Caregiving and the Clock

I’ve written before about the price of impatience. In this current episode of providing basically around-the-clock care for my wife, Melinda, I’ve been taking note of my occasional impatience with her. 

About five weeks ago she fell and injured her hip, tearing a muscle. Doctor told her to rest, take it easy, give it time to heal. With the holidays coming, this did not happen. Our Thanksgiving trip to Missouri worsened things. In fact, as I described in the last post, we spent a night in an emergency room and traveled the rest of the way home with a wheelchair. So, for two weeks I have been helping her transfer to and from the wheelchair, cooking for her, keeping an eye on her meds, and taking her to all manner of doctor appointments. All this while trying to keep up with as much work as possible. It’s a lot and requires good time management.

Something that *can* happen with a person in chronic pain, physical disabilities, and a stunning array of medical problems, is that their focus can become rather narrow. Mainly it becomes about their self. It’s not particularly surprising since it can take a great deal of concentration, compartmentalization, indirect thought to deal with pain or even just small physical activities. There’s nothing particularly wrong with this, it just has the ability to put two people on different calendars and clocks.

This can be awkward. I spent enough time in the Army living with the dictum, “If you’re on time, you’re late!” that it is a part of who I am. Further, I once had an agency head who was always late to her own meetings…usually 20 or 30 minutes late. I really hate being late. I hate meetings, but I hate being late more. (Deadlines are a whole other thing…I generally see those as suggestions or desired outcomes.) Anyhow, when I take Melinda to appointments, I see it as a direct reflection on me if we are not in place prior to the appointment time. 

This disconnect can lead to great deal of frustration. The only way around it is to develop patience and improve communication. I have to work to start earlier, knowing that not only does it take her longer to be ready leave (a wheelchair slows everything down), but I have to talk through the time and scheduling with her. When she’s thinking about pain, or actually trying not to think about pain, or focusing just on completing a task so I she can leave, clocks and calendars are not what she’s thinking about. 

Yesterday we talked about this, Melinda and me. She hadn’t really thought about it. Her response was that when she’s taking care of herself, she has no difficulty being on time, it’s just that when she’s relying on me, she doesn’t think about the time at all. There’s probably something to that, but I really don’t think it is all of it. She really does make extraordinary effort to do things, things that just a few weeks ago took little effort. Pain is a real influencer as well, whether she is trying to avoid it, manage it to keep it under control. It takes real effort to do this.

A couple of years ago, I witnessed a similar disconnect between two people. I didn’t understand it at the time, and the details don’t matter, but it was as if these two people were two different species, the disconnect was that great. I finally recognized that one person was very tied to “living in the moment” and letting the moment extend until the moment changed into something else. A natural, organic progression to the end of the event. The other person was less of the moment, and more of the clock. Sensitive to schedules of both parties. Neither could understand why the other didn’t understand their perspective. 

It was so ingrained to both, neither could articulate it, let alone conceive that their positions, or internal context,  needed to be articulated.

Pain and temporary disability can be very much a matter of living in the moment. I vaguely remember this from recovering from brain surgery. Focus, effort, and just trying to do would take the concepts of clock and calendar out of my thinking. Eventually I went back to being a person of the clock, it is too much a part of who I am. Even the years I didn’t wear a watch, I pretty much always knew the time, if only because there are clocks most everywhere, especially with cellphones ever-present. (One of the few things that can drive me crazy is clocks in the same room or adjacent rooms, or really in the same building showing different times. It offends my sense of rightness.)

This current episode of physical disability has brought some new lessons. While very difficult in the first 10 days, I was definitely better prepared, as was Melinda. We’ve worked through this together more easily, mainly by communicating much better. But sometimes, the clock gets in the way, if I let it.

An Update, of Sorts

In just over two months from now, in February, 2019, I will be nine years post brain surgery. I mention this because I have a couple hundred pages of unedited, raw memoir about the recovery experience. In those pages is beginning of a discussion about the need to lose weight.

At the time of the surgery I weighed over 300 pounds. At the time, my weight meant little to me other than as a body image issue, or a clothing issue. Shoes wore out faster, clothes had to be larger and of more limited selection. Physical activities were often more limited, although I was generally doing everything I really wanted to do, including backpacking. Comfort was issue. Most chairs are still designed for an average body weight and size of 160 pounds.

Whatever the problems, they were really only mine.

While in neuroscience ICU I realized my weight did impact others. It had significant impacts on those taking care of me. This became clear to me in the comments of one night nurse who frequently complained about her back. This bothered me so much, that in the middle of one night when I fell trying to get off the bedside commode, I refused to ask for help. Despite the weakness, the wonky head, and all the tubes connected to my arms, nose, and head, I refused to call for help. Instead I struggled, slowly and painfully, back into the bed.

All of this was on my mind two years ago today when I started with a weight-loss clinic. It has been a successful relationship and program for me as I have lost 100 pounds. I have put a few pounds back after ending the active weight-loss phase and significantly increasing my strength training in the gym. I feel stronger and healthier than at any point prior. I know for a fact there are things I can do now that I could not do 35 years ago, like pull-ups and chin-ups. My weight is about 25 pounds less than it was when I left the Army in 1985, but despite being older and probably having less muscle mass, I am stronger. Probably because I am making more effort at being strong then I did then.

And today all this matters a great deal. My wife, Melinda, is temporarily wheelchair bound. A month ago she tore muscle or connective tissue in her hip. Instead of resting and healing, as she had been advised, she got a bit carried away preparing for the holidays and collecting gifts for our newly announced grandchild. This aggravated her injury. A road-trip to southwest Missouri for Thanksgiving aggravated her pain to the point that she could not get out of the car at a motel in Evansville, Indiana on the way home. We found our way to emergency room, spent 12 hours there getting her pain somewhat under control, and a wheelchair.

We slowly made our way home. Fortunately we had taken her car, which is significantly larger than mine, to accommodate her walker. Otherwise we would not have gotten a wheelchair in and out of the car.

We’ve been home a week now. Returning to a mode of existence that we lived a few years ago during her different surgeries. Only now, instead of intentionally trying to use her leg to encourage healing, it’s the exact opposite. She cannot stand at all without a great deal of assistance. So, it’s really important and fortunate that I am strong and healthy right now. It takes a lot of strength to help her, and a lot of effort to protect my back.

My point is not to shame anyone. Losing weight is hard. Extraordinarily hard. Keeping it off is harder still. But there is a reality that our weight does have impacts. One of those impacts is the ability of others to care for us. More to the point, it affects our ability to receive care. This matters.  It may be long-term, it may only be the case if something bad happens, but it matters.

Being a caregiver is hard work.  Some things are harder than others. If nothing else,  a caregiver needs to be fit and strong. Strong enough to let the frequent cries of pain wash over them without interrupting their work. You’ve got to be strong….and so this is easier than it was four years ago.

 

 

The Casual Display of SSN

I was home today because it was Veterans Day and I went up to the attic today to fetch our son’s rocking horse, Daylight.

Daylight is 26 years old and shows his age. His mane is half gone, his tail completely gone. His foot pegs are dog-chewed  on the ends. He needs badly to be curried and Spruced-up a bit (despite being Yellow Pine) because in June he will be pressed into service for a second generation.

20181112_231227.jpg

While in the attic and sorting through a few boxes (a tribute to my ADHD) I ran across the folders with my collection of diplomas and awards from my time in the Army. I thought about tweeting photographs of some as an acknowledgement of my time in service….until I realized that all but two of had my name and Social Security Number.

IMG_20181112_132052.jpg

And then I started to about all the officers and NCOs I knew with such certificates, diplomas, and awards, framed and proudly displayed on their “I Love Me Wall.”

In the 1980s our use of the SSN was downright casual. In the Army, we used them for everything. When I was the company NBC (nuclear, biological, chemical warfare defense) NCO for the company, I knew most of the guys’ SSNs by heart since they were printed on the assignment tags for each of the protective masks. The SSN was everywhere, except when we used roster numbers (basic training, air assault school, for example).

My dog tags had my name, religious preference, blood-type, and yes, my SSN. Of course, it was logical to use the SSN. It is of course, a federal number, and so why create and issue a new number to keep track of people in a federal organization? And this was likely at the core of thinking that every other organization started relying on use of the SSN. If someone has already issued an ID number to an individual, and that ID has some assurances of being uniquely assigned, and has the imprimatur of the federal government, why use anything else?

I guess it is a good thing that identity fraud was much less a problem when I was young. Or at least a different kind of problem. It was easy enough to fake an identity just by saying you were someone else and it surprisingly easy to get valid a copy of someone else’s birth certificate. It’s much harder now. It’s almost impossible, even as a grandparent to get a grandchild’s birth certificate without a half-dozen signatures.

On the other hand, it really hasn’t been all the long since the Commonwealth banned printing SSNs on envelopes, or IDs. Without looking it up, it seems like it has only been about 15 years. The thing is really this. We just now starting to figure out privacy, its protection, how data connect to an individual, and how an individual connects to the data-oriented world. While we are doing this, while we are trying to protect our ID numbers of various and sundry issuances, there are scores or hundreds of data scientists working out ways to connect us to our data without those ID numbers.

I’m beginning to wonder if real privacy is little more than an illusion and a misplaced belief that we actually know the organizations that know who we are.

Catching up

I hadn’t realized it had been six weeks since I last wrote anything. Huh.

I’ve been busy.

First, we saw Lady Gaga and Bradley Cooper in “A Star is Born.” That was the movie that Streisand and Kristofferson should have made. Not only was it incredibly watchable, it was much more believable. There were so many times while watching I thought they were just throwing shade at that unwatchable movie, implicitly saying, “See? You could have done this.”

So, all the busy-ness? I have been pushing through design and development work of a new website, along with building a complete content management system to support it. Often my best work (because of fewer interruptions) occurs late evenings and on into the night. There have also been pieces of this effort that were embedded and now part of the current live site of which I am particularly proud, with some additional modifications underway. Another month or two to finish this off completely.

I have been working to balance the need/desire to do this work with regular self-care routines – I’m almost terrified at the prospect of going back to way my life (and weight) was. To do this, some things have fallen off, like writing, others have shifted around. Life has otherwise stayed much the same, while still managing to increase the intensity of my weight-training significantly.

Life is good.

At the end of September I was in Little Rock, Arkansas as part of a panel discussion on  statewide longitudinal data systems, sharing our experiences in Virginia. I’ve been meaning to write up my thoughts from that day, but haven’t taken the time yet to do so. So I will note the primary theme here as nudge to give it a fuller treatment.

“What most Chief Data Officers and Data Governance people get wrong is this. Control. They make the mistake time and time again that Data Governance is all about control. Controlling access. Controlling definition. Controlling use.

This is wrong because control is very often an illusion, especially when it comes to data. No matter what agreements you enjoin and sign, at some point you give up anything resembling control and can only hope and/or trust that the other party (parties)  live up to their side of the agreement.

In the end, I don’t think this is sustainable. I’m not suggesting the contracts, agreements, MOUs should disappear, because they can’t – they meet a legal need while defining a necessary framework for engagement. Instead I think data governance should focus on the single principle of ‘respect.’ We need to ensure that there is a culture of respect towards the data, towards its use, and most importantly, a constant respect for and of the people the data represent. Too often it seems folks talk about protecting privacy and confidentiality as compliance ritual instead of as a matter of respect. This has to change if we are going to have meaningful data governance and meaningful protections of individuals with a use of data that drives positive change and saely gives voice to those at the margins or those without a voice.”

A star is born, but no

A young colleague was telling me about their efforts to watch the 1976 remake of “Star is Born” with Kris Kristofferson and Barbra Streisand in preparation for the fourth movie of this title with Bradley Cooper and Lady GaGa. They were struggling with it. It felt disjointed and didn’t make much sense to them.

I had to admit that I avoided watching it for 42 years. After talking about some possible reasons why it might not make much sense, I decided to watch it. To see if it was as bad as I thought I recalled hearing that it was. Some movies I find to be completely unwatchable. “Barbarella” is one of those. I first tried watching it a two or three decades ago and gave up in less than 10 minutes. I tried again recently and could only make it 26 minutes before deciding it wasn’t even worth having on in the background.

“A Star is Born” is not quite that bad. Not quite. The thing is it is so locked in the 1970s that I am not sure it is the least bit accessible to someone in their early 20s.

The whole mansion scene feels like the 1978 Joe Walsh song “Life’s Been Good to Me.”
I have a mansion but forget the price
Ain’t never been there, they tell me it’s nice
I live in hotels, tear out the walls
I have accountants, pay for it all

from Wikipedia:

“Life’s Been Good” is a song by Joe Walsh, which first appeared on the soundtrack to the film FM. The original eight-minute version was released on Walsh’s album But Seriously, Folks…, and an edited 4 1/2 minute single version peaked at #12 on the US Billboard Hot 100,[1] remaining his biggest solo hit.

In the song, Walsh satirically reflects on the antics and excess of the era’s rock stars, with nods to Keith Moon and others: “I live in hotels/Tear out the walls”, and “My Maserati does one-eighty-five/I lost my licence, now I don’t drive”. The Maserati that Walsh himself owned at the time was a 1964 5000 GT model, and while fast, could only manage 170mph with tall gearing.[2]

The 1979 Rolling Stone Record Guide called it “riotous”, and “(maybe) the most important statement on rock stardom anyone has made in the late Seventies”.

The spray painting of her name was interesting because he not only did it in cursive, but backwards, from right to left, without seeming to think about what he’s doing.

Pushing her practice session to the point that she did well enough when she got a little bit of “righteous anger” is an overused vehicle that even in 1976 I would have felt it was stale.

Also, the improbability of an audience that came to see Kristofferson’s character perform overwhelmingly like her pre-disco-white-woman-sings-watered-down-soul-with-permed-afro is so unbelievable. This is even referenced within the movie when the two are about to go on tour and their manager convinces him that they don’t share the same audiences and he should stay back.

I also just don’t buy Kristofferson’s character’s skills with earth-moving machinery and building and adobe home in the desert. Basically, there are two many requirements for the suspension of disbelief. That and the “old guy tries to save himself with a young woman’s love” theme probably doesn’t need to ever be revisited.

And two-thirds of the way through it, I think I’m done. If I’m going to watch a bad movie, I want to be really bad and for it know it is bad. Like “Zombeavers” or “Galaxina” (which made Dorothy R. Stratton a star, however briefly and is far better than “Barbarella.).

Reasons to Believe

I was driving home, listening to the radio, and the usual thing starts happening. My mind wanders through connections suggested by the lyrics.

Seen a man standin’ over a dead dog lyin’ by the highway in a ditch 
He’s lookin’ down kinda puzzled pokin’ that dog with a stick 
Got his car door flung open he’s standin’ out on highway 31 
Like if he stood there long enough that dog’d get up and run 
Struck me kinda funny seem kinda funny sir to me 
Still at the end of every hard day people find some reason to believe

-Bruce Springsteen, “Reason to Believe”

“Highway 31?” sounds like “Highway 41.”

My father was a gambler down in Georgia
He wound up on the wrong end of a gun
And I was born in the back seat of a Greyhound bus
Rollin’ down highway forty-one

-Richard Betts, “Ramblin’ Man”

..which then takes me to ..

Oh God said to Abraham, “Kill me a son”
Abe says, “Man, you must be puttin’ me on”
God say, “No.” Abe say, “What?”
God say, “You can do what you want Abe, but
The next time you see me comin’ you better run”
Well Abe says, “Where do you want this killin’ done?”
God says, “Out on Highway 61”

-Bob Dylan, “Highway 61 Revisited”

Highway 61 runs from Duluth, MN all the way to New Orleans, and at the junction of 61 and 49 in Mississippi is the crossroad where Robert Johnson was said to have sold his soul to the devil for talent and fame. The story that is the basis for the easily forgettable Ralph Machio movie, “Crossroads.”

 

On Highway 61 in Mississippi, is the town of Panther Burn, which I only know because of this scene in “Blues Brothers 2000” as it allegedly takes place five miles north.

 

My second favorite song from Blues Brothers 2000 (favorite being “Ghostriders in the Sky”) is Blues Traveler “Maybe I’m Wrong.”

I want to show you that anything is possible
I want to show you that your wildest dreams can come true
And I swear someday I’m gonna figure out how to do just that
But until then, I guess trying is all I can do
Maybe I’m wrong thinking you want something better
Maybe I’m wrong thinking you got no problem making it through the night
Maybe I’m wrong about every little thing I’m talking about
Maybe I’m wrong, but just maybe, maybe I’m right

-John C. Popper, “Maybe I’m Wrong”

and then as “Reason to Believe” is finishing, I connect to the other song of the same name

If I listened long enough to you
I’d find a way to believe that it’s all true
Knowing that you lied straight faced while I cried
Still I look to find a reason to believe

Someone like you makes it hard to live
Without somebody else
Someone like you makes it easy to give
Never thinking of myself

-Tim Hardin, “Reason to Believe”

And then another song plays, and a new cascade of thought might begin.

Trade in these Wings for Some Wheels

When I first really heard Springsteen’s  “Thunder Road” I thought it strictly an anthem for the disaffected and despairing youth of the tail-end of the car culture that began in the 50s and ended in the late 70s. I didn’t think about it in those terms, I just knew it spoke to me in much the way that “Born to Run” did. I spent my late teens on Main Street, cruising, listening to music, talking with other cruisers, and occasionally racing.  While it wasn’t “American Graffiti,” it also wasn’t that far off.  Both of these songs speak to the idea of escape and holding onto love, the same as Meat Loaf’s epic “Bat Out of Hell” and The Animal’s “We’ve Got to Get Out of this Place.”

(This is all starting to go in a different direction than I intended. Who’s in control here?)

There’s a natural linking of these songs: teenage angst and experience. Once “Bat Out of Hell” is mentioned, it’s natural to think of the much better known song from that album of the same name, “Paradise by the Dashboard Lights” which fits naturally between “Only the Good Die Young” (Billy Joel) and the Springsteen’s “The River.” Young love, young lust, and the costs (everlasting torment, pregnancy, and marriage (or is that redundant?)). There are other songs that fit here, but these are all tied to my youth, its soundtrack, so to speak.  All of these songs were created about the same moment of time.  “The “Born to Run” album was released in 1975,  Billy Joel’s “The Stranger” and “Bat Out of Hell” were both released in 1977. “The River” was released in 1980. The movie “American Graffitti” was released in 1973. It all seems to fit together in that decade.

“Born to Run” is full of energy. It’s a restless song, full of the unbridled and unbounded energy of youth. It’s the endless American road trip.

I’ll love you with all the madness in my soul
Someday girl I don’t know when were gonna get to that place
Where we really want to go and well walk in the sun
But till then tramps like us baby we were born to run

We’re just going to go, and keep going, until we find our Promised Land, that place where we’ll walk in the sun. It’s gloriously triumphant, despite a complete lack of anything to be triumphant about it. The triumph is simply that of being young. “We can make our future, it’s not too late.” In his lyrics, Springsteen promises a madly passionate love, escape from the darkness, and endless movement (and thus, newness).

When I was in high school and college, “Thunder Road” seemed clearly a song about people my age because of the line in the final stanza, “Your graduation gown lies in rags at their feet” I always felt that date-stamped the song. I listen to it now and I wonder, at least I want to wonder, could this be song that also looks back at youth? An old man looking back and saying to his wife, “it’s not too late for us.” He sees the look she gives and says,

So you’re scared and you’re thinking that maybe we ain’t that young anymore
Show a little faith, there’s magic in the night
You ain’t a beauty but, hey, you’re alright
Oh, and that’s alright with me

It’s something that reminds me of “Pink Houses” by John Mellencamp.

And there’s a woman in the kitchen cleaning’ up evening slop
And he looks at her and says:
“Hey darling, I can remember when you could stop a clock”

Far from sweetly romantic, and maybe brutally honest, neither seem to be the type of line to spark a night of passion. Which is where the stories in these songs diverge. “Thunder Road” has much more in common with “Only the Good Die Young.”

You can hide ‘neath your covers and study your pain
Make crosses from your lovers, throw roses in the rain
Waste your summer praying in vain
For a savior to rise from these streets
Well now, I ain’t no hero, that’s understood
All the redemption I can offer, girl, is beneath this dirty hood
With a chance to make it good somehow
Hey, what else can we do now?

(Thunder Road)

 

Come out Virginia, don’t let ’em wait
You Catholic girls start much too late
Aw but sooner or later it comes down to faith
Oh I might as well be the one
Well, they showed you a statue, told you to pray
They built you a temple and locked you away
Aw, but they never told you the price that you pay
For things that you might have done

(Only the Good Die Young)

I hear these songs regularly as they fit on a variety of playlists. It sometimes surprises me that the various algorithms (e.g. Amazon Music) put these songs together. It works though, and I think it is right. I don’t think it is sound of the songs, maybe it is simply the time they came out, but with a channel focused around a specific artist with a body of work that spans decades, that seems a bit of a stretch. The commonality of themes,the parallels are pretty clear – a boy trying to talk a girl into sex. “Thunder Road” differs  in that redemption is offered, albeit an ersatz redemption. Is it possible the algorithms can work at that level, to identify abstract themes from song lyrics?

If so, it would be pretty cool and I think I am going to trade in wings for wheels and get on out of here. It’s probably much simpler than that. Time, place, genre of the artists, all gets grouped together and spit out. Or, with Amazon, it’s simply based on purchasing records – people who bought this artist’s music also bought music from these artists. That’s kind of cool as well, as it means there might be a few more people like me, as far as musical interests go.

Now the season’s over and I feel it getting cold
I wish I could take you to some sandy beach where we’d never grow old
Ah but baby you know that’s just jive
But tonight’s bustin’ open and I’m alive
Oh do (baby) what you can to make me feel like a man
But this 442’s gonna overheat
Make up your mind girl, I gotta get her back out on the street
I know you’re lonely like me, oh so don’t fake it
And maybe I can’t lay the stars at your feet
But I got this old car and she’s pretty tough to beat
There’s plenty of room in my front seat
Oh if you think you can make it, climb in (so christine climb in)
This is town full of losers and baby I was born to win

-Bruce Springsteen, “Wings for Wheels” (what later became “Thunder Road”)