Deb's second family

I'm sure the people who knew her as Debbie from the old days remember her relationship with Nick.  He was one of her former beaus.  If I have the story right, she joined his family.  At home, she had a certain rebel role and at Nick's, she was just another member of the family.

At home she attracted her father's ire, her mother warned her about upsetting him too much.  Her brother Peter said it was her fault (a shared joke) but I think the situation was wearing on her.  It's complicated and I don't know if either of us ever figured it all out.

But at Nick's house the food was good, the company was good and she never got in trouble there and they loved her unconditionally.  She learned enough Greek to get by and went to Greece with them.  She always wanted to take me there sometime, but pre-India it sounded HOT.  Now, I regret making a fuss since I adapted to India heat, Greece should have been a breeze.  She has always, always looked fondly at that part of her life.  And she never let go of them.

I found Nick's sister's email and told her last night.  Now we have readers in Greece.

One last Greek story.  I took Deb to Duluth in January in 1984 or 85.  We spent time with my family, but I also drove up the shore of Lake Superior.  She was properly outfitted in a down coat, down mitts, long underwear and good boots (not those thin, stylish things she usually bought).  North of Two Harbors we pulled into a log cabin diner for lunch.  Somehow Deb knew she was in an establishment run by a Greek family and she dropped a few words in Greek and all of a sudden, we were getting truly royal treatment.  Here we sit in the middle of nowhere and she's already made new friends.  And by nowhere, I mean communities of a few hundred people surrounded by state and national forests of 10s or 100s of thousands of acres.  And the Lake Superior, of course.

This day also happened to be a dog sled race day.  We got to walk around and see the dogs that were training for the Iditarod by running this race.  She first made pals with a trailer full of sled dogs and then started talking with the woman who was going to be sledding.  No surprise, right?

Open House

Yesterday was very good.  I wish we lived closer to most of you.  One poor soul started but got caught in snow.

It went by in a flash.  I thought my memory was impeccable, but try as I might, I can't recall many of the conversations I had.  It snowed and I plowed and sanded twice.  Once in jeans and once all dolled up.  To explain the procedure would have taken twice as long than to simply do it.  Not that I didn't have capable helpers, but I don't know the names for all the levers and didn't know how to tell them how to let the sand at the right rate.  I just know what the levers do, not what they are called, I'm left/right challenged - I'm 90% wrong when telling someone which hand to use.  

Today Jenny, Ryan and I had breakfast in town, went to a movie house in Scranton and tried to have lunch out, but we had our sights on Thai food and our choice of restaurant was closed.  I think we were tapped out.  We picked up some a few grocery things (not that I won't be eating all the food everybody brought, but milk and Cheerios were needed) and we went home.  

We split up for some quiet time and tonight we'll watch a movie or something.  They go back tomorrow.

Seeing people did me good.  Deb's relatives, our neighbors and town folk and an 2 old friends I haven't seen since they visited my at hospital in NY 11 years ago (surgery was 100% successful).  Deb got an earful on the way home, as I was looking pretty ragged and still dopey and in no way wanted visitors.  It rolled off her back like water off a duck knowing that it probably did me good.

One last thing:  The candle Aunt DeeDee lit yesterday is still burning.  I hope I wasn't supposed to break it with my foot and shout Mazel tov 💘like we did at the wedding.

Dress Code

In case anybody was contemplating their wardrobe for tomorrow's open house, casual dress is the theme.  

Dr Mitzi

I met Mitzi the first week of September in 1975.  Mitzi was just 7 then and already a freshman in college.  No, not really, I'm protecting her age.  She lived across the hall in our dorm.

We talked Wednesday and it got medical.  I said what I thought had happened and Mitzi told me something I'd never heard from anybody.  Maybe Deb knew this but the conversation never came up.

Mitzi, a pediatrician, said she sees diabetes in children and can (frequently?  somethimes?  always?) link its onset to a prior viral infection.  If I understood her correctly, some prior exposure or genetic predisposition or some other damn reason has a disease (like ALS) laying dormant until some viral infection triggers it.  Then POW, right between the eyes, the dormant condition undormants itself and you get sick.

That could mean Deb's lyme exposure triggered the ALS, it may not have been the symptom of lyme.  I had been telling Dr Mitzi that this was how Deb's brand lyme disease expressed itself.  It could have been arthritis or lupus or a bunch of other symptomatic collections difficult to label, but Deb drew the queen of spades.  I should have known better than to explain something medical to her.  Then again, this alternate explanation rings true to me.

I hope there are some smart researchers out there looking at this.  ALS really, really sucks.

I started the woods on fire

Deb and I were working in PA more than NJ towards the end of 2011.  We'd come down to NJ once a week for a few days of meetings and then return to PA and maybe slip in an MD appointment.  My boss was in California and I had colleagues in Europe as well.  Deb had similar contacts.  Business contacts, people you did work for and others that did work for you.  A stranger reading my early use of contacts might think nefarious things about us.

At night Deb would search the internet for any pertinent Lyme or ALS information and armed herself to the teeth.  An early posting from a few years ago mentions a book of a Lyme patient in Deb's condition being treated with stem cells in India.  The after picture on the book jacket showed her riding a bike.

The first item on the list of things to do to get to India was to sell the house.  To do that it had to be emptied, painted, blah, blah, blah.  There are too many people to thank individually, but you all made it happen on schedule and under budget.  I'll be forever grateful for the help.  The last things to come from the basement were particle board walnut paper covered book cases from our pauper days.  They were our pantry space.  The only thing keeping them up, once emptied was the wall behind them.  The particle board crumbled in the basement air.

We have a week to go to India.  I was getting the place ready for an extended absence.  I decided to burn the crumbly book cases.  The wind was still, things were dry, I had a 30 foot circle of dirt and weeds on which to burn.  Almost everybody had a burning spot.

Man oh man that wood burned fast and hot.  I had to walk around and stamp out the weeds and low grass that was catching just from the heat radiating.  I was loosing so I got my hose and tried to squirt it out.  Before I knew it, I was standing in a circle of fire and my hose was burning.

I have a phone in the workshop (which never suffered any harm) and I wanted 911 to get my caller id.  But...

Deb was on a conference call.  The Dali Lama or someone talking positively about everything.  I politely interrupted and asked if they could hang up.  The voice kept coming like they were used to hecklers.  After a few more polite tries, I resorted to  "could you stop talking for a f---ing second????".  Turns out Deb was listening on mute and it must mute the extensions too.  Someone must have heard me screaming at them from the barn all the way into the house.  Deb hung up, I called and in 3 minutes our neighbor came running over because he's a volunteer and got the call.

The Thompson Hose company said they were waiting for my call.  They knew some dope was going to start a fire that day.  When I tell you there was a lot of fire, there was a lot of fire.  I have an old standing dead oak that was trying very hard to catch fire all the way to the top.  They had quads with fire-putter-outer (foam or water, who knows) fluid and a pumper and a pickup and students with vests of foam walking in and simply went to work.  Put it out and didn't stay long enough for a proper thank you - soda, beer or a snort*** (see clarification below).  I tried.  What did it cost?  Nothing.  I believe Deb gave every year, especially after I set the woods on fire.

These guys are all volunteer and depend on donations and grants and taxes and the like.  A couple people have asked me, should they want to donate money, where should it go?

I have to tell you, of any of the ALS organizations she contacted, I don't ever remember walking out feeling we'd finally found an ally.

Now you get why I mentioned the fire department.  Here's their site: http://www.thompsonhoseco.com/

It's sort of is a shameless plug for them, but given my job for last few years, I haven't had the ability to commit to any kind of volunteer work.  Even if they did have use for a 60 year old desk jockey, I couldn't tell Deb I'd be doing this kind of work, it was a fight I couldn't win.  So, I'm just thinking she would think that a nice gesture to help a community she grew to love.


*** Snort (verb) - to drink liquor from a shot glass, hip flask or pint bottle.  Probably derived from the noise one makes the first time they are take one.

Bagels are ordered

My bagel runner has been located.  Bagels at 11 on Saturday.  Very nice bagels.  Deb went there all the time.  I believe they knew her by voice and in person.  I bet I could have gotten a deal if I said it was for her, without offering any further details.  Damn, I should have thought of that earlier.

Mother Deb, she ensured her team knew she was thinking of them.

Appropriate song

Deb met me and we worked together for a half a year before we became an item.

I told her I liked the Grateful Dead (a long running rock musical group) and she put a big red danger check by my name in her head.  Deadheads are druggies by reputation and Gerry died due to drugs and not taking caring for himself.  She had enough drama in her life with a brother with MS and a family where she was either the trouble making rebel or the dutiful daughter.  She didn't need another problem person in her life.  I was on the "probably not" list until she realized it was about the music for me and not the scene.

Little by little she learned more about the Dead and found that the music was less about the lifestyle and more about trying to make good, complicated music.  To get her hooked, I introduced her to this tune:  Rubin and Cherise (click here https://youtu.be/1YZEEQdpPzg to hear it) and it is really a pretty ballad.

I always felt that she was Rubin.  She had so many friends and frequently ended a conversation with "I Love You".  Men and women.  That was for me a husband/wife/child/relative phrase.  Not every Tom, Dick and Mary she met phrase.

Take Jav for instance.  They were like siblings.  I always wondered if I would be enough for her.  I brought no horde of my friends to the table.  I have a close group who I tend talk to every 10 years or so and haven't seen for longer than a friend would let lapse.  She warmed to every friend I had and I believe they were happy that I found such a good mate.

Back to the dead, ff you follow the song, me being Cherise and her Rubin, she always came back and I was the one she exited with hand in hand.  Me.  She picked me.  Of all the fiends she had, she picked me.  And only me.  Over the years I came to see that it was for real.  She simply had so much to give and thrived on human interactions.  She had to have all these people she loved around her.  It fueled her.  But she always went home with me and then I got all that attention and any insecurity I had melted (years ago, I'm not that dumb bag of hammers any more).  I learned to let her be her and just not worry about all these other men and women in her life.  If I just took it easy, they became my friends, after all, Deb would never pick a dud so they assumed any husband of Deb's would be worthy of being their friend.  Deb made friends in minutes, it takes me a good deal longer.  Perhaps for them to figure me out, perhaps because I'm naturally reticent.  It is so sad that dynamic, the one who pulled me into uncomfortable situations is now gone.

Even up here in the hinterland, she found people to love.  She lived to host parties. She loved to prepare for them.  She loved to make sure each and every person felt welcome and fed.  Yes, food was important and having twice as much as necessary was part of her welcome strategy.  Those parties had the added benefit of getting the house picked up.  Parties left our house in better shape afterwards.  Preparty preparations always involved finding piles of stuff that had grown roots, to be moved to their proper locations.  9 times out of 10, she had an ad hoc crew of guests helping before and cleaning just before the end of the party.  I can't remember a time we came down the next morning to flotsam and detritus from the prior night's fun.  Of course even the cleaning had a social aspect that made packing food, doing dishes if not fun, completely social.  Put 4 or 5 of them in the kitchen, especially her NY/NJ pals, and before they exhausted their stock of words, the food part of the party was spic and span.

If you were part of that, then you know.  If not, you missed out.

Saturday Open House

I've gotten so many emails that offer help.

I wonder if there are any NJ or NYC people coming?  If yes, then send me an email.  I'm looking for someone to make a bagel run.  I used to see the lenders bagels come into the house so after I dropped Deb at the doctors, I'd make a quick run to a bagel store, if I could find one in the time she had an appointment.

There is no bagel like the ones I used to get from Hot Bagels Abroad or any number of other similar establishments.  Let me know if you 1) can bring up a couple of bags, 2) give me the phone number so I can order a bag or two of our favorites.

I think there can be no more appropriate table spread than one that includes bagels.

Thanks in advance,
RC

PS, At a new years day party once, Deb put a 2 inch schmear on her bagel taking the last of the cream cheese.  I poked her and told her to leave some for the rest of us.  Without 2 inches, it isn't a bagel, don't worry, Cathy will have more, she says.  Sure enough, 2 minutes later Cathy Clark came in with another 12" brick and put it out.  I was still wet behind the ears.  I never did learn all the ins and outs of NY etiquette.

Try this experiment in NYC:  At the deli counter, tell them you want a buttered bagel.  You get a hot bagel with a 2" slab of butter melting on your hand.  I was a butter boy in a cream cheese land.

Baby Shower

I was in on the preparations for Deb's baby shower.  Kathy was her commuting buddy.  20 minutes to Hoboken on the NJ Transit train and another 20 or so on the Path train.  5 days a week, 40 or 50 weeks a year for around 5 years.  She had a special bond with Kathy.  So Kathy, who lived in a house built for parties, hosted and did all the heavy lifting.

Back the clock up to Deb's first month of pregnancy.  We (yes, that was the Royal We) decided to move our office to the attic to accommodate the crib, etc.  So every weekend was spent preparing the attic.

The day of the shower, I told her I was tired and wanted a day off.  A DAY OFF???  We don't have time on the schedule for that, get going, blah, blah, blah.  There is no time for dawdling.  It was dirty up there so we generally skipped a morning shower, put on dirty clothes and cleaned up in the evening.

Deb is in sweats.  Ladies, I learned that going out with out proper support high and low is not something that is done lightly, except with your closest friends.  Baggy sweats let certain parts giggle below the belt and a wearing ONLY a loose sweatshirt only accentuates (for me) a certain other pair of assets.

Knowing she had her shower to attend meant I needed her to be showered, dressed for going out, quaffed maybe even some lipstick.  She was having none of that.  Attic, attic, attic.

When the call came in, I gave her the phone, Kathy asked her to stop by.  Deb climbed down the stairs and ran 2 doors down to find out what Kathy wanted.  2 minutes later she was back, to make herself presentable.  I didn't have to mention that she should have listened to me.

Deb loved a party.  To walk in the charwoman, see all her friends and then make a quick exit I don't think bothered her - in fact being the butt of a good natured joke, like being totally surprised was part of her good nature.  I believe she was then very excited to get ready and get over there as quickly as possible.

Quick Memory

As my dad mentioned, I visited last weekend - very grateful that I got to say goodbye. I think Mom was lucid for at least a few moments when I was with her. What I'd like to do here is share a short story from when she was better. It's one of my last really nice memories with her. I don't remember a ton of it, and didn't really think it was significant at the time, but I suppose that's how these things go.

My mother had started experiencing symptoms that required trips into Manhattan to visit doctors (neurologists, maybe?). I think it was spring break (the weather was nice) and I was home from college and I drove her into the city to see the doctor. Because my general priorities at that time were optimized for lounging around the house all day instead being useful (see also: taking out the trash, doing the dishes), I remember being annoyed. I figured it was just some passing symptom and she was overreacting, and rolled my eyes at the whole ordeal.

The doctor took forever and I watched a movie on my imitation ipod touch (Wedding Crashers, I'm pretty sure). When she got out we just kinda wandered around for a while. She explained in more detail what she was going through and I started to take it more seriously. We grabbed lunch at an Indian restaurant (sidebar: I will forever be grateful that my parents fed me plenty of diverse foods growing up) and then walked over to a playground and sat down for a bit -- she was a little tired. In my memory there were nannies and parents playing with their kids on swing sets, but I'm pretty sure that's just a scene from a movie that wiggled its way into my brain and is pretending to be a memory now. We talked for a while more and then headed home. There's not much of an ending to the story, which is maybe part of the point, but it was one of the last times we really had a conversation together. It was a simple, lovely afternoon.

[ fyi: my timing might be a little off -- maybe dad can correct it if he remembers the trip :) ]

Arrangements

I have been helped these last few hours.  Mary Beth gathered the pertinent info for an obit.  The mortician has come and gone.  People are calling but I'm in all likelihood going to let it go to voice mail.  

I'm planning an open house where I'll do the equivalent of sitting Shiva.  My intent is to talk to anybody who stops by.  It'll be on January 28 and don't come before 10 and by 6 I should be totally drained.  I hate to post directions on the internet, so if you need them, email me at debs@guitarcarver.com - I made a separate mailbox so I could respond more easily.  

I don't expect everybody to drop it all and run up here.  I'll be happy to host you later or even to meet you half way or if it's Jersey, I could be talked into visiting the old neighborhoods.  I'll probably need excuses to get away on day trips.  

Anybody who needs lodging, I can find a bed.  We've got plenty.

This is a whirlwind for me so forgive me in advance for leaving anybody out.  Tell anybody who'd be interested.  

She's gone

Peacefully.   The reality of it is so much worse than the theoretical it's been. 

Deb's a good sport and I can prove it

In preparing for our wedding (in 1985) I had but one thing to do.  Reserve a hotel the night of the wedding so leave for the honey moon from in the morning.

I had an fool proof plan.  We'd get dropped at the hotel across from La Guardia air port, in the morning I'd go across the street and rent a car and off we'd go to the Modanock Mountains in New Hampshire.

A week before I walked in to the Pan American Hotel and asked to make a reservation.  The lobby had marble tiles, a water fountain and it was decorated kind of Mediterranean.   I asked for a room and he said, "Are you sure?"  and I said "Well, yes..."  he made the reservation and I let him run my credit card.

The whole day whizzed by me so fast I was amazed.  I met people I'd never seen before and had to make associations from the neighborhood, from the music industry (her father's work) from the majong players and family and so on.  The wedding was a blur.  Which came into focus at the hotel afterwards.  And for those leering, get your mind out of the gutter.

My friends drove us and helped with the bags.  No bell hops at this hour and as you'll soon see, at all.

We got our key and opened the door to the hall and stopped dead.  Every door on the 1000 foot hallway had a pad lock on it.  I had checked us into a welfare hotel.  It's where the city put up people who had nowhere to go and a situation requiring some aide.

Deb was mortified, to say the least.  My friends didn't know what to say.  It was very, very awkward.

And we had an envelope full of cash and checks.

In New York, if I might generalize, cash is a very normal gift.  Deb used to say we had to "cover our plate" when we went to a wedding.  We were spending the night in a hotel who's occupants felt it necessary to padlock their doors when they left.

We spent the night and did fine.  What can you do about it at 1am, dead dog tired and about to loose your transportation and our own apartment was full of travelers?  We lent our car to my parents.  Our friends were going to Manhattan to visit the city that never sleeps.  Or maybe that was her cousins.  Like a said, it was mostly a blur for me.

How many women do you know who spent their wedding night in a welfare hotel and wasn't permanently mad at her husband?  Or at least found opportunities to give him the business?  Well, this was another episode that took her a while to fully own.  Although she probably told it more like David Letterman's stupid human tricks episodes.

I've got to say, good sport doesn't do her justice.

Still Resting

She's a junkie now.  So much morphine, hourly now, that about all I can say is she's resting comfortably.  She was lucid and happy that Ryan had visited.

Ryan was not so happy.  It was hard for him.  Fortunately he has Jenny who is looking out for him and giving him A-1 care.  Go Jenny!

As a sidenote, you all don't need to post stories as comments.  There's a post button up top that gives you a spot to write in.

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.