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 :) ]