No” a lot. Perhaps my “No” is heard as disinterest and not as self protection. Perhaps people think I don’t like them.

My mother gave me tools I would need to navigate chronic illness in my own young life.  She taught me I could say the word ill and the word did not have to be a negative, a reduction, something to resist or erase. Even now, she is present. She is parenting me when I need her the most, showing me the way.

Long ago, she told me illness would distill my relationships.

“You will know who your friends are,” she said. And she was right. I am figuring out who I can depend on and who I should let go. I am asking myself new questions.

Who will I become? How will illness change me?

That’s the keyword. Change. Lyme disease has remapped my body. I have no delusions of cure, of going back to who I was before. Healing is a complicated idea, not a portal to our past selves.

As Cheryl Strayed has written, “Healing is a small and ordinary and very burnt thing. And it’s one thing and one thing only: it’s doing what you have to do.”

What I have to do now is be honest. Be real. Set boundaries and hold tight to them.
Rearrange a life where I’d once felt comfortable. Advocate for what I need. And then, let go of stories, people, goals, relationships, identities, and expectations that no longer support the person I am becoming because I am ill.

This is not about needing attention or being a drama queen or even pessimism. It’s about surviving and reclaiming and persisting.

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.

 

 

Shame Me Never

Once a man stopped my mother and me as we walked from a grocery store to her parking spot.  “What’s your disability?” He asked, pointing to the handicap accessible parking permit hanging from her minivan’s rearview. I don’t remember what my mother said back to him, but it was probably something like “Mind your business.” We both knew he was calling her a liar in an indirect way. His question was an attempt to shame her. This is how people who lack a sense of power exert control. They make a weapon out of shame.

She was 39 when the handicapped permit arrived in our lives, just three years older than I am now. She had no visible wrinkles, no grey hair. She never left the house without bright pink lipstick and Jackie-O sunglasses. She wore red nail polish on her toes. She did not look like a woman who was dying, at least if you think a dying person cannot be young or able bodied or capable of running an errand with her daughter.

But she was dying. Just a year before the parking lot encounter, my mother nearly died from a diabetic insulin reaction in front of me. She would have died had my sister and I not rubbed cake icing on her gums and dialed 9-1-1. We kept her alive while the paramedics made their eternally long drive to our house. We were nine at the time. This was not the first time we saved her life, but that’s another story.

***

When my mother was sick, when she was dying, I never used those words. Sick. Dying. This is not because I was afraid or in denial. It is because I was ashamed. Shame tunneled to the core of my being. Shame policed my language. Shame erased my self esteem. If I ignored shame, I thought I could make it go away. Instead of confronting my shame, I hid in my bedroom and read books about the Holocaust. I read every book about the Holocaust that our tiny library owned. I craved stories of other people’s suffering. I needed to know I was not alone. I needed to know suffering could happen to anyone.

Indiscriminate suffering became the theme of my writing. I wrote stories about girls whose mothers died or disappeared. I wrote these stories until a middle school teacher pulled me into the hallway one day and asked me if I was a masochist. She did not give me time to answer before she told me to stop writing these stories. They were freaking her out. I didn’t stop. I just stopped showing this teacher what I wrote.

Years later one of these stories won a national award that helped me get scholarships for college. My sister saved the story for me. She has always believed in my writing. A few months ago, she found the story and called me to tell me my life’s work is to write novels. But I can’t write fiction anymore. I don’t know why, or what happened to me, only that my inability to write fiction is directly connected to my mother’s death. I wrote one short story the year after she died. It was about a girl who tried to kill herself but survived.

I was the suicidal girl.

I was the girl who did not die.

***

No matter what my mother ate or how many times she tested her blood sugar, she would have an insulin reaction. She could not control her disease. Her disease would not be controlled.

She felt at fault for this dynamic, and she was made to feel this way inside a culture whose dominant narrative of illness employs words like “battle” and “fight” to erase the reality that control is usually the first thing to go when a person is sick. My mother did not battle her disease. She lived it for 35 years. She endured organ damage, organ loss, organ rejection, surgeries, hospitalizations, fractured bones, daily needle injections and blood draws, depression, and anxiety.

When she went to sleep at night, she never knew if she’d wake up in the morning. She wore an insulin pump. It did not save her.

The night after she died, I slept in the bed where she’d taken her last breaths. Her insulin pump beeped in the middle of the night. I threw it across the room. I wanted to break it open. After it hit a wall, the pump fell onto the carpet, completely intact.

­­My mother didn’t get to live in a time when women spoke openly about how shame silenced and policed us. The expression “body shame” was not part of her lexicon. She bought into the myth that her disease could be cured, and she believed her organ transplant was a cure. When her organs rejected seven years after the surgery, she gave up hope. She accepted her death. I do not know if she felt anger or if she blamed herself. During the last month of her life, she was the saddest I had ever seen her. She was sad to the core of her being.

Only a few close friends knew about my mother’s transplant or her organ rejection. Shame kept me silent. Shame kept me from reaching out. Shame kept me isolated. Shame fed my own depression.

***

I’ve had to speak up about my own illness this week. I’ve had to tell a friend and mentor –– and leader on my campus –– that I need to take breaks in order to protect my body from immune system attack. This need may mean that I miss out on opportunities. This need means I am not “leaning in.” This need means that I have to say the word “can’t” even though I’ve been taught never to say this word.

I am an overachiever. I am good at what I do. I am ashamed of myself when I say the word “can’t.”

I feel lazy. I feel like a quitter. I feel like a person who wants to squeak by doing the minimum. I am none of these things, but that’s the power of the word “can’t.” It evokes suspicion and disdain, especially when women use this word to set boundaries. You see, when a woman sets a boundary, there is often a professional cost. We are either shamed by others for setting the boundary, or we shame ourselves.

I’ve decided to stop giving a shit about shame. I’ve decided to take away shame’s power to control me. “Can’t” is not a bad word. Sometimes it’s the word I need to say, the only one that can save me.

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.

 

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