Grief memoirs and chronic illness

Speed reading sad tales, whispering "thank you" for the feelings, and finally writing something about my mom's rheumatoid disease

From January 2nd to January 5th—before I returned to the real world’s regular cadence after New Year’s—I finished a book a day. Three of these reads were “grief memoirs” for lack of a less cringe distinction:

Between Two Kingdoms by Suleika Jaouad about her leukemia diagnosis in her early twenties, the collapse of her long-term relationship as she entered remission, and an emotional-atop-physical journey to find herself traveling the country. (Dog in tow, of course.)

You Could Make This Place Beautiful by poet Maggie Smith about her divorce—or less about her divorce, I should say, and more about how she responded to it, armed with (cushioned by?) words.

And My Wife Said You May Want to Marry Me by Jason Rosenthal, a chronological reflection on life with his late partner Amy Krouse Rosenthal and his growth since she died from ovarian cancer.

I should say right away that my own mom is sick. Not imminently-terminal-diagnosis sick or we-now-live-at-the-hospital sick (and for that I’m grateful; I know we’re lucky). But nearly fifteen years ago she was diagnosed with rheumatoid disease, and it is not going well.

Aside from a poem here or there, I have not known how to write meaningfully about my mother’s illness. It is her story, above all—and in recent years I’ve spent more time apart from my immediate family than with them in central Wisconsin. My mom is the one, I keep saying, who ought to write a book. She is the one inside the body that resists. She is the one who has lived it.

But I guess I’ve lived it, my own experience of it, with her. My parents shielded me and my sister from rheumatoid disease’s worst until we grew up (have I really grown up? can we ever grow up?) yet it overwhelms me when I’m in a doctor’s office waiting room, when I’m getting my blood drawn, when I feel a particular soreness in my left knee. I’m afraid I will get my mother’s disease. (It is my grandmother’s disease, too, and her mother’s before her: a family heirloom no one wanted passed down.) I’m afraid my sister will get my mother’s disease. I’m afraid my niece will get my mother’s disease.

But before all that, I’m afraid we will lose my mother to her disease.

“Rheumatoid disease” was first named (and is still most often called) “rheumatoid arthritis” because it often starts with the joints. My family has come to hate this title. We resent everything it leaves out. I remember sitting in the doctor’s office in my early twenties—my first primary care appointment after moving to Florida at the start of COVID-19—relaying family history and former test results. “Rheumatoid disease?” Dr. F asked somewhat incredulously. “You mean rheumatoid arthritis, bad joints?” (She never did affirm the endocrinology referral my medical team in Wisconsin wanted, the one that got lost in the pandemic shuffle. Later she put me through two months of scans and unanswered follow-up calls before a surgeon finally told me the “lump” on my left side was nothing more than a slightly skewed rib.)

I bristle at the idea of comparing diseases. Suffering is suffering is suffering, and beyond healthy moments of perspective—the kind that enable us to feel more grounded and grateful in our own corners of the world—little good comes from ranking the worst that can happen to the human body. Of course cancer is the emperor of all maladies. More than a few scares later (her medication puts her at increased risk of several cancers) I am happy my mother does not carry that specific malignancy. But I also wonder, in the worst midnight moments—when I am miles away from my childhood bedroom across the hall from where she is struggling to get out of the king bed we once snuggled in—if the doctors and coworkers and churchgoers and family members and friends would take her more seriously if she did. What a terrible thing to think, I reprimand my own brain. But shame doesn’t banish the question.

My mom’s suffering is silent, most of the time. Her head is not bald. She does not yet need a permanent cane or walker or wheelchair. You could look at her in a restaurant or at the office and probably breeze right by; if anything, you’d think she was just tired, just middle aged, just living through a Wisconsin winter. Her appearance does not scream I am sick. Her first impression does not betray my body fights me.

But my mom’s suffering is loud to us. Before she was diagnosed, she was running 5Ks. Now her right foot has collapsed—yes, collapsed—and surgery isn’t an option with a wrecked immune system. The “best” solution is an unwieldy brace. She’s developed frightening muscle weakness as a side effect of prednisone, which means she needs to wean off the steroid—but that med is one of the only things enabling her to wake up and do tasks as simple as touching toes to the floor, as buttoning her own shirt, as drying her thinning hair.

Rheumatoid disease is not quick, and yet it’s all too fast. My mom’s diagnosis was a death sentence far on the horizon—with the right support, her body should be able to carry years and years more. Decades, if I get my way. So we keep whispering to each other “it could be worse” while thinking privately “but it’s already so bad”. Every time I talk to my mother-in-law she asks me how my family is, and I am the bearer of bad news. Too often my voice breaks. Tears fall onto the phone. “I don’t think I’ll ever be able to tell you she’s any better,” I said a few weeks ago. “I’m afraid it’s only ever going to get worse.”

My own medical fears started before my mom was diagnosed. (At a routine physical before fifth grade, the doctor pulled my dad aside to ask if I struggled with anxiety.) I do not blame my mother or the acute condition attacking her soft tissues for the fact that I’ll never have a normal blood pressure reading in a clinical environment. But her experience with rheumatoid disease—our family’s collective exposure to chronic illness—has scarred me. I hate writing that because I hate imagining her reading it, confirmation of her fears come true. But she already knows. Whether we say it or not, we all already know. There is no going back.

It was both burn and balm to read other people’s experiences with loss. It heightened the anticipatory grief I’ve befriended all these years. It deepened my gratitude that my own loved ones are still here. My mom is different than “before”—she is struggling more than she deserves—but she is here.

In a few weeks I will see her and squeeze her and tell her how lucky I am.