Who asked?

Deb and I got engaged around Christmas time in 1984.  Nobody told me I needed to have a conversation with her father, a rather intimidating man.  Still wet behind the ears, me, not him.

But to get there, we needed to actually GET engaged.

We were having fun living the good life.  We owned a co-op in Forest Hills, we had good jobs, we went to the beach on Saturdays in the summer and had (all day) Sunday dinner with her parents and brother, week after week after week after week.  Camping after Labor Day and a trip to the Bahamas in February.   We even snuck in a trip to Europe unbeknownst to all our coworkers.

I was, believe me, trying to get up the nerve to propose.  One day, she says, "What are we doing here?  Want to get married or no?"  I said sure.  It was probably not that cut and dried, but it was similarly direct.

Sometime later we were at dinner with her neighborhood friends and one asked me how I proposed. I said she asked me and I said yes.

Oh boy, I got such a dirty look from Deb.  It took her a good 10 years before she was able to tell that story and really own it.  I'm glad she asked me.  We could still be in Forest Hills waiting for me to pop the question.

Resting some more

Resting, taking morphine and coming to once or twice.  Ryan is here and when he was out of the room, she got lucid and learned he was here and was very pleased.  Before long, she had dozed off.

I did spoon her last night for a while, but oh my, she has a boney ass now.  She always had a prodigious backside.  When she had it, she wished she didn't.  

How I wooed Deb

Forgive me if you know these stories.  Further forgive me if I wrote on the same subject while in India.  That feels like a lifetime ago.  Some of the stories below we would tell in tag team format, so the content has been honed in the retelling.  Honed true?  I hope so.

I interviewed at Bankers Trust on March 17, 1981.  At my first sight of Deb I pegged her as a 40 something gray haired very good looking woman (who in fact was 23).  When I first spoke to her it was about who would hang my coat in the closet.  She wanted to take it and I wanted to do it myself.  It didn't go well for me with this pushy NY woman, assertive but not unkind.  Our first conversation was an argument over who would take my coat.

In 1981 I'd just gotten off the hay wagon having lived in Minnesota all my life.  New York had the draw of living anonymously, something I'd not yet experienced.  In fact when walking around as a newly minted New Yorker, I was amazed that there were any number of human restaurants.   I didn't get it but looked for evidence of dog or cat restaurants and found none.  The punch line here is when I finally read the signs as written, the word was Hunan.  I had to look it up (pre-internet) to find that Hunan is a Chinese province so it was likely they were serving humans a type of regional Chinese food.  24 years old and wet behind the ears, dripping wet.  Smart as a whip, worldly as a box of hammers.

Contrast this with my Deb.  Since she was 14 she knew how to bribe ushers at Madison Garden to see the top names in Rock music.  The subway was at her disposal and she had a circle of friends as wide as can be.  She even used to sneak into bars.

I craved quiet places on the side, being an observer.  Deb craved the middle of the room and thrived in being part of the action.

The first time she visited my apartment in Midtown, it was an unexpected surprise.  She never thought my roommate (Paul) and his future wife (Eileen) and I lived in a pig sty.  We did.  Sorry Paul and Eileen for speaking the truth.  Eileen was studying for the bar.  Paul was working as (towards?) a CPA and his mantra was billable hours.  And he was studying for the CPA test.  I wasn't going to be their maid and they weren't going to be mine, so we simply let it go. We were doing he best we could.

Deb looked at the place, aghast, rolled up her sleeves and started doing the dishes that had built up in the sink.  I was mortified and started helping but eventually wisked her away to our planned event of the evening - Midnight Bowling in Da Bronx.

The backstory for bowling is: she started a departmental bowling team in the Bankers Trust league.  I believe I was her target, but we had a half dozen other BT people in our department bowling team.  Oblivious me finally agreed under her pressure to join.  Monday nights we all met in the village and competed.  Me, not so well.  Deb, she had the moves and consistently did well.

Now this part of the story may or not be true.  I'm not calling her a liar, but she claimed someone pinched her butt on 14th street on the way to the subway after bowling.  Would I please walk her to the station?  Sure I would.  If she could at this moment, she'd still stick to that story.

To get home she needed the F train, I had the choice of N or F.  I took whichever came first.  I was trying to get home in time for the latest episode of Mash, the long running TV show in it's last season.   From either subway exit, I had to hoof it to make that 9pm start.

Her calculus of the situation was different.  If I liked her, I'd wait with her for the F train and continue to sit and talk.

Back to Midnight Bowling - She asked me to midnight bowling with her girlfriend Viv and her boyfriend who lived in da Bronx, In the cab on the way back to Manhattan, she put her head on my shoulder and then the light went off in my head.  She likes me.  Retrospectively, I realized there were certain clues I should have just plane read.  Oh, my.  How dense can a guy be.

Density?  I'm a dyed in the wool NPR listener.  NPR is public news oriented radio and is like the BBC world service in a way.  They broadcast news at 5pm until 6:30 and then cover Wall street for a next half hour show.  Listening to the radio news, making dinner was my daily routine.   Hey, I had nobody to go home to, so this is a good rut to be in.

She asked me one afternoon at work if I wanted to join her and her work girlfriends for a trip to Chinatown for dinner.  I said, and I quote, "No, I want to go home and listen to the radio."  Not reading her incredulous look correctly, I sputtered, "I do this every day and have been doing it for years."   Like that explained everything.

She thought, "If he liked me he'd go, but listening to the radio?  What kind of BS excuse was that?  Surely he could have made a better excuse even if he didn't like me."  I know this now.  We actually told this story in tandem, presenting both sides of the story as we go.   I loved to tell stories with her.  We learned when I was giving it over to her or getting it back.  Oh, we could tell a nice tale.

Bowling night was a success.  We had fun and it was definitely a date.  Roll ahead a week.  How about I cook dinner?  Sure, she says thinking at your house, really?  Eeew.  She arrived to a fresh, clean apartment.  I believe we sat on pillows on the (very clean) floor and cooked fondue in oil.  A very nice way to pass the evening.  Our first 1 on 1 date.

Another day at Carlson central

Today she had a visitor who gave her artificial plumbing, enough said.

She was quiet, partially aware.

Mary Beth Ahearn visited.  She sat with Deb for a half hour.  Deb gave Aide Lisa a dirty look  at first, but it didn't last.

Ryan's on his way.  Despite Deb's probation on him visiting her, we're taking some personal risk.  Mary Beth set the president.

Deb's resting

Deb's spent the day resting in her power recliner or in bed.  She got across her desire for a couple of spoons of chocolate ice cream.  By spoon, I mean the merest taste.  Such a simple thing.  The women caring for her got a kick out of doing something that pleased her.

What the heck is Robbin going to do?

It's been a tough 7 years or so.  I've followed her almost everywhere, driven her where I could.  Eventually Team Deb took over and gave me a week here and there to take a break.

Over that time I have developed new interests that keep me pretty occupied.  I learned a half dozen computer languages and did some interesting things for myself.

If I discount the poor shots that I simply try again, I'm playing very good golf due to going out any day it doesn't rain or snow.

In 2012 I took a machinist's class at the local NJ VoTech.  That is leading me into working on metal and splitting thousandths of an inch gives me a certain deep satisfaction.

To this end, I've bought a metal shaper and an old Italian lathe.  To come are a milling machine and a surface grinder.  With all that equipment and visits to the scrap yard, I hope to build myself a set of tools I can use on my equipment.  There are thousands of hours available for me to perfect getting a piece parallel within hundreds of microns.  Or at least learn what fools gold exists in a parallel that precise.

I visited the Basel any number of times and the one place that always pleased me was the Tingley exhibition (https://youtu.be/vJV3E4qX4EQ) - an outside water sculpture complex.

Another was in Disney world where the kids played on a concrete water fountain where squirts of water would come out of holes and you could see the stream from start to end while it was in the air. I can do that by making computer controlled valves, I think I can do interesting things that exercise both my computer and machining bents.

Both of these are kind of artsey and a nice mix between tech and aesthetics.

My routine has been to work in the barn from 9 or 10 until 5:30.  This is something I can continue and hope it keeps me busy after this episode in my life is over. 

Of course Ryan is getting married in July and if I luck out, they'll work near me.  I guess Pittsburgh qualifies, but oh, wouldn't it be nice if they found perfect jobs in Scranton or Binghamton?  I've said it to him before, but I get the look like, Right Dad, dream on.

  

The last days

It's Robbin writing now.  Deb has simply had enough ALS.  I'm writing to chronicle how her story ends.  I've told a half dozen people over the phone or in person and it is so very difficult to have the same conversation with individuals.  By writing the this, I'm telling her story and saving myself from a fresh retelling each time I think of someone else I know is dear to her.  Conversely, she is dear to almost everyone she's befriended and I'd either become toughened to the story or I'd be a complete mess.  I'll add entries as time goes on to keep everybody informed.

Let me tell what led her to decide to quit eating, if taking green glop laced with supplements, drugs and another dozen organic ingredients though a feeding tube embedded in her stomach can be called eating.

Last October and November, she gave up on medical treatments.  Her last (second) trip to North Carolina was too much to repeat monthly.  Taking 3 helpers to get her to the airport, to whisk her through the airport, on and off the toilet in a ladies restroom, on the plane and then off, into a rented car to a hotel and then to the clinic and back.  It was too much for her.  The stem cell benefits were not worth the trouble.  She came back completely wiped out.  She decided hospice care would give her greater comfort.

Comfort is truly a subjective state.  Imagine existing in a body that allowed you to nod your head, blink your eyes and make only a moan sound.  A moan that goes up fast means you're doing something she doesn't want.  Going down means no.  Silence is assent.  She is not comfortable by any measure.  The worst of it is, she's mentally sharp as a tack.

Yet she couldn't let go of communicating what she wanted.  For a long time we read her lips as best we could and we've all said ABCs so she could nod to the desired letter.  Remember in her natural,  healthy state, she communicated vocally at maybe 1000 letters per second and now she was communicating at 2 or 3 letters per minute.  If you know Deb, who used to reach down my throat to pull the words out of my slow talking mouth, 2 letters per minute is nearly unacceptable, yet attainable.  Oh it used to get my goat when her first word was WHEN.  Lots of ABCs in that word.

There are a lot of parts of her that needed fine adjustments we all take for granted.  A leg needing to moved a half inch right, an arm with a little stress on her elbow needing movement.  Drool needing a little wipe.  Hot hands, cold hands.  Knees up and then down. Nothing she could do from within could alleviate her discomfort. She could move nothing but her eyes and She is completely dependent on her care givers.  And they gave until it hurt.  They too have tender hearts right now.  These are my second wives.

As you know, she gets people to love her without trying.  In point of fact, one of her regrets is that these care givers will be unemployed soon.  This time should be absolutely and completely about her, yet she's concerned that they get good recommendations as they move on.  That's my Deb.

2 weeks ago (about January 3 or 4) she decided she wanted to be gone by the following Sunday.  She wanted me to find the right cocktail of her prodigious collection of drugs would let her go quickly and painlessly.  I was stunned but not surprised.  Intellectual me says she's probably right.  Given that she has  10% - 20% lung function an sometimes gasping for air, she found drowning in her own fluids repugnant.  Emotional me, asks can I do it?  Intellectual me asks what are the consequences?  A real debate was going through my mind.  Risks?  Worst outcome:  I could have supported her these last 7 years and my reward could be a jail cell.  I've watched too much Law and Order.  I couldn't have done it, for the record.

My conclusion was that this is a Lucy Ricardo scheme.  Lucy was the star of I Love Lucy, a sitcom from the 50's and rerun for the next 60 years here in America.  Every episode's plot was that Lucy had a scheme to achieve her goal (money, fame, etc), but she never considered the consequences of her schemes.  Rarely did it turn out how she imagined.  Deb's overdose plan was a quintessential Lucy scheme.

I contacted a friend whose wife was a long time hospice nurse.  She put us in touch with a person who gave this kind of advice and if we contacted her, Deb could learn her LEGAL options.  My plan was to give Deb the options I learned.  Before this could happen, I let on what research I was doing.

In very typical Deb fashion, she took over.  She wrote to the hospice nurse and was on the phone asking questions and getting the information directly.  When the phone call was over at 8pm on Sunday night, we were immediately contacting the end of life specialist.

Asking questions is a bit of a misnomer.  Deb hasn't enunciated a word in a year.  Lack of breath and  motor control of her mouth parts (and nearly every one of her other parts) means speaking was a lost skill for her.  However her computer that read her eye movements allowed her to type, so her questions were spoken by the computer (itself disconcerting because the computer didn't have a New York accent and spoke rather slowly, hardly the avatar she would have chosen).  The long and short of it, Deb's only choice was to refuse nourishment and water and wait with hospice support for the calming drugs they routinely prescribe.

How many of us could do this?  And a day into it, how many would continue the vigil?  Not me.  She has morphine and adavan.  Does she do this?  Even when I tell her if she does it regularly it would build up and help her in the comfort department.  Oh, no.  My Deb only has it when she wants and not frequent enough for my taste.

She is not comatose just yet.  She's awake only 6 hours a day, but I don't think she's comfortable.  If she only said, feed me, there would be a all hands on deck to revive her.  She has an iron will to do this.  She wants this enough to go through it.  That is absolutely crystal clear to all of us.

Fucking A, this is hardest on her, but knowing this is what she wants is almost unbearable for me too.  Probably only slightly easier for her care givers.  She has gotten close to all her care givers.  Daughter close (they're mostly young).  They love her too.  So we all acquiesce and give her our love and support.

Ever the organizer and control exerter, Deb has made lists of tasks for me to accomplish during and after this tragic episode.  One was to keep this secret until the end.  I can't say I agree with the secrecy and lord knows, I couldn't possibly keep separate versions of information straight in my head.  It is more my style to have one story, stick to the truth and let that be my mistake rather than try to remember who is supposed to know what.  Thus this blog.

I talked to her former Basel boss and it was a stilted conversation.  I hit her right between the eyes with it and, even knowing this call would eventually come, I still shocked her.  I believe that me writing this blog and giving you stories and omitting the gory details will help you process this.  I'm in no state to shock people and then provide details.

I invite you to share anything you care to in comments.  I'd rather celebrate her successes and good deeds than focus on this end stage.  She's touched so many people, I can't begin to reach you all.  Please pass this URL around.  Tell us all favorite Deb stories.  Especially stuff I've never heard before.  It would be helpful for me and any who remember her.

I'll write about how I'm dealing with this in a subsequent post.  I'm not all right, but even given that I support her completely.  Its not what I want her to do.  Half a Deb is better than no Deb at all.  I told her this.  And I got off a love letter while she was lucid, although not eloquent, made her weep for hours.  She knows my undying love for her, but reading the words warmed her greatly.  This is all I can do - make her comfortable.

Logistically, when she is gone, I intend to have her cremated and make the urn myself on my lathe.  It will be a double urn so I can be added and then poor Ryan will have the job.  Sorry Ryan, let's hope it is a good long time from now.  I'll eventually tell you how religion played a part in her life so you'll understand the lack of a service.  I'll have an open house for visitors for a couple of weekends.  I'm happy to welcome all visitors and can accommodate sleep overs - we're way the hell out in the sticks and it isn't an easy trip, but any who make it will receive Deb hospitality.  She taught me well.