Tag Archives: choices

Difficult Choices

As a younger person, I lived in terror of making the wrong decision. When my mother was still alive, we’d dissect every option in front of me before I had to decide. I’d call her a handful of times a day. Tell her my problem. She’d steer me in the direction she wanted.

You belong here not there. You should do this not that. Make a list. Evaluate.

Hearing her tell me what to do provided tremendous relief. She was my mother. She wouldn’t steer me wrong.

But she was just guessing too. She was relying on her instincts, her biases, her fears, her expectations of who I was and who I should be. She was not teaching me how to make choices on my own, or how to be confident in my ability to discern what’s best for me at a given time. This dynamic is 100 percent normal.

Becoming an adult means learning how to steer your own ship.

No one can predict the outcomes of a choice. Sometimes choices can feel like life or death. Sometimes they are life or death. And yet, we have to decide. We have to go left or right or backwards or forwards or nowhere. We have be uncertain. We have to not know. We have to wonder and guess. We have to Google and stop Googling.

Being human is hard.

A therapist I used to see told me there were “no wrong decisions, only choices.” There’s truth in that statement. It’s also a little bullshitty. There are wrong decisions. We usually know what they are, even if we rationalize them. I’ve made a handful of terrible decisions. Sometimes I regret them. Sometimes I don’t.

I’m being vague in this post because there’s a difficult choice I need to make by summer’s end.

I will not go into the details. I will only share that this decision involves treatment for an autoimmune disease I have developed either as a result of Lyme, or concurrently with Lyme.

Thank you for not asking me for more information. Thank you for not saying “Get well soon.” Thank you for not talking to me about “getting control of inflammation.” My bloodwork shows no inflammation. I have worked so hard at getting control of inflammation.

Thank you for not foisting miracle cures or supplements or prayers on me. I’ve read the studies, the latest books. I’m an expert researcher and a smart person. I can understand and negotiate complexity.

Thank you for respecting my right to process difficult experiences through writing and to make decisions regarding my own medical care. Even though I am overwhelmed by this news and the choice I must make, I trust my ability to steer my own ship.

I do not feel sick. I do not identify as ill. I run multiple times a week at 6:00 a.m. I ride my bike whenever I can. I lift weights and take long walks and marvel at beautiful birds whose names I don’t know.

I visit with friends and binge-watch historical dramas on Netflix. (This one’s so good!) I plan vacations and write syllabi and enroll in classes and work on my book, which I swear I will finish and publish.

If I seem a little bitchy or defensive today, it’s only because I want to share this news. It’s too much to hold on my own. But I also cannot hold how this information is received. I cannot manage other people’s ideas about chronic illness. Being an adult means holding your own junk without spilling it onto other people. Writing helps me keep a tight lid on my junk. Writing helps me remember I am strong.

The last night of her life, my mother and I talked by phone about a difficult decision I needed to make. We talked about her illness too, how she’d started dialysis at a new place.

“I’m going to be okay,” she’d said. That was the second-to-last thing she ever told me. It was one of her last gifts. Hope.

I’ve carried this gift when I’ve gone left or right or forwards or backwards or nowhere without her.

It’s the map I’ve read a thousand times.

It’s the lamp I turn on in the middle of the night when I can’t call her.

It’s the song I listen to when I’m deciding what to do.

It’s the silence between knowing.

And not knowing.

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.