Elevator Music for the Soul — A Flashback

Mary and I are in the elevator in the senior high-rise we’re learning to call home. We’re having trouble adjusting to this place. It’s so different from the home we knew.  At this moment, we’re witnessing the mayhem of octogenarians jousting with their walkers and wheelchairs.  Mary can see the chaos; I can only hear the sound of metal striking metal, the occasional “Ouch!  Watch it!”

Mary and I are leaning against the back wall of the elevator.  And Mary is leaning against me because her cancer is sapping her strength.  Now Mary lays her head on my shoulder and says, “It’s all right…Jeff is here and that makes it all right.”  And she says this aloud but not loudly, just loud enough for other sounds to stop.  And I put my arm around Mary and hold her to me.

We stand at the back of the elevator.  And I think, “This is it.  This is what it is all about.”  To be honored by one whom I honor, for whom I strive to be a better man.  And as much as I love and am loved by one special person, I have this leap, this knowledge how I can make that difference, right here, right now.  One stop at a time, each rider trundles off.  And to each, I say, “Have a pleasant day.”  And some pause, then wish us the same.  Not all, but some.

And now it’s just Mary and me.  We lean against the back wall of the elevator.  Mary leans against me.  Her head is on my shoulder.  My arm is around her.  And we know this moment, this time  together, won’t last.  But right here, right now, it’s all right.

 

Playlist:

“Romeo and Juliet” by Dire Straits, from the album, “Making Movies”

“Poppy Red” by Richard Thompson, from the album, “Sweet Warrior”

“A Rum Tale “ by Procol Harum, from the album, “Grand Hotel”

“Don’t Forget to Dance” by The Kinks, from the album, “Come Dancing”

Laughing Fit to Burst

As my wife’s cancer progressed, as her prognosis dwindled from months to weeks, she slept sixteen, eighteen hours a day.  One evening, toward sunset, as Mary dozed, I lay beside her, wondering what in the world would happen next.

I scanned the bedroom.  Everything was different.  There were new things, hospice things, what they used to call “sick room” things.  Nothing was the same, the same as before.  Mary’s favorite cabinet, the one with five drawers, the one she refinished, was way off in the corner, not along the wall where it had been before.  And I started to think about how the bedroom would be down the line, when the hospice things were gone.  And I knew what that implied.  It implied that Mary would be gone, too.  And I didn’t want to go there.

But I kept coming back to how things had been before and how they would be afterward.  That cabinet, the one Mary liked so much, I bet that would look fine centered under those two paintings, the one being the portrait of Mary at fifteen, the age we were when we met, the painting they tell me the artist got her blue eyes just right.  Was there room for the cabinet there, where I could clear the cedar chest at the foot of the bed without cracking my shins?

So, I began putting the bedroom together again.  How about that chair?  That table?  Was there room along that wall?  In that corner?  I slid off the bed, careful not to disturb Mary, and fetched my yardstick from the other end of the apartment.  My yardstick, the one with the bump dots at twelve and twenty-four inches, the one I can measure height, width and depth to an accuracy of plus or minus two inches without being able to see a thing.

Now, I’m measuring wall space and floor space and I’m sliding the yardstick up and down and left and right and now I think, am I doing the right thing here?  Am I disrespecting Mary?  Am I an insensitive monster or what?  And I have this vision that Mary is lying there, with one eye open, just, well, regarding me.  Yes, regarding me.  So, I look over my shoulder and, of course, I can’t see whether she’s got one eye open or not.  So I wait for her to say something.  Something like, “Jeff, are you going to measure me, too?  See how much space you’ll have when I’m out of here?”

And if Mary had been awake, if she had been regarding me, if she had said what I think she would have said, then we would have laughed.  We would have laughed fit to burst.  And we would have traded stories about the old western movies where there’s gonna be a hanging at sunrise and the undertaker measures the outlaw the night before so they’ll saw the coffin boards long enough to fit him.  And then we’d tell more stories and laugh some more.  And then Mary would have fallen asleep again.

Laughter, that’s what we had.  At the end of Mary’s life, we didn’t have a lot more than that.  So we made that be enough.

Playlist:

“Amoreena,” by Elton John, from the album, “Tumbleweed Connection”

“Waiting in the Weeds,” by Eagles, from the album, “Long Road out of Eden”

“Happy Together” and “She’d Rather Be with Me,” by The Turtles

Sliding into the Deep Pool

My wife’s name was Mary.  Mary lived with metastatic breast cancer and, though cancer has taken her life, her spirit remains within me and, I believe, within the hearts of so many people she touched with kindness.  As her days dwindled to a precious few, Mary expressed no bitterness, no self-pity—only dismay that “I keep waiting to feel better…and it’s not happening.”

Cancer proved a relentless, rapacious force.  It sapped Mary’s stamina.  It stifled her outrage at Donald Trump.  It quelled her ardor for the Cubs, particularly Cubs with “cute butts.”  It silenced conversations with friends and stilled her fingers from clicking the “Send” button.

Near the end, when I learned that hearing and smell linger as death approaches, I surrounded Mary with flowers and the sound of music.  Then I lay next to her, held her hand and, as twilight fell on the last day of July, felt Mary slide into that deep pool.

Now, these stories, this blog called Jalapenos in the Oatmeal, always has been and continues to be focused on blindness, on my life as a blind man.  Four years ago this Christmas, I wrote about how I became Mary’s in-home caregiver after her surgery.  Last Christmas, I wrote about how our respective prognoses led us to move into LSD, the Place, the senior high-rise with the view that nourished Mary’s heart and spirit.

This Christmas, I write how Mary and I found the toughest part of caregiving came when Mary could no longer speak and I could read neither her facial expressions nor her body language.  I write how we relied on touch.  And I write about how I know there were times when I zigged when I should have zagged and did Step 2 before Step 1 and I write about how we did our best with what we had and as what we had diminished, how our enjoyment of one another endured, how our laughter was never silenced.  ”The best thing about being married to a blind man,“ Mary once told a friend, “is that, on days I don’t look so good, he won’t even know.”

Now, I write about the care we received from a Certified Nursing Assistant, an angel named K, who treated Mary with love and dignity.  They found joy in simple things—multi-colored manicures and mini-makeovers.  K described to me how Mary chose a different shade of polish for each fingernail and made a face at blue eye shadow.  Then, when K told me how brightly Mary smiled at the sight of me, my heart filled with joy.  And I swear I can see how beautiful Mary was that day and always will be—with a touch of color on her cheeks.

People say my wife was a breath of fresh air, that she was a shining light.  But I say no more metaphors.  She was a woman named Mary and she wanted only to be the best woman, the best person she could be.  Mary was my wife.  She was my best friend and confidante.  But I did not possess her.  Where our lives intersected, we found love and laughter.  Mary inspired me to want to be the best I could be.  And I was at my best when I supported Mary in becoming the best she wanted to be.

A times, each of us hated cancer and blindness.  Together, we tried to accept the unacceptable and bear the unbearable.  Our bond was that no challenge would divide us, that no tragedy would defeat us.  That I am writing these words is a tribute to Mary, a commitment to her spirit, a testament to the process of life and death and the recognition that energy is never destroyed, rather, it is transformed and eternal.  That last is not a theory; it is a force I feel living within me.

 

Postscript.  Here are some songs I played for Mary as daylight dimmed to twilight:

“I’ve Been High” by REM, from the album, “Reveal”

“I’m Not Throwing away My Shot,” Original Broadway Cast of “Hamilton”

“September Song” by Frank Sinatra and many others

“Now and Forever,” by Carole King, from the album, “Essentials”

“Ask Me No Questions” by The Bangles, from the album, “Doll Revolution.”

“Lilac Wine,” by Jeff Buckley, from the album, “Grace.”

 

 

Above It All

The aroma of coffee leads me to my wife, perched on the window seat, thirty-four floors above it all.  She’s taking in the view that brought us here, the view that nourishes her.

“How’s it looking?”

“I’m in the midst of a great white cloud,” she says.  “And I’m feeling kind of ethereal.”

“And I’ve come to report that, down at sea level, it’s The Great Lakes Palm Sunday hurricane.  Sideways rain, full-frontal gale.  Randy wasted no time, bless his heart—squat, pee, sidestep, squat, poop, head for home.  He knows when the hard rain falls, there’s no sense getting soaked.”

“Thick white fog,” my wife says.  “I wonder if this is what Eternity looks like.”

“I want more from Eternity than thick white fog,” I say.  “I want faces, sailboats, sunrises over the lake.  Thick white fog I’ve got—all day, every day.”

“I hope you get your wish,” she says.  “And in this lifetime.”

“Thank you.  What’s your wish?”

“I want to feel like myself again.  I want to be eager for every coming day.  I want simple pleasures—food that nourishes, sleep that renews.”

“And I hope you get your wish,” I tell her.

And then my wife says, “Honey, how did we get here?  Together, in this beautiful place with the beautiful view?  We have each other, we have love, we have so much.  We have gratitude.  We take nothing for granted.  Here we are, with the American Dream.  But we’ve also got what America fears most: America’s couple with blindness and cancer.”

“It makes me wonder when I hear two things: everything happens for a reason and you’re never given more than you can handle.  I wonder but I neither argue nor explain.  It just comes down to living with things and sometimes living in spite of things.”

“Do me one favor, Honey,” says my wife.  “never say I lost my battle with cancer, that I put up a good fight.  There’s no winner or loser.  I’m not fighting, even as I grit my teeth and question all that has instilled faith in me.  I win as I live with it.  It’s going to put us in our place and that’s humbling but it’s not losing.  That’s a tough lesson and it’s part of the life we’re living.”

“Honey, I’d like to have a refund of all the time and energy I spent fighting blindness.  I’d invest it in acceptance.  Fighting never brought me much serenity.”

“So, all you want is time?” asks my wife with a chuckle.  “I’m a little short at the moment.  But if you get me a banana and the Sunday Trib, I’ll read you the sports page.”

As I prepare my wife’s breakfast tray, I hear her call, “You gonna go crazy on the treadmill this morning?”

“You mean, am I going to break into the song only I can hear?  The answer is yes, definitely.”

“Please don’t sing that ABBA song in front of all those old people.”

“You mean, ‘Superper Trooperper?’”

“And are you going to do that one-armed flourish like you’re conducting the orchestra?  That scares people.”

“Do I embarrass you, dear?  Just make believe you don’t know me.”

“Oh, but I do know you,” she says.  “And to know you is to love you.”

“I wish you could walk with me today, Honey,” I say.

“Go get ‘em, Tiger. You have many miles to go.”

So today I walk for two.  I have miles to go.  Miles to go before I sleep. And, before the weight of this cancer, this blindness, this beautiful and terrible life brings me to my knees, I walk on the treadmill, walk and walk until “Once in a Lifetime” takes me across the finish line.

Accompanying Music:

“Precious,” Pretenders, from “Pretenders” (“I was feeling kind of ethereal”)

“Ask Me No Questions,” Bangles, from “Doll Revolution” (treadmill warm-up)

“Lost and Found,” The Kinks, from “Think Visual” (treadmill)

“When the Water Falls,” by Collective Soul, from “Collective Soul” (treadmill)

“Once in a Lifetime,” Talking Heads, from “Stop Making Sense” (treadmill finale)

 

 

Lord Knows, I Can Change

Four months ago, my wife and I moved into “The Home.” Our mantra from day one has been, “This is going to take some getting used to.”  Yet we settle in—slowly, like mud in the Mississippi.  Big wheel, keep on turning.

Change occurs in celestial ways.  I track the path of the sun.  Not simply its ascent over Lake Michigan, but it’s daily arc across the sky.  A higher arc means less direct sunlight floods our southern exposure and I can remove my White Sox cap indoors.  Now picture this.  On the vernal equinox, the sun aligned with Chicago’s east-west streets and, in those solar-powered canyons, I saw my shadow for the first time in years.  I thought it was a stranger until I flapped my arms and found that what I only thought I was seeing was what I really was seeing.

Change comes in mundane ways.  Early on, I thought the upholstered chair and coffee table motif across from the elevators a quaint decorative touch.  Now I know the feng shui is not decorative but practical as I sit, rather than stand, waiting for the elevators to creep all the way up here to Floor 34.

Change occurs in human ways.  My wife and I are considered the “younger generation” by the octogenarians and beyond who reside in “The Home.”  Conversations glide or lurch toward common ground.  Our dog, Randy, has become the currency of exchange.  “What a beautiful boy/girl, and so well behaved,” say surrogate grandma and grandpa. Everybody knows Randy and, recently, some who greet him daily have even begun hailing my wife and I by name.

Change begins at a molecular level.  Not until I sang along to “Heading for the Light,” not until I lowered the headboard so the bed doesn’t resemble a guillotine, not until I heard a lady in the lobby say, “Nice man, nice dog,” did I begin to feel at home in “The Home.”

MUSICAL NOTES:  With apologies for the “Free Bird” reference in the title.  I lifted the line, “Big wheel, keep on turning,” from the song, “Proud Mary.”  George Harrison’s “Heading for the Light” is a 1988 song by The Traveling Wilburys (George Harrison, Jeff Lynne, Bob Dylan, Roy Orbison and Tom Petty, with Jim Horn on saxophone).

Adjustment Reaction

The first Saturday after moving to “The Home,” my wife and I wake to find our car has been towed.  To reach the impound, we hike an hour north on footpaths tucked between Lake Shore Drive and Lake Michigan. Along the way, we find a hint of serenity—morning sun, gentle breeze, surf sounds.  A couple miles and a hundred bucks later, we find our car.

That first Sunday, we wake to find Randy peeing on the carpet.  We’re shocked.  Randy’s mortified.  “That dog’s been acting weird ever since we packed the first box,” I announce.  As we ride the down elevator, I itemize Randy’s annoying behaviors: pacing and panting, clinging and shadowing, hiding in the bathtub.

Stepping outside, we hit a wall of winter wind.  My breath turns to crystal and the steam from my ears to icicles.  I steer Randy toward the parkway to finish the business he started upstairs.  That the mud and abandoned dog turds are frozen solid provides sure footing but little solace.  Just as I aim my evil eye somewhere near Randy, I’m visited by the Dog Whisperer.

“You misunderstand Randy’s needs and you think only of your own,” she whispers (what else?) in my ear.

“You from PETA?” I growl.

“Never mind about me.  It’s you who needs to know and understand that Randy has lost everything that was his world.  He’s seeking comfort from the only familiar and nurturing things that remain, the only objects he loves—you and your wife.  Not only do you confuse love with dependence, you lay your own stress on him.  Wise up, you mutt.”

Back upstairs, I tell my wife of my visitation.  “Honey,” she says, “we’ve been here five days.  We’re all acting a little weird.  And Randy’s new schtick gets on my nerves, too.  But we’re all doing the best we can.  You can’t kick a dog for being a dog.  And you can’t kick yourself for being human.”

“That’s kind of what the Dog Whisperer told me,” I say.  “Except she called me names.”

“None worse than what we’ve called Randy recently.”

“Right you are.”

“OK then,” says my wife, ”we’re all in this together.  And we approach these new behaviors as a team, right?”

“Absolutely.  You can count on me.”

OK, then.  Your first assignment is to get the dog out of the bathtub long enough for me to take a shower.”

People Like Us

Three months ago, my wife and I moved into “The Home,” in which 350 much older souls reside.  I asked my wife to be on the lookout for people similar to us, a couple we might pal around with.  Every time I ask her if she’s spied any prospects, she says, “Nope.  Not yet.”

Searching for people like us doesn’t imply we’re snobs.  No, we’re friendly and polite to all.  Nor are we ageist.  Heck, my mother is 97 and we’re still nice to her.  We have kindly impulses.  At the big Christmas dinner, we listened as Sarge the Hostess barked, “How many?” followed by a chorus of creaky voices: “One…one…one.”  When our turn came, we asked Sarge for a table for forty, so all the lonely singles could join us.

Here’s a true story.  I’m standing outside the elevator, holding the door as residents shuffle in. When it’s my turn to board, I tap left with my cane—clank. A walker.  I tap right—thud.  A shoe.  I sweep left to right—clank, thud, clank.  Then a man’s old voice growls, “Well, are you going to get in or not?”  I squeeze into a corner. The door slides shut.  I wait a beat.  Then I say, “Sir, I use this white cane so I won’t bump or crowd anyone.  Sometimes, this process takes a few seconds.”  I refrain from adding, “you jackass.”

As we rise, silent but for the whoosh of displaced air, I recall the words of one seasoned resident: “If you didn’t hate old people already, you will soon.”  And, though I’m not feeling the love here and now, I admit my part in this elevator transaction—I hate being the straggler, the one taking too long.  And, with an effort, I forgive myself for being imperfect and the old man for being impatient.

I burst into our apartment, eager to tell my wife about the mean old man.  But she gets the drop on me.  “Honey, I’ve been watching our neighbors squirm, trapped inside their twisted bodies and I see and hear how chronic pain changes mind, mood and personality.  Living in pain would rob my spirit of joy.”

“I believe I just encountered such a soul,” I say to my wife. “A man whose words offended me and whom I judged harshly.  I forgave him but he did touch a nerve in me, a nerve that causes me more pain than his words—the pain of my blindness, of feeling less than.  Maybe less than is how he sees his life.  Maybe he’s bitter.  Maybe he’s just a jackass.  But that’s not for me to judge.  God knows, I get nasty when I feel tortured by blindness.”

“God knows you do,” says my wife.  “and I forgive you for it.  Just like you forgave the man in the elevator.  Because there’s so much more to you and him and all of us than our limitations.  Aging is wicked. What annoys me now is what I fear I’ll become.”

We’ve learned our lesson for today.  Here in “The Home,” My wife and I will still seek another “younger” couple who looks like us, acts like us and thinks like us.  What we find is a multitude of brittle bones and feeble bodies—all of which I can’t see anyway but all of whom I must not overlook.  If we seek only similarities while judging based on differences, if we dismiss those who shuffle behind walkers or get pushed around in wheelchairs, then we miss the chance to connect with, well, people like us.