Don’t Take Away The Music

Bach, Beethoven, and Tavares

Maybe it’s the premature death of Donna Summer from cancer or maybe it’s an abbreviated phone call from a friend from a musical group that’s inspiring this article, but I do know it’s a topic I’ve been avoiding for a long time, because I’ve been hoping the Almighty Sprite will give it back: music.

Donna Summer I’ll get to, but the phone call had to be cut short because I was at one of my son’s many baseball games, surrounded by dozens of fans and players, none of whom would shut up long enough for me to hear a word my friend was saying, which I thought was rather rude, since our team was winning by a huge margin anyway. Sheesh. And I have yet to call her back.

Why? I don’t want to talk about music, that’s why.

This friend and I played in an over-achieving handbell group together, Bells of the Sound. This is not your local church handbell group. This is a bunch of fire-breathing lunatics who would have the bells implanted in their arms if the doctors would let them. This is a group that thinks nothing of practicing for three hours in a sweltering hot room without a break, all just to count to the 17th beat of the 32 subbeats of the third quarter-note of the 55th measure so someone can ring the E-flat bell of the fourth octave on time. That, my non-musical friends, is nuts. Musical, but nuts. CF calls it aerobic bell-ringing.

Music became an important part of my life in high school. I was member of a remarkable high school band, an exceptional group of musicians led by a talented director who inspired several of the best of us to pursue musical careers. That experience set my taste for music ever since: classical, as classic as possible. None of this Mantovani stuff. Although I did get sidetracked by Arthur Fiedler for a bit.

I was so disconnected from the popular music of the time that I once disparagingly referred to Iron Butterfly (“In-A-Gadda-Da-Vida”) as Iron Buttercup to my sister, which sent her into uncontrollable laughter and gave her fodder for endless jokes and gag gifts and why am I reminding her of this? Brain @$#@%$ damage.

I played French horn through high school and college, played a senior recital in college, joined several community orchestras and bands when I lived in the Boston area, wondered what my life would have been like if I too had pursued a career in music.

Music was a constant in my life. I was always humming or singing (badly) something.

I was always humming or singing what was in my head. Sometimes it was composed music, sometimes it was something I was making up as I went along. Sometimes it was ridiculous variations on composed music. Sometimes it was annoying and my son would beg me to stop. That’s why there are earplugs. For him.

I banged out whatever beat was in my brain, tapping out rhythms going on around me, ones real or imagined, or playing what is known as “air bells” in the car at a red light. Picture someone holding three or four bells in their hands a la air guitar and you get the idea, but in air bells, you don’t play on every note, so it’s a staggered, drunken effect that usually ends when another driver notices and the driver/air bell player sheepishly drops the bells and smiles wanly as he/she guns it.

“You must always have music playing in your house,” someone said to me once. I had to tell them that I didn’t, that in fact I own very few CDs.

I used to wonder if this was true of others who were around a lot of music. One time years ago when I was visiting the music director of my church in Maine, a man who is an incredible organist and harpsichordist, I asked him if he played music at home. He rolled his eyes at me and said no, he had too much music inside his head. I felt relieved.

All of which brings me to Donna Summer.

One day, twisting the radio dial in my car, choosing between Bach and Beethoven, I heard something different, some other kind of beat, something mesmerizing, something hypnotizing….

Love to love you baby….oooh….love to love you baby….

I didn’t change radio stations for years. I was hooked. Hooked on Donna. Hooked on disco. I never learned to dance the ridiculous dances, and I’ve never even seen the ridiculous movies, and I cannot stand John Travolta, but I am an unreconstructed disco hound.

But only of the good, early stuff. See, I have this theory that the good, early disco, before it got all teen-cultured, before it got beegeed (sorry, whoever it was who just died), actually drew very heavily on traditions found in Baroque music, stuff that Bach used. The structure of the pieces, the basso continuo, the flowing treble, the repetition—I could go on and on. I could give a lecture.

So while most everyone was hustlin’, I was looking around for anyone else who might be waiting for the chord structure to resolve itself.

It took me a while to notice it once I was home from the hospital, what with not being able to make sense of anything at all. But one day I had this horrible thought: I realized that there was nothing humming inside of my mind.

Nothing. No Bach variations or Beethoven French horn solos or sighs from Donna or angels missing from Tavares. My music world was silent.

This from someone who used to have a music room in her house. This from someone who used to own her own set of handbells, who still owns her own French horn, her own little xylophone, her own little collection of bells from around the world, who wants more than anything to someday visit China to see this unbelievable collection of 2,400 year-old two-tone history-changing diatonically tuned bells.

It’s been nine months since The Blitz. When I see my neurologist next month, I’ll ask her again, and I’m sure her answer will be the same: things take time, things can still come back. Does that just mean the brain can be retrained to do physical things, like tying shoelaces and buttoning coats, or does it mean more?

I’m willing to give the Almighty Sprite computer programming and long division, but I’m still clinging onto music. I want it back. I’d better call my friend and talk about it.


The Almighty Sprite

Last week CF and I went to the annual brain injury conference hosted by the Washington State Traumatic Brain Injury Council. We went to workshops, talks, lectures, and luncheons, and came away with the same conclusion:

We were pooped.

It was too many people in too small a space trying to do too much in too short a time and having too much fun doing it, but it was worth it. We knew only one other person, and were surprised to see her there, having had no idea that she had suffered a brain injury, and were happy to make several new friends, we hope. I came home and slept for two days, I think, at least according to the calendar I did, although it felt like about 45 minutes.

There’s something disorienting about being in a room with several hundred people all talking about brain injury. For one thing, you can’t tell who has a brain injury and who doesn’t, for the most part.

Sometimes the wheelchair is a giveaway, sometimes it’s not. Does that person use a cane because of a brain injury or because of an old football injury? Does that person stutter because she’s nervous or because of a brain injury?

Should I help that person pick up all those papers or is that an insult to his self-respect? Can I sit next to the person in the power wheelchair or is it reserved for her attendant? Is the front table in this workshop reserved for the deaf or can anyone sit there? Would it be rude to wear sunglasses, considering how bright the lights are in this room? If someone attends only the yoga and massage workouts during every class session, can he still apply for continuing education credit? If I have a brain injury, can I go to a workshop designed for caregivers?

You can see how confusing everything was.

What was also confusing was the topic of the conference: “Who am I now?” The subtitle was “Celebrating the journey to the new me.” I gotta tell you, I thought the conference did a pretty good job of asking the question, but just an OK job of celebrating the subtitle.

My memory’s a bit fuzzy, but I’m pretty sure my high school biology teacher was named Mr. Korn, and my high school horn teacher was named Mr. Koren, but the biology teacher did a pretty good job of teaching me basic anatomy, so I was comfortable following the discussions of what happens When Brains Go Bad in the workshops I attended. No, wait, Mr. Korn was chemistry. Mr. Berisso was bio. Never mind.

My point is, and for once I’ll get right to it, I did well enough with science in high school that I understand intellectually what happened to me with the stroke. It’s the cognitive synaptic disruptive non-happening part that has me stumped.

Celebrating the new me would be fine if the old me didn’t keep wondering where it went. Celebrating the new me would be dandy if the new me would just stop wobbling around and forgetting everything and staring into space all the time.

Celebrating the new me would be good if food didn’t taste so bizarre and if my skin didn’t exude this oily sweat and if my blood sugar would go back to normal and if music would stop hurting my ears and if I could talk without stumbling over my words or losing my voice or forgetting what numbers are or where roads go or what day it is.

To illustrate the “journey to the new me,” the conference had two inspirational speakers: Jason Crigler, a musician who had recovered from a devastating brain hemorrhage, and Ginny Ruffner, a conceptual artist who was in a serious car accident. Both told spellbinding stories of disaster and recovery.

But here’s the thing: Their new “me”s are essentially the same as their old “me”s.

Jason is still a singer and songwriter. Ginny is still a conceptual artist. Sure, it took them years to get back. Sure, Ginny has lots of trouble talking and walking. Sure, Jason has a shorter fuse (says his sister). Sure, they both paid a terrible price. Sure, they wish the whole thing never happened.

So what’s the message here? That eventually my new me will be as good as the old me? That some people luck out and get back everything they once had? That all of this fuss and muss and foot dragging and ball tossing and diaper wearing is just a round trip diversionary exercise foisted on us by some felicitous Almighty Sprite?

Well, Almighty Sprite, if that’s your game, your diaper is no match for me. I got you beat.

A bright, golden haze

Something very strange has been happening lately, something very strange indeed. I am almost afraid to mention it, because it’s the kind of thing that if you talk about it, you can jinx it.

This, before getting to my point, brings me to my word history lesson for the day. I subject you to these lessons because I find them fascinating, and as soon as I learn something new I am compelled to tell everyone else. The word jinx appears to come from the name of a bird, the wryneck. The wryneck is a type of woodpecker that can twist its neck around in a creepy way, as if it’s “jinxing” you. And what is its Latin genus? Jynx! There you go. Consider yourself etymologically enhanced.

Jinxing something by talking about it, by the way, which is also not getting to my point, seems to be related to baseball, specifically to a pitcher pitching something that isn’t, that is, a no-hitter. If you talk about how there hasn’t been a hit, there will be a hit. Hey, no hit! Hit. Or four-letter words to that effect.

My point is, to get to it, I figured out how to get to sleep.

Oh, big whoop.

Stop yawning, all of you. I know you’ve been sleeping since you were infants, and so have I, but I lost the ability to do easily about 25 years ago and it has been horrible. It became particularly problematic when we moved from Maine to the Outer Coast in 2004, 3000 miles and three time zones away from everyone I worked with in Florida, where they all started work before the sun had even cracked an eyeball out here (which, given the weather, was only about one day out of 23 anyway). Suddenly my secret luxury of snoozing until I absolutely had to stumble to the computer in my jammies was cut short.

Working from home, as I had been doing since the early 1990s, is a great solution if you have the right kind of job and the “right” kind of health problem. M.S. is one of those health problems, especially if one of the worst symptoms is fatigue, which it is for me. This is not fatigue like you did a bunch of yard work fatigue, or you hiked the Appalachian Trail fatigue, or you just swam the English Channel fatigue. Unless you had a Bradley tank strapped to your back while you did it. That’s just an approximation, of course. And it only covers physical fatigue, not the mental fatigue and emotional fatigue that comes with M.S. also.

Bradley tank, unstrapped

A Bradley tank, not strapped to my back

But now that I was in Olywa, my decent arrival of 9:00 AM was their indecent arrival of NOON WHERE THE HELL HAVE YOU BEEN?!?!?!?!? and they understood intellectually about the 3000 miles and three time zones and everything BUT WE HAVE PROBLEMS HERE YOU KNOW and how was your weekend WE HAVE BEEN WAITING ALL MORNING WHAT DO YOU MEAN YOU HAVE TO REBOOT??? so I usually didn’t talk too much about not sleeping well with my co-workers.

Speaking of co-workers, I once worked for an editor who was very persnickety about the word “co-worker. He gathered the entire staff around him one day, all 50 of us, and explained in great detail, how we must never leave out that little hyphen between the “o” and the “w” because if we did, you see, we risked, and he said this with all seriousness, we risked people reading it as “cow orkers.” I do not know what an “orker” is. Maybe that is why he was the editor and I wasn’t.

Anyway, years of sleeping pills, sleep routines, mind-numbingly bad books, mind-numbingly bad TV, guaranteed sleep this, and guaranteed sleep that, you name it, done it, tried it, all came to a nightmarish halt during the 20-day vacation at Providence St. Peter Hotel Hospital last August. Somewhere between trying to impress the nurses on the neuro ward by being the ideal patient and trying to get away from Fox News All. The. Time., I stopped sleeping, even with the yummy hospital drugs.

But the yummy hospital drugs did teach me something. They taught me haziness. And for this I have to thank the nurse in the rehab unit, who was always willing to strap me back into bed at night when I tried to wiggle free, and snarl, “Get some sleep,” at me. It was for my own good, really, because she knew I was going to have to gimp-walk the next day in front of incontinent old ladies and brawny young men who’d run their motorcycles off the road and would never walk again. Telling me to get some sleep was really telling me to let the haze from the drugs wash over me until I could at least remove myself a degree or two from my surroundings.

I believe the technical term for this is daydreaming, but I’ve also heard it called dissociation. Depends on what professional degree you have. Since mine is in English, I’ll stick to calling it daydreaming, even though I try to sleep mostly at night, except for naps, which I tend to do during the day. Friends of mine who have practiced dissociating professionally tell me that you can get dissociated permanently if you’re not careful, sort of like crossing your eyes permanently, if you cross them too much, or going blind if you—ahem—do something else too much.  I hasten to add that my daydreaming is strictly G rated. Well, PG rated. Well, M sometimes. Never beyond M. Really. What sort of girl do you think I am? My brain is not that damaged.

The haziness lets my thoughts go off into my comfort zone of warm images from my life, off to distant places of fond memory, back to pleasant scenes with friends and family, cozy moments when Band-Aids fixed everything, quiet moments sitting under forsythia bushes and studying pure gold flowers against pure blue sky, an unbreathable time watching a flock of cedar waxwings feast on a tree of apple blossoms, a brilliantly bright time of my son smiling at me when I finally open my eyes at the hospital.

Sleep seizes the moment to steal over me, to claim its power over my worries about all of the cuts and bruises in our lives. Ah, if only Band-Aids still were the only cure for everything!

Well, enough of that. Now, if any of my former cow orkers are reading this, would you mind setting your clocks back three hours? I need a nap.

As easy as one, two, three

When our son was little, I gave him three chances to do something: one: when I asked him. Two: when I told him. Three: when I ordered him. He soon learned to pay attention and do things when I asked him to do them, rather than waiting for the consequences that might come with the—ahem—stronger requests.

Yeah, that lasted until he was about 11.

Since then, I’ve been counting to three and beyond in my head a lot, waiting for him to decide whether or not he is going to grace us with his presence at the dinner table or at other family gatherings, such as hauling in grocery bags, picking up his dirty clothing, and mowing the lawn.

For several months after The Blitz, I met with a brain therapist who helped me adjust to life après stroke. She had many good ideas and strategies to offer, and I have put lots of them to use. For instance, she worked with me to improve my math skills. She had these fake checks she had me fill out and then record them in a fake register so I could deduct the amounts as if I was actually keeping my checking account.

I never got anything right. I always had to do everything twice or three times. Remember, I am a college graduate, with a degree and everything. And I used to be able to program computers!!! Like the one you are using!!! I would add two numbers incorrectly and we would laugh and I would say, “Well, I would use a calculator at home,” and we would shrug and move on to the next exercise.

I haven’t forgotten what to do. I just can’t do it. “Oh yes,” my brain says, “we must subtract that number from this number.” “Hah-hah,” my brain replies, “you just go ahead and try.” And the rest is just random numbers.

The brain therapist tried to interest me in one of the online sites that offers brain games designed to improve your mind, sites such as, but none of them caught my fancy. I just couldn’t get into staring at the computer screen waiting for a bird to appear somewhere so I could click on where it was so I could get a “sticker” for my little “bird book.” Didn’t do it for me.

What did get me hooked was reverting back to my old nemesis, Bejeweled. I had sworn off this game several years ago when I realized I was its slave—its slave I tell you—wasting valuable time to its devilish charms, its jewels, its beguiling dance, but now, in my weakened, post-Blitz state, I succumbed.

I blame my partner. In her own bedraggled sick-and-tired-of-caring-for-me state, she had for the first time succumbed to a computer game herself, starting with Zuma’s Revenge and then moving on to Bejeweled. This is what got her through the whole horrid mess, so I shouldn’t blame her. But I do.

Here is my rationalization: Bejeweled requires coordination between hand and eye. It requires that you discern patterns, colors, and shapes, make quick decisions, anticipate your next moves. This was all very similar to the exercises I’d been working on with the brain therapist.

The primary thing you do in Bejeweled is swap the position of two “jewels” so you get three or more of the same kind in a row. Easy as one, two, three. That’s it. Very simple. Of course, they add gee-gaws and gizmos to it, and it’s gotten more and more elaborate over the years. I was not prepared for that.

Nor was I prepared for how hard it would be to count to three. Really.

Since I was at one time in my life, a time I can now scarcely remember, a computer professional, I have a rather nice computer monitor. Therefore, Bejeweled displays very nicely on it. The jewels are clear and sharp, sparkly and fully-faceted. Bejeweled bedazzles me.

Even before the stroke, because of M.S., I had a tendency to get a little dizzy at times looking at wiggly things (or being wiggled), but now all of the bedazzling on the monitor, all of those 64 bedecked begemmed bits of Bejeweled conspire to bedevil me. I became bewitched.

“What am I doing?” I wail to CF.

“Just get three in a row,” she calls back.

Oh yeah, three in a row. Three diamonds, three rubies, three sapphires, how hard can that be—one—blink—blink—splat—two—blink—time’s up!

I stare at the monitor and blink at all of the obvious matches I missed as the field dissolves in something called the Last Hurrah. Well, hurrah for that. Show-off. Has it had a stroke? Does it have M.S.?

Then my final score appears, along with the five top scores of all time, which by now, given my obsession, are all mine, except for the second one, still stubbornly occupied by some guy named Bill, who of course is bogus, since no one named Bill has ever sat at my computer, but he won’t budge from the #2 spot, no matter what I score. I suppose that is to keep me motivated, to strive to occupy all five top spots at my computer, and I suppose I could get motivated and conjure up some programmer mojo and find the place where “Bill” is written into the program at the #2 all-time scoring position, and change it, but I can’t even count to three let alone conjure up programming mojo, so chances are I can’t change the program, let alone beat his score legitimately, which is hard-coded into the program anyway and unbeatable, and therefore I am never going to beat it, and I can’t count to three, and I don’t know how to end this paragraph.

My eyes are spinning backwards in my head, which, you might recall if you have been reading carefully, can presage a seizure, so I should stumble to the couch or at least to the floor, but I will probably trip over one of four cats, which will set off the dog, who will bark, which will trigger a headache, which means I will need to stagger all the way to the bedroom, which is much too far away to go with my eyes spinning this way.

The only sure-fire solution to this situation is a shot of cold Diet Dr Pepper splashed across my face. My son is in his room studying. If I call for him to help me, will he come the first time? Should I count to three?