Tag Archives: autoimmunity

Waiting

My mother waited more than 1,000 days for her organ transplant. She went from 39 to 40 to 41 while she waited. On her hip, she wore a black pager that would beep when her organs “were ready.” This was the expression she used, as if her organs were a steak sitting in the oven, not quite pink enough to eat. I realize that’s a gross image, but it’s what occurs to me when I remember the absurdity that was, at the time, so very normal for all of us.

Her organs were ready on June 6, 1994, the tail-end of my seventh grade year. That summer, I listened to Nirvana nonstop and wore a flannel that belonged to my best male friend. I wore the flannel as we drove to the hospital – no school for me that day! – and the chorus of “Heart-Shaped Box” rattled around inside my head. Hey! Wait!

I barely understood the song. What was the “broken hymen of your Highness?” But Hey! Wait! I got that. Those two words meant exactly what I felt as we raced toward Baltimore.

They meant a thing and its opposite could be true at the same time. Hey! Wait! And I was stuck between a thing I wanted, which was also the very thing I didn’t want.

Hey! I did want my mother to have an organ transplant because she’d die without one.

Wait! What if she died in surgery or right after?

I’d seen “Steel Magnolias.” I knew the organ rejection drill. My mother’s match wasn’t perfect. Anything could happen. I could have a mother in the morning and be motherless by nightfall. This knowledge was the one true fact of my girlhood.

Hey! Wait! Don’t feel bad for me. I don’t feel bad for me.

________

A few weeks ago, I drove past the hospital where my mother had (and survived) her organ transplant. Each time I drive past this hospital, I go back to June 6, 1994, to Nirvana, to the flannel scented with Polo cologne, to the wild ambivalence of those moments.

Ambivalence. I used that word incorrectly for years. I used to think ambivalence meant not caring enough. Do you know most people use ambivalence incorrectly?

But “ambivalence” comes from two Latin words. The first, ambi, means “both or on both sides.” The second, valentia, means “strength.”

Put those words together and you have ambivalence. It means caring too much on either side of an issue, and being unable to choose because feelings are equal on both sides. You want and don’t want the same thing.

That’s where I was on the day of my mother’s organ transplant. That’s where I am now, nearly a year after my miscarriage and seven months into antibiotic treatment for late-stage Lyme disease.

If you asked me last summer whether I wanted a baby, I’d have screamed YES. I was so ready, so certain, so sure by the time I got pregnant, incidentally the first time I tried. At 36.

What great luck I had! How dumb my doctors had been! So glad I’d used birth control pills and insisted on condoms all those years! Phew.

The gynecologist who did my first ultrasound raved about my uterus. She used the word luscious. I did everything I could in that moment not to laugh until I peed the pants I was not wearing. But I also took pride in her comment. Despite how mysteriously ill I had been, despite the sudden autoimmune thyroid disease that depleted my once boundless energy, my body could do something right.

Until it couldn’t.

________

I did three things when I realized I was miscarrying. I apologized profusely to my husband, who was asleep because it was 1:19 a.m. He did not think I had anything to apologize for and did his best to console me in his half-sleep, half-shock state.

But my body had failed in the worst way it could fail. And I was guilty, because it was my uncontrollable body that had rejected a pregnancy we both wanted. So I said I’m sorry over and over again, until I finally went downstairs and did the second thing. I made myself a cup of peppermint tea because that was all I could do to keep myself from screaming.

The third thing I did was call my mother-in-law once the sun came up. I told her my miscarriage made me realize how very much I wanted to be a mother. No more second guessing. No more doubt.

Why wouldn’t I want a child? I had an incredible mother who mothered me in lasting ways that allow me to be generous and patient and kind. My students even tell me I’d be a great mother. I know I should hear that comment as sexist, but I take it as a compliment. Because they’re right. I have all the qualities needed for masterful mothering. Anyone can see it.

And yet, there’s another side of the choice.

There’s the body that doesn’t seem to work the way it used to.

There’s seven months of antibiotics and no end in sight and arthritis in my hands.

There’s relapse.

There’s the 30 pills I take per day.

There’s my thirty-seventh birthday that passed in February.

There’s thirty-eight on the horizon.

There’s the choice to wait.

The thing about waiting is that it’s the closest thing we have to purgatory on earth. Torture, and not quite torture. When we’re waiting, we want the waiting to be over, and we focus our attention on an end. We believe the end will be better than the waiting. But after an end is reached, another waiting will come, and the next waiting after that. And on and on.

Our lives are thousands of days of waitings.

And yet, I’ve chosen to wait. I’ve chosen to be ambivalent. I’ve chosen to say the word I now understand at the core of my heart: ambivalence.

I take the word the apart.  Let it enter me. Leave me.

________

I’ve told all my doctors not to discuss pregnancy with me, and I’ve found an endocrinologist who will treat me during pregnancy with the medications I need, but that no other endocrinologist will prescribe in pregnancy. Incidentally, he is the endocrinologist who treated my mother and recommended her for an organ transplant.

The day I sat across from him at his desk, I was all grown up. A college professor. A woman with health insurance and a home of her own. He didn’t remember me as the little girl who used to wait in his lobby or run down the hallways.

He remembered my mother. Of course he did. How could anyone forget her? I saw him on June 6, 2018, a detail that was coincidence but felt like magic.

I am happy as a childless woman just as I could be happy as a mother. How fortunate I am that happiness awaits me on either side of my most difficult choice. Hey! Wait!  Two opposite things ring true. Like on the day of my mother’s organ transplant. Like right this minute.

 

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.