Wrestling with Hope

You know what hope is?
Hope is a bastard
Hope is a liar, a cheat
and a tease. 

Hope comes near you?
Kick its backside,
got no place in days like these.
–Picture Window, lyric by Nick Hornby, music by Ben Folds

I have been hearing the lyrics to this song by Ben Folds and Nick Hornby over and over in my mind over the last week. It’s a brilliant lyric I wish I had written.

Not sure how thoughts and emotions bounce around inside of you, but sometimes my brain cannot think anymore along linear pathways. It’s not capable of rational thoughts that further my growth. When that happens, music tends to take over.

I hear the music of poems I’ve read, snippets of stuff I’ve written and then – as though filing through an old-school rotating round Rolodex, I hear my brain flipping through 34 years of music and lyrics for that One.

Sometimes I hear a foggy, faded version for days until I can consciously recall the words and the tune, solidly.

When it does finally jam into gear, the song usually flattens me. Literally. The best way to channel this music and tune it into my emotional center, to let it express that which I am unable to access rationally, is to lay flat on the ground next to a speaker and play the song. Loudly. And repeatedly, if necessary.

Ryan Russell Design

It sounds crazy, surely. Maybe it is. But it works for me. When I’m sung out, wrung out, cried out, a mellowness comes over me and the wave of song has disintegrated, is being pulled back out to sea.

This song came to me out of nowhere, driven by two things happening: 1) letting myself venture into the anger stage of grief, allowing the fury I feel at the whole bullshit cancer saga my Mom and my family went through and 2) suddenly remembering Mr. Bailey, at least a year ago, singing part of this lyric as he listened to it for the first time. I did not recall what it said entirely. Something about hope was all I recalled. But suddenly, I had to track it down.

After my ritual, I realized “Picture Window” should be handed out *preferably at the precise moment a cancer patient/caregiver gets completely sick of hope* as a cathartic listening device. I’ve come to appreciate the song’s power too late.

Eventually, I recalled trying to listen to it when Mr. Bailey first presented it to me. But I wanted none of its bluntness or pessimism then. Hope was my only friend, my only consolation and I didn’t feel able to disrespect the notion of it then.

Now, I’m fine with it all. Why? Because hope isa bastard. (Or as my Mom used to tell me, “Sometimes, life’s a bitch!”)

Hope by George Frederick Watts

Sometimes, hope just flat out lets you down.

And still we hope. This song expresses what I didn’t want to express then – the desperate position one is in when they turn to such a fickle (yet powerful) notion like hope and proceed to make it the center of their perseverance.

Hope made my Mom take that last chemo treatment that made her last months a hellish physical battleground. Hope brought her down to 100 pounds. Hope stole her hair, her beautiful eyelashes and eyebrows. Hope kept her injecting herself with insulin, bloating herself with IVs, swallowing pills, forcing down food she couldn’t taste. Hope influenced so much of how we approached life during those two years.

And we got a cruel result.

Perhaps years from now, I’ll have a better grasp on Hope. I’ll be able to find some cockeyed and optimistic way to tell you, dear readers, that the Hope we had and used to

our own advantage made everything – or even something – better. Or maybe not.

In the meantime, I’ll have this song.

(Click here to hear “Picture Window” in full.)

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Sweet words can sometimes sting!

Children bring so many things to our lives. Devoted, unconditional love, chubby hands placed gently on cheeks, sweet breath kisses, unending admiration for all that you do and are.

Our little darlings can also be sneakily and disarmingly honest. (Photo by Erin Wheeler, check out her website in Links)

They also bring unrelenting honesty. This can be a good thing and a bad thing, and sometimes at the same time.

Two examples pop to mind.

Several months ago, Secondo and I were in my bedroom. She was cavorting on our bed, distractedly watching whatever PBS show was on, and paying some attention to me getting ready.

I was busy treating the process of getting ready as an episode of Extreme Wardrobe Selection, with intense clothing demolition, salvage and various attempts at guerrilla accessorizing. I was stripping off clothes like I was in the dressing room at Gap and diving through my closet in my unmentionables, when Secondo suddenly exclaimed between giggles:

“Mommy, that’s so funny!”

“What, my darling?” I answered, about to wrestle myself into a flattering pair of leggings.

“When you walk, your bottom is all jiggly!” she said, laughing heartily.

That stopped my prancing. “Secondo!” I said, shocked, turning to face her.

As adults we are conditioned to respond to comments insensitive to our emotions with fiery retort. But as I turned, Secondo’s face with all smiles, lit up by her unconditional love and adoration of me. She threw her arms open to hug me, still giggling.

Her comment, despite dealing a blow to my vanity, to her was a simple realization enveloped in her admiration for her Mommy, wiggly tush and all. And that was the real stunner – her acceptance and love wrapped up in her scrutiny of my derrière.

The second example of this was aimed at Mr. Bailey. It’s essential for this case to know Mr. Bailey is a physical cross between Jimmy Stewart (height) and Steve Young (build).

There we were walking through the throngs of tourists on Pier 39 inSan Francisco. Late afternoon, wind whipping as it does off of the Bay, bodies pushing along to the beat of a street musician’s bongo drums, Prima and I got separated from Mr. Bailey and Secondo (Sisi, as we sometimes call her).

Hanging out by the tour boats, Mr. Bailey soon emerged from the crowds with Sisi and we started out again, towards our hotel.

“Whoa!” Mr. Bailey said as he got within earshot, “That was crazy! This lady on a bike just ran into me!”

Prima, without missing a beat, nonplussed: “Was the biker OK?”

Since he and I were overcome with laughter, I’m not sure if he felt quite the same measure of abject acceptance and love. But I can report that Mr. Bailey, being who he is, shared this story several times throughout the trip.

Setting the vacation record straight, kid-style

This summer Mr. Bailey and I upped our travel quotient by triple from last summer, when our big trip was a long weekend camping excursion in the high country. As a family, we were focused on making fresh, fun memories to blow the stink out of the sadness-soaked highlights of the last two years.

Mr. Bailey and the children

Introducing Prima + Secondo to one of the greatest cities in the world. Little did we know they'd have a slightly different take... Photo by Mrs. Bailey

Our first trip took us to the Bay Area, always a go-to place for The Baileys pre-kid days. Now that Prima and Secondo are 8 and 4, we figured it was the first trip they had a chance at remembering. We budgeted to stay in the city, strategized about visiting some touristy San Fran spots, and planned to stroll, eat great meals, and createGolden Gatememories for our family.

About halfway through, as we rendezvoused with my brother who lives in the Bay, we were treated to a rapid-fire re-accounting of all the glorious highlights of our vacation so far – kid style.

“So, Uncle Benny, first, my Mom left her Nook on the airplane,” Prima began in her know-it-all-voice.

I groaned. No, no, no, these weren’t the memories I expected!

“Yeah, yeah, yeah, Uncle Beeny, and we were on the train and she said, ‘Oh no, I forgot my Nook!’ And she started to cry,” Secondo chimes in, her voice going up an octave in excited urgency.

Oh, shoot, I thought, my forgetfulness is now the highlight of the trip.

“And then, Uncle Benny, we were walking along and we saw the Sparkle Guy!” Prima shouted, cutting off her sister. The Sparkle Guy is aSan Franciscoperformance artist/walking tourist trap who hangs out on the Pier clad in silver glitter from head to toe.

The Sparkle Guy in his getup. But some lucky little travelers got to see him between acts...

“But, but, but, then Uncle Beeny, later we saw him and we were walking to our hotel, and it was later, and, and – ” Secondo’s words couldn’t come fast enough.

“And he wasn’t wearing his mask and he was just riding his bike home on the side of the street!” Prima finished triumphantly, Secondo giggling hysterically. “And when we were on the bus to the hotel these guys started yelling at each other!”

“Prima,” I moaned, having forgotten that part of the trip entirely.

“And then, Uncle Beeny,” Secondo jumped in again, frenzy now in full swing, “we saw this old lady wearing these little shorts and walking and eating this HUGE peach, like chomp, chomp chomp!”

Sure that was funny at the time, but really? I thought.

“Then!” Prima battled back, “We were at the Pier and this girl made this old guy take her picture and he took off his gloves really slowly and took the picture and gave back the camera and then she looked at the picture and said, ‘Can you take it again? My hair was in my face!’” both girls laughed wildly.

OK, that was hilarious, I allowed.

Their uncle told them how impressed he was with their stories. It was silent for a moment or two as I recalibrated my expectations of what this trip would bring into their sweet little minds. But I couldn’t give up without a fight.

“We rode the cable cars,” I offered, “And ate in Chinatown and went to Ghirardelli and saw all the big ships, right?”

“Yeah,” said Prima, bored, “we did all that, too.”

Photo by Mrs. Bailey

Mr. Bailey, my brother and I burst out laughing.

Despite the months of planning, the savings account expense, the sacrifice on the part of my brother and his family to host us, and our focus on seeing the sights and making halcyon memories, the kid-version highlights boiled it all down to a mish-mash of discarded, humbling moments. At first it was discouraging. But then, it was delightful.

The kid-version, I realized, made hay out of chance encounters, stressful moments, mishaps and entertaining misfits. It cast bit players in starring roles and illustrated the humbling humanity in the parents they probably too often see as perfect.

Once I re-jiggered my thoughts, I was elated by the kid-version highlights, and asked the girls to recount them again and again. I laughed at their tales, rich with a child’s perspective, free of any pretense and goofily making dramas out of silly moments the four of us had shared.

I can see clearly now and your underwear is way too small

When someone you love is fighting for their life, a lot of stuff goes by the wayside.

A more basic version of you emerges. You develop a predator-like focus on the beasts you’re fending off. For our family, those beasts were cancer and death. We were on the side of many more years and love overcoming illness.

Our eyes were opened, and focused on beating cancer -- and not on so many other things.

Once the battle was over, my focus seemed to shatter into a thousand pieces of distracted attention.

Lately I’ve been working with my SuperGlue, in tongue-over-lip concentration, trying to fit at least a good portion of the pieces back together again.

The pieces are interesting! And shocking.

Take, for example, my daughter Prima’s bedroom closet. It was bursting at the seams with too-small clothes, socks and shoes. While I was the cancer predator, I just shoved new stuff in there, making small pliant promises I would go through it all later.

Later came the other evening. My younger daughter out with her dad, we dove in and began culling through the mess. I tackled her underwear drawer first. I found my 8-year-old daughter had been squeezing herself into size 4, 5, and 6 panties.

“Don’t worry, Mom,” she told me bluntly, when I apologetically pointed out the size discrepancy. “They stretched out.”

Oodles of guilt and shame were followed by a profound love of my Prima, who tends to find the silver lining, especially when she can spare someone’s feelings.

Another interesting piece was our desk. Sheesh! Outdated bills had started mating under the piles of unrequited junk mail, coupons that shouted, “FREE!” birthday cards never sent and school notices that never notified us. (Me: Did you know Prima has a half day today? Mr. B: No, did you?)

The Bailey's desk was about 1000 times worse than this, and remains a work in chaotic progress.

A carefully placed stack of colorful woven baskets yielded bills from the early cancer predator days, shoved away and now outdated, thankfully, and easy to shred.

I’ve woken up! And the living room needs painting and the floor needs changing and our lives need a fresh coat of paint.

The cancer predator was cruel, but it’s over now. And as much as I miss my Mom (with every thought and every breath, every single day), I am glad it’s gone – even if I have to start with tight underwear.