The Crystal Child

At first all I could see was this blur.  Someone coming close.

Then a voice said, “Hello, Aaron. My name is Julia.  This is my clinic.  I’m here to help you.”  It was a nice voice.  But that doesn’t mean anything.  Voices can fool you.  You got to see people’s faces.  That’s the only way you can tell if they think you’re a freak.

I said, “Are you a doctor?”

She said, “Yes. My name is Julia. I’m a gerontologist.  Do you know what that is?”

I said, “Uh-huh. You take care of old sick people.”

She said, “That’s right.”

I said, “I’m not old, not really.  I’m just only nine.”

She said, “I know that.”

I was getting sort of woozy, like I do when the brightness comes.  It’s hard to keep track of time when that happens.  People think I’m falling asleep, but I’m not.  I’m just sort of losing sight of everything like when there’s a light shining in your eyes.  But that’s not very polite, so I tried hard to jerk myself back.  Then I saw she was real close, bending down beside my chair, looking straight at me.  She had nice eyes, not the kind that make fun of you.  Her hair was tied back tight and she wasn’t wearing lipstick or anything, but I thought she looked pretty.  She was older than my mother, I could tell.  She was trying to find my pulse.  That’s hard to do.  But I let her.  I said, “Can you keep me from getting always older like I do?”

She said, “I think there’s a chance. There’s always a chance.”

I thought: Yeah, sure, I heard that before.  Happy talk. But I didn’t say that out loud.  I didn’t want to hurt her feelings.  Instead I said, “Shouldn’t I call you ‘doctor’ if you’re a doctor?”

She said, “Julia will do.”

I said, “I’d like to call you ‘doctor’.”  I said, “I always called my other doctors ‘doctor’.”

She said, “Why do you want to call me doctor?”

I said, “Because then I can believe in you more.  I mean just ordinary people can’t make you better.”

She smiled, like that was funny.  She said, “All right then, you can call me Dr. Stein.”

Back behind her I could make out two more blurs standing by the door.  I knew that was Mom and Dad.  I tried to breathe real smooth and regular.  Mom gets worried when I start sounding wheezy.  I didn’t want her to worry.

Dr. Stein was feeling my cheek now.  I didn’t like that.  I know how my skin feels.  Like dry crinkly old paper.  But doctors have to do that.  I said, “I’ve had a lot of doctors.”  That was true.  More than I could count even. “Mostly they lie to me.”

She said, “They do?  How do they lie?”

I said, “They tell me they’re going to make me better.  But they always don’t.  I think getting old is unfair. Unless … well, unless you’re old.  I’m not, not really.”

She said, “Of course you’re not.  Maybe we can at least slow things down.”

What a dumb thing to say!  I said, “What good is that?  I’m already so old I could die any day.”

She said,  “I don’t want you to die, Aaron.  I’m going to do everything I can to keep that from happening.”

I said, “I don’t want to be just studied.  I want you to make me like other kids.”

She said, “I’ll try with all my heart.  That’s a promise.”

I said, “Oh, yeah?  Well, I’ve got progeria.  What do you think of that?  Nobody ever got over progeria.”

She said, “Yes, that’s true.  I won’t lie to you, Aaron.  But even if it’s true, I’m going to try.  Believe me, I’m stubborn.  And I’m a fighter.  I hate your disease.  I want to kill it.”

I liked that she said that.  Because I want to kill it too.  Dead, dead, dead!!!

***

Before she met with Aaron Lacey, Julia talked with his parents, Todd and Louise.  Well-educated, professional people, they knew the odds were stacked cruelly against their son. They had come to San Francisco from Michigan in search of a miracle Julia would not be able to promise them.  She admitted that frankly and first of all, and they accepted it. They had been through the technicalities with other physicians; they were willing to take chances.

“Of course we want you to save him,” Todd Lacey explained.  “We want that desperately. But we know that may be too much to expect.”  He was a clear-eyed young man, an aerospace engineer who had read everything he could find on his son’s condition, more than enough to know that the disease was fatal.  He had no illusions about Aaron’s future. He asked, “How long can you keep him going?”

“Very few Hutchinson-Gilford progerics survive beyond fifteen,” Julia answered, offering the honesty he seemed to want.  “By then their bodies have aged to well over ninety.  I’ll know more about Aaron after I run some tests.  But I’ll be frank. He looks very frail.”

“He has so little energy,” Louise said.   She was an insurance accountant, also well informed, also totally hopeless.  She might have once been a pretty woman, but anxiety and grief had veiled her face in shadows.  “Mostly he sleeps.  Can you help with his breathing? He wheezes through the night.”

Julia thumbed through the files the parents had brought.  “He’s already on oxygen and broncho-dilators,” Julia observed.  “That’s really all we can offer.”

“Can you make it easy for him?” Louise asked.

“To …?”

“ … to go through this?” Louise said.

“… to die,” Todd added.  He swallowed hard on the words.

“Yes,” Julia said.  “That much I think I can promise.  I have a lot of experience at that.  Too much.”

“I’m not sure what we can handle in the way of costs.” Louise began.

Julia said, “This is a modest clinic, hardly a major-league institution, but I’m reasonably well-supported for research.  Some government funding, some private.  Research requires subjects.  Aaron certainly qualifies for that.  I believe I can find the funds to give Aaron the care he deserves.”  She gave them a firm, direct look.  “The doctor who referred you to my clinic,” she asked, “did he tell you about my methods?”

“Yes,” Todd said.  “We like what we heard.”

“He told you that I’m considered unorthodox?”

“He described you as ‘on the wild side.’  We’re willing to try something new.  What has Aaron got to lose?  We’ve seen specialists in four states.  I wish we’d heard of your clinic sooner.”

“I may want to try some things that seem risky.”

“Aaron’s whole life is at risk as it is,” Todd answered.

But Louise frowned with uncertainty.  “Risky in what way?” she asked.

Julia mentioned several possibilities, probing to find the limit of their tolerance.  Calorie restriction, herbal remedies, aerobic exercise, growth hormones. All elicited the same willingness to trust a doctor they had never met before.  What could that be but a measure of desperation?

Before they departed that day, Aaron’s parents made the necessary arrangements to leave their boy at the clinic.  They would stay in the area for the next two weeks, then if Aaron felt comfortable, they would return home for a trial period of six months.  If there was any sign of progress, they would consider relocating to the Bay Area.  Meanwhile, they might fly in to visit Aaron and take him away for a day or two while they were in San Francisco.  Otherwise Julia wanted the boy under her care for around-the-clock monitoring. “I want everything I do closely documented,” she explained.  Before the Laceys left, she cautioned them.  “You do understand.  Aaron is a first for me.  I’ve never worked with a child.  My patients have all been adults, mainly from eighty-five up — the oldest old, as we call them.  After Aaron, the next youngest patient at my clinic is eighty-seven, believe it or not.  I’m going to try some of the same things with Aaron I try with them.  I once helped a very frail ninety-five year-old reach 103.  That’s my best result.”

“One hundred and three,” Todd Lacey said. “That’s impressive. What was the problem you couldn’t solve?”

“Despair,” Julia said.  “Mr. Denton just got tired of living.  He asked me to leave him in peace.  He died about a month later.”

“Aaron talks about death frequently,” Louise said.  “He’s become matter of fact about it.  That’s for the best, I guess.”

“I don’t agree,” Julia said in a tone of gentle conviction.  “That’s the first thing we have to change.  Despair may seem consoling, but it’s deadlier than germs. I’m a great believer in the power of the will.”  That led her to ask, “Does he have any pastimes or hobbies that engage him especially?”

“He keeps a journal,” Louise said.  “He’s been keeping it since he learned to write. He labors over it every night.”

“Oh,” Julia said, “I’d like to see it.”

She noticed the mother’s reaction, a clear “no.”  “It’s all he has of a private life,” she explained.  “I don’t think he’ll part with it.”

***

She really cares about me — Dr. Stein does.  I like it that she touches me.  Sometimes she hugs me.  She’s a good hugger.  But she’s like all the doctors.  I’m sort of her guinea pig. Doctors like people who have some rare disease.  That makes you interesting.  Like finding a giraffe in your back yard.  Otherwise all they get to take care of is sore throats and colds and broken bones mostly.  Which must get really boring.

Well, progeria is as rare as it gets.  Maybe I know more about it than Dr. Stein does.  I decided to write her this essay about it.  This is what I wrote.

When I was born, I didn’t look the way I do now.  I wasn’t sick, I was a normal kid.  I didn’t have wrinkles or look old.  Then, when I was two, I caught progeria.  Well, I didn’t catch it.  I was born with it.  It was in my genes and just popped out.  So I guess I was born sick and didn’t know it.  A doctor told me that one in every eight-million kids is born with progeria.  So there are eight million lucky kids who don’t have progeria because I do.  I wish I was one of them.  Progeria was discovered in England in 1886.  There’s a kind of acid my body can’t make.  It’s hard to remember the name, so I wrote that down in my notebook.  Hyaluronic acid.  I would never think it was good to have acid in you, but if you don’t have enough of this acid, your skin gets all dry, and your bones get weak, and bad things happen to your heart.  Also your veins get hard.  That’s why it’s not easy to take a progeriac’s pulse. You can’t feel the heart beat.  Also your eyes and teeth might get sick and weak.  It’s like you’re fast forwarding into your old age.  People with this disease all sort of look alike, with sharp noses and bald heads.  I once met a kid with my disease, a girl.  One of my doctors was taking care of her and thought we should meet, I don’t know why.  It wasn’t a happy meeting.  She was sicker than me, with lots of problems that she didn’t want to talk about.  Neither did I.  But we did look alike, like brother and sister.  The progeria I’ve got hasn’t ever been cured.  The person who lived longest was twenty-seven.  She died in 1892.  I hope I’m as lucky as she was.

I showed my essay to Dr. Stein.  She liked what I wrote.  She said it had some stuff in it she didn’t know — like about the girl who lived to 27.

I said, “Do you know why people get old?  Not just me, because I’m sick, but I mean everybody? I think getting old stinks.”

She said, “I ask that question every day.  Why, why, why.”

I said, “Well, if you knew why everybody else gets old, then you’d know why I’m getting old, wouldn’t you?  And then you could make it stop until I really am old.”

She said, “Smart boy.”  She says that a lot.  To make me feel good. She said she would try to tell me why everybody gets old, but the trouble is there are so many ideas about that.  She showed me.  She opened up a drawer in her cabinet and pulled out a big bunch of paper.  On the front, it said “Theories of Aging.”  “See,” she said.  “That’s the problem.  Too many ideas.  They can’t all be right.  When doctors have too many ideas, it means they aren’t sure.”

I said, “So which idea do you like best?”

She said, “There’s one I like especially.  It has to do with mental attitude.  Do you know what I mean by ‘mental attitude’?  I said I did.  It means how happy you are or if you always think sad thoughts.

She said, “That’s one way to put it.  I think people who have the right mental attitude, people who like to wake up in the morning and who like to put their brains to work, live longer.”

I said, “But thinking the wrong way can’t be why people grow old.”

She said, “Why not?”

I said, “Because if you could think your way into not being old, somebody would already have done that, some smart person like Einstein or Thomas Edison or Jesus and then they would still be alive and not old.”

She said “smart boy” again.  “You just destroyed my theory.” And she gave me a wink.  “But I still like it.”

She was going to put all the papers away, probably because they were too hard for me to read.  So I just asked her, “Is there anything about the brightness?”

She said, “What do you mean by that?”

I said, “Well, the way sometimes everything gets very lit-up bright all around and you lose track of time.”

She looked at me as if she didn’t understand — because, I guess, she didn’t.  She said, “Does that happen often?”

I said, “When I get afraid, like at night, when I have all these thoughts about what’s going to happen, that’s when the brightness comes and makes everything stop.  It makes time stop and everything gets just all solid.”  I could tell she didn’t know what I was talking about.

She said, “I’d like you to tell me more about that.  Next time that happens, I’d like to be with you.”

I said, “Nobody else can see it, though.  My Mom and Dad tried, but they couldn’t.  I don’t think normal people can.  Maybe it’s just something I made up, do you think?”

She said, “I don’t know, Aaron, but I’d like to try seeing it.  You know me, I’m curious about everything.”