T. Scott

There was a tree in the garden...

What are these people trying to protect their children from?

As Pratchett tells it, when the headmistress accused Susan Sto Helit of teaching her elementary school students about the occult, Susan calmly said, "Of course".  "But why?" the headmistress wails. "So they won't be shocked,"  Susan sensibly replies.  Reality is shocking enough without sending them into the world unprepared.

The latest idiocy is the school board in Tennessee that has banned Maus from the eighth grade curriculum.  Maus, one of the greatest of all novels, a singular work of art and compassion, recounting one of the most important stories of the 20^th century.  The board members object to some foul language and nudity.  Yes, yes, they say, we know it’s important to teach about the state-sponsored murder of 10,000,000 – count the zeros – men, women, and children, but do we have to be so ugly about it?  Can’t we find books that our tender babes can learn from without being exposed to indecent language and naked bodies?  Holocaust-lite?

Can it be true that these ten fine upstanding citizens actually believe that these young teens have so far not been exposed to the ways that people actually talk?  That they haven’t already been searching for, and easily finding, naked bodies on the internet?  I could almost be sympathetic to their quest to preserve childhood innocence if it wasn’t such obvious evidence of how estranged from their children’s lives they already are.

Sometimes the bans are more blatantly ideological.  A pandering state senator in Oklahoma puts forth a bill banning books related to "the study of sex, sexual preferences, sexual activity, sexual perversion, sex-based classifications, sexual identity, or gender identity or books that are of a sexual nature" from school libraries. He says, “our education system is not the place to teach moral lessons that should instead be left up to parents and families."  The fear seems to be that these books might lead the unsuspecting child to discover that some people believe that being gay is not evil.  How can a parent be expected to inculcate the appropriate revulsion in their children if there are school-sanctioned books emphasizing acceptance and love?

Most pathetic was the story that resurfaced during the recent gubernatorial campaign in Virginia about the mother outraged to find that her 17 year old was assigned Beloved in his AP English class.  The kid said the book was disgusting and gave him night terrors.  So he quit reading it.  His mother turned his discomfort into a crusade.  According to the 2013 WaPo article, the mother believed the content “could be too intense for teenage readers.”  What does this even mean?  Life can be too intense for teenagers!  Shouldn’t we be emulating Susan Sto Helit and helping them learn how to deal with it?  Pratchett’s character is riffing off G.K. Chesterton (a fine Christian gentleman, by the way).  Children learn early that there are monsters.  Stories teach them monstrosities can be overcome.

I was fortunate that I was nearly 50 when I entered into shared responsibility for the well-being and upbringing of JosieBug.  I had no illusions about what we could protect her from.  Better to put all of my effort into loving her and helping her learn to use her powers for good. 

The all-powerful god of the Abrahamic religions couldn’t keep his children from eating the apple.  We certainly can’t.  Can we at least help them make good choices now that they’ve tasted the fruit of the knowledge of good and evil?

"all of them have something special"

When the news broke, 18 months back, that Rick Anderson had been named University Librarian at Brigham Young, his many friends and admirers cheered.  An excellent move for him as well as for BYU.  But some among us were also alarmed.  If his new responsibilities were going to require Rick to cut back on some of his many extracurriculars, what would be the fate of his most important contribution to the cultural zeitgeist, the CD HotList?

Rick's been compiling his monthly set of recommendations for many years.  Every time it shows up among my feeds I’ve turned to it eagerly, anticipating the familiar rush of astonishment, intrigue, fascination, excitement, and annoyance it'll bring.  Fortunately, he's keeping it going, although he claims he's cutting back on the number of reviews (January 2019 had 27 entries, this month's has 17).  

The astonishment comes from the breadth of coverage.  His ears are big, his embrace is vast.  His erudition is fascinating as he draws from an apparently bottomless well of context and background.  Here he is in December, describing a disc by Rob Garza, “Now breaking out as a solo artist, Garza has put together a wide-ranging album of club and dreampop tunes in collaboration with vocalists including Enemy Planes, Racquel Jones, and EMELINE. None of the music here will shock or startle a Thievery Corporation fan, but Garza is definitely charting his own territory here: you might expect a song titled “We Want Blood” to be somewhat aggro, but in fact it’s gently bumping dream-house...”  A few entries above that one, he’s championing a recording of tunes by Louis de Caix d’Hervelois, a “little-known” student of the early 18^th century “king of the viol”, Marin Marais.  “This program consists primarily of suites written for viol and continuo (the latter played by varying combinations of bass viol, theorbed lute, and harpsichord) plus one suite for traverso and continuo and several brief transcriptions for viol and for solo lute and guitar. This is gentle music, elegant in a rather self-effacing way, but quite inventive and beautifully played.”

Note that last sentence.  What's annoying is how damn good the writing is.  I so envy his ability to encapsulate the essence of a performance in just a sentence or two.  Reviewing a recording led by the jazz drummer Mareike Wiening, he writes “her progressions are intriguingly impressionistic, often following unusual paths that slip and slide and leave you unsure where she’ll go next. She and her sidemen play with such confident communication, though, that you’ll never be left feeling lost or confused...”

But what most has me excitedly pouring through his monthly selections is the knowledge that there will inevitably be intriguing discoveries new to me that’ll knock me out.  From last June there’s “Strata” by Skúli Sverrisson with Bill Frisell.  I'm a Frisell fan of many years, but hadn't come across this one.  Rick writes, “What happens here ... is that Frisell and Skerrisson play interlocking parts, melodies weaving in and around each other, defining chord progressions collaboratively as they go. The music is quiet and beautiful, but also complex. Skerrisson writes utterly unique bass parts, and Frisell’s tone, which at this point he could probably get a patent for, bathes everything in a golden light.”  A perfect description. 

This month, the jaw dropper is Eva Cassidy, a “hair-raisingly talented singer” who “glides, shouts, and croons her way through jazz standards (“Cheek to Cheek,” “Autumn Leaves,” “What a Wonderful World”), blues burners (“Stormy Monday”), R&B (“Take Me to the River”) and pop (jaw-dropping versions of “Bridge Over Troubled Water” and “Fields of Gold”), leaving her personal stamp on every familiar tune.”  I can’t get enough of it.

Cassidy died of melanoma in 1996, just 33 years old.  Although lauded in her hometown of Washington DC, her work didn’t achieve wider renown until several years after her death.  Her resistance to being channeled into a single genre made it impossible to market her in the mid-90s.  It seems that she was okay with that – she loved too much music too much to give any of it up.

Rick’s CD Hotlist reflects that sensibility.  He categorizes his reviews by Classical, Jazz, Folk/Country, Rock/Pop, World/Ethnic for convenience, even though he knows many of the pieces sit somewhat uncomfortably in their box.  He treats them all with gratitude and respect.  Ellington would certainly approve.

It baffles me that most adults tend to age out of listening to new music, settling for whatever they loved as teenagers, proclaiming everything since then is junk and no way as good as the old stuff.  For those of us who know that the vast world of recorded music blossoms anew every single day with vibrant genius, life-affirming and -changing work, the CD Hotlist is a gift. 

Thank goodness Rick has that library gig to support him so he can keep on doing the very important work that he was meant for.

"I'm Not Dead Yet!" -- Monty Python

I was a little hesitant about putting up that last post, and I see that I had cause.  All of the hugs and messages of support have been wonderful, but I’m very sorry for causing distress to people who care about me.  That essay is as truthful as I could make it, but of course it’s not the whole truth about my life these days which, in general, continues to be very good.  I get grumpy sometimes (as do you, I’m sure!) but I’m never depressed.  I have a wonderful life. 

The essay came about because I’ve got these couple of non-TM related appointments coming up to see what might be done about what I referred to as these new, mundane pains.  I’d been thinking about how best to explain how my pain perception is scrambled to doctors I haven’t met before, who may not have much experience with people with similar conditions.  A few days ago, our unseasonable warm spell ended suddenly – temperatures dropped overnight from highs close to 80 to highs around 40.  Thinking about how my body responds to cold, I realized that it was very similar to how I was trying to understand the effects of the pain on my leg muscles.  When that realization bloomed, I knew I had the seed for a short essay.  I spent the next two days working on it and when it was done I felt it was truthful and well written (I particularly liked the bit where the signal messenger expires after valiantly making their way to the brain).  So I did what I do when I write something I like, and posted it.

I can certainly see how someone looking at my description and trying to imagine themselves in that situation would see it as a horrifying nightmare.  For many people struggling with this and other rare neuroimmune disorders it certainly is.  But I’ve always felt myself to be an incredibly lucky person, and I continue to feel that way.  I am fortunate to have a disposition that leans towards gratitude rather than depression.  I can’t take any credit for that.  Just as some people’s brain chemistry drags them into the dark of clinical depression, mine turns towards joy.  The delight in small things.  When I think about the long walks in strange cities that I’ll never take again, instead of feeling anguish at the loss, I feel deeply grateful for all of the fantastic experiences I’ve had.  The same with all of the other losses.  I wish, wish, wish that I knew how to help other people, with similar challenges, feel the same, but I don’t.  It’s just the way I’m wired.

And then there’s the amazing Lynn.  Anybody who knows anything about dealing with people with chronic conditions knows that the burden on the caregiver is at least as heavy as the burden on the patient, in some ways far worse.  It can break relationships.  But ours was strong to begin with and while we had some serious struggles in the earlier years of my diagnosis, we weathered them.  Sparks still fly, of course, but I’m willing to bet we squabble less than the majority of people in quarter century plus marriages.  She lets me push myself as hard as I can, even though I know it sometimes terrifies her.  The balance between doing for me and enabling me to do for myself is a delicate one and shifts a little day by day.  She is keenly attuned to it.  We continue to have wonderful times together.  There simply isn’t anyone I’d rather spend time with or who I find more interesting.  The fact that we find ourselves in this place at this time in our lives in astonishing.  How can I not be grateful?

Marian & Josie, of course.  Marian, the great unexpected joy of my life, 13 when her mother and I got together, who I bonded with quickly, grown into a marvelous, strong, generous, kind, and smart adult.  Her daughter, born when I was 49, giving me a taste of parenthood and making me a much better person than I would have been without her.  Grateful (again!) that on the cusp of 17, she still wants to spend some time with us and is as fascinating to me as she was when she was a toddler and we explored growing up together.

Yes, the pain and the frustrations of the physical challenges are my constant companions, but I know that so many people struggle with far worse.  And I can still do a lot.  I spent my usual five hours in the kitchen on Christmas Eve preparing the spaghetti and meatballs sauce that we ate on Christmas night after I fixed our traditional Christmas brunch of potato pancakes and champagne.  I make my own lunch everyday and fix our suppers three or four nights a week.  I do the kitchen cleanup every night (except for the wine glasses, which we agree aren't safe with me).  I pick up the guitar for 20 or 30 minutes most days, learning how to rearrange things to accommodate my limitations.  Because I have more loss to work with (to quote Jessica Lange) my singing has become more expressive than ever.  I play harmonica now, thanks to, and in honor of, the late, lamented Dan Boutchie.

I have time to write, which has forever been my passion.  The legend says that in Renoir’s old age, when his arthritis prevented him from holding a brush, his assistants strapped the brushes to his hands, and that accounts for the luminous, shimmery quality of the late paintings.  I’m not there yet.  I can still type.  I can still hold a pen.  What could I have to complain about?

Stipe sings, “Everybody hurts... so hold on... you are not alone...”

We all hurt.  We all suffer.  We all struggle.  And even so, every day brings countless stories of people doing such magnificent things that my heart swells with joy and wonder.  Gratitude.

It's so subjective

Cold doesn’t register properly.  I don’t feel it in the way that I used to.  Inching my slow walk from the car to the restaurant in the 40 degree evening, I don’t feel the chill.  But after a few steps I can tell that my leg muscles are tensing up.  My legs are cold, I know, but I don’t feel as if I’m cold.  At least not the way I did before the short circuit.  Still, if I don’t get into the warmth quickly, I fear the muscles’ll tense up completely and I won’t be able to move at all.  I try to hurry, but that just tightens the muscles more.  “Take your time,” people kindly tell the old guy tottering along behind his walker or leaning on his cane.  I thank them without trying to explain that it’s taking all the time I’ve got.

These new pains affect me like the cold does.  Marsh think that I’ve developed tendinitis in my gluteus medias – she’s sending me to McKeag, her sports medicine colleague, to see if he can confirm it.  It manifests as a two-inch circle of burning pain in the middle of my left butt cheek and a slightly smaller, but angrier disc of pain a few inches down the side of my leg.  They’re harsh and annoying, but I think I should be able to ignore them.  My leg muscles disagree, they tighten up, but refuse to accept the pressure that would let me stand.  But it’s not as if I’m thinking, oh, that hurts, don’t do that – the muscles are rebelling on their own.  What I’m thinking is, I know this leg is strong enough to hold me up.  Why won’t it cooperate?  I know it hurts, but... Damn.

For many years the pain was not a limiting factor.  I relied on the Lawrence of Arabia theory of pain management.  As a college student, Lawrence would dazzle and horrify his friends by holding his hand over a match flame.  Asked, “But what’s the trick?” he replied, “The trick is not minding.”

I’ve been good at that.  The pain resulting from my spinal cord damage is constant, but steady.  A white noise kind of pain.  I’d usually give it a 5 or 6 on the 10 point scale (“where 0 is no pain and 10 is the worst you can imagine”) when whatever healthcare person I was seeing asked if I was in any pain today.  If they asked where the pain was, and I was feeling puckish, I might say, accurately, “from the neck down.”  Depending on my mood, I might provide more detail, starting at my shoulders and describing the different pain sensations there and across my back, around my torso, down the arms and to the hands, down my legs, to my feet and toes.  Throbbing, burning, sharp, dull, cutting, tingling, vibrating, itching.  Something for everybody.  That was probably unkind of me, since the questioner was often just a triage nurse trying to do the pre-visit rundown, but I’d feel the need to let them know that their list of checkboxes was going to be inadequate to my situation.

I was always aware of the pain, but could usually push it to background.  What limited me was the fierce spasticity, the muscle weakness, and the extreme fatigue.  Not being able to walk without the cane or the rollator.  The sheer effort involved in taking each step, while my spastic muscles strained against each other.  Not being able to button a shirt, struggling to tie shoes, fighting to form a guitar chord.  Getting up every morning already weary, pushing myself through the day and feeling the muscles giving out long before dark. These were the barriers, the hurdles that I had to keep trying to surmount in order to accomplish my days.  The steadily thrumming pain I could manage to just about ignore enough.

Now, with the tendinitis on the left and the sciatica on the right “not minding” has stopped working so well.  I think I could still get past it if I could get my muscles to agree.  But because of the way my sensations are scrambled it’s been hard for me to understand just what’s going on where, and why the pain is making it so much more difficult to walk and to stand.  Why I can’t I just will my way through it? 

The first time I saw Bashir, the TM specialist, after I’d been released from the hospital and transferred to his care, he told me to imagine my spinal cord as a cable made up of many wires that extended throughout my body, sending the signals up to my brain.  The demyelination that the term “Transverse Myelitis” describes is equivalent to stripping the insulation off those wires, so that when a signal tries to get through, it jumps from one wire to another and gets disarranged.  Lynn calls it a short circuit.  I’ve referred to it as a signal processing error.  

The wildest example, and one which I probably wouldn’t believe if I hadn’t experienced it, happened with a bug bite on the top of my right foot a couple of years ago.  I knew the bite was there.  I could see the redness and the slight swelling in the center.  I’m one of those people bugs love and in the years before we screened in the Treehouse, I’d often come in from an evening out on the deck with multiple bites on my legs and feet and ankles that I wouldn’t be aware of until the itching and the redness showed up a day or two later.  I don’t spend much time outside anymore so bug bites are rare, but this bug got me and the visual was quite familiar.  So was the itch.  Except that the itch was on the top of the left foot.  Identical spot, wrong foot.  No sensation around the bite itself.  Bite and itch faded together over the next two days.  Imagine the signal messenger struggling through the tangle of neurons at my neck.  Finally arrives at brain level, breathless, barely conscious, whispers before expiring, “Bug bite... top of foot...”  Brain says, “What, where?  Which foot?”  Makes guess. Guesses wrong.

Phantom limbs.  The guy who’s toes itch like crazy even though his leg was amputated at the knee.  My CGI legs flicker in and out of existence.  When Lynn wonders if it’s numbness that’s bothering me I say, oh no, I have plenty of sensations.  I just can’t tell how they match up to what’s happening in the real world.

What I like about my new pains is how mundane they are, how very common.  Nearly half of adults will experience some sciatica pain during their lifetimes.  Millions of people suffer some bouts of gluteal tendinosis.  They may be difficult to treat, but at least there are hundreds of thousands of people in healthcare working on it.  Transverse myelitis?  Best estimate is 1400 new cases a year, a third of whom suffer few long term effects.  Altogether there may be 30,000 or so of us strugglers scattered around the country.  A handful of doctors specializing.  There’s a few drugs that help some people with the nerve pain, but it’s trial and error, lots of side effects, including cognitive impairment which I’m not willing to risk.  I’ll stick with Lawrence for the TM generated pain.

But these new, mundane pains, these more treatable pains, maybe we’ll be able to do something about them, even though my scrambled senses don’t respond to them in normal, mundane ways.  I’m hopeful, if not optimistic.

In philosophy school I was fascinated by the mind/body problem.  Where does the “me” reside?  Is there a soul separate from the body that would retain a sense of personal identity after my death?  I’ve never believed it.  I believe in soul, in spirit, in some animating life force that is more than body, but it’s inseparable from the body, at least as far as encompassing “me” goes.  How could I be “me” without the body, without aging, without these scars, the skin sloughing off and new skin cells growing? Without hunger and desire, physical pleasure and the fantastic mysteries and miseries of dreams?  More than corporeal I am, yes, but my sense of self is so entwined with my body that I can't conceive of a disembodied me.  If the animating force continues when the body succumbs, it wouldn’t be “me”.

Since the short circuit, though, my consciousness is at odds with my body in ways that it never was before.  I construct stories to try to describe what’s going on in my body that might explain my sensations.  In normal times, the body requires so little conscious intervention.  It just needs a smooth track from the brain to the rest of the nervous system.  Then it hums along nicely, adjusting temperature, pumping hormones, digesting, breathing, mindlessly managing the gazillion little muscular interactions that take place when you run downstairs (what an amazing feat that is!).  Then a burst of pain erupts – you touch the hot stove, the kitchen knife slips, the ankle twists.  The brain grabs consciousness – “You there!  Quick, pay attention!  Don’t do that thing that is causing pain.”  Suddenly the body has all your attention and you act accordingly. 

It doesn’t work that way for me anymore.  My brain can’t tell what’s going on.  I can’t use it to make the appropriate conscious decisions.  The body has to go it alone.  Muscles orphaned and doing the best they can.  And I’m left wondering how much of me is me.