Sister’s Keeper, ix (Well on Her Way)

Hi, Reader – This is Part 9 in a series. If you missed the beginning, hop back to Part 1. As always, thanks for reading!  ~Em

I helped Amanda out over the summer not so I could write about it, but in writing about it I remembered our bond. Over the years, I guess I’d forgotten how fortunate I am to have a sister.

“Having a sister or friend is like sitting at night in a lighted house,” writes Marilynne Robinson in Housekeeping. “Those outside can watch you if they want, but you need not see them.” She’s right, there’s something safe and insular about sisterhood. She’s my very first friend, and our shared forty-plus years mean that the roots run deep and tangled.

Strangers sometimes ask if we’re twins and appear mildly doubtful that we’re not. As I replied to a stranger late one night at Walgreens, “No, but we’re practically the same person.” He probably thought I was a few trombones short of a jazz band, but I was being truthful. There’s no one on the planet more like her than me, and vice versa.

When we were little, Mom had a parenting book called The Strong-Willed Child. I remember scanning the titles on the shelf and wondering, what’s that one about? At some point, I learned it was my mom’s survival guide for managing my sister. Amanda was always fearless and, I suppose, what Dr. Dobson might have called “strong willed.” She was a pistol. She was liable to get a knot jerked in her tail. (Do grandmas still make threats like that?) But it was that strong will that carried her through hard times, recent struggles included. God made her a strong-willed child, and that’s a blessing, because she had to be.

I was not a strong-willed child; I go along to get along. Some other time I’ll write about the basic dishonesty of my compliance. Maybe only siblings can be practically the same person and, at the same time, so dramatically different. In any case, this past summer the main difference was I had the chance to take care of her in the best way I could, and she had to endure it. Maybe she’ll have a chance to return the favor. If not, that’s okay, too.

***

Once, when we were little, we were playing at a friend’s house—four kids under age five running wild. At some point, Amanda decided to put a paper bag over her head and run wild, until she ran smack into the living room wall. I can still recall the spot where she hit, white paint, sunlit, twelve inches below the light switch. She ended up having to get her forehead stitched up.

For many years after, a half-inch scar marked the middle of her forehead. In the summer, it stood out white against suntanned skin. Eventually it faded, then disappeared altogether. Early this fall, on the flat landscape of that long-gone scar, I dabbed a cross of peppermint oil.

I had forgotten the faith-healing of my upbringing–mostly–the fierce quoting of scripture as if God was being held to the terms of a contract. It wasn’t deliberate, just pushed to the back corner of my mind with other cobwebby childhood memories. But do you ever completely outgrow the religious tradition you knew early on?

So it’s 9 a.m. on a Thursday morning in September, and I’m at Amanda’s house responding to a desperate text message. She’s home-bound with a cluster headache, and I’ve brought over an essential oil diffuser. When you’ve tried everything modern medicine and old-time religion can offer, might as well fill the room with a cloud of good smells.

As she gets settled under the covers, I plug in the diffuser. But before leaving her to rest, I’m compelled to do one more thing. I pour a small bead of peppermint oil on my thumb. I reach over and mark her forehead with a tiny, cross-shaped smear of oil and say a simple prayer for healing.

Did it work? She was better within a day, so either it ran its course or I should buy a sharp suit and white sweat hankie. God is good, regardless, and I’d argue that one way prayer works is that it makes us humble. It reminds us that some things—maybe most things—are out of our hands. It’s like standing at the edge of the ocean.

It seems, finally, that Amanda has made it to the shore. I admire her courage in confronting pain and doing something about it. I admire her patient endurance, when it would have been tempting to self-destruct or just give up. I respect the character she’s building by trusting deeply in God while working to strengthen her body and mind. And I can see the hope that’s growing in her: it gleams like a white scar, but it’s tougher than a diamond.

Wellness is a big step toward wholeness. And she is well on her way.

Amanda xray

Amanda’s new bionic jaws. Smile!

Sister’s Keeper, viii (One Thing Leads to Another)

Amanda and I are really good at imagining worst possible outcomes. Sometimes, mental gymnastics are required, but we were raised with a vibrant imagination for catastrophe.

I remember as a teenager calling home on a pay phone to let Mom know that dance camp (or whatever) was going fine. She was happy to hear that I wasn’t lying dead in a ditch somewhere, which was exactly where her imagination went.

I no longer dwell on possible calamities, but I’m still fairly skilled at catastrophic thinking. On Amanda’s surgery day, I thought: what if she dies under anesthesia? When her jaw was wired, I thought: what if she chokes to death? When she had severe nausea, I thought: what if she’s asphyxiated by vomit? When we left her to manage her own meds, I thought: what if she accidentally overdoses? What if she becomes addicted to these magic opioids that have ruined so many? And when she rode the awful roller coaster of pain, I thought: what if it didn’t work, this last-ditch surgical effort, and chronic pain is now a way of life?

One thing leads to another, which leads to catastrophe.

So far, in real life: no catastrophes. Slowly and steadily, Amanda is feeling better. By late July, she’s on her own again. When we all go out to dinner to celebrate her August birthday, she orders salmon and mashed potatoes—and savors every tiny bite.

At her next follow-up appointment, the surgeon releases her to work but not to drive. Because her house is in a cellular dead zone with unpredictable WiFi, she works from my house. For the next couple weeks, she sets up her laptop at my kitchen table. I pick her up around 7 a.m. and take her home in the evening.

Just when she’s feeling like a normal person, physical therapy begins. And . . . she’s back in the house of pain. The aim of the therapy is to trigger an inflammatory response that wakes up the immune system to do its healing. This inflammation hurts like the dickens.

One thing leads to another, which leads to more pain.

After a couple weeks, physical therapy gets easier. Amanda can drive herself to work. This is the new normal we’ve been waiting for. And . . . the headaches begin. Jaw pain is no longer an issue, but she’s having vision problems. She gets an eye exam and new glasses, but she’s plagued by cluster headaches.

Having taken off two months for recovery, she now has to call in sick. This is not the new normal she’s been waiting for. She doesn’t want to be known around the office as the one who’s always sick. She feels defeated and humiliated by the constant struggle to be well.

One thing leads to another, which leads to embarrassment.

Meanwhile, the hand that I stupidly cut open heals quickly, thanks to copious globs of Neosporin. All that remains is a tiny pink mark. Strangely, it aches now when the weather changes. One thing leads to another, which leads to a weather-forecasting knuckle.

The other day I stumbled across a verse in which one thing leads to another. Paul wrote in his message to the Romans,

“[W]e know that suffering produces perseverance; 

perseverance produces character;

and character produces hope.”

If this is true, by the end of her ordeal, Amanda will have unquestionable character and unquenchable hope. And although she’s embarrassed by unrelenting illness, there’s no reason to be ashamed: “[H]ope does not put us to shame, because God’s love has been poured out into our hearts . . .”

We are not yet whole, but we do have hope.

Note: This is Part 8 in a series, which is ending soon. If you missed the beginning, jump back to Part 1. Thanks!

em amanda legoland

Amanda & I at Legoland, January 2018

Sister’s Keeper, vii (Bloody Knuckles)

My sister is independent. If she feels like a trip to the thrift store ten minutes before closing time, she goes. If she wants chips and salsa, she’s dining at Chevy’s as a party of one. Being a patient is hard, especially depending on others to keep track of her medicine and drive her around. It’s not easy to shift to child-like dependence.

I’ve written before about how my brain sometimes confuses my daughter and my little sister. The simple truth is I have an impulse to mother both of them. Although Amanda hasn’t said anything, I think she’s grown sick of me calling her “dear” and “darlin’,” names I call Caroline. But caregiving suits me: I like the challenge of anticipating needs and meeting them. I like that aspect of parenting, too.

In this second phase of 24-hour shifts, I feel guilty leaving Phil and Caroline, leaving my own house in a mess. Sure, they can cope without me, but they don’t think about things like wiping off countertops or trimming overgrown bushes.

The lilac bushes are driving me crazy. Every time I pull into the garage, I fixate on the dead limbs. It’s a low-priority concern in the big scheme of things, but it’s driving me batty.

One evening, I’m ready to go to my sister’s house a bit before my shift officially begins. I decide to trim the lilac bush in those few spare minutes. The dead limbs are near the ground at an awkward angle, and I struggle to get the hacksaw moving back and forth. As my right hand saws and my left hand steadies the dead branch, I watch helplessly as the blade bounces out of the groove straight across my taut knuckles. Blood immediately gushes to the surface. I drop the saw and run to the kitchen sink. As I run cold water over the cut, I deeply regret using a saw in haste.

Caroline brings me a robot-print Band-aid. Considering the stream of blood, a jumbo maxi pad might be more appropriate. I hold a paper towel on my knuckle for several minutes and stick on the robot Band-aid with strips of surgical tape to hold it in place.

When I get to Amanda’s house, she’s out of bed shuffling around in her robe, an unusual sight. She wonders aloud about the mess on her dining room table—crossword puzzles, books, old photos, Pop-tart crumbs—and I’m not really up for explaining that we have to entertain ourselves during these long sojourns.

Unfortunately, I already used up all my patience, my hand is throbbing, and she wants me to peel back the bandage so she can decide if I need stitches. This role reversal irritates me: doesn’t she know I’m the mother? But, of course, I’m not the mother. I’m the big sister, and it’d be smart to get a second opinion on my wound.

I win the first round, insisting I’d rather eat toenails than wait all night in the ER.

I lose the next round. That night, as my knuckle throbs, I toss and turn on the air mattress. After a few hours I realize: maybe this is where true empathy begins, not with the big sister ordering the little sister to drink the whole dose, lording it over her because, well, I’m the healthy one and I know best. Maybe real empathy begins here, with my left hand—my pill-crushing hand—useless because every time I grip something, dots of blood seep out of the bandage.

This minor woundedness, nowhere near the scale of hers, opens the door to understanding how it feels to want to do normal things while being thwarted by limitations.

A friend of mine who underwent the same surgery as Amanda answered my questions about her recovery, one of which was, “How long until you felt like a human again?” She knew what I was asking, which was how long it took to get back to normal. But when we’re wounded, in pain, hindered by limitations, that’s when we’re most human.

There’s nothing less human than the illusion of perfection: perfect health, perfect relationships, perfect certainty. Pain, on the other hand, now that’s perfectly human.

Maybe that’s where it begins—a genuine understanding of each other—with acknowledgement of wounds, out there in the open.

And maybe that’s how we meet each other eye to eye, as real humans, frustrated by all manner of guilt and surgery and impatience and lilac bushes.

Maybe.

Sister’s Keeper, vi (Thresholds)

Note: This is Part 6 of a series. Here’s Part 5 if you missed it, or maybe you want to go back to Part 1 to see what the heck this is about.

My palms are red and tender from grinding up pills. I’ve been using a jar gripper, but I still wince with every twist of the pill crusher. Just when I start to feel sorry for myself, Amanda makes a huge improvement. She takes a real shower and puts on actual clothes. Today, she has another follow-up with the surgeon, and she’s anticipating good things.

I drive her out to Chesterfield and bring a crossword puzzle in order to avoid HGTV in the waiting room. I can’t look away. When Amanda greets the receptionist, it’s clear she’s mastered the trick of speaking with her teeth tied together.

She’s in the exam room long enough for me to get engrossed in some low-stakes remodeling suspense. When she comes back out, her teeth are untied, and she’s free to eat mashed potatoes, pudding, or anything pureed. It’s her day of independence from protein shakes.

The next day at our parents’ July Fourth barbecue, Amanda indulges in a feast. She’s got a blender, and she’s not afraid to use it. She savors pureed potato salad and liquefied baked beans. No burgers or brats for her, but she seriously considers blending up a helping of potato chips and dip. Fortunately, she does not. But she’s feeling good, and we’re all amazed at her quick recovery. Let freedom ring.

Amanda happily lets Mom and me off from caregiving duties, except for driving.

On a hot July day, I pick her up for a trip to Walgreens and Schnucks. She’s been feeling good, but her body temperature is all out of whack.

As we step out of Schnucks, the heat blasts us like a furnace. She walks ahead of me, but I opt for the crosswalk like a nerd. From the sidewalk, I unlock the car and notice her collapse into the seat. Meanwhile I’m stuck waiting for a line of cars to pass. When I get to the car, I crank the AC, but she’s already pale and sweaty. By the time we pull into her driveway, it’s clear she needs some rest and a bottle of Gatorade. She insists she’ll be fine.

That night, I can’t fall asleep. Just when I’m getting really frustrated, a text appears: “Can you come over?” Pulling into her driveway, I see the dim lights of her living room through the storm door, and I brace myself for something bad.

Opening the door, I find her curled up on the mat just inside the threshold, sweating and shivering. The left side of her body—arm, shoulder, neck—is immobilized with pain, so much that she can’t get up. I panic and pray at the same time, then google “stroke symptoms” so I know the magic words to say to the 911 dispatcher. But when I scroll through the checklist, Amanda’s symptoms don’t match those of a stroke.

“Jesus, show me what to do,” becomes my mantra.

She doesn’t want to go to the ER again, but she also doesn’t want to die. She doesn’t want to deal with this pain-filled body anymore, the perennial problem of being alive. I try to think fast but spin my tires until finally falling back on my old stand-by: water. I insist that she drink some water, Gatorade, apple juice, Mountain Dew, whatever. She says she’s not dehydrated but placates me with a tiny sip from the straw.

I come up with a plan: she must drink the apple juice, and if she still feels terrible in thirty minutes, we go to the ER. At this point, she’d agree to anything just to believe that someone is in charge. The plan may be dumb, but there’s a degree of comfort in having one.

Thirty minutes later, she feels pretty bad but decides against the ER, knowing that tomorrow she’ll see the surgeon again. This time, instead of waiting with my HGTV, she wants me in the exam room to vouch for her symptoms, which I do. The nurse is sympathetic but completely unsurprised; muscle spasms are part of the recovery process. The remedy includes heavy-duty muscle relaxers, different pain meds, and—why not?—a dash of Benadryl.

After the appointment, Amanda goes back to bed for a long time. Night and day, light and dark, none of it matters. She bides her time in a medicated state, enduring the process, willing the days into weeks so her body can heal. Mom and I go back to alternating shifts at her house, déjà vu.

We were all amazed on July 4th at the speed of her recovery, eating pureed beans like a champ! We’d begun to think that steady progress was inevitable. This was a setback—or was it just a normal part of healing, one of many thresholds?

Either way, it would take time.

Sister’s Keeper, v (Clumsy Love)

By the time we make it to my sister’s home, it’s dark outside. My house is just a short drive away, and I practically tear up when I think of my bed so close. Amanda shuffles straight to her bed, a Tempur-Pedic to which she has an excessive attachment. When our parents walk in the front door with an overnight bag and an air mattress, I nearly collapse with gratitude.

I lead my mom to the kitchen to explain the countertop array of drugs, ice packs, and Ensure shakes. She sets an alarm on her phone for dosages every three hours, with extra alarms set on the hour from nine to midnight. For the next few weeks, Mom and I alternate 24-hour shifts.

June becomes July in a slow-motion blur.

***

My mom is a hugger. I’m less of a hugger, but I have adapted to hugging. Mom’s hugs are pleasant but often end with an aggressive, “I love you” squeeze. While I’m sure her dogs enjoy this grand finale squeeze, for me it can cause neck pain. I brace myself for the WWE vise-grip move. It isn’t mean-spirited; it’s just the opposite. But it hurts.

Love can be clumsy.

The next few weeks are both loving and clumsy, with two complete amateurs caring for a highly sensitive patient. Recovery turns out to be a crazy roller coaster ride of good and bad days, an accidental overdose and a super-fun trip to the ER.

Despite the highs and lows, I’m aware that with post-surgery caregiving, there’s a light at the end of the tunnel. The expected outcome is good: this does not end in hospice. Even so, the challenge is striking a balance – between what I want and what my sister needs, between honoring my promise to be there after surgery and spending time with Phil and Caroline. Not finding a balance can make love clumsy.

***

As I drive Amanda to weekly follow-up appointments, I quickly notice that doctors’ waiting rooms have one thing in common: all HGTV, all the time. By the last appointment, I am so utterly fed up with all the house flipping and majestic expanses of shiplap. I’ve come to loathe the couples with their real estate wish lists and high-stakes decisions.

“I want a white kitchen.”

“We need a yard that’s big — but not too big.”

“Sure, the bathroom is nice, but we need a bathtub we can both fit in.”

I talk back at these dingdongs who insist on a two-person bathtub, while people in the waiting room must think I’ve lost my mind.

Which I have.

I really maybe probably have.

***

Anyway, the blur of summer only appears to be in slo-mo. I sit on Amanda’s deck on a mild, sunny evening and notice the dull roar of cicadas in the trees. I wonder why they’re singing so early. Whenever I hear the first buzz of cicadas, I remember our sweet childhood neighbor Mrs. Wheeler saying the sound means that seven weeks of summer remain. Only seven more weeks. I’m caught between wanting to pause summer and wishing time would fly so my sister could eat solids and feel human again. Time pays no mind to my wishes.

These weeks of crushing up pills and finding the best Ensure flavor and trying to make Amanda laugh despite her numb face call for a certain kind of practice. It’s the practice of putting love into action, sometimes clumsily.

Even love takes practice; even with practice, it can come off clumsy. But clumsy love is no lesser love.

Painted in Waterlogue

Sister’s Keeper, iv (Longest Day)

As I write, it’s Friday, June 21, the first day of summer and longest day of the year. In the short time Amanda has been in the hospital, we’ve come to appreciate the length of a day.

Amanda developed a way to communicate beyond improvised sign language. If we can’t understand her speech, she texts. This morning she wrote a letter to her doctor on the iPad detailing the reasons she shouldn’t be discharged yet. I helped her fingers find “f” and “j” and she typed it with her eyes closed since opening them was painful. The letter was longer and more persuasive than most freshman comp essays, probably because she’s so invested in her argument. When recovering from bilateral joint replacement, managing pain is what’s at stake.

On the other side of the argument, I’d love to go home. My lower back aches from sitting, my neck is stiff from sleeping on the vinyl couch-bed, and I’m desperate for sunlight. The doctor will make the discharge decision this afternoon. While I yearn for my own bed, I get my sister’s concerns: at home we don’t have the convenience of IV drugs. Pain is the realest thing in the room right now.

The night-shift nurse showed me how to grind up pills, dissolve them in juice, and shoot the cocktail toward the back of her mouth with a syringe. The responsibility of care-giving is becoming scarily real. In the hospital I’ve been practicing presence, which is not nothing. But at home the actual work begins.

***

Due to swelling, the gauze wrapped around her face and head has become very tight. Two days ago, she looked like a wounded Yankee soldier, but now she looks like a round-faced nun with ample, rosy cheeks bulging out from a wimple. Although this is a Catholic hospital, I haven’t noticed any nuns; my sister is the only one back in the habit.

Sister Mary Amanda of the Order of Perpetual Inflammation has shown a remarkable ability to laugh at herself as a patient, but this swelling is no joke — her throat is constricted. She’s trying to stay hydrated after surgery, but she can’t swallow more than a tiny hummingbird-sip of liquid. Both of us are frustrated and anxious.

When the doctor finally removes the wrapping, Amanda is visibly relieved. The swollen tissue has someplace to go. The incisions in front of her ears and in the crease of her neck are now visible, the stitches dark like spider legs. I’m astonishingly cool: no puking, no fainting, no problem.

***

Awaiting the doctor’s discharge decision I head down to the chapel, which is bright and empty. I love the shiny tiled floor and mid-century coldness. Even the crucifix looks pale and drained, adding to the sterile atmosphere.

I walk along the Stations of the Cross, admiring the mosaics and eventually realizing the story is moving backward. Apparently the Stations start at the other end, silly Protestant.

In a way, we are moving in reverse. Having had the surgery to alleviate pain, Amanda will endure several weeks of worse pain before reaching the other side. Sometimes the way of suffering is one step forward, two steps back. Often, the only way out is through.

Late in the day, Amanda indeed gets her discharge papers – just in time for us to join rush hour traffic. It’s raining, and the stop and go of the clogged highway does not agree with my patient. I speed across the Musial Bridge, impatient for Illinois, exhaling when we reach the east side.

“We’ll cross that bridge when we get there,” I’ve said before, trying to keep worry at bay. Well, we’ve crossed the bridge, and we’re nearly there. Let the real work begin.

Jesus feetNote: This is Part 4 of a series. If you missed the beginning, start with Part 1.

Sister’s Keeper, iii (Time Slows)

(Note: This is part three of a series. Click here if you missed Part 1 or Part 2.)

The sun’s rays slant through the shutters. I couldn’t sleep in if I tried. I’m up and ready to go, although I have nowhere to go. It’s the morning after surgery, and we are in the thick of drug deals.

Because my sister’s jaw is wired shut (technically, her braces are bound together with strong rubber bands), she can’t talk. I’m her middle-man, brokering deals between nurse and patient. As for painkillers, she wants it all and she wants it now. It’s my job to watch the clock and make sure she gets her doses on the regular. Friends in the medical field have told me that pain is much easier to manage when you tamp it down with regular, clockwork doses, instead letting it break through and get out of control.

The night before I had to insist that my sister get some drugs that were left out of the doctor’s orders, except they actually were in the orders, just overlooked. I don’t enjoy confrontation, but I’m happy to advocate for her. Within a day, she’ll be texting to communicate her needs. For now, it’s hand gestures and trying to write with her eyes closed. I sit on the sofa-bed where I can see her hands move.

Pain is invisible. That’s the hard part, and maybe the hardest fact of life. No one can see your pain — you have to describe it, rate it on a scale of one to ten. Maybe scientists will invent technology that makes pain visible. Readily, easily, maybe even quantifiable. I wonder how different the world might be if we could see others’ pain.

My Fitbit tells me I’ve basically spent an entire day sitting. I hope to walk around the hospital at some point, but my peripheral vision is trained on my sister’s hands. Before all this, I had been walking farther than usual, knowing I’d be sitting a lot and not knowing how long the hospital stay would last. I forced myself to walk extra miles. When I’d take the extra block or go the longer way, much against my will, I told myself, “We do hard things.”

I can’t explain the plural “we.” Maybe it seemed less grandiose than telling myself, “I do hard things.” Sitting on my makeshift vinyl bed, I think about the hard thing my sister is doing. Maybe the plural “we” meant Amanda and me. Sis and I, we do hard things, admittedly sometimes because we are just hardheaded. But she has done many more hard things than I.

The hours wear on in the dim hospital room. Amanda is bothered by light, so the shutters stay closed all day. I’m passing the time with reading, podcasts, crossword puzzles, and Netflix movies. Also to entertain myself, I’m pretending we’re college roommates just chilling on a quiet weekend. Neither of us has been to the library. I did some reading while my roomie napped all day.

No, we are not college roommates, but maybe spending this time together will make up for our paths diverging way back then.

That was twenty-five years ago, and time moves steady as a river. Except in this hospital room, where we are suspended in time like fruit chunks in Jell-O. That’s how it feels anyway. But I know this: time is a river and a healer as well, and so we wait.

Psalm 23