Thursday, January 8, 2015

The Bell

As I've previously noted, Ro and I have received many many cards over the last two months.  Some for me, some for Ro, some for us.  And it's difficult to explain how meaningful they are to us.  You thought of us.  You picked up a card.  You wrote kind words.  You put it in the mail.  Thank you.

What's ironic here (and Jill would be the first to point this out to me) is that I've always labeled myself as 'not really a card guy.'

"What's the point?" I'd say to Jilly.  "You want to wish me a Happy Birthday?  Just pick up the phone.  Call or text.  We're good."

"But it's the thought, Jas.  And don't you like getting mail?  I sure do!"  She always liked getting mail.

And so here we are, sans Jilly, receiving something in the mail on a near daily basis.  It's incredible and so greatly appreciated.

(And in case there was any doubt or concern, we keep all of the cards.  They're in an overflowing container atop Ro's dresser.  An overflowing bucket of love that Ro can glance at and be reminded of the love and support that surrounds us.  Thank you.)

I got a card in the mail yesterday w/o a return address.  I removed the envelope and was greeted w/ a photo of (what I believe are) white tulips in a silver vase on a countertop.  Simple, pretty, no copy.  I opened the card to see that no less than 30 faculty and staff from Siteman Cancer Center had signed the card.  30!  Fucking 3-0!

Now, admittedly, many of these signatures were probably out of obligation.  Given their profession, they unfortunately sign many of these on (what I hope is) an irregular basis.

But, there were a handful of signatures preceded by heartfelt, personalized messages.  Using words like joy, beautiful, sweet, kind, smile, pleasure, wonderful  to describe their memories of Jill.

Yep, that's how she was and who she was.  No matter if she was at a party or in the cancer center.  That chick rocked a smile and a positive attitude like no one else I know.  It was built in.

I read these remembrances and notes of encouragement w/in this card and had to take an immediate deep breath.  (That's what I do when I'm suddenly overwhelmed w/ emotion.  It tends to hold back the tears.)  B/c this card very quickly brought me back inside the walls of Siteman.

No matter how we approached the doctor day, our emotions were always heightened.  For us, there was no way around it.  Invariably I'd try to keep things light.  But we both knew we weren't there for the jokes.  We had work to do.

Our first rodeo was to completely eradicate the disease. we thought.

The second and final act was to determine how we could best coexist w/ the expanded disease, while maintaing a high quality of life.  We did what we could for as long as we could.

So, I have this rush of Siteman memories upon reading this card last night.  And one particular image seems to stick out in my mind...again.

The bell.

The fucking bell.

Have I posted about the bell?  Has Jill?  I don't recall.  Regardless, in my opinion, it's worth mentioning (again).

If I'm honest, I've actually envisioned writing a short story, even a one man show, or another therapeutic public outlet to get this out of my system.

For now, we'll just keep it rough, raw, and here.

If you've never stepped foot on the seventh floor of Siteman (and I hope that you have not and will not), when you step off the elevator, turn left to the lab check-in counter, you walk past a shiny gold bell affixed to the wall.  It's about the size of a cantaloupe and sits just at eye level for all to see.

This bell is my nemesis.  This bell is the itch I can't scratch.  For me, this bell symbolizes failure.

So, then, why does it exist?

It exists for the cured.  It's a celebratory bell.  When you've been cleared of whatever disease you've battled, before you step onto those elevators and leave Siteman for the last time, you ring that bell.  And when that bell rings, anyone in earshot claps for you.  It's like Pavlov's dog.  Instead of salivating, we clap in honor of your life-saving accomplishment.

No matter the state of our disease (and therefore our emotions), on days we were at Siteman and heard that bell, we freaking clapped.  Sometimes we even cheered.  Well done.  Get the fuck out of here and don't look back, I'd think to myself.

Let me reemphasize this.  On any given doc day, Jilly may be presented w/ blood test results that show the disease has progressed, which is why she's uncomfortable, unable to walk four steps w/o losing her breath, and/or fall asleep at the drop of a hat.  But, if she heard that fucking bell, those hands went together.

Don't get me wrong.  I'm sure there are others that do, and would act in the same way if in our shoes.  But, my front row experience was w/ Jilly.  And when you witness someone as drained - both physically and emotionally - as Jilly could be on occasion, to see her clap in honor of someone who ridded their body of something that she would likely never do, it's nothing less than breathtaking.

Our first time around, Stage II, we got to ring that bell.  It felt good.  It felt done.  One last ring-a-ding-fuck-you-ding to the disease before we moved on w/ our life together.

But fuck that bell when you're Stage IV.  It just sits there, staring and taunting you.  All shiny and ready for the next ringer, knowing full well that you won't be it.

I truly cannot tell you the number of times I've envisioned ripping that bell off the wall and pummeling it w/ a hammer or a mallet or a whatever.  I'm not violent, but I have a very vivid imagination.  I honestly believe the only reason I didn't do it is b/c of Jilly.  It would have sent the wrong message to her.  It would have shown my hand too much, how this disease was eating at, and affecting me as well.

Nope.  Gotta be the rock.

But, I'd find myself staring at that bell when we were awaiting blood work.  And I swear it stared back it me.  I was always the first to look away.

It's like Santa's sleigh bell in the Polar Express.  You only hear it if you believe.

Did I have doubts?  I guess.  I mean, Jilly and I knew our reality.  Science was not yet on our side.

So, the bell sat silent for us.  We didn't hear it.

On our last day at Siteman, I rolled Jilly toward the elevator bank in a wheelchair.  That fucking bell was like the Houston sun on my shoulder - hot and angry.  I swear it was watching me.

I stopped in the middle of the hallway and swung myself in front of Jill. "Wanna ring it?  Just knock the fuck out of it?" I asked her w/ great sincerity, holding back the tears.

She knew what I was referring to.

"No," she said quietly, calmly, defeated.  "It's not for me."

FUCK YOU, bell.

All love,

J, J, & r

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