Wednesday, January 28, 2015

Farming Isn't a Game

My mother-in-law got me an Xbox game console one year from Christmas.  She heard from a birdie Jilly that I was eyeing one.  So, she scooped it up for me.  Very thoughtful, unnecessary, and (in my mind) embarrassing to receive outside of your teen years.

Placing embarrassment to the side, I dove in.  At the time, not unlike movies or books today, it provided me w/ some much needed release.  Depending upon the time period, we were either gearing up for Rory's arrival or trying not to lose our shit in her presence.  Mindless button pushing in effort to score an inconsequential touchdown in the swirling digital snow of Green Bay was just what the doctor ordered.  

After some time, surprising to no one including myself, my gaming days moved to the rear view.  

Fast forward to the iPad era.  

To this day, I rarely use the pad for much more than web search and minor banking activity.  

Jill, on the other hand, made the most of that sucker.  

And the beauty of it was that her use of it never impeded her ability to carry on a conversation - whether it be one-on-one or in a group setting.  She somehow juggled both w/ a grace she'd never have...well...juggling.

While she explored several app avenues, her default was gaming.  And she'd hit them in streaks.

For months at a time, Jilly'd pad up and dip into mahjong.  It was digital relaxation.  Really, all of her gaming activity served that purpose.  Not unlike my brief Xbox'ing period, Jill's games provided a release and just enough cover from the ever present cloud that loomed above.  

But, in my mind, one game above all others is the standout.  

Hay Day.

If unfamiliar (thankfully I still am to a great extent), from what I gather, Hay Day equips you with a fully functional farm that needs your unqualified expertise to maintain and grow.  Milk the cows.  Feed the chickens.  Plant the carrots.  Harvest the corn.  On and on and on...

...and freaking on...

During the Hay Day stretch, I'd often come home from work, and after exchanging sincere pleasantries, Jilly'd say something to the effect of, "Can you take over dinner prep?  I just need to feed these goats before I make my delivery to the farm down the road..."

She didn't say it in a this-isn't-real-and-I-know-it's-just-a-game kind of way.

Jill stated it in a this-needs-to-be-addressed-now-or-it-will-have-serious-repercussions-on-our-livelihood kind of way...

...which prompted me to respond, "You know none of this matters, right?"  

"I have to do it," she'd throw back to me.

I cannot tell you how many iterations of that same back-and-forth we had.

And it was all fun and innocent play...

...until Rory started farming on Mommy's farm.  

Naturally, b/c Jilly was so enthralled w/ her farm, Ro wanted in.  And Mommy let her.  

Of course, Mommy also tried to instill the same strategy she had been working on for months.

Here's a typical sequence...

Ro comes home from school, asks to use the iPad for a bit.  We give her 5-10 minutes before dinner.  During that time, she farms.  

Later in the evening, after we've put Ro to bed, Jilly and I cozy up on a couch and she proceeds to do some much needed late evening farming.  (A farmer's job is never complete.)  

"What is this kid doing?" she'd say to the screen...I think.

I stare at her but intentionally do not respond.

"I mean, is she just trying to reverse everything I've been working toward?"

Still nothing from me.

"Why would she buy two more horses when we obviously have to build another mill?"

I can't resist.  "You do know this is not reality, right?"

Wrong move.  Jill's eyes dart from the screen and thru my eyes.  It hurts.  It burns.

"I've worked on this for quite a while now.  I don't need her undoing what I've accomplished.  If she's going to farm w/ me, we need to work together.  She's working against me."  

I can't resist...again.  "Who gives a shit?"

(Sometimes...often times I like to push buttons.)

Jill just looks at me w/ an obviously-you-don't-get-it look on her face and proceeds to undo what Ro did in her five-minute massacre earlier that afternoon.

The next morning we're at breakfast in the kitchen.  Jill, invariably, brings up the farm.

"Rory, honey, when you're farming, can you please be sure not to..."  I fade out b/c I don't know what the hell she's talking about.  Nor do I care.  

What I do care about is what comes next.  These two are going to get into it.  

The two I'm-getting-the-last-word prize fighters go round and round trying to convince one another why their farming technique is best.  It can get heated.

I chime in again (in my head).  Who gives a shit?

So, on the one hand, I'd get frustrated w/ the fact they were letting pixels come between them.  

But, on the other, they're just passionate.  They're both so freaking passionate.  And I adore that.  

And I miss that.  

All love,

J, J, & r 

Friday, January 23, 2015

Cracks & Grief

I've recognized a couple things this week...some chinks in the Jason Lustberg armor...

As the J, J, & r trio, we had hit our stride.  We functioned on a high enough level that we could stay afloat, manage our daily activities - work, school, play - and periodically address Jill's ever-growing to-do list to keep her on the side of sanity.

We fell into our (unconventional) roles to ensure we moved thru the world like a quasi productive family.  Certainly nowhere near perfect, but we kept up...with smiles.

Well, it's a new fucking day.  And as I've expressed to Rory on several occasions, (whether we want it or not), there's a new sheriff in town.  And this sheriff is still getting used to the weight and responsibility that comes w/ the badge.

Every time I make a mistake -

I double-book a play date...
I show up to school a day early to pick up Ro...
I leave a fucking tissue in my pants, it gets in the washer, and rewards me w/ dryer confetti...

 - the pressure I've applied to myself feels more acute.

Yes, I'm aware I've absorbed a handful of responsibilities that make my juggling act a bit more cumbersome.  But, I'm also aware that, no matter the number, these are my responsibilities and I need to learn to manage them.  Now.

Life's not going to wait until I get my shit together.  My shit needs to be together.  Now.

I tend not to give myself a break (or cut myself slack, as a dear friend of mine attempted to instill in me).  Jill knew this.  She would often stop me in the midst of my anxiety.  (Pick a moment, any moment.)  She'd point me in the direction of perspective.  And, ultimately, I'd find it, slow my breath, and move forward.

Well, now finding that direction is on me, too.

And shit's slipping thru the cracks.

As a general example, I'm not honoring the two-way friendship street.  You've checked on me.  Now it's my turn, right?  But, fuck if I can't get myself to do it.  I'm a bit scattered in the head.

I'm not centered.  As much as I'm trying to get there thru meditation, running, etc., I'm off.

Which leads me to my grief.

How grief manifests itself is both complicated and intriguing to me.

Ignorantly, I've expected grief to come in the form of periodic tears, spells of anger, and other clearly defined moments.  And, sporadically, this proves itself to be true.

But, I think the ignorance surfaces b/c I assumed that when the tears dry up, grief goes to the sideline.  It waits until I decide to call it back in for another round.

However, from what I can gather thru endless self-analysis, I don't control the grief.  Moreover, the grief doesn't have an 'off' button.  It's a constant churn that hums inside me every waking and sleeping moment.  Every moment of every minute of every day.

Right now grief has a tight grip on me.

I think this is why I can't seem to get enough sleep in a night...or a day.  Unbeknownst to me (until today, I think), the grief is feeding on my energy.

And I'm fucking zapped.

So, what do I do?  Fight the grief?  Why?  What good will that do?  I imagine it just needs to run its course.  You can't force grief out of your system.  Well, maybe you can try.  But, I can't imagine it's beneficial to do so.

Instead, I'll choose to (continue to) coexist w/ my grief, accept it for what it is, and attempt to cope.

That's what Jill would want.

All love,

J, J, & r

Real quick...despite what you may read into this post, this is not a cry for help or a poorly veiled attempt at getting a 'you're doing the best you can under the circumstances' note.  I don't expect them.  I don't need them.  Like all of my previous posts, this is just a space for me to express my thoughts.  I'm just grateful that you continue to read, share, and maybe even relate to (some of) them.

Thursday, January 22, 2015

I believe I was in eighth grade when I was originally compelled to dye my hair.  A classmate mentioned that Sun-In was a simple, inexpensive, and effective way of lightening your hair color, w/ just a few pumps of the spray.  Well, hell yes.  I'm in.

What my peer neglected to mention was that Sun-In was best suited for hair already on the lighter side of the spectrum - your sandy browns, strawberry blondes, etc.

My hair, though dark dark brown (at the time), was often mistaken for black.

Well, I sprayed that shit in my hair and effectively oranged the top half of my head.

I'm already going thru my fugly stage and I pour salt on the wound by making my head look like a freaking tangerine.  Well played, Lustberg.

While my dye job was one and done, Jill made a freaking life of it.  No kidding.

If you knew her, depending upon when you knew her, it's more than likely you experienced at least three different hair colors and hair styles.

Admittedly and obviously I only witnessed a fraction of them firsthand.

When we first met, as my college advisor, graduation mentor, turn love interest, Jilly had a short cut that lay a few inches above her shoulders - a bright, autumnal orange/red color.  Beautiful.

While living in Houston, Jilly's hair grew longer and darker.  Despite the heat, her hair was the longest it had really ever been - several inches past her shoulders; a deep, dark reddish/brownish hue.

Shortly after we moved back to STL, our first diagnosis hit...and w/ it came the first hair loss.  I wouldn't call that so much a new style as it was a traumatic event.

When it grew back (curly at first), Jilly went back to the reddish color.

But, like most of her cuts and colors, she grew tired of it.  She wanted something new.  Something fresh to shake things up a bit.

Enter platinum blonde.

I remember Jilly bringing up the idea w/ me for the first time.  Not surprisingly, she had done her research - comparing cuts w/ colors w/ skin tones.  She was convinced it would work.  I was not.

So she did it.  

And she was right.  If you ask me (you didn't, I don't care, my blog now), that cut and style was far and away the best look for Jilly.

And she knew it.  She wore it well.  That style exemplified Jilly - bold, funky, confident.

No kidding, each and every time we went out - Siteman, restaurant, grocery store, Jilly would get hit w/ multiple compliments.  It occurred so often that I thought she was planting people.

"Come on, are you kidding me?" I'd ask her...again.

"I told you...people like it," Jill'd smile at me.  "What can I say?"

She wasn't fishin'...but we like what she caught.

What's my point w/ all of this?  I don't know.  All of these posts are streams of consciousness.

I guess this one is just a simple remembrance.  When you read it, maybe you picture Jilly in a certain way, w/ a specific style.  If you do, got a pic?  Share it.  It'd be great to see all the iterations in one place.

Redhead, platinum, fucking cue ball - I'm all in.  I'll take 'em all...all over again.

All love,

J, J, & r

Tuesday, January 20, 2015

Jill & Eye -or- Eye Sore

“It’s really quite an anamoly,” the optometrist says somewhat excitedly to me as she pulls back from the eye torture exam contraption.  

Ever since I was a child, I’ve had an aversion to eyeballs.  Close-up images make me gag.  Witnessing eyeballs being touched or altered in any way makes me dry heave.  And, no kidding, when I speak to you face-to-face, where a normal person looks into your eyes, I focus on your mouth.  I speak to mouths.  This has always been my way.  No likey the eyeballs.

I’m not sure where this fear stems from, though I’d like to pin it on my parents.  See, I can remember being young and my mom having to straddle my dad on the couch w/ his hands under his ass just so she could insert drops into his eyes.  To me, this was nothing more than logical.  What didn’t make sense was how anyone could voluntarily permit anything - liquid or otherwise - to touch their eyeballs.  So, I like to think I adopted this fear of the eyeball from my dad.  Thx Dad.

The day started like any other.  I headed into the office for some stimulating spreadsheet analysis and conference call navigation.  That’s right, I work in the live music business.   

Mid morning around 10, I noticed something was irritating my left eye.  It happens to us all.  Probably some lint or something.  So, absentmindedly, I tried to rub it out.  No luck.’s now 3...the pain is getting worse and it’s so distracting that I can’t focus on my riveting conference calls or the cells in my spreadsheets.  I decide its time to close up shop and head home in an effort to sleep it off - or out - of my system.

I call Jilly to let her know I’m heading home.  Apparently she has forgotten my eye phobia and recommends I redirect myself to her optometrist’s office to see if they can fix the problem.  “I’ll call ahead, make the appointment, and let them know your issue w/ eyes,” she says supportively.   I put up a bit of a fight, but ultimately caved b/c the pain was only getting worse.  So, I pirate-eyed my way over to the “doctor’s” office.

Upon entering the office, I proceeded to check in, fill out paperwork, and provide insurance information all while my eye continued to tear and become more and more irritated.  I took a seat and waited for my number.  

It was at that time - for those few minutes - when it really sunk in where I was.  And this is when the questions began to flood my mind, starting w/ “What am I doing here?  Why not leave?  What will they do?  What will they see?  How will they get anywhere near my eye w/o me attempting to go Jewish ninja all over them?”

The thoughts continued as they led me to the know, the room w/ the chair...that cold chair that is connected to the eye exam equipment.  (I swear replicas of that chair are placed in black sites across the globe to ‘acquire intelligence.’)  As soon as I was seated, the doctor entered and smiled at me as if she was pleased w/ her career choice.  

As much as Jill had attempted to warn the whole building before my arrival, it quickly became clear to me that the message of my phobia had not traveled to the doctor’s ears.  She was much too relaxed, too loose w/ the language.  “I just need to get some eye drops so I can see your eye better.  I’ll be right back.”  She left the room and my heart beat amplified into my ears.

Why drops?  Can we avoid them?  And why so nonchalant about them?  

When she returned, before she attempted to dispel the drops in my eye, I interjected, “I don’t want this to come across the wrong way, but I have difficulty w/ eyes and will not likely make this very easy for either of us.  So, do what you need to do, but know that I will be on auto fighter right now.”

The doctor laughed it off and approached me w/ the tiny bottle of drops.  After three attempts, she was able to pry my lid open and drop in the goods.  

“Oh, and this is going to burn like the devil,” she says as she pulls back from my frightened face.  Really, she says this to me.

I’m thinking, what is the matter w/ you?  What kind of torture chair side manner is this?  Burn like the devil?  My wife recommended I come see you?  Does Jilly have an ulterior motive?

Sure enough, just as the burning was setting in, the doctor asked me to place my chin on the contraption to examine my burning eyeball.  This is not a problem for me...just don’t touch the eye.  Look all you want.  Window shop.  Just don’t touch.  Look.  Don’t touch.

After a few seconds, she pulls back, stands up and says, “I’ll be right back...I just need some tweezers.”

What?  What the fuck?  Are you kidding me?  This is a joke, right?  My wife put you up to this.  You don’t use you?  These are official optometrist instruments?

Is she planning to Macgyver my eye?  Was this tweezer at the bottom of her purse, sharing real estate w/ dirty coins and old Trident wrappers?  Is this normal?  I suddenly feel the need to check the diplomas on the wall and the sign on the front door.  Is this place legitimate?

When she returns, there’s no hiding the fear.  She can see it on my face. “It’ll be fine, no big deal” says the devil burner.  She proceeds to prop my chin back up on the stand, move in and come at me w/ the tweezers.  After a minute or so, she slides back and smiles, “Got it.”

My face flushed, I pull back and take a deep breath.  My heart rate is a bit higher than normal.  But I’m ok and apparently cured.  In the clear.

Until the doctor proceeds to explain what caused the irritation and what resulted from it.  “Here’s what happened.  You have pores at the bottom of your eye.”  I’m getting queasy.  “They’re like pockets.  And you got a hair - an animal or human hair, unsure which one - stuck in one of these pockets.”  I’m full on nauseated.  “Not only that, but the hair was sticking out of the pore at a perpendicular angle, rubbing against your eyeball.”  Now I feel like Jilly’s cat as she’s gearing up to yack.  “So, whenever you rubbed your eye, you scratched the hell out of your eyeball, causing a severe abrasion.”  Severe abrasion?  That sounds serious.  Anything w/ the word ‘severe’ in the description sounds serious.  

At this point I’m barely hanging on, but attempting to remain cool and calm on the exterior.  

The doctor turns to her computer to enter her notes into my records, while continuing to explain my recovery plans.  “We’ll need to apply a contact cast to your eye...”

After this term, I hear nothing else but my questions...What’s a contact cast?  Is it an eye patch?  I can do an eye patch.  But what if it’s something else?  Something that actually touches my eye...a cast that is actually applied to my eyeball...something that moves and darts w/ my eye as it shifts directions.  

The next thing I remember I was trying to recall what my previous thought had been, but unable to retrieve it.  What was I just thinking about?  Where exactly am I?  It was difficult for me to grab onto a particular thought…

And then I came to.

I was still in the exam chair, but now found myself drenched in sweat while, w/ a look of deep concern, the doctor applied cold, damp paper towels to my forehead and back of my neck to cool me off.  

Yes, I had passed out.  The combination of everything - the physical irritation, the anxiety over an eye doctor visit, and the overly generous description of my ailment by the doctor - had done me in.  I was on overload and needed a restart.  

I slowly regained my composure, feeling ready to walk out the door and never come back...until I heard the doctor utter, “When you’re done applying the drops, three times daily for a week, I want to see you back for a follow-up examination.”


(Yeah, there’s an epilogue to this one.)

When I left the torture chamber that afternoon, of course I immediately called Jill before driving home.  I proceeded to tell her - in great and dramatic detail - what had just occurred.   

While she fronted a voice of concern on the phone, she later admitted that she had to fight to hold back the laughter that was ready to spew from her face.  She got the biggest kick out of this one.

You’re welcome, babe.

All love,

J, J, & r

Take care of those eyes, kiddo...

Friday, January 16, 2015

The Word Itself

It was only a couple weeks after we moved (back) to STL that our world was turned upside down.  Jill had just begun her incredible, but shortened career at Wash U (aka Disneyland).  And I was getting settled in my new office space in the Loop.

Then a biopsy was scheduled.

Now, I was familiar w/ the word 'biopsy,' but not exactly clear on the meaning or purpose of the test itself.  When it was made clear to us that a biopsy would be done to rule out certain ailments, I was game.  We were game.  Sure, do what you've got to do.

Because, in my mind, Jill had already dealt w/ her fair share of medical maladies in her youth (pre me).  Those days were in the rear view.  She had her fill for one lifetime.  Smooth sailing and blue skies ahead.  We're good.  We're always good, damn it.

So, when the physician greets you in the waiting room and suggests we talk in a private room, I don't blink.  I figure this is standard protocol.  Keep it all private and carry on.

My mother in law, on the other hand, knew what was up.  She knew a 'private meeting room' didn't mean good news.

We jam ourselves into this cold room and the cutter closes the door.  We're greeted by a shitty hospital couch, two ergonomically incorrect chairs and a desk for God knows what.  Oh, and the tissue box.  The tissue box should have been a sign.  (But, I try to consciously omit 'should' from my vocabulary.  It's a dirty word.)

Again, I'm fine.  We're fine.

We plant ourselves in the uncomfortable seats and the white coat begins to tell us about the procedure.  It appears Jilly has cancer.

Wait...wait wait wait...wait...what?  Check your charts, buddy.  This is my wife.  Jill Marie Lustberg.  You must have it wrong.  We don't get sick.  She doesn't get sick.  Not like this.  This, unfortunate as it is, happens to 'other people.'

But he continued.  And as words fell out of his mouth, I remember feeling wrapped up in a swirl of uncertainty.  The floor just dropped out.  What the fuck do you mean?  What the fuck does this mean for us?  For Jilly?  For Ro?  For me?  

And if I'm honest - and damn me for being so fucking honest, I did have the thought, how am I going to raise a child on my own?  Seriously, w/ little-to-no detail about Jilly's prognosis, my mind already went there.  It's embarrassing to admit.  Of course, that thought was immediately followed up w/ another - Fuck me.  I am not the focus here.  Jilly is.  Get your priorities together, you fucking waste of space.  Shut up and step up.  Easier thought than done...

So, that was really the first time the word cancer hit me.  Hard.  In the face.  In the gut.  In the heart.

I don't know if the heaviness of the word hit me in that cold room or afterward when I was w/ Jilly in post op.

She hadn't been notified of the diagnosis and we all agreed the message come from the doc (though w/ me present) as he could provide context and field questions we knew Jill would have.  (If I were the messenger, my responses to Jilly's questions would undoubtedly be, "I don't know.")

I found myself bedside as Jill's anesthesia wore off.  I remember her asking me point blank if they found anything of concern.  I looked at her, looked away, and responded w/ another topic to volley back and forth.  Thankfully for those few moments before the doc arrived, she didn't pick up on my tap dancing.

When the doc rolled in, it was the three of us - Jilly, me, doc.  He told her.

I'll never forget Jilly's face.  And without going into detail (b/c some memories are simply made for me alone), the word cancer took on a whole new, personal, and horrid meaning to me.  To us.

It was that moment (and the subsequent moment when Jill was diagnosed metastatic years later - again, a moment I keep for myself) that injected a fear into me that I will consciously never let go.

Not to mention hearing your two year old daughter (or 3, 4, 5, 6, 7, and now 8) let that word pass from her lips.  No fucking child should have any idea about cancer.  (There it is again.  That word - should.)  And hearing that as the father...well, it fucking melts and breaks me each and every time I hear it come out of Ro's mouth.

Yes, I think we probably all share a general fear of cancer.  It's hit friends, family, even maybe ourselves.  Without a doubt, it's certainly impacted all of our lives in some capacity.

But, for me, while I certainly fear the meaning, the repercussions, and the sheer ugliness that it inflicts, since that original diagnosis day nearly seven years ago, I genuinely fear the word itself.

I go out of my way not to use it in conversation.  If you've recognized in previous posts, I rarely type 'the c word.'  Instead, I use words like 'disease' or 'diagnosis.'  For whatever reason, these words are more benign (for lack of a better word) inside my head.  'Cancer,' on the other hand, is a malignant monster that preys on anyone.  It's a fucking equal opportunity killer.

It has a hold on me.

And while it's not something I'm proud of, I voluntarily embrace this fear.

I think popular belief is that you can't let something like a word have such an emotional hold on you.  Don't give into it.  Rise above it.  After all, it's just a word.

If that position works for you, so be it.  Go w/ it.  Onward and upward.

For me, that word - that godforsaken word - is so loaded with upheaval, meltdowns, and life altering challenges, that I refuse to not let it carry the weight it deserves.

Please don't confuse this fear with respect.  I spit in the fucking face of cancer.

But, at the same time, it has so significantly altered my life that I can't disconnect the word from that emotion.  (Shit, does that make sense?  It does in my jaded brain.)

Jilly never knew this.  (She knows it now.)  Even when she would use the word (and she would use it freely b/c she is a super hero), I'd cringe.  If we could play back those moments, if we looked closely enough, I imagine we'd see the slightest flinch in my face.

So, do I recommend adopting fear of a word?  Nope.

Do I hope that Rory will adopt such a fear?  I do not.

Will I carry this fear w/ me until the day that I die?  Right now, I intend to.

All love,

J, J, & r

Tuesday, January 13, 2015

Got a Jilly Story?

When we were younger, I remember my sister and I consistently making the mistake of walking into the Blockbuster video rental store w/o a specific title in mind.  Sure, we had had many options in mind before entering the store.  But, for whatever reason, as soon as we pushed open the rental store's door, we blanked.

As a result, we'd roam the aisles w/ equal parts purpose and aimlessness trying to find the right VHS tape to perfectly fit our mood at that moment...(which tended to change as we scanned new titles in different sections of the store).

More often than not, we'd get sucked inside the walls of the video store for 20, 30, 45 minutes, just looking for a fucking VHS tape to entertain us for no more than two hours.

This is what it's like in my head right now.  All day every day I'm flooded w/ bits and pieces of experiences, anecdotes, and memories of Jilly.  But, when I make a conscious decision to share a story w/ Ro, I blank.  I'm unable to constructively deliver a complete story.  And that's not good.

Ro needs her mommy engrained in her head and her heart.  Every day.  Always.  It's my job to make it so.  And yes, I pepper the day w/ little memories here and there.  But, Ro needs the rich, in depth stories of Mommy as well.  She needs it all.

This is where you come in.

You - you beautiful people - you continue to check in and ask how you can help, what you can do to make things better, or a bit easier for both Rory and me.

Here's one.  Share a Jilly story.  Maybe you've already done so w/ your parents, spouse, kids, or friends.  And that's fantastic.  Keep going.  But, w/ all sincerity, I'm requesting you point your Jilly stories to Rory.  She needs to hear them, read them, and remember them for her lifetime.

Don't get me wrong.  I know it's on me to paint a clear and detailed picture of Mommy for Ro.  I'm just asking you to pick up a brush and join me at the canvas.

It's likely you have my phone &/or e-mail address.  (If you don't, find someone that does.)  Send your stories, your remembrances to me and I'll see that Ro gets them.

Ro's birthday is coming up in early February.  I can't think of a better gift for her than to be flooded w/ stories of her mom.

So, for now, I'm caught up on laundry.  I'm cooking like a champ.  I'm scheduling play dates like a boss.  What I really need from you is to help flood my kid's head and heart w/ Mommy memories.

I thank you with all my heart in advance.

All love,

J, J, & r


I'm not exactly sure when, where, or why it started.  But, it did...and it became an ever present trend in our relationship.

We'd find ourselves in a nice, calm, serene moment.  Maybe we're lying on the couch in the midst of light conversation.

Then, out of nowhere - it was always out of nowhere and w/o context - Jill would sit straight up, like a prairie dog sniffing the air.  (Yeah, that's right.)  "Did you hear that?" she'd say w/ a serious expression on her face.

"What?  No.  I don't hear anything."  I wasn't catching on...yet.

"I know.  I can't...I can't hear your heart.  Is it beating?"

Oh, damn it, here we go...

Jill would proceed to quickly lay her head against my chest.  "Nope, I don't hear a thing."

"I'm fine," I'd interject, knowing full well what was coming next (and kinda looking forward to it).

"No, no.  I really don't hear anything," she'd say, holding that look of concern on her face.  "But, don't worry.  I've got it.  I'll take care of you."

"Oh, please don't."  (Please do.)

That's when Jill would proceed to administer a highly animated version of her own brand of CPR.  Hands on my chest, Jilly would rise above my torso, and proceed to quickly bend her arms, coming down as if she were pushing hard against my chest to remove the hidden obstruction causing my (un)apparent cardiac arrest.

She would repeat this over and over again.

And with each and every downward motion, two things occurred...

  1. Jill's head would come w/in centimeters of banging into mine w/ great force, always causing me to fear a couple's concussion was imminent.
  2. Jill would scream, "KA-CHUNK...KA-CHUNK...KA-CHUNK!" as if this was even remotely close to the sound created when someone really conducted CPR.  
Okay, three things occurred.  We would both laugh uncontrollably.  I mean, near tears.  

Again, I don't recall the origin of the 'ka-chunk.'  But, I'm certainly grateful to have experienced it.

All love,

J, J, & r

Monday, January 12, 2015

Golden Globes

The first movie Jill and I ever watched together was animated.  And she owned it.  If you know my (dark) movie tastes, this relationship appeared doomed from the moment she pushed 'play' on her VCR in Columbia back in 2001.

The movie was "Anastasia," w/ primary voiceover work from both John Cusack and Meg Ryan.  Jill used Cusack's role to woo me to the screen.  (She knew/knows my deep, undying love for "Gross Pointe Blank.")

We watched it.  It was fine.

But, I needed to counterbalance this first move on the movie chess board.

Enter "Requiem for a Dream."  I think it's fair to state that we both settled on it at the video store.  But, I found it.  I pushed for it.  And we watched it.

Both of us agreed it was well done and intense (not unlike most Aranofsky films).  However, I had the sneaking suspicion that I enjoyed it more than Jilly.  Regardless, it didn't seem to phase her - my fascination w/ the darker side of things.  She rolled w/ it, didn't run from it.

As our relationship progressed, so too did the movie watching.  And while we each leaned to our separate corners, we were also pleased to find a very broad middle ground that allowed each of us to get great satisfaction from the same films.  We found our artsy, independent movie groove.

For me, film has always been a (much needed) escape or respite from reality.  When reality gets heavy, I dive deep into fiction on the screen.  For example, my evening escape as of late has been American Horror Story.  It's dark, complex, and (to me) extremely engaging (namely Season 2) - just what I need to step outside myself for 45 minutes at a time.

For Jilly, film was more of an invited distraction than an escape.  It was entertainment.

If the film made us both think in a new and creative way, we were in.  We were hooked.

So, while the awards' programs tended to focus on the mainstream darlings, we shifted our attention to events like the Spirit Awards, that honor the monetarily leaner films that (we believed) often tackled more interesting topics and themes.

That indie'ness aside, Jilly certainly had a soft spot for the red carpet.  She'd plop herself in front of the television for the big ones - the Oscars, the Globes, etc.

But, for her, it was less about the win/loss columns.  It was more about the style.  Who looks good?  Who doesn't?  Investigate.  Explain.  Elaborate.

It was genuinely funny (for me).  I often road shotgun during these viewings.  More often than not, Jilly would talk to me about what so-and-so is wearing.  I didn't care.  She knew I didn't care.  But, damn it, I played along.  Not always.  But, I got in there.  I've critiqued a few hairstyles in my day.

Why?  Simple.  For her.

Jill's constructive critiquing would continue for the balance of the ceremony.

So I found myself watching the Globes last night.  Why?  I really don't know.  Maybe Jilly drew me to the screen.  Maybe I needed an evening escape.  Regardless, I stuck it out till the end.

And as I shut off the television, I was immediately struck by a feeling of emptiness.  As I made my way into bed, my mind quickly found the specific source of that emptiness.  I watched this awards show and didn't have my partner alongside for the ride.

Yes, there have already been many firsts since Jill passed.  You can think of all the big ones thus far - Chanukah, Christmas, New Year's, etc.  And they certainly take it out of me at moments.

But, for whatever reason, it remains the little ones.  The little firsts are the ones that knock the air out of me, leave me w/ that (now familiar) empty feeling, and cause brief moments of disarray.  I don't know exactly why.  A guess would be b/c the little moments are often the ones I didn't have to share w/ anyone.  They were ours - just Jilly and me.

So, when one half - the better half - is absent, you feel that absence.

I feel that absence.  I feel it down to my freaking core.

All love,

J, J, & r

Thursday, January 8, 2015


Jill thought knew I had many of them.  Some are apparent to many.  Some just Jill.

But enough about me and my idiosyncrasies.  Let's put the spotlight on Jilly.  She had a few eccentricities up her sleeve as well.  Allow me to elaborate...

Any time, any place, Jill audibly and heartily giggled when she did a flip of any kind - whether it be a somersault, a cartwheel, or even a handspring.  No matter if it was on land or in water.  Consistently, every single time Jilly landed, she let out what can only be described as pure bliss in the form of laughter.

She swore this had always been the case.  I think she inserted the laugh track when she learned I can't do any of the aforementioned tricks.  (Yeah, that's right.  I can't do a somersault.  The cat's out of the bag.  Let the mocking commence.)

When she concentrated, Jilly poked her tongue out of her mouth.  It wasn't a 'say aaaah' extension.  It was more subtle...though sometimes it did roll up ever so slightly toward her nose.  (I wish I had a picture.  My description su-ucks.)

Jilly could spot a spelling mistake ANYWHERE.  I'm convinced she didn't find them.  They found her.  They jumped off the page, menu, billboard, website and smacked her in the face.  So often that she began to quiz me as soon as she saw one.

"Quick, where's the mistake?" she'd say to me w/ anticipation.

"Damn it.  I don't know.  This isn't my game.  Let's play something else."

Two long minutes later I'd catch up and point it out.

"Can you believe that?" she'd say.  "How does that happen?"

Jilly was an anagram whiz.  We often positioned ourselves in front of the radio to listen to, and participate in NPR's Sunday Puzzle.  (Yep, we gathered 'round the radio like it was good ol' 1945.)

If it was an anagram puzzle, I tapped out and Jill rearranged those words or phrases in her head quicker than the on air contestants.  Really.  She just had a knack for it.  So, I guess this one is more a knack than a quirk.

She - and this has since been adopted by her daughter - would often start telling me something (eg a story) and I'd often interrupt to let her know she'd already shared this one.  No matter.  She'd acknowledge your comment and continue on her merry way w/ her story.  She wasn't going to let the risk of repetition keep her quiet.  She had started.  She was going to finish.

Now, if she's aware of this post, as I'm sure she is (I'm convinced she's aware of everything), she's looking at this very short list and thinking two things...
  1. That's all you've got, Lustberg?  Of all my quirks, you're going w/ these?  And to that I say, for now, yes.  Yes, there are more.  But, I'll rely on others to add to the list.  Believe me, I could go on...
  2. For every quirk of mine that you list, you do know you have twenty of your own, right?  Yes, I know.  I also know this is (y)our blog, not mine.  No need to open that can.  We could write volumes and volumes of my eccentricities.  But, for now, let's just both admit that I have them and that you, Jilly, embraced, supported, and even encouraged them.  So, thank you for that.
We were all due for a lighter post.  This is it.  

All love, 

J, J, & r

No, we did not partake...

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

Wednesday, January 7, 2015

Feel Her

Do you feel her?

This is the question I've been asked in various forms by a handful of people.

My initial response has been, "No, not really."

But, then I have to stop and think about it.  What the hell does that even mean?  Do I feel her?  Physically, certainly not.  Emotionally, I think so.  But, what are the other ways to feel someone?

I guess my initial interpretation of this question was a bit more pointed --> do you recognize any signs of her presence?  And for that, once again, I lean to no...

...w/ the large caveat that finding individually wrapped Moonpie snack cakes in both my Chattanooga hotel room and in Jill's favorite STL smoothie shop has to be chalked up as a sign of some kind.

But, aside from these visual cues, what else stands out?  Not a lot.

Am I looking too hard?  Probably.  Well, absolutely.  And w/ great consistency.  To the point that I find I'm saying to myself, "When you stop looking, that's when you'll find/feel her."

It's just all still so fresh.  I can't just turn of my seeker sensor.

I'm still waiting for Jilly to walk into whatever room I'm in and say, "Ha!  Gotcha!  Let's dance in the kitchen."  Really...

I've even gone so far as to ask Jilly out loud to work a little harder, make a little more effort/noise to contact me, contact us.  I promise I'm sincerely open to receiving it...unless I'm doing it wrong.

Then, after a recent discussion w/ my mom, I had to reevaluate my translation of this question.

Do I feel Jilly? 

I mean, without question, I feel her in my heart.  She continues to be there among the rubble.  Her presence there will never diminish.

And she's definitely in my head.  In so many ways...

I'm finding that I often confer w/ Jill, kind of playing the "What Would Jilly Do?" game.

When friends ask me (or us) to get together (thank you, friends), even if it's not a preferred outing for me, Jill's in my head.  "Get out there.  Make yourself available.  Be social.  You're good at it.  If not for you, then for Rory.  You both need this."

When Ro and I are eating and she wants extra dessert, for example, Jill's there.  "Just give in to the kid once in a while.  It's not going to hurt her."

When the holidays hit, Jill was in my head, reminding me to order New Year's cards (if you didn't get yours, I did it wrong), find dog sitters before we travel, and stay connected with family.

It's interesting.  In a way, it remains a two parent household.  It's just that one of the parents has been absorbed by the other.

(Don't misunderstand me.  I am not Jill.  Only Jill is Jill.  I don't mean to suggest that I have replaced her.  It's just not the case.  Nor would I want it to be.  Nor is it feasible.)

What I am saying is that, yes, I guess I do feel Jilly.  I feel her in my everyday life.  As she did in life, Jilly continues to guide me.

I can't stress that point enough.  Jilly guided me.  Whether she knows it or not, she guided me by being the person that she was.  She made me want to step up my game as a husband, father, friend, and family member.  She helped me find my way.  She propped me up when I was (waaaaaaay) down.  She instilled confidence in me when I couldn't inject it myself.  She believed in me.  She always freaking believed in me.

And I need to believe that she still believes in me.  That keeps me going.

Because while I admit to being her rock, she was, and is certainly mine.

So, I think there's been a micro evolution w/in the text of this post.  I don't feel Jill...I don't know if I feel Jill...of course I feel Jill.

And that's been my personal progression.  I just want to do what I can to ensure there is not a regression.  I need to feel Jilly, always.  She's too much a part of who I am to be dormant.

Whether this particular post makes any sense to you or not, it certainly (and selfishly) was good for me.  So, as always, thank you for reading, sharing, and supporting.

All love,

J, J, & r

Tuesday, January 6, 2015


We had boarded the cruise ship just the day before.  We certainly needed more time to get acclimated w/ our surroundings.  But, there was no time for that now.

We awoke early the next morning in separate cabins.  It was a Tuesday.  If memory serves, I shared a cabin w/ my dad, while Jill slept w/ my mom and sister.  (Though admittedly I'm fuzzy on these details.  Jill wouldn't be.)  The intent of this separation was to ensure we didn't see one another until it was traditionally permitted.  Funny b/c we tend to avoid 'traditional traditions,' choosing instead to create our own.

Jilly spent the morning getting dolled up - white dress, fancy hair, fresh makeup, new jewelry, the whole nine.

I threw on a new suit and tried to make sure my dad didn't yack on me.  (He had been extremely sick in the days leading up to our departure and barely made the trip.)

I don't recall every moment of the ceremony; really just a few flashes come to mind.

But, the one vision that will forever be engrained in my head and my heart is how Jilly looked that day.  She emanated pure beauty.  She glowed.

And here's the thing.  I imagine (if they're doing it for the right reasons) most brides glow on their wedding day.  But, I guess what didn't really strike me until I began to reflect on that day was what caused Jilly's glow.  It was me.  It was us.  Jilly beamed that day b/c we had found one another and chosen to spend the rest of our lives together.

I guess all of that seems obvious.  But, when I really give it thought and open myself back up to that day, it feels new again.  I'm still surprised by, yet grateful for that day and that glow.  At risk of cheesing out this post, real love created that fucking glow.

And if you ask Jilly or I, that glow shined in us from January 6, 2004 until November 12, 2014.  You may not have always seen it.  But without question, in sickness and in health, good times and bad, we always saw it in one another.

On this day, our eleven year anniversary, I choose to remember and bask in the glow of what was truly a once in a lifetime relationship filled with comfort, understanding, and unwavering true love.

All love,

J, J, & r

Sunday, January 4, 2015


What a bitch.

Thankfully I got to know Jill before I met Sydney.  Otherwise Jill and I may never have crossed paths.

I first met Sydney at Jill's duplex in Columbia, MO.  As I've now done on numerous occasions, I was introduced to Syd w/ a warning.

Jill says to me as I face Syd's cold eyes for the very first time, "This is Sydney.  As cute as she appears, that's how evil she can be.  She likes me and no one else.  I wouldn't try to pet her.  She may attempt to scratch the skin off your face.  Best to just ignore her."

So I've got that going for me.  Satan's minion is lurching around the apartment w/ apparent free reign.  She may have the upper hand now, I thought, but I will woo her owner away from her.

And I did.

But damn it if I didn't realize being w/ Jill was a package deal.  When Jilly moved to be w/ me in Houston, Syd came w/.  When Jilly and I moved in together, Syd moved in.  When we got married and moved into our first house, Syd was there.  When we moved back to St. Louis and in w/ my parents, that fucking white demon continued with us...despite my best efforts.

I often joked about turning on the oven and keeping the door open to coax Sydney in.

"What are you doing?" Jill asked (already aware of the joke).

"We're having Thai food tonight!" I'd reply w/ false glee.

As Jill began to be more physically affected by the disease, my fuse for Sydney shortened.  I had no time or patience for her.  She was an unnecessary distraction and I wasn't shy about sharing my point of view.  I certainly didn't want to upset Jill.  But, I also didn't want this fur ball taking my eye off the ball.

You're hungry?  Grow opposable thumbs and get your own damn food.
You need your litter box cleaned?  Get over it.  For God's sake, you shit in a box.
You want water from the bathroom sink?  Fuck you.  Get down.  There's water in a bowl on the floor for you.  You're a cat.

The reality, however, was that I also tended to the cat.  Jill first.  Sydney...later.

Before Jill passed we actually had a conversation about Syd.  In short, we agreed she'd lived a long, pampered life (17+ years) and if I needed her off my hands, Jilly would support me making that decision.  And while I certainly despised that puss, (unfortunately) Syd wasn't showing signs of being ill enough for me to make that move.  I mean, I no likey the Sydney.  But, I'm not ready to throw her in a bag and toss her in the river.  (Though I've imagined it...and received offers.)

Jill passes.  Jill passes and this fucking cat is still here.  The ultimate survivor.

(Oh, note to self - new reality TV concept - "Survivor: House Pets Edition.")

I don't go out of my way to make life easier for Sydney.  But, I do continue my responsibilities of ensuring she has what she needs - food, fresh water, a clean box, a quick brush, etc.

But, despite my adequate efforts, Syd starts to show her age.  Her fur is matted.  And she's now leaving little presents for me outside the litter my bedroom.

So I called the vet and we rolled in this morning.

I knew the option to pull the trigger (for lack of wanting a better phrase) would be on the table.  Though I still wasn't fully convinced it was the right option.

I had a very candid, in depth conversation w/ the vet.  We looked at all options, opted to run a few tests, and she conducted a physical examination.  The tipping point for me was when the vet compared the quality of Syd's life to that of an elderly person.  "If she were human, she'd be in Depends and in hospice by now."  That sealed the deal for me.

I first called Ro to let her know I was making this difficult decision for everyone's well being, including Sydney's.  I put the phone on speaker and allowed Ro to say a few final words to Syd in the exam room.  I think Sydney appreciated that.  I know Ro did.

I hung up the phone and the vet got to work.  I opted to stay in the room; talking to Syd, and petting her - both for comfort and out of guilt.

As cliche as it may read, it appeared to be a very peaceful process.  She simply went to sleep.  In my opinion and my life experience, we should all be so lucky.

I'd like to say this decision was an easy one, a long time coming.  But, the truth is that - in a way - Syd was a part of Jilly.  And while Jilly was at peace with this decision, the vote to euthanize any animal is a difficult one...even ornery one.

Sydney had a good run.  And while she was undeniably evil, she was always part of the package.

Peace and a little love to Syd.

All love,

J, J, & r