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

Sister’s Keeper, ii (Juneteenth)

Note: This is the second entry in my series of posts about being with my sister through surgery and recovery this summer. If you missed it, check out Part One first.

My sister has been in surgery all day, and I’ve been keeping busy with magazines, crossword puzzles, and vending machine snacks. Earlier, a family in this large, crowded waiting room got some bad news. The women are sobbing, and a chaplain sits with the grandfather, talking quietly. It’s unnerving, this reminder of being in a hospital where births and deaths are the currency of everyday business.

At 4 p.m. the receptionist calls me up to tell me my sister’s room number now that she’s out of surgery. I’m thankful for the good news, but my prayers feel somewhat perfunctory – of course she’s fine, of course she’s a textbook case – as if smooth sailing were inevitable.

As if all it takes is waiting for everything to click into place.

On the elevator I text my parents to let them know she’s out of surgery and all’s well. My phone rings immediately; it’s my mom, asking if I’ve seen Amanda yet. Mom tells me to take deep breaths and prepare myself before walking into the room because she might not look good. Mom knows I have a tendency to faint at the thought of, well, anything medical. I wasn’t worried before, but now my pulse races and armpits sweat.

I find her room number and pause outside the curtain. When I walk in, nurses are arranging her tubes and wires. I dare to say hello. My sister’s head is wrapped tightly with a stiff, white gauze all around her face. Tufts of hair stick out. I don’t know quite how to act. She warned me beforehand that she’d come out bandaged up like a Civil War soldier with a head injury, but it’s somehow less funny now.

Her health insurance hasn’t approved the jaw replacement. They’ve fought her every step of the way, compounding the chronic pain with psychic pain and good, old fashioned stress. Just yesterday, nervous and fretful, she came very close to cancelling the procedure, for fear that she could never pay off the bills without insurance. I asked, “Can you stand the pain until the insurance comes through?” She tearfully said no. “Then I think you’re gonna have to take a leap of faith tomorrow.”

And that’s how tomorrow became today, a day that’s been anticipated for years. First came the pain, then the diagnosis, then getting braces on her teeth to prepare her jaws for surgery. When I first heard Amanda use the term “jaw replacement,” I was aghast. It sounded like something from a sci-fi novel. But it’s real, and for my sister it’s been a long time coming.

Today, after many years of suffering, she has new joints. Today is a turning point in her adult life after long-term chronic pain.

Today is June 19, Juneteenth. It’s the day when, back in 1865, Union soldiers landed in Galveston, Texas, bringing news that the Civil War had ended and the enslaved people of Texas had been freed.

Tragically, June 19, 1865, was a good two and a half years after President Lincoln’s Emancipation Proclamation had gone into effect. For two and a half years people in bondage hadn’t yet heard that freedom was theirs. I want to tell Amanda, when she’s more lucid, about this date and what it means.

I think we both know that this day marks the start of her emancipation. In the case of people enslaved in Texas, heartbreakingly, years came between the proclamation and the emancipation. Two and a half years of life.

As my sister knows, sometimes decades pass by before you’re set free.

amanda-emily.jpg

Amanda & me, 2000

Sister’s Keeper (Moonlight Drive)

The moon glows bright to my left. I blink hard to wake up my eyes. It’s not even 5 a.m., and we’re headed west. I squint as we pass Busch Stadium, lit up like an all-hours convenience store.

I glance up at the moon, so full and bright it’s distracting. The fourth time I look up at it, I wonder if it’s a sign. This is a habit of mine, looking for signs, attaching meaning to found objects, making a story out of a pattern. But I can’t come up with anything for the moon at the moment.

Hours later, to pass time in the waiting room I will google “moon symbolism” and find it’s a symbol of the feminine, the rhythm of time, immortality, and some other vague abstractions. The first thing I thought of, and quickly put out of mind, was lunacy. Doesn’t the moon make people silly? Nurses and Pre-K teachers say so. Anyway, not the sign I’m looking for.

I’m taking my sister to the hospital for a seven-hour surgery and a three- to five-day stay. She has been waiting for this day after many years of pain and people assuming she’s being dramatic. Diseased joints are a fact, however, not merely a pretext for the dramatic. I’ll be her driver, durable power of attorney, in-home caregiver, ministry of information, advocate, and kung fu fighter (as needed).

I wonder if my sister notices me glancing up at the moon every half-mile. She seems to be asleep, but I can’t tell. The moon is so big – if I stretched out my arm, I could touch it.

She’s not sleeping. I notice this when we drive by SLU, lit up in blue and white. At the same moment, we turn and stare at the north campus, marveling at the changes — new buildings, new street lamps. Amanda and I were at Saint Louis University at the same time for just a sliver of a year. We ran into each other on campus only once.

I came out of a restroom stall and saw my reflection in the mirror at a strange angle. My brain told me this was not possible. But there I was. The reflection looked at me with surprise. Until Amanda said “oh, hey,” I couldn’t quite process how the mirror had tricked me. She laughed, I laughed. Maybe we went out and had a bowl of soup in the student union, I’m not sure.

I’d found myself that day in the campus bathroom — well, not really but something very close.

Reflection — maybe that’s all the moon signifies. Which is fine. I was just kinda hoping for a white dove or a butterfly or even a cardinal flying in the moonglow. Something with wings, I guess, would be fitting. My sister is taking a leap of faith today. But then if she had wings, faith wouldn’t be necessary.

I veer right onto the exit ramp towards the hospital, my turn signal suddenly loud in the silence. We lose sight of the moon. I wince at the bright signs directing us to the surgical center, parking garage, reception desk.

At some point in the windowless no-man’s-land of pre-op, the sun rises. Amanda is under anesthesia most of the day. When she wakes up, maybe I’ll read her a horoscope she doesn’t believe in, just for kicks. I ran across several while googling for moon symbolism.

The full moon is a new moon. The new moon will mean something – not just the marking of time but something personal.

It has to.

“Forget about what’s happened;
don’t keep going over old history.
Be alert, be present. I’m about to do something brand-new.”

-from The Message, Isaiah 43:18-19

Amanda & me

Amanda & me, around 1981

She Came Home

Earlier this June, some good friends invited us to meet up at the movies. It was part of the free summer movie series at the Lincoln Theater, so they kindly got there early and saved seats for Caroline and me. Good call on their part — the parking lot was packed and the theater was nearly full, too, with groups from kids’ summer camps, day care facilities, and day camps for people with special needs.  Lots of matching t-shirts.

I wasn’t that excited about the movie, but I was excited to catch up with Kelly and Abi after a couple weeks of summer vacation. The title of the movie was A Dog’s Way Home, and, to be honest, I thought the trailers would be the best part of the experience (especially with the sequel to Frozen coming out this fall).

The movie sounded like something I would tolerate more than like. When we were kids, my sister had The Incredible Journey on VHS. She nearly wore out the tape from watching it over and over. For me, the journey of two dogs and one cat was more stressful than incredible, with too many moments of animals in danger. I saw bits and pieces of it — it was unavoidable with only one TV in the house — but I’ve always found it risky to invest in an animal movie.

Anyway, as we watched the trailers before the movie, the crowd was already pretty lively. When Elsa appeared on the screen in the Frozen 2 trailer, I heard at least two little voices gasp, “Elsa!” Then the movie started, and I started to think of places where we could eat lunch with Kelly and Abi. Also, because the parking lot was full of buses and minivans, I’d parked in a semi-legal spot. A couple minutes into the movie, I was worrying about what kind of parking ticket awaited me.

But then . . .

Then the people sitting a couple rows back got invested in the stray puppy named Bella who was raised by kindly feral cats until the perfect man-boy rescued her. There was oohing at the cute puppy and awwwww’s at the motherly cats. The crowd was really into it. And so a movie that I might have dismissed as cheesy or sappy was getting to me.

The whole story bent toward the dog getting back home to her family. In all, the dog managed to travel from New Mexico to Denver, Colorado, with the help of other strays, benevolent humans, and a mountain lion kitten who’d lost her mother to hunters, reminding us that inter-species friendships may be the most heartwarming.

But the very best part was when Bella the dog, after many dangers, toils, and snares, found her way home. The audience burst into applause. Not polite applause but raucous clapping that came in waves, fervent applause with zero irony.

Eventually, after the applause died down to a few quiet sniffles, someone a couple rows away shouted tearfully, “She came home!” and, I kid you not, the applause started all over again, in waves, ebbing and flowing spontaneously through the dark theater.

It tickled me, this unabashed celebration, and I clapped and laughed at the wholehearted sweetness of it. The feeling of unity among the movie-goers was nearly tangible. We loved that dog, darn it, and we agreed one hundred percent that she would find her way home.

Pretty simple stuff. Also pretty deep, because, aren’t we all somehow trying to find our way home?

-Em

Coming next month: Caregiving Diaries    

pic sparky

Elementary Gifts

This school year has been a gift.

Back in September, God dropped an opportunity in my lap, and I’m so grateful for the chance to help out at my daughter’s elementary school. I’ve volunteered in the past, but this year I began working every day with a fourth grade student (as well as subbing now and then, library work, and miscellaneous other stuff).

Many aspects of the job felt like a gift, but perhaps the biggest gift was laughter. What can I say? The end of the school year brings out the funny.

A couple weeks ago, the teacher was handing out math worksheets. One little boy pushed his worksheet back towards the teacher.

“Do you know if this paper was made from oak or maple trees?” he asked. I was working with my student across the room, but the boy’s question caught my ear (probably because it sounds like a Portlandia sketch).

The teacher seemed reluctant to engage yet remarkably patient. Sliding the paper back across the desk, she said, “I really don’t know what kind of tree was used to make this paper.”

“’Cause I’m very allergic to oak and maple tree pollen, and I really hope this math sheet isn’t made of those.” At this point I’m in awe of the boy’s creativity and cracking up.

He knew that paper was made from trees, he knew he was allergic to certain trees, and he really didn’t feel like doing another stinkin’ math worksheet. The kid’s an unsung genius!

Also, is it summer yet?

Another day that week, I subbed in my usual fourth grade class. Although I knew all the kids well, the afternoon felt a bit hectic. They have a special talent for keeping me on my toes.

At dismissal time, a boy told me he’d left his Spider Man lunchbox at school last week and wanted to go check the lost-and-found box for it. He came back a few minutes later with the lunchbox and a sheepish look on his face. I asked what was wrong and he said, “There’s something in it.” I peeked inside and saw a thermos.

“Ummmm, is it an animal?” I asked, not sure if we were playing Twenty Questions or what.

“I . . . think so,” he said slowly.

At that moment, I hated being the grown-up in charge. Hesitantly, I unzipped it all the way. Under the thermos were five or six roaches of different sizes – a family of roaches staring up at me. I zipped it up as fast as I could and asked, “Do you really like this lunchbox?” He looked confused, maybe a little scared.

I told him there was a whole family of roaches inside – Mama, Daddy, Bubba, Baby Sister, a cat-roach, a dog-roach, a hamster-roach. I was in shock, not sure what to do.

“Maybe we should burn it,” I said, half serious.

“My lunchbox?”

“No, the school. Down to the ground.”

That sweet boy couldn’t tell I was joking. I wasn’t quite sure, either. That’s when his friend stepped in, the tiniest girl in class, and said, “I’ll take care of it!” She took his lunchbox outside the double doors and turned it upside down. Out fell Mama Roach, Daddy Roach, and the whole family, which she stomped to death with her pink Chuck Taylors. It was like a tap-dancing recital right there on the blacktop.

A thing of beauty, really.

Meanwhile I stood inside with the other kids, squealing in disgust. It’s a wonder they still ask me to sub. I’ll never forget how my little friend saved the lunchbox, the school, and the day.

These are just a couple things that made me smile, but there are bursts of joy in every day. One day it might be my student discovering the handicapped stall has great acoustics for impromptu math songs. Another day it might be the sheer exuberance of a second grader with a sequin glove moon-walking in the year-end variety show.

Or it might be hearing twenty-six fourth graders try to sing along with Louis Armstrong’s “It’s a Wonderful World.”

Yes, I think to myself . . . What a wonderful world.

Oh yeah.

-Em

Painted in Waterlogue