Simpler

I ask her for the millionth time “Are you picking?” 

She looks at her lap, sheepishly lowers her hand from her forehead and says “Yes.” 

I look at her.  Her forehead is scaly and aggrevated from the attention of her fingers.  I know I will have to stop her another thousand times over the next few days we are away.  Each time I will feel like a schoolmarmy turd and each time she will look guilty.  I wish that there were another way to make her stop. 

My mom has Alzheimer’s.  It sucks.  Sucks hard.  She has developed an almost OCD like habit of picking any and all rough patches on her 85 year old skin.  Once she picks the offending blemish to the point of bleeding she will quit on that spot, at least until it develops a scab and then she will start again.  The result is a kind of cycle picking from spot to spot, such that she is either scabby, bleeding or an unpleasant combo of both.  I try to be gentle, try to still her hand as it probes the usual places, but I can’t be with her round the clock.  The potential for infection looms always in my mind as I try to keep her from proceeding.  This once Emily Post etiquette fiend will pick anywhere anytime, including a public dinner table, disposing of the scabs to the floor.  I know that’s a stomach turner – right?  If I ask her to cease and desist at least until I’m done eating, she cannot.  Moments after agreeing, I will see her hand wander back to wherever it was removing offensive scabs when I asked her to stop.  Sigh. 

When she first started this behavior, I attributed it to all manner of things.  My mom is full of deep self-loathing as the result of feeling unloved by her mother.  She never has discovered that she is worthy of being loved.  I can still see it in her eyes - that expectation that I will leave, that I will find her unlovable.  As if that were even a remote possibility.  I saw the picking as a self-punishment for that, or as a way to make the external world match her interior dialogue – that she is ugly and unlovable.  As if she could be anything but beautiful.  That thought made me feel sad, made me more determined to demonstrate that she is both beautiful and lovable regardless of her inner dialogue or exterior damage.

 

After that I told myself that she picked because she hated what was happening to her (until recently she has had an amazing self-awareness about her disease) and that on some level she hoped to pick herself out of existence piece by piece.  She wouldn’t be “a burden to anyone that way and people could go on with their lives”.  It pained me to think this might be true, that she somehow didn't feel entitled to be here or to my time and attention.  So I lavished more attention on her. 

It didn’t help.  Nothing did.  The picking continued.

In my efforts to understand where she is and what to expect in the future, I am learning a lot about AD.  That desire to understand has brought me face to face with many of my own demons.  AD patients become simpler in their thinking.  Not more complex.  Those thoughts above?  Those are pretty complex and twisty thinking.  They are mine and not hers.  It’s my BS, my projection, my observer nature filling in imaginary details to gloss over the fact that I don’t know diddly squat.  Observer run amok.  Ouch. 

Her picking vaguely reminds me of a friend whose daughter suffered from  trichotillomania – a disorder that results in pulling out one’s own hair, generally eyelashes or brows.  Her daughter was absolutely normal in every regard, charismatic and smart, except for this one thing.  She outgrew it, which is good because she really is quite gorgeous.  It’s an anxiety disorder, which makes me wonder if the picking is some kind of anxiety disorder as well.  That there is some kind of self-soothing that happens while she is picking - like giving in to a tic or checking to see that the oven is off for the third time.  Who hasn't done that?

Maybe it’s even simpler than that.  (One thing I am learning to accept is that with AD it’s all about simpler.)  If asked, she will tell you she doesn’t like rough things.  Her entire palate and habits have changed so dramatically in the last year that I can no longer predict what she will like or no.  So maybe the picking is related to textural perception, one of the most rudimentary ways that we experience the world from our infancy onward.  We develop relationships to textures we like and those we don't.   

That I understand.   I have a friend who falls in love with handmade cups because of the way they feel in his hands, because of the texture.  I too have textural preferences.  Unlike my mom, I love fluffy, hairy, fuzzy objects.  Peaches, dogs, angora yarn is all delicious.  I don’t mind rough skin which is her bug-a-boo.  But I do mind bumps - ingrown hairs, zits, boils, whatever - and have been known to attack them with a sharp object.  Is that really so different?  Probably not.  The biggest difference is that I can imagine the possible negative outcomes from my behavior, infection, MRSA, other nasties.   She seems only to understand that it feels good and so she does it.      

The truth is I don’t know why she picks and I never will - not really.  It's all just me trying to unravel the riddle of why she behaves as she does and that particular puzzle has been ongoing since birth.  I doubt I will solve it, so it's more a gentle musing than active puzzling these days.

10.23.13

It was one of those generic elevator conversations.  This one happened as I kept pace with a young woman between the parking garage and the hopsital.  Both of us a little tired.  Both of us expressing a desire to have stayed home in bed on this cold an rainy morning.  I explained how our employer would be better served to send around a group voice mail on Wednesday encouraging people and letting them know they could do it.

Fast forward 5 hours. I've totally forgotten the aforementioned conversation.  I'm returning from lunch on the elevator.  I hear a small voice say from the crowd "You're almost there.  You can do it."  I look around.  I see her smile at me conspiratorially and I say "How perfect."

But what I'm thinking is HOLY CRAP!  She not only remembered the inconsequential conversation, but remembered enough about me to distinguish me from the other seventy-leven employees who might have gotten on the elevator.  Most amazing.  She gave me exactly the kind of encouragement I said I had wanted.

Big fucking smile.  Belief in humanity, not only restored, but soaring.  There are no actions so small as to be inconsequential.  Take time to really listen and be present.  Absolute and radiant gratitude for today's messenger.

I CAN do it.

Economic Meme

There is a meme being passed around about an econ professor and his college class re:Obamacare (see below).

After reading this I was kinda pissed off.  It isn't a good analogy for what the writer intended and I'm sure, at its roots, is just some pro-Republican BS.  Part of me thought 'how stupid are these people?'  They could clearly see that it was not going to work if they all maintained the status quo.  Did no one think to help each other out?  To form study groups so that everyone could at least pass?  Perhaps that's the thing that bothers me about the meme most.  That there was zero problem solving.  There was just dogged persistence along a path of destruction.  A path where no one wins.

I wondered if the outcome were tied to the age of the alleged participants - younger people sometimes having a different skill set than older ones.  Would older people with more life skills behave the same way?  (Hey, if you hang out with a scientist you gotta be prepared for questions like this).  So I started to think about other scenarios like this.  Enter : the government shutdown.

It seemed very similar.  Neither side wanting to let the other have a clear 'win'.  All of us paying the price.  In light of that fiasco that lack of problem solving seems even more key.  I saw zero problem solving on this front either.  Zero working together.  Zero Fucks ^TM given about dragging the entire country down.

There I was up on my high horse and finger pointing from Olympus about the faults of others.  That's when I got blindsided. That's usually when it happens, right as I hit my preaching stride.  That little voice whispered read #5 again.  Which I did.  Groan.  That one hits closer to home as it directly applies to my work situation.  A situation where I am doing most of the work and someone else is receiving most of the benefit.  I have been watching myself slide toward the edge while balancing a sizable I-don't-give-a-fuck-chip on my shoulder.  I am doing EXACTLY what those college students did, exactly what Congress did.  I am staging a work slowdown.  Not consciously, but I am still doing it.  Failing to see that the long term effect of my action is bad for the lab and bad for me.

I don't want the lab to shut down.  I don't really want to be the one carrying it either.  I don't want to be the tool that someone uses to further their career.  I don't want to be just a cog in the machine of churning out terrible science that I am embarrassed to have my name on.

Maybe the lab will shut down.  But I want to walk away with my head held high knowing that I did my best and making it clear that failure should be laid at someone else's feet.

Some days I really hate that little voice.

An economics professor at a local college made a statement that he had never failed a single student before, but had recently failed an entire class. That class had insisted that Obama's socialism worked and that no one would be poor and no one would be rich, a great equalizer.

The professor then said, "OK, we will have an experiment in this class on Obama's plan".. All grades will be averaged and everyone will receive the same grade so no one will fail and no one will receive an A.... (substituting grades for dollars - something closer to home and more readily understood by all).

After the first test, the grades were averaged and everyone got a B. The students who studied hard were upset and the students who studied little were happy. As the second test rolled around, the students who studied little had studied even less and the ones who studied hard decided they wanted a free ride too so they studied little.

The second test average was a D! No one was happy.
When the 3rd test rolled around, the average was an F.

As the tests proceeded, the scores never increased as bickering, blame and name-calling all resulted in hard feelings and no one would study for the benefit of anyone else.

To their great surprise, ALL FAILED and the professor told them that socialism would also ultimately fail because when the reward is great, the effort to succeed is great, but when government takes all the reward away, no one will try or want to succeed. Could not be any simpler than that. (Please pass this on) These are possibly the 5 best sentences you'll ever read and all applicable to this experiment:

1. You cannot legislate the poor into prosperity by legislating the wealthy out of prosperity.

2. What one person receives without working for, another person must work for without receiving.

3. The government cannot give to anybody anything that the government does not first take from somebody else.

4. You cannot multiply wealth by dividing it!

5. When half of the people get the idea that they do not have to work because the other half is going to take care of them, and when the other half gets the idea that it does no good to work because somebody else is going to get what they work for, that is the beginning of the end of any nation.

Zero Fucks ^TM - my friend Fabeku who is a stellar wordsmith.

Small Stone 10.17.13

One palm in shadow

one in silvered moonlight

fingers clasped

I integrate both

Aya

A couple weeks ago while my mom and I were out driving about (Yes, I know it's bad for the environment, but it's better for her and right now that's what matters) when we passed by two huge ferns resting on the curb.  I noticed that there were two small scraps of paper attached to them and their position suggested they were giveaways.  I circled back and sure enough, they were free to a good home.  

They looked much smaller sitting on the curb than they did in my car or in either my house or my mom's.  I'm sure these graced the sweeping victorian porch of the house where I found them and that the owners did not have room inside for two such gigantic plants to winter over.  I was ecstatic to have been gifted these by someone who no longer wanted them.  

Mom found a home for one.  I took the other, larger one back to my apartment.  Recently, I have been adding to my plant collection and this beauty has a place of honor.  She is regal on her stand soaking in the sunlight.  I try to remember to water her and love up on her as often as I can.

In the morning, while I'm waking and slowly sipping coffee, I examine her closely.  I fall in love with every little unfurling fiddlehead I see.  Truly, deeply loving this gift that came my way.  Grateful to someone anonymous who let her go so that I could share space with her.  Please know I cast gratitude every time I pass your home.

This morning as I look at her adoringly, I am reminded of an Adinkira symbol/word and I scoot over to the computer to remind my aging brain what it represents other than fern.....which is the obvious and less interesting thing.  

This feels right for where I am now.  Struggling to keep my head aloft and my feet under me.  No respite.  Stuck in the mother of all log jams.  Scrambling.  It is good for me to be reminded that endurance and resourcefulness are what I need to thrive, even here.  

I have weathered worse.  I will survive this too.  I am Aya

   

AYA "fern" symbol of endurance and resourcefulness The fern is a hardy plant that can grow in difficult places. "An individual who wears this symbol suggests that he has endured many adversities and outlasted much difficulty."

Cup a Joe.

This morning while I stood in line to make my coffee, I got hung up by a couple of faculty members standing in front of the coffee and just talking shop.  They were done getting coffee and were blocking the entire coffee station from use.  (This is a VERY DANGEROUS practice and I do not recommend that you try it.  People have died from blocking access to the caffeine here in the research building).  I tried not to be annoyed by their lack of awareness, but my default these days is annoyed or just below it.  I stood and waited and waited and waited.

Then I waited behind them to pay.

And that's when the spark of magic showed up.  The young Indian (India Indian to clarify - as if it makes a difference) man insisted in paying for the gorgeous French supermodel/researcher (Yes, I'm sure she is both).  The gorgeous woman got flustered and actually blushed.  NB here - there was not one iota of smarmy, sexual, i-want-in-your-superskinny-sexy-pants in play.  It was a genuine offer made out of camaraderie.

When I ran into the woman five minutes later and said hello, she was STILL noticeably flustered by this small gesture.  She sheepishly admitted that no one had ever bought coffee for her before and seemed embarrassed by all of it.

And I caught myself slack jawed at the thought that no one had ever sprung for coffee for this gorgeous and smart as hell woman before.  Really?  Did I mention she's French?  Um yeah.  Like French Vogue French.    I found her blushes and flustration (yes, that's a word) genuine, so I didn't doubt she spoke the truth.

All of it made me smile and forget how annoyed I had been at two people I didn't care to wait behind.  If I hadn't waited, I would have missed this exchange and the spark would have died right there.

What spark you ask?

The spark that landed on my tinder and caught fire.
The spark that burned up my tedious impatience.
The spark that consumed the hard knot of judgment I carry re: beautiful women and how their lives are inherently easier than mine (Yikes - scary to admit that) just because they're gorgeous.
The spark that encourages me to do small gestures for people who don't expect it.
The spark that made me smile to be so wrong on so many fronts.

Cup a joe anyone?

The Work of Writing

My friends, family, co-workers all know that I am writing a book.  Actually it's two.  Ping-ponging between them trying to keep both stories spinning.  A good general knows you can't win a war fought on two fronts, and yet I try.

Pushed sometimes by the threat that the Alzheimer's demon is just marking time with me, that he has tattooed his mark on me, called his dibs and soon I will fall to him.  Just as she is falling.  And so I write.  The idea of living with stories locked inside me that I can no longer tell and infuriating one.

My friends cannot understand why the book isn't done.  Haven't you been working on it forever?  I don't know why they care.  But yes, I have been working on it for years and will continue to work on it.  Their idea that I am transcriptionist to the muse, that the words are dictated and I type and type and type.  I won't lie.  Sometimes it's very much like this.  Or like closed captioning a fine movie.  Chided to move faster and faster.  Counter chiding to go slower.  Afraid to say that too emphatically or often for fear that the movie reel will sputter stop and the muse move on.

Mostly it's like wrestling a bear.  I'm pretty sure I will lose if I keep going and be bloodied in the process.  Or I can just lie down and let it be quick over.

But then she is there, knocking on the inside of my eyelids of a Sunday.  Demanding open.  Demanding pens and paper.  Mostly I concede.  I am not one for giving up.