Seven years of asymmetry

So, I was inspired by this post by my talented friend and colleague, Laura (@GoogleGuacamole). It is about using selfies and avatars as a form of reflection. I’m not particularly big on selfies for a variety of reasons and deciding to do this was difficult. As I reflect on the last seven years (Monday the 13th was the seventh anniversary since 32 hours of brain surgery), I am aware of how much has changed, and how much my well-being has improved.

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June 19, 2009

The first photo is from 2009.  Before surgery, before I realized I was going deaf on the left side. Before the grandelves and their mother and partner moved in for the second time and I still had studio space.

The next picture is February 2010, two days before surgery began. Zach and I shaved our heads together in solidarity. I didn’t actually need to shave my head because they didn’t need much real estate to work with to cut into my head. It was a really more of a statement that “I am ready for this.” I remember watching “True Grit” (the original) the night before, taking inspiration from it. Particularly the lines, “I call that bold talk for a one-eyed fat man!” “Fill your hand, you son of a bitch!” That segment of Rooster charging across a meadow ringed  with aspens was on a near-continuous loop when the US Marshall History Exhibit was on display in the museum at the Jefferson National Expansion Memorial (Gateway Arch) the summer I worked there.

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February 10, 2010

 

 

This next photo is four weeks post-surgery.  The entire left-side of my face was paralyzed, including the left vocal cord. Some muscle tone has returned to the left side of my face. At rest, I no longer looked like a victim of a severe stroke. When I tried to speak, it was a whole other matter. You can see the droop on the left side, that I tried hide with the mustache. My left eye was not working well either, I had bad double vision and working at the computer was only possible for short periods until an OT put tape over part of the left lens of my glasses to begin retraining my eye until the opthamologist started using an adhesive prism. It was five days later that I created, and felt, the first twitch in my cheek.It was at this point that I often scared small children when walking in the neighborhood with my taped-up sunglasses, cane, and an uncontrollable drool.

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March 12, 2010

Now, it’s almost year post-surgery in the next photograph. I am just about to go in to schedule a fourth procedure on my left vocal fold, something a little bit more permanent when I begin to realize that my voice is returning. I look pretty normal (for me) here, but the asymmetry is clear, just not as pronounced.

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February 2, 2011

The photo below was taken for the article in Bloomberg Businessweek about our first release of the reports on the post-completion wages of graduates. It’s notable because out of the dozens of photos taken, it naturally focuses on the right side of my face. The normal side.

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December 2012

Next, a short from a fall day in Georgetown in 2013. The asymmetry is there, but usually unnoticed by most, save for the way the facial hair grows. Or if someone watches me eat as the left eye closes uncontrollably. Also, there were tough periods of hemifacial spasms across the left cheek in 2012 and 2013. They are still around, just not as painful, unless someone or something makes me laugh a lot. Sometimes smiling does in fact make my face ache.

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October 16, 2013

And finally, skipping ahead, because if I am bored of looking at pictures of me, I’m assuming anyone else reading this is also bored. Weight loss and the continued spasms and nerve issues have created pronounced asymmetry in the lines of my face. If I were to shave, you would see that I now have a dimple that I never had before.

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January 2017

 

Fortunately, I am old enough that looks don’t matter as much. I see this lack of symmetry in my face when I look in the mirror, and what I see is survival. Although, “survival” might be too strong a word. “Onward-ness” seems closer. I see the asymmetry and I know it is me. I know that I did not stop moving forward. The things that continue to be a problem will always be a problem (swallowing, a never-ending  cough, the need to finger sweep my cheek, no tears on the left side), but these are tiny problems in the scale of things. Moving onward is good. It is what I am all about.

 

 

 

 

 

 

 

 

 

 

 

 

Mixed Metaphors: Of Cowboys and Kings; and Tigers

TIGER, tiger, burning bright
In the forests of the night,
What immortal hand or eye
Could frame thy fearful symmetry?

In what distant deeps or skies 5
Burnt the fire of thine eyes?
On what wings dare he aspire?
What the hand dare seize the fire?

William Blake, “The Tiger”

A long damn time ago, there was a conversation between a girl and me. I can recall it like it  was just the other night. she was gloating that she had finally “caught” me. (Yes, there have been times I was hard to get.)

“I’ve got you, you’re mine!”

“Really? So, what’s your plan?”

“Plan? I don’t need a plan.”

“Are you sure about that? I know that if *I* were trying to catch a tiger, I’d have pretty darn good idea about what I was going to do with it. Would I let it go? Try to tame it? Or just kill it? Tigers are are unpredictable and dangerous. We don’t make good pets.”

“I’m going grab on to your ears, hold on,  and ride you for dear life.”

“Good luck with that. Please note that I didn’t compare you to a dog chasing a car….”

This conversation has been on mind lately. I have been chasing a specific tiger since 2002 and it looks like I am about to catch it. I am now questioning if I am going to be able to wrestle it into submission and tame it. It won’t be easy. I hope to hell I haven’t made a mistake.

Isn’t that the way it goes sometimes? You want something badly, work to get it, and when it comes to you…you become afraid that it is not quite what you dreamt. There is more work, more complexity, more of something needed.  In other words, you get what you want and so what comes next?

I got a small query for yooouu
What comes next?
You’ve been freed
Do you know how hard it is to lead?
You’re on your own
Awesome…wow
Do you have a clue what happens now?
Oceans rise
Empires fall
It’s much harder when it’s all your call

Lin-Manuel Miranda, “What Comes Next” from Hamilton.

So, you buckle up, and you go for it. Grab the tiger’s ears and hold on for dear life and ride him till he tires.

I’m not positive, but I *think* we are all watching someone in DC who caught a tiger, grabbed on, and then realized “What the fuck! This is not what I want.” Yep. Tigers are beautiful, powerful, and indolently dangerous. A careless swipe of the paw can drive a person to their knees, or worse. That same paw would certainly pulverize a semi-sentient Cheetoh.

I think the Cheetoh might know this.

Reminds me of another song. Sometimes, you just stumble upon someone or something that seems kind of cool. Intriguing and exciting, perhaps that takes your breath away. However, remember to breathe. Catch your breath. Think about the implications of what comes next. It’s not all skittles and beer.

‘Cause what’cha gonna do with a cowboy
When that old rooster crows at dawn
When he’s lyin’ there instead of getttin’ out of bed
And puttin’ on his boots and gettin’ gone
What you gonna do when he says honey
I’ve got half a mind to stay
What’cha gonna do with a cowboy
When he don’t saddle up and ride away

Chris LeDoux, “Whatcha Gonna Do with a Cowboy”

Of course, that’s my advice to others. I’m just going to go all in. “Damn the torpedoes, full speed ahead!” A life lived in fear is a life half-lived.

Birds

I call my parents twice a week, generally the same nights around the same time. On the last conversation, Dad brought up this story:

“I remember a little boy, about five or six, who was at the mall with his parents and younger sister. He said he was ‘going to look at the birds’ and we couldn’t find him for awhile. Eventually we figured out what he meant.”

I remember this well. What I don’t remember is where the youngest sister was. And she would have two or three at most. I think she might have been younger and that I was closer to four years old. What I do remember clearly, is that there was some kind of art show in the open spaces between shops. Paintings, drawings, and carvings, on peg boards. There was a section of carvings of birds. Right outside the store we were in.

That was not where I went. Those were not the birds I wanted to see.

I went to the pet shop to see the live birds.

I have not forgotten the look on my mother’s face as she was talking to a security guard or police officer as I walked up to her. So I learned to be a little more clear about where I am going when I go.

***

Our home in Chickasha was across an alley from the college where Dad professed. A former women’s college gone co-ed. In a small town, not far from the middle of nowhere, it was quite a place to be a child. Especially since one might possibly encounter both cowboys and Indians on a given day. Cleavon Little was born there a year or so before I was, but it took me 50 years to learn that. I know why it took so long, and it pisses me off.

I was a wandering child. No big surprise to any that have noticed how much I wander, r drive instead of fly. Walking and looking are just about my favorite things and they started early. As large as our backyard was, and I remember it seeming quite large, it was not big enough to contain me. The back gate in the cyclone fence was always inviting me to open it. And I did.

That corner of campus nearest the house was the emptiest, notable for the new alumni chapel, whose construction I watched when I could. The dorms and most of the academic buildings and student union were at the other end of campus. So, I always felt comfortable in this park-like space. One of the buildings, I don’t remember which, was attractive because of the flowerbeds in front that attracted ruby-throated hummingbirds. I was mesmerized by those lovely little birds. But I was also looking for scissor-tailed flycatchers and Mississippi kites. Just as I did when I was allowed to accompany my grandmother when she played golf at the country club.

One on of these days wandering around campus. I encountered an adult.She probably asked what I was doing and I proceeded to tell her with all the earnestness of a five-year-old. I made an impression that mattered. She was a biology professor, who happened teach ornithology and lead bird-watching expeditions. She contacted Dad, and then invited me to join the next field trip.

I don’t recall a lot of details about that trip. There was no parent with me to reinforce the memories through story-telling. I have flashes of memory of being somewhere in the wilds of Oklahoma, looking across a ravine through a telescope, a couple of young women making a fuss over me (I was realllly cute), and other images. It was quite a big deal for me at that age.

***

Around the same time, maybe the same summer, there was a big thunderstorm. My friend and I and were playing in the stream on campus, trying to build a dam near the remains of an Osage Orange tree that lightning had shattered in the storm. I remember scooping water out of the area we were trying to lay mud. I threw the water from the bucket and watched it hit the ground. There was unanticipated movement in the ground. A bird. A chimney swift with a broken wing was struggling against the drenching.

I scooped him up and ran home with it. Asked mom if I could keep it. We found a box. Put it in there with a little alabaster white ashtray filled with water. Mom gently pushed his head to the water and he drank. After, he looked up at us.

I have never forgotten those shiny black eyes, sooty-grey feathers, and a look easily believed to be gratitude.

It was dead the next morning though, and we had a little funeral. I always knew though that I tried to do the right thing, to give him or her a chance. But sometimes a chance is not enough.

 

 

 

Long May You Run


We’ve DCP_5926.JPGbeen through

some things together
With trunks of memories
still to comeDSCN0320.JPG
We found things to do
in stormy weather
Long may you run. 

-Neil Young, “Long May You Run”IMG_erl34z.jpg

Ahh Lucy, I am going to miss you. You were meant to be Zach’s dog, and you were. But I was the “responsible adult” who adopted you from the shelter in September, 2004. You may have been Zach’s dog, but you knew who the big dog in the house was – me. Every time I came near, you rolled over to expose your belly to me. But to Zach, you were ornery. The first couple of years you chewed up so much of his stuff, and only his stuff, he called you “Lucifer.”

We walked a lot of miles, you and me. How many times did we walk the 1.8 or 2.0 mile loop in the neighborhood at night? How many more miles did we walk the trails in Pocohontas State Park?  I will always remember that Sunday night we were finishing the four mile loop around dusk. Something spooked you.You kept trying to turn back…but back would only bring us to the same spot miles later in complete darkness. I had no choice but to pick your 70lbs up, hold you against my chest, and carry you the last half mile.

You were never so glad to be put back down on the ground than that time.

You had a food issues. Like the time you jumped and took pork chop out of Melinda’s hands as she was about to put in the pan. No food on the counter was safe from you. And this only got worse when Monty joined the family. His greater size and willing mischievousness made you a dangerous pair. That time I came home and found the two of you had raided the pantry and emptied box after box of pasta across the first floor. Or worse, when I came home and found you two on the couch and gnawing on an entire chicken that Monty had taken out of the pot on the stove when mom left on errand. Monty ran upstairs and left you holding the bird.

Monty has been gone four years now. And now you are gone. I will miss every greeting at the door when I came home. Every walk we took. Rest now. Your pain is at an end. You can chase and catch the squirrels with Monty, like you two did on that Christmas day long ago.  Be at peace my friend.

 

For you, in the land of hope and dreams 

I struggle with the idea of fighting to create a future I believe in. I know that not everyone shares the same ideas and values that I have. This is shown to me daily through each and every media platform. But some people do have at least an overlapping share of the same ideas and values. But they’re not all interested in doing the work and not all those that are have the same level of privilege that I have. So I often wonder how best to proceed.

For instance, despite the so- called “democratization” of the Internet where everybody that desires a platform has the ability to have one, some people have to work much harder to be heard. To often they have work harder,  write better, and justify the hell out of everything through research and citation.  I just get to write stuff and be heard, albeit by a small number of people.  But they are people who matter in that they also have privilege to use.

A lot of what I write here I view as nonsense or just outloud thinking of things that amuse me. At least of the things I dare mention out loud because someone is always looking to use something against someone. I have been writing a bit more beyond the trivial recently to document a journey that I am on and to perhaps inspire a few people in an era where inspiration seems necessary. Some of this are bits and pieces of a love letter to a country I took an oath to defend, and to certain ideas of equality and freedom in which I will always believe.

Princess cards she sends me with her regards
Barroom eyes shine vacancy, to see her you gotta look hard
Wounded deep in battle, I stand stuffed like some soldier undaunted
To her Cheshire smile, I’ll stand on file, she’s all I ever wanted
But you let your blue walls get in the way of these facts
Honey, get your carpetbaggers off my back
You wouldn’t even give me time to cover my tracks
You said, “Here’s your mirror and your ball and jacks”
But they’re not what I came for, and I’m sure you see that too

For You,” Bruce Springsteen

I know there are people that like the new direction we are headed. I don’t. I never will. The price of freedom is learning put up with people different than you and finding out they aren’t so different after all. When it works, it is not a bad system, and it is a glorious place. For a lot of people it hasn’t worked. Ever. Except maybe for lucky few individuals. Women, people of color,  Native Americans, the LGBTQ communities, and any group out of fashion in a given moment in history, have never been shown full equality. Those failures only make it worth saving, not blowing it up into a patriarchal white supremacist’s wet dream.

I’ve worked with a lot of people whose politics are polar opposite mine. But I’ve generally been able to believe they were good people trying to good work within a different framework of belief. Some of these people showing up in DC might as well be arriving from distant galaxy for all the commonality of belief in America we share. The oath I took as a soldier was to the Constitution, it still holds. As does my belief that we can never give up. I can never give up.

I will provide for you
And I’ll stand by your side
You’ll need a good companion
For this part of the ride
Leave behind your sorrows
Let this day be the last
Tomorrow there’ll be sunshine
And all this darkness past
Big wheels roll through fields
Where sunlight streams
Meet me in a land of hope and dreams

The Land of Hope and Dreams,” Bruce Springsteen

We simply can’t give up.

Rick Blaine: Don’t you sometimes wonder if it’s worth all this? I mean, what you’re fighting for.

Victor Lazlo: We might as well question why we breathe. If we stop breathing, we’ll die. If we stop fighting our enemies, the world will die.

Rick Blaine: What of it? Then it’ll be out of its misery.

Victor Lazlo:  You know how you sound, Monsieur Blaine? Like a man who’s trying to convince himself……of something he doesn’t believe in his heart. Each of us has a destiny. For good, or for evil.

-Casablanca, 1942.

Being Easy

I put a title here as a placeholder a few days ago. Unfortunately, I no longer have a clue what I was thinking about. No matter, since then, other thoughts have occurred. Many ideas tend to dangle about until they flower or are pruned, sometimes yanked out at the roots. But, I am sitting here tonight watching Robert Altman’s “Nashville” (1975) and wondering, if everything looked as ugly and homogenous in 1975, why in the hell would anyone want to go back to an even earlier in America?

Listening to Keith Carradine sing “I’m Easy” reminds me that I am anything but easy. I’m apparently “difficult,” “freakishly intense,” “complicated,” and a “royal pain in the ass.” I’ve been called other things, some of which have been much worse, but these have frequencies of recurrence where n>10. For the record, I am trying to change some of these things, but frankly, I think achieving “intense” is perhaps the best I can hope to do.

The idea of being relaxed all the time, and easy to be around seems appealing. I think. I just can’t really imagine that as me. There will always be something to do. Some task will always be calling a part of my attention. And there is just too much shit going on in the world for me to think about being relaxed.

It’s not my way to love you just when no one’s looking
It’s not my way to take your hand if I’m not sure
It’s not my way to let you see what’s going on inside of me
When it’s a love you won’t be needing you’re not free

Please stop pulling at my sleeve if you’re just playing
If you won’t take the things you make me wanna give
I never cared too much for games, and this one’s driving me insane
You’re not half as free to wonder as you claim

But I’m easy, yeah I’m easy
Give the word I’ll play your game
As though that’s how it ought to be
Because I’m easy

Fortunately, the song is about being relaxed at all, other than relaxing any tendencies to say no. Kind of like your local 7-11. Although it comes across in the scene brilliantly as little more than a brilliant act of seduction in which three women all think they are the inspiration, and target. Lily Tomlin is brilliant here as she just sits watches and listens to the song.

I like this song. I always have since I first heard it way back when. In 2017 it has a different meaning to me than in the 1970s. Back then, I never thought that an expression of vulnerability was a good thing.

Don’t do me favors, let me watch you from the distance
‘Cause when you’re near I find it hard to keep my head
When your eyes throw light at mine, it’s enough to change my mind
Make me leave my cautious words and ways behind

Vulnerability, openness, availability, these are not the natural characteristics of a freakishly intense caregiver with fascist tendencies. They are also damnably hard to learn, so it may take me awhile. Relaxing the tendencies and desire to control, is freeing, so I expect that to get easier over time. Vulnerability….uggh, that seems pretty scary.

 

 

 

 

Data, Caregiving, and the Ethical Control

This was in response to the tweet pushing Fascism and the Caregiver.

It makes sense, doesn’t it? Those of us with the responsibility of managing large quantities of the personal data of other people constantly think about control. We have legal and ethical requirements to control access, to establish and maintain limits, and use best practices (such least privilege access).  Whether we are talking about the Federal Education Rights and Privacy Act (FERPA),  Health Insurance Portability and Accountability Act (HIPAA), or any of the dozens of other federal and state privacy laws.

We also have the responsibility to encourage use of the data, but always appropriate use. Use that adds value to the lives/livelihoods of those we serve. Above all, use that does no harm, intentional or otherwise, to those whose data it is.

Last week, there was an essay at InsideHigherEd with the statement that “Big Data are ethically neutral.”

Data are never ethically neutral.  How can they be? Data create a definitional representation of the world and actions of individuals. The simple act of definition is fraught with ethical dilemma. I’ve written before about our decision not to collect student sex beyond men, women, unknown/unreported. There needs to be legitimate reason to go beyond this level of detail that outweighs the risk of collecting information about individuals that can be put to nefarious use.

As I write this  on the weekend of a badly written, ill-advised executive order, I know that a number of my colleagues around the state and nation are rethinking data collection elements, especially those about religion or nation of origin. There is an ethical choice about what to collect. For what reason would it be necessary to collect religious preference? I fully understand why the military does so as there are at least three reasons: 1) providing adequate numbers of chaplains with knowledge and training across faiths and denominations; 2) knowing the last rites needed by each service member; 3) knowing what symbols to use on a tombstone. These seem clear-cut to me. However, I can rarely understand why any other government agency or private business would need to collect this. More and more, I understand even less why someone would provide it. The fact is, today’s majority group is no more than tomorrow’s minority group.

There are also ethical choices at work in creating data definitions, specifically in the coding of categorical data or the scale of numeric data. Any choice of categories, any choice of words to describe the category,  have the power to determine how people think about the data, from collection through reporting. A simple example is the tired phrase “first-time freshman” which we (at work) have replaced with “First-Time in College” and “Freshman” with “First-year.” It’s long past time to move away from gendered terms. After all, our flagship university has been enrolling women since 1972.  (When pundits start talking about “colleges and universities being resistant to change” I start pointing out all the ways they have changed in just the last 50-odd years. It’s quite amazing.)

I have control issues, so let’s get back to talking about control.

I’m suspicious of anyone that tells me they are controlling me or my behavior for my own good. It is is usually for their good. On the other hand, one of the maxims I always taught my sons was , “Rules are your friends. If you’re going to break them, make sure you know what rules you are breaking, and why.” Anyhow, there are rules that make sense. Rules for public safety and responsible living within the social compact. Control, in and of itself, is not a bad thing. Controlling access to data as a privacy protection is not only reasonable and proper, it is an ethical and legal obligation.

But if data are locked away, without use, they should never been collected in the first place. There should be use. If data are collected to serve a purpose, let them serve that purpose. If they can be used to serve a greater purpose, that should be allowed as well…with proper controls. The hacker creed is that “Data want to be free.” Perhaps, but they at least want to be more free.

In other words, it is about balance. This is the mistake I made as my wife’s caregiver – I tried to exert too much control, for her own good, of course. And mine, it was just easier that way.

“Easier that way” should probably never be the justification for anything.