Four months with my mother, and my house plants remembered what it meant to live. She babysat them while I traveled two years ago, and they thrived beneath her tutelage, glowing green on the kitchen windowsill when I returned. The cactus with fresh shoots sprouting, the succulents blooming anew. I’d had them for nearly two years; they’d done little more than survive, and even that, just barely.
After I moved the plants with me to my new home 300 miles away, I watched them lean toward the heat of the radiator in winter. During summer, they stretched as far as they could in the direction of the sun. I’ve gotten incrementally better at assessing their needs in the year and a half since I moved, but still have to admit defeat with a shriveled, stemmy relic every couple months or so. When they lack ambition, it feels like mockery, as if the plants are absorbing my worst fears and sending them right back to me.
My mom grows her own herbs and vegetables and as a kid I swung sweet peas in buckets, picked fresh from the garden. She might’ve taught me about gardening, but it seems the skills were only semi-transferrable to adulthood. I remember sitting in the grass, my child hands bolder than my adult ones, and tipping plants on their heads, squeezing the bases of plastic pots until the roots loosened and broke free. Recently, I performed this motion and remembered that I remembered. But I wasn’t sure how much to break up the roots, what amount of disturbance was right.
*****
When I became cognizant of my mom’s ankylosing spondylitis diagnosis, it was after years of thinking she had rheumatoid arthritis. That easier-to-remember name was just a placeholder on her chart for immunosuppressants that hadn’t yet been approved for AS, an autoimmune disease that targets destruction at the spine and causes vertebrae to fuse over years, decades.
My mom’s vertebrae are fusing slowly but it’d be better if they fused fast. Less painful. Or at least painful for less time. Her posture is reminiscent of nuns and rulers, a good thing because ankylosing spondylitis could potentially form her back to whatever shape she takes most often. If her posture weren’t rigid, she might one day match her garden’s columbines, arched down in reverence to the sun. My mother, the one the rest of us revere.
When I was in middle school, she got a medication drip every couple weeks; the doctor’s office ordered in Big Town Hero for the patients. Sometimes she’d bring home leftovers—just a little cancer drug and turkey on wheat. Meds would work for a while, then stop. Or, they’d keep working but a side effect would sprout. She ran through all of them, eventually trading the IV drip for medication that arrives on the front porch in a cooler, a weekly shot to the leg. Medication Monday, she called it, until she had to switch to Medication Wednesday. Midweek is better when staring down a slew of side effects. Methotrexate produces flu-like symptoms and my mom, a former behavior specialist, is still doing contract work for several school districts, though she gave up her job at a district office two years ago.
“I only have so much energy to give,” she said. “I could spend it working, or I could spend it doing everything else.”
Her doctors supported disability leave years back, but she never submitted the paperwork for funding. I think it became easier to justify quitting her job once she was closer to retirement age. Not so much a giving-in as an acknowledgement of passing time. “The good thing about aging when you have an autoimmune disease is that you’ve already been dealing with a lot of aging’s effects for years,” she told me once.
And though I know this statement is true—that for decades her body has felt like it belongs to a much older person—I mostly know it because of what she shares with me, which comes in fits and spurts. My mom and I can talk about most things together; she has never once shied away from a difficult conversation, a trait I do not naturally share but have, over time, reluctantly embraced. Yet this reality ends when it comes to conversations about her health—she doesn’t want to burden me or my brother, and as she sees it, complaining or venting equals burden. Thus ensues flawed logic: I can’t see my mom’s vertebrae fusing, and therefore they are not. She rarely complains; therefore, no complaints are felt. I can’t feel her pain; therefore, it is not real.
My clearest memories of her outwardly feeling the effects of her disease were many years ago, when I was in elementary and middle school. Her diagnosis was newer then. Her team of doctors was still growing, and they were still actively seeking the best solutions for her health. These days, though the solutions remain mediocre at best, my mom has the activity level of someone who is not only disease-free, but closer to my age than hers. I’ve not asked her, but I am certain she’s logged more miles this week (and last week, and next week) than I have.
Last year, at age fifty-six, she spent over a week on the Camino de Santiago with a friend. When she left, I was proud of her for embarking on such a trip—without my dad, and simply because she wanted to. It wasn’t until later that I realized the real feat was the walking. She’s always been bold and independent, though her back and feet and nerves try to undo this with increasing creativity. But in Spain, she averaged around fifteen miles a day for more than a week with a pack strapped to her back throughout. When she returned, she set her sights on a half-marathon. She knew she could walk the miles—she already had. For the race, she planned to walk for time. She trained for months, logging dozens of miles around my thirty-minute-circumference hometown; trekking a seven-mile loop in the Columbia River Gorge only to turn around at the carpark and do it again. Ultimately, she beat her half-marathon goal time (and seemingly spry decade-and-a-half younger friend) by minutes.
After all the walking, her feet rebelled. She had to cut her mileage, but didn’t stop entirely, even though her feet swelled up the way they did many years ago, when she had a hard time taking me and my brother back-to-school shopping because it pained her to walk around the mall. We always made the trip, though I have memories of pain leaking through her teeth.
It would be easy to label my mom as inspirational—a fighter who won’t let her diseases get the better of her. And, I suppose, one wouldn’t be too far off when qualifying her as such. But she would ask you not to. She would tell you that all we have is this moment, this one happening right now; who would she be if she didn’t take advantage of that? And yet it’s this very attitude that contributes to flawed logic for the rest of us. It can be hard to actively remember that someone has a painful chronic illness when they tend not to speak of it and briskly walk upwards of five miles most days.
*****
Wandering around my parents’ yard last summer, I traced my mom’s footsteps through the grass, around the paths. We both carried scissors, accompanied by rapidly growing bouquets of flowers in our arms. Every time I gestured toward some I wanted, she responded with the name—zinnias, columbines, hydrangeas. She noted all the regulars, too: Roses, daisies, jasmine for the smell. Grasses, lavender, basil for filling. When I said I liked a particular hydrangea’s color, that I hadn’t seen it before, she said it had to do with the soil, that the plant reflects whatever minerals it takes from a particular swath of earth.
By the end of our gathering spree, we’d collected so many flowers that they had to be split into groups for my six-hour drive back home. In my studio apartment, I spread their wealth across half a dozen vases until a bouquet rested on nearly every flat surface. When their leaves and petals fell, I spared the stems that looked more dry than dead. The zinnias faded from orange to tan, but their layered petals stayed perfectly formed for months.
My mom can keep a garden-grown bouquet on the counter well into winter. She locates whatever color’s left outside, and brings it in.
*****
In search of potential pain relief, my mom has been gluten free and remains a vegan. She’s removed refined sugars from her diet, gets acupuncture, and meditates regularly. During the spring and summer, most of the vegetables she eats are grown in the backyard. She is the poster child of a good patient and informed self-advocate, except that she is more risk-taking with her mobility than her doctors have the stomach for. When she went on an immunosuppressant detox two years ago at the request of one of these many doctors, she still went hiking and kayaking, to yoga and Pilates. But where medicated chronic pain takes up a lot of space, unmedicated chronic pain takes it all. Emotionally, my mom dealt with her physical pain in a way I should’ve seen as normal—occasional crying, vocalizing angst, diminished patience. Closer to the edge, she was further from her ability not to let us see. And I didn’t want to see.
She was mid-detox when I returned from four months of traveling. I was more concerned with seeing my friends than spending time at home. And when I was home, I was snippy. I saw the existential angst of my late-twenties peers and I met them there plus more. I didn’t want to leave right after returning, to go to grad school in a city I’d never visited, for a degree I didn’t know what to do with. This led to a brief emotional regression, where I felt like I’d adopted the persona of my thirteen-year-old self. Everything annoyed me, especially everything my mom did. She was so excited to have me home, but I couldn’t understand why—I knew I wasn’t being my best self and felt unworthy of her affection. So, I pushed back against it.
When she asked me to take walks with her, I rarely said yes. She’d lie in bed to read or watch a show and instead of going upstairs to talk to her, to curl up beside her and let her play with my hair, I’d go outside to smoke weed alone. When she asked me to kayak with her, and I said yes, her happiness made me uncomfortable.
I wanted my mom to fix everything but also to let me wallow in peace. To anticipate my needs before I had them. To know when to lean in and when to pull back, when to cheerlead and when to let me sulk. But that need-anticipation was strained. Something to do with me wanting to act an adult and not a child, ending up somewhere in between. Something to do with her being a half second behind on the take. Something to do with me not realizing that she also needs support, that she wants to ask for it just as much as the rest of us do. When someone acts as healthy caregiver and ultimate fixer to those around them, it’s on the rest of us to call their bluff when they can’t maintain that front. Conflict arises when we’re not prepared to do that, when our sights turn inward only.
“You’re so selfish,” she told me last summer, slicing the words until I couldn’t hear them, could only feel them burrowing deep. “Sometimes, I just want someone to ask how I’m doing.” I lay my head in her lap. She combed my hair back from my face with her fingers as my ache settled in. “Maybe I’m not half the mother I thought I was.”
“You are, Mommy. You are. You’re more.”
*****
On a recent trip home, I retrieved a plant my mom had propagated for me. It had been thirsty for a couple days, and though I planted the roots in dirt and tried to revive it, my limitations showed. It remained forever twigged and I internalized the blame, even though, technically, it was dead before I relocated it to my apartment. Weeks later, when I finally admitted the plant’s fate to my mom, I expected her to spend some time lamenting the loss, but there was no need. It was a solvable problem, one she could begin remedying as soon as we were off the phone. My mom lives for such problems, the ones she can check off a list and promptly dislodge from her mind.
The next time I went home, there they were in vases on the windowsill: a new pair of stems with pink speckled leaves, reaching toward the outside light and waiting for their roots to grow.
The plants are in my apartment now, but the tall one’s finnicky. The pink leaves wilt easily, drooping from lack of water and perhaps because they’re cold against the wintery window. If I leave town for a few days, all other plants will be fine upon return, but this plant, whose name I’ve never known, reprimands me. Selfish. I run it under water until it quiets down. The leaves will revive in a few hours. I return it to the window.
*****
When my mom tripped up the step to the front door two Thanksgivings ago, she hit her face on the ground but saved the pie she was holding. With her legs folded on the walkway and her upper body on the porch, she set the pie down gently and stayed on the ground as I crouched beside her, smoothed the hair she hasn’t let gray, the hairline with medication-induced receding, unnoticeable until we’re boating and she’s wakesurfing and falls in, bobbing out of the water, hasn’t had a chance to shake her wet hair from her scalp, a glimpse of what was always a widow’s peak, now more peaky. (“You’d think the disease process would be enough without my hair falling out, too.”) But methotrexate is a chemo drug. During medication detox, the one benefit she mentioned was hair returning to the receding edges of her crown.
“You don’t think it’s because I drank too much, do you? Sometimes I just lose my balance,” she said while we sat on the ground. On top of ankylosing spondylitis is a more recent diagnosis: multiple sclerosis. One symptom of MS is how it relates to alcohol; in regard to balance and coordination, a couple glasses of wine can look like the equivalent of a couple bottles, though we didn’t know that yet.
“It’d be different if your dad were here. I don’t like you guys to see me like this,” she said. Her forehead was bleeding, but I don’t think she worried about us seeing that as much as seeing her cry. It was bad enough to fall; it was worse to feel sad about it. But my dad slept upstairs—work in the morning. My brother stood back, uncertain. Between the two of us, I’ve often been the one to catch her. Once, when she came home from the grocery store with vertigo and couldn’t find her way inside but managed to park the car straight in the driveway. Once on a weekend trip in Seattle with shooting nerve pain in her arm and bouts of vomiting.
My dad catches her the most, though this is easy to forget. Their love is quiet in its outward ease. When my parents leave the house at different times, it’s sitting on the kitchen island, next to bouquets of garden flowers, written on pieces of scrap paper: Have a good day. I love you.
I don’t know if there was a note on the island as my mom and I stood in the kitchen the day after her fall. I do know that chocolate pudding pie leftovers were in the fridge, unscathed, though her jammed index finger had turned deep blue.
We don’t really talk about her disease process, my dad, brother, and me. I’m not certain what we’d say if we did. When things are particularly difficult, my dad might text to say Mom’s not feeling well. She would like it if you called her. Those texts are rare. The one time I remember talking about it with my brother, he said he was worried he might have AS. He has some back problems—hiking pains him, and he avoids it when he can, preferring instead to bike for distances that I can’t imagine riding. That conversation was years ago. I don’t know if he still worries; for now, my ignorance—though not blissful—feels all right.
Back at the kitchen island: “You don’t think less of me, do you?”
For falling. For letting us see.
“Not even a little bit,” I said. “Not even at all.”
Displaying the effects of a disease doesn’t mean that someone isn’t strong, or capable, or doing their best. Yet when a healthy persona is the status quo, to not live up to that feels like failing. When my mom’s diseases sprout new symptoms, they are most distressing to her when they interrupt her activities, impede her progress. Right now, more than a year post-Thanksgiving fall, her feet are yet again rebelling, so she has to pick and choose her hikes and walks.
Ever the optimist, on the phone the other day, she said, “At least it’s almost spring.”
*****
My parents’ backyard could be a designated city park. Most of the land runs down an embankment, which is overrun with invasive blackberries that my dad has relentlessly tried to tame. Occasionally my mom gives in to their determined presence, fills a bowl with the berries she can pluck without earning too many battle scars. Then there are the trees, mostly maples and pines, which have roots that run much deeper, and have existed for decades longer, than the house and its foundation. They tower above the yard by the dozens, offering enough shade that it effects where other plants can thrive.
At its peak, the garden (which runs across the front of the house, down the side, and through the back) is all blues and pinks and yellows and reds. And green. So much green. It’s roses along the fence that my mom cradles by the head to hold—“have you smelled these yet?” It’s wisteria, twisting up and over the front porch, its smell forever wafting through the open windows of my childhood bedroom, allergies be damned. It’s squash by the bushel and fresh herbs for spices and radishes, apples, jalapeños, string beans, heirloom tomatoes bigger than the squash. After particularly impressive pickings, my mom often sends pictures of her produce to me and my brother with a mention of what she’ll make for dinner. Wish you were here.
*****
In college I found out I have Factor V Leiden, a common blood disorder that makes me more susceptible to blood clots than the average person. The disease was passed down through my mom, via my grandma. It affects my day-to-day only as it relates to my choice of birth control: extra estrogen dramatically increases blood clot risk. My mom cried when we discussed it on the phone.
“I’ve given you and your brother such a shitty gene pool,” she said.
“It’s not that big of a deal. I’d rather exist than not, Mama.”
She’s brought it up a few times more recently, the gene pool thing. We never spend long talking about it, and I’ve never considered getting my genes tested to find out if I have AS markers. (MS is harder to predict.) I don’t actively worry about inheriting a marker for an autoimmune disease, although when I wake up with a stiff back, I wonder if it’s AS symptoms starting. When the top of my left foot went numb last year, I looked up early signs and symptoms of MS. I called my mom and told her about the numbness. She told me I just needed to stretch.
I didn’t disclose my underlying worry. How to say that I want my vertebrae to keep nesting exactly as they should, my brain to function lesion-free? How to say that even though I’m in awe of my mother’s stamina and perseverance, I hope I never have to exhibit such reserves?
And yet when I think about having kids someday, my hesitation has little to do with passing down chronic disease potential. Maybe it should, but it doesn’t. Instead, I look at my shriveled houseplants, my inability to anticipate their needs. I water the succulents too much and their leaves plump and drop to the dirt, leaving nothing but pale, defiant stems. Or their roots rot, slowly enough that I don’t realize and keep watering even as they actively die. The vibrant leaves of the viney purple-heart start to fade, so I move it to the window. Here, build memories of the sun.
Whenever I go home in the spring and summer, my mom sends me off with a backyard bouquet so big it needs to be buckled in (zinnias, columbines, hydrangeas) and when I get to my apartment I put the stems in vases and feel happy until they wilt and stand for weeks in slimy water and I dump them outside and wonder when I’ll feel like a full adult, fully capable, able to discard things right when they go bad instead of waiting, waiting, waiting.
My mom would like to discard her back. Get a new one with vertebrae that are comfortable in their independence, no need to band together. She mentions this only on the worst days, this wish that things were different than they are.
She’ll bring it up after hours crouched low in the garden, after coming inside and wearily mentioning that someone else will have to make dinner. She’ll lie on the couch until she goes to bed—“stupid fucking back”—but her garden will thank her in color and sustenance. We will forget to thank her, forget she has two autoimmune diseases competing for top bill. We do not expect her chronic pain to be more chronic, more painful, on some days more than others. We do not offer lenience when she’s off her immunosuppressants. We expect her to be on, always. Even when her balance falters, even when she’s standing in the kitchen and sidesteps until a hand finds the counter and counters the fall. Sometimes an arm will swing wide, knock a glass from the table. A new body part will go numb for a time. She’ll mention it in passing, note the weirdness of awaking in the night to discover the left side of her body numb.
“Have you talked to your neurologist?”
“Not yet. I see her in a few months. I’ll wait unless something really concerning happens.”
She doesn’t want to know if she has more brain lesions. She doesn’t want to know if she fell up the step on Thanksgiving because it was dark and she was a little drunk and she tripped, or if she fell up the step because she has MS and her disease is progressing. To say nothing of her vertebrae, ankylosing spondylitis, the original disease. She doesn’t think about that one so much anymore. She’s had decades to adapt and accept. MS is a newer diagnosis. Not yet an identity she’s comfortable claiming.
My mom doesn’t want to know if her brain lesions are worsening, because if they are her neurologist will tell her she needs to take a new medication that has the potential side effect of a deadly brain infection. Rare but worrisome because my mom has a tendency to set the curve. It’s unknown whether MS was always dormant within her, or if one of her immunosuppressants triggered it years ago; brain lesions were a rare, but worrisome, side effect.
But reasons for why only matter for the dwellers and about this, my mom is not. She’ll dwell on the minutiae—falling up the stairs, her children seeing—more than she dwells on her diseases. Or maybe she just dwells quietly. Maybe she turns it into energy that converts to love for those around her. Maybe the energy becomes flowers, glowing brighter at her request.
Last winter, I posted a picture of another succulent I killed—a tiny sprout my mom propagated from a fallen leaf while I was traveling. I should’ve left it alone, but I got impatient and overwatered it. A few days later, a package arrived. The contents glowed green.
Cover Art by Jeong Hwa Min
