365 Jobs: Sweat Test

Diary of a Small Contractor

Thursday, November 6, 1986

Little four-year-old
with muscles of a tractor,
how you race up hills!

That's my son, Will.  Today I've brought him to Children's Hospital for a couple of medical tests.  Will has no apprehension because my wife and I haven't explained what the tests are for, only that they need to be done.  When you're four years old, the world is full of unexplained things that need to be done. 

He's calm.  I'm not.  But I try to appear calm for Will.

The woman giving the tests is not your gushy reach-out-to-children type.  She’s not cold, either.  Simply quiet.  Respectful, perhaps, of the serious consequences of what the tests might confirm.  She straps an electrode to Will’s forearm, sets a timer, and starts giving Will mild electric shocks.

“It hurts,” Will says, and he wiggles in his chair.

“Oh really?” she says.  She holds his arm firmly and stares at the timer.

“Yes.  It hurts.”

I try to distract Will by talking about where we’ll go after the tests are over: we’ll buy a treat at the grocery store.  “Would you like a treat?”

“Yes.”

“What’ll you get?”

“Chewing gum.”

“You don’t want a cupcake?”

“No.”  He looks at me.  “It hurts.”

“Just a couple more minutes,” says the woman.

I’m sure he’s only getting a mild tingle, but still it’s a long two minutes.

For the next test, the technician folds a pad against Will’s arm, then covers it with a plastic sheet and seals all the edges with tape.  The purpose is to make him sweat.  It’s called a Sweat Test.  One of the symptoms of cystic fibrosis is salty sweat — the kid tastes salty when you kiss him.

And that's what we're here for.  Will's pediatrician doesn't think Will has cystic fibrosis, but because of certain symptoms he wants the tests "simply to remove the possibility." 

Cystic fibrosis is characterized by thick secretions of mucus which cause lung infections and difficulty in breathing.  The difficulty increases over time.  More and more, the child needs time on the respirator.  Then full-time on the respirator.  Then the child dies. 

Treatments have improved.  In 1959, median life expectancy of children with cystic fibrosis after diagnosis was 6 months.  In 1986, the moment of these tests, life expectancy is into the teenage years.

Arm sealed, the technician tells us we can go to the waiting room.  In 30 minutes she’ll remove the pad.


I brought a pile of books.  Will selects his current favorite, Cars and Trucks and Things that Go which was written by Richard Scarry, apparently after dropping acid.  For 30 minutes, Will searches for Goldbug in the truly great drawings while I read the inane text. 

The technician quietly removes the pad and collects whatever she needs to collect.  We'll get the results next week.

Normally we don't allow gum-chewing at our house.  But as promised, at the grocery store I let Will select a pack of gum.  In fact, for some reason I go soft and let him select 3 different packs, 3 different flavors. Which, as far as Will is concerned, makes this a special day.

Friday, November 7, 1986

As I drop Will off at Nursery Blue, both his teachers — Margie and Lowell — seek me out.  They look concerned.

“What was this test Will had yesterday?” Margie demands.

“Will said he had to go the Children’s Health Council,” Lowell adds.

“It was Children’s Hospital,” I say.  “It was —”

I don’t want to say it.  If I say cystic fibrosis, it’ll be like dropping a bomb in the Nursery Blue play yard.  Or am I simply afraid to say it?  To give life to those words — to spread the thought — to make it real?  Am I simply denying to myself the actual possibility that this beautiful little creature who I love might be dying?

I say, “It’s so insignificant, I don’t even want to say what it was.”

Margie asks, “How was the test itself?  The experience.”

“Boring,” I say.  “Totally neutral.”

“That’s the best kind,” says Margie.

The weather is gorgeous.  All week we’ve had fresh, clear warm days and nippy, twinkling nights.  The redwoods around our house are shedding, showering duff at the slightest breeze.

Tuesday, November 11, 1986

Again, lovely weather.  I’m all alone running wires for a friend's house.  I finish downstairs, do half the upstairs and am stupidly drilling one-handed with a 3/4 inch bit when it binds.  I have a powerful Makita drill which, when the bit binds, twists my hand — and my arm, my elbow, my shoulder — until the handle wrenches out of my grip.  The whole incident lasts less than half a second, but it's enough time to rotate my arm much farther than an arm should rotate.  There's an amazing, profound pain in my shoulder.

This is the moment — and everyone, sometime in life, learns this — the loneliness of pain.  I've been hurt before, many times, but never like this.  Never so lonely.  Not only am I alone in this half-built house, this silent space of skeletal studs smelling of plywood and dust, but I'm alone in this pain which is so deep, so chilling to the body.  No one can see this pain.  No one can feel it but me. 

Then, miraculously, the pain disappears.  Maybe my body's natural morphine kicks in.  I work 3 more hours. 

As I drive home, my shoulder begins to hurt again.  At home I ice it.  Even with ice, the ache grows worse. 

My wife calls: Will’s Sweat Test was negative.

By bedtime it’s almost impossible to take my shirt off.  My wife helps. 

For the rest of the week, I can't work.  I can't even drive.  I keep the arm pinned to my side.  It's unimportant. 

Thanksgiving will have special meaning this year.  It's the simple things that matter.  Maybe by then I'll be able to move my arm.  Maybe I'll carve the turkey.  I'm so thankful for so many things — little miracles — including a healthy boy, age four, a boy who runs up hills, who hasn't had to learn the loneliness of pain.  A boy who likes to chew gum.