Tag: epilepsy

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Well, Chute

Long ago and far away, I could hear gears softly grinding as I peered through the plastic scope.

Now? Not quite.

Now? Ooh, close.

NOW!

With the pull of a lever and an abrupt click, a plastic figure of a parachutist dropped into a hole on the slowly spinning board.

“Nice job!”

The game was called Chutes Away, a proud product of the 1970s (complete with commercials starring Dick Van Dyke). The object was to drop a team of air-rescue skydivers into their moving targets below. And for me, it was as much a part of the school day as reading or math.

A wonky nervous system will do that.

You see, I was diagnosed with epilepsy when I was 3. One side effect for me – OK, several side effects for me – was that I had to work hard on skills involving coordination, balance, concentration and spatial perception. All of it required practice, sometimes with a wonderfully patient occupational therapist outside of school, sometimes with an equally patient counselor in Northridge Elementary’s “Resource Room.”

My resource room training had a lot of games, which I only realized the purpose of much later in life. Chess for planning and memory. Or Concentration for pattern recognition. And that silly game of Chutes Away for reflexes, timing, and anticipation.

If you kept yanking at the lever rapid-fire, scattering parachutists like so much dandelion fluff, you’d never win. But releasing when the crosshairs were right on the target was no good, either, because the board was in motion.  You had to lead the target, be patient, and move only when it was time to move.

Do that and you’d hit the target every time.

I think about that a lot in 2020.

Patience is hard this year. Believe me, I know it. My wife Heather, who collects autoimmune conditions the way some people collect action figures, has barely left the house except for medical appointments since March. Our ward Missy, for whom Zoom was once a curious novelty, has pretty much had it with faces on screens and virtual lives. And as much of a homebody as I am, I’m still occasionally growling at frustration at having to delay a trip out because I forgot to launder a face mask.

Simple things require thought. And that can get frustrating.

We’re certainly not the only ones. Pressure builds up. People want out. Folks grab at even the shadow of normal. We’ve seen it more than once: at holidays, at the resumption of classes, at any time where it seemed like a little release couldn’t possibly hurt.

The thing is – we know that story, don’t we?

And more often than not, we’re pulling the lever too soon.

I think most of us by now know someone who has COVID-19. Some of us (myself included) even know someone who’s died from it. We know what it takes to pull the curve down until a vaccine or cure arrives because we’ve done it before: patience, simple habits, basic practices. Any of us could list them in our sleep by now.

But knowing it is often easier than doing it, especially when there are so many pressures on all of us. We want a less-restricted life. We NEED it.

But if we don’t keep our eye on the target and wait for the right moments to act, we’re just going to keep hitting the landscape.

And every crash just makes the game harder.

It is hard. But we can make it. We can lead this target. We can hit it.

Together, we can show the world that we’re a bunch of straight chuters.

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Rules of the Game

Look out, world. Your next dangerous mastermind has arrived.

My 8-year-old niece Ivy has discovered chess.

In case James Bond’s descendants need the data later, some family photos have captured this historic global turning point. In one, Ivy and my dad have squared off across the board in the midst of a carefully thought-out match. In another, my grinning niece is throwing herself into a solo game, complete with self-generated commentary that my mom called “a mix between a roller derby match and the Hunger Games.” (“Let’s get out there and take chances, but play smart!”)

I had to smile. And not just at the thought of the next Bobby Fischer also being the next Howard Cosell.

After all, it hasn’t been that long since I was in the same chair.

Dad taught me to play chess. He taught all of us to play, really, but I was his most frequent opponent, carefully internalizing the values of rooks and queens, the surprises that knights could pull, and why you never, ever touched a piece until you were ready to make a play.

It was absorbing. Mind you, I was grown before I finally won a game against him – Dad believed in treating us with respect by not holding back on the chessboard – but it didn’t matter. It was the game that mattered, the time together, the fun.

And just maybe, the tools I was picking up without realizing it.

From an early age, I had petit mal epilepsy. After a couple of years, it was readily controlled with medication, but there were still some related neurological issues that needed to be addressed, ranging from physical coordination and balance to simple concentration. Among other things, this meant spending some time in the “resource room” at school each week, playing games.

That always sounded cool to my friends – and to me, come to think of it – but it was only later that I thought about what the teacher and I were doing. Sometimes it was card games like Concentration, building up memory. A few times, it was a noisy parachute game called Bombs Away, helping me with my timing and hand-eye coordination. And a lot of times, maybe most times, it was chess.

Chess requires planning. Memory. The ability to weigh choices. And most of all, situational awareness – the ability to be in the moment, thoroughly aware of what’s coming at you and what you have available to meet it.

Invaluable skills. Then and now.

I’ve thought a lot about those unspoken lessons. But it’s only recently that I started thinking about the other lessons that were being taught – by that teacher, by family, by the other professionals that worked with me. Not by a game or exercise, but by example.

Things like patience. Persistence. Taking the time with someone who needs it, no matter how small, no matter how much time they may need. Learning to value each person you encounter, to see not just what they are but what they could be someday … and to help encourage that, if you can.

Invaluable skills. Then and now.

For all of us.

It starts with pieces on a board. Then grows to people in a life. None of it comes easy. (Thanks, Dad.) But if we learn the real rules of the game, all of us can win. Not by storming our way to checkmate, but by being willing to sit down with the other players in the first place.

So good luck, Ivy. Take chances. Play smart.

And have fun storming the castles.

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Hands off the Wheel

The nightmare went right for the gut.

There I was, sitting at the wheel of a car in a crowded parking lot. A car in motion, describing constant circles, not answering any of my attempts to steer.

Foot brakes? Forget it. Parking brake? Somewhere on here, but where? Each new lever or button seemed to make things more disastrous, popping the hood, opening the trunk, making it harder and harder to see the oncoming doom.

The crash was coming. And I couldn’t stop it.

Finally the dream had mercy. Moments before waking, my fingers found the “angel of mercy” brake and yanked up, bringing the car to a slow – of course it was slow – stop.

My eyes blinked open. Relief.

I was never touching that cold medicine again.

We all have our fundamental fears in life. I’ve seen people paralyzed by the presence of a friendly dog, or whose breath grew short in a closed-in space. I even interviewed a phlebotomist once, a professional blood tester, who used to have a deathly phobia of needles.

Me? Well, there are things that make me uncomfortable, like sharp objects or falling sensations. But the deepest, darkest, most basic fear I have – one I share with my wife – is losing control.

After all, I’ve seen some of the consequences.

I’m epileptic. It’s well-managed, to the point that I can live a normal life 99.99 percent of the time. I hold a job, raise a family, even drive a car.

But on those rare nights – only three of them so far, all while asleep, all when off medication for some reason – it’s like Dr. Frankenstein reached over and plugged in the lightning rod.

The mercy of a seizure, at least in my experience, is that you’re not aware of it while it’s going on. You don’t see the jerks and pulls, or hear the noises coming out of your mouth, or know about the bizarre behavior that goes on in the immediate aftermath. (Heather once called an ambulance because my seizure had gone on so long; as they started to put me on the stretcher, I picked myself up, walked to the bathroom, did my business, and came back, completely unconsciously.)

The aftermath: that you know about. If Peyton Manning ran four quarters of the Broncos offense over your body …  if you suntanned on a lane of I-25 at rush hour … if you’ve tried bungee jumping and forgotten that silly little detail about fastening the hook … then you’ve got an idea of what it feels like for three days after a seizure.

It is the loss of control personified. After all, how much more basic does it get than not being able to control your own body?

I hate it. And yes, fear it. Letting go is hard. Admitting I need help – with anything – is even harder.

But lately, I’ve had some reminders.

And most of them are named Missy.

If you read the column last week – or, let’s be honest, many of the ones before – you know our ward Missy, Heather’s developmentally disabled aunt. In many ways, she has control over very little of her life. She reaches for an arm to help her walk. She needs help in a hundred different ways every day, from tying her shoes to managing her home. And yes, there’s many times where it’s frustrating for her, where I can see her wanting to communicate something very simple and not quite knowing how.

But so many times, I see the joy instead.

When we gave Missy her big birthday bash last week, we remembered food and guests and all the usual items – but we also remembered a DJ. Because at her heart, Missy is a dancer, at home with loud music and open floors.

And for  three hours, with only short breaks, Missy danced. And danced. And danced some more.

They weren’t the moves of Baryshnikov or Astaire. They didn’t have to be. Just the bends and the sways and the slow spins of a person in gleeful ecstasy.

Missy had just enough control to reach joy. She didn’t need more. Maybe she even reached a deeper joy by letting go a little.

That’s something I need to remember.

Maybe I don’t always have to drive the car. Maybe, sometimes, it’s OK to just watch the road and enjoy the ride.

Once this cold medicine wears off, anyway.

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On the Other Hand

As I watched Missy reach for a marker and color in a picture, something struck me. I braced Heather about it later.

“Is Missy left-handed?”

“Yes,” my wife said smiling. “I didn’t realize it either until we started painting together.”

I had to chuckle. For a moment, despite no blood relationship, Missy and I had become kin.

No, I’m not a southpaw. Not exactly, anyway. It’s more like I found the cast-off parts of a left-hander and a right-hander in a yard sale and bought the mixed kit. You can call it partial ambidexterity if you want – or you can just call it a total mess. I’ll probably agree either way.

All I know is, I can write slowly and clearly with my left hand – or fast and messy with my right.

I’ll hit a baseball right-handed. But I throw it from the left.

The little bit of clumsy stage fencing I know starts with my left hand. But my rare attempts at clumsy basketball layups start on the right.

Having a foot – pardon me, a hand – in both worlds does have its advantages at times. I’ve never had to fumble at desks and drinking fountains made for a right-handed universe. But I’ve also been able to play a killer game of air hockey, flipping the paddle back and forth to the confusion of merely monodextrous opponents.

It’s kind of fun, actually.

Especially compared to the life I could have had.

When I was little, I had what my folks described as a bilateral syndrome, possibly an offshoot of my epilepsy. You could draw a line right down the center of my body, and past that line, my hands would lose their coordination.

A lot of work with some very patient people finally erased the line. They built up my dexterity – maybe a little too well, looking at the results. But I’m not complaining.

After all, it fits me so perfectly.

As I’ve grown up, I’ve realized there’s rarely just one right way to do something. Politically, that’s made me a moderate (and yes, shot at by both sides). Practically, that’s made me a curious person, eager to see what someone else might think or how someone else might approach a situation.

The results can be surprising, just as when I pick up a guitar the “wrong” way. But it can also be illuminating. At worst, I notice a detail about someone that I’ve never known before. At best, I pick up an angle or an idea that makes my own life a little easier. (I still owe a lot to the teacher’s assistant who taught me how to write papers back-to-front for instance, starting with my destination and building from there.)

Life doesn’t seal itself into neat boxes. And I’m glad for it. It means a little more work, but a lot more fun.

That’s never wrong. Even when it’s not right.

Now that I think about it, I haven’t tried any serious drawing in a long time. The next time I sit down with Missy, I may have to follow her lead, see if my left hand has another surprise it hasn’t told me about.

It may end up a mess, of course.

But if it doesn’t, I’ll have to thank her for giving me a hand.