by Dan A. Baker
“I’ll meet you at the warming hut in fifteen minutes.” Victor pushed off without waiting for an answer as the girl blew past, skiing the steep moguls under the lift in a string of soft explosions. Victor turned and yelled, “Its new business we’re after. We take good care of old business!”
Jasmine enjoyed watching other people ski. She stopped several times to watch Koji and Malia come down the slopes, yelling, teasing each other, throwing up rooster tails of snow and hitting every little bump to get air. Malia was new to snow boarding, but she pushed deeply into the turns and worked diligently on her form, her long hands gracefully leading her body, like a ballet dancer.
“Does why is youth wasted on the young sound too sentimental?” Jasmine asked Marjorie. When Marjorie didn’t answer, Jasmine finally looked uphill at her.
“Why is youth wasted at all?” Marjorie said distantly. They skied down to the Bonanza lift and met Earl.
“It’s time for one more run,” Earl said. Jasmine watched Koji and Malia head down the mountain and decided to follow them down.
“I’m going down with the kids. See you at the bottom,” she said, leaning over to kiss Earl.
“I’m going up with Marjorie. I want to ask her something,” Earl said. Jasmine hugged him quickly.
“She’s quitting UCSF. She’s just walking away,” Jasmine said.
“I know,” Earl said, pushing himself off on his poles. “That’s why I want to talk to her.”
Jasmine and Earl looked at each other for a long, long moment. The great hand was at Earl’s back too. Jasmine could feel it. Time stopped for them both.
“And you just do science,” Earl said, turning his skis downhill while looking at Jasmine.
Jasmine watched Earl ski up to Marjorie. They moved through the short line and got on the lift. Marjorie’s eyes caught an instant of sun as the lift pulled them up out of the shadows. The same light made Earl’s round glasses glow briefly. The visual metaphor was so profound Jasmine didn’t breath for a few moments. The giant hand wasn’t pushing anymore, it was shoving hard.
“There’s the end of the weather hole,” Koji said in the parking lot, un-buckling his boots. He pointed to a line of ragged dark grey clouds.
“Will it snow much?” Jasmine asked.
“Beaucoup, as the froggies say.”
By the time Earl and Marjorie skied down, the snow had begun with a furious wind. In the short ride to Tahoma the snow had turned from a blustery squall to a slanting blizzard with huge snowflakes.
“I hope we get snowed in,” Marjorie said from the back seat to no one in particular.
“Three feet only, through tomorrow, then there will be sunshine!” Koji offered.
“Too bad,” Earl said wearily.
“I wouldn’t mind a week of…” Jasmine’s cell phone chimed suddenly. As she touched the talk button, a strange feeling came over her, quieting the car.
“Mrs. Metcalf? This is Dr. Howard, at Whispering Pines. Jasmine, your mother died a few minutes ago. We did everything possible. Sometimes they just go.”
Jasmine was ready for this moment. She had worked through the reactions that she might expect at the death of a parent. She hoped to bear it evenly, and accept the inevitability of death. “I’ll… I’ll… call you… tomorrow, then,” she said, the gravity in her voice unmistakable.
The descent from reality was almost instantaneous. It seemed like the windshield became a movie screen, with a long white scene in a sad movie, in a sad place.
“Watch out mom!” Malia screamed from the backseat as Jasmine hit the snow bank head on, plastic from the Volvo’s grill exploding over the hood in a rush of dirty snow and gravel.
The jarring stop and the sickening crunching of metal didn’t interrupt Jasmine’s sudden compression in the slightest. She tried valiantly to resist the overwhelming velocity of the emotions that carried her away, but the effort lasted less than a second. The bottom dropped out of her stomach, as her equilibrium left her in a rush.
She felt small and alone, and the world seemed large and empty. The visceral fear of her childhood nightmares came over her, as she distantly heard herself say, “Mommy, I had bad dreams!” A hard knot of fear told her there would never again be anyone there for those moments. This emotion punched her so hard she had to force herself to breath.
After the tow truck dropped them off at the cabin, Earl held her for a long time. Earl knew a lot about death. He knew there is nothing to say, because there is no one there to say it to. The passing of a person pulls the spirits of their loved ones with them. Far away, to a world of silent thought.
Profound feelings of longing, anxiety, and a strange senseless humor, rotated through Jasmines mind. Right in the middle of thinking about the river of love her mother had given her she would laugh silently, recalling a silly moment when her mother taped a piece of black cardboard to her swimming cap and chased her around the pool at Disneyland. Finally, though, she ended up in a state of helpless, exhausted, bewilderment.
“All this smart stuff, all this science, and knowledge and computers, and we’re still here. Devastated by the mystery of death were ridiculous. We don’t know where we are, we don’t know what life is, or where it comes from, or where it goes, or…”
Jasmine was a terrible blubberer, but it was her first time, and the shock of feeling reduced to a ball of emotions was devastating.
“Shakespeare in Love,” Earl said quietly.
“What?” Jasmine asked, her voice sounding like a little bird, far away.
“Remember the producer in Shakespeare in Love and his famous line?”
“And where will we get a Romeo?” Jasmine asked, flooded with choking pathos.
“It’s a mystery,” Earl said, softly.
Jasmine held his hand tightly. A coarse rope of raw pain, without any association at all, tightened around her, turning her words into a sob. “It’s a mystery,” she whispered, walking down the hall to the bedroom.
A sharp veer in the wind outside the bedroom created a slight vibration in the cabin. Jasmine awoke suddenly. She had actually fallen asleep, it seemed. She had been somewhere, an inert, timeless place with no other people that she could never leave. She had a sharp jolt of anxiety as she realized the feeling was one of an unimaginably deep aloneness. As she struggled against the terrible gravity of knowing this place, her mother’s voice came to her, clearly and beautifully.
“Well where the Humuhumunuknukapu’a’a’ go swimming byiiii…
Jasmine’s mother drifted into the room in a bluish haze, her features so crystal clear, she had to be there. Jasmine felt a warm sensation, as her mother smiled lovingly, finally saying softly, “It’s O.K., pumpkin head. I have to go now, but it’s O.K.; I love you so very much… go to sleep now. I’ll sing a little for you.”
“Well where the Humuhumunuknukapu’a’a’ go swimming byiiii…”
“Well where the Humuhumunuknukapu’a’a’ go swimming byiiii…”
Then, in a shower of beautiful sparkling pinkish light, she vanished.
Jasmine felt the complete separation of every atom in her body, a release that swelled to a crescendo of almost unbearable bliss. Slowly, every one of her tortured nerves went silent, and she felt overwhelmed by a feeling of complete content. She slipped into a warm and deep nothingness, feeling only the loving reassurance of her mother’s special lullaby.
CHAPTER FOUR
“Our market cap is next to nothing compared to those guys, Bill! I think we’re in a very comfortable position to ask at least eighty-five.” Victor spoke loudly into the black phone, swinging around in his big black leather chair. He liked to deadpan when he shocked people.
“They’ll tape a new page in the history of biotech business if you pull a stock price that high,” Bill McPherson responded flatly. He had seen this gambit before, many times. Wild speculation by the company’s officers might stampede the un-initiated, but that’s all.
“All the news is good, and those happy littl
e embryos are going to become happy little disease-free babies, and that’s making happy little FDA approval committees!” Victor said in clipped sentences. “I think Solista is going to jump early, and they’ve got a lot of that pent-up European capital behind them.”
“I haven’t seen much on the news about the protests out there. What’s current status of that?” Bill asked, pointedly.
“Average has been ten protestors a day, no violence. Just the Bible belt wind-ups,” Victor replied, looking out his window at the slowly circulating protesters across the street. “Actually, the professional bitches did us a favor when they went fruit loop over genetically modified food. They cried wolf so long no one’s even listening to them now.”
“As soon as the phase three clinical reports are in, get them off to me,” Bill said, knowing the call was running too long.
“They’re on the way. You think Solista will port out the PIES technology and shut down, or gut us?” Victor asked, trying not to sound too interested.
“It’s hard to say. Maybe they’ll keep a shell since they like the branding,” Bill said.
“I guess I can wait two years. I want to do what Ted Turner did. Race a Maxi and drive it.” Victor liked to irk people. He knew Bill was a sailor who raced a small J-24 sailboat on Long Island Sound.
“There are some big boys in that group, Victor. Ellison, O’Neil, big boats, big egos, and big costs,” Bill said.
“And big girls, too,” Victor replied, noticing a new sign on the street below the office.
DNA IS GOD’S HANDWRITING
The guy carrying it was tall, with wild blond hair, a badly broken nose, and a fierce expression.
Bill calculated the length of the pause carefully. “Your press is good, editorial count has been over 86% positive, looks like you’ve got most of the country liking the idea of eliminating single gene diseases.”
Victor watched the tall rangy protester carefully. “You’d think most people would have had enough of silly love songs,” he said distantly.
“What?” Bill asked.
“Nothing, I just get a little impatient with the great hoary human race sometimes,” Victor said, alarmed by the fierce thrusting of the demonstrator’s sign.
Earl carefully adjusted his burgundy knit tie in the empty conference room. The tie was still his favorite after thirty years, because it knew how to be a tie, without intimidating people. It said, “I’m a gentle caring person, and I won’t hurt you, or take advantage of you.”
The network news producer was young and annoyingly uninterested in the conditions for the interview with Roy, an eight-year-old Progeric child that Earl had grown fond of. She seemed more interested in her short strawberry blond hair and lip-gloss, than the conditions Earl had spelled out which were: no cameras in Roy’s face; no on-camera questions to Roy; and no questions about his condition to his mother while Roy was in the room.
“Is the mother articulate?” she said, flipping through a small notebook.
“Yes. Yes she is. She’s testified before Congress twice,” Earl said, knowing this death was going to be rough. Roy had the special form of courage his mother had; not only a strong courage, yet a real willingness to help in the larger fight.
Earl thought about snapping her underwear, telling her directly and pointedly that she needed to take this seriously, or the interview would be off. But just then, Jonelle, Roy’s lovely mother, opened the door to the conference room by mistake. The young producer looked up from her cell phone directory and froze.
“Dr. Metcalf, see! See my new hat!” Roy said, as he hobbled in, pointing to a hilarious little green and black fishing hat with a stenciled Marlin and the words Cabo San Lucas on it.
Roy slowly crossed the big conference room, bent over his little aluminum cane. Earl glanced at the producer as Roy came into the light. She gasped quietly as Roy’s pale, badly wrinkled face and droopy red-rimmed eyes turned slowly, sadly to her. He looked like a miniature old man.
“Roy, you’ve been to Mexico?” Dr. Metcalf asked.
“No, but my grandpa did! And he caught a big fish like this, and he gave me a picture of his big fish and I get to go fishing next year!” Roy said, taking off the hat, “if I’m not died by then.”
The producer walked over in a carefully measured stride. Earl watched her air of professional concern evaporate, as she got closer to Roy. His bald head, furrowed little eyebrow and striking blue veins were a shock to most people, but when she got close enough, she could see the terrifying frailty of his condition. Roy looked right at her, with his watery eyes.
“It has a rope,” he said, holding up the little hat, “so the wind on the boat won’t blow it away, and the sharks won’t get it!”
“That… that’s a very nice… hat… then, isn’t it?” she said.
“Jonelle Weideman, this is Cathy Breck, from New York and her camera man…,”
“Manny, Manny Sanchez,” the photographer stared at Roy, slowly shaking his head.
“Dr. Metcalf, Roy fell this morning, getting into the car, and…” Jonelle slowly pulled up Roy’s red Aloha shirt to reveal a nasty black bruise.
“Let me see,” Earl said as he held the shirt and kneeled down. His hands glided over Roy’s ribcage so tenderly even the producer noticed it.
“Owie, OWIE!” Roy said, louder each time.
“There’s a little bump on the rib, but I don’t think it’s cracked. If he complains of any difficulty breathing, bring him in,” Earl said, slowly turning him. Earl held his shirt up so the producer could see Roy’s badly curved spine and paper thin skin.
Seeing an eight-year-old child dying from old age from a rare disease deeply affects people, which was the point. The point was to affect people, and to put the maddeningly esoteric work of gene therapy into emotional, human terms.
“It’s so… so unnatural,” Cathy whispered to Earl.
“Nature can be a bitch,” Earl said, suddenly impatient with the endless, tedious explanations. “Evolution can be a cruel, nasty, mean-assed bitch.”
The snap was just right. The stinging words had told this person Esta es un negocia muey serio. This is very serious business.
Roy loved Dr. Metcalf ’s playroom. It was full of soft fuzzy foam chairs, little couches and a TV with a videotape player. As Earl closed the door, he noticed that Roy had to lift his head to see the TV because his chest was becoming more sunken. “Can I take the Herbie movie home today?” he asked. Roy loved cars.
“Sure. It’s funny. Herbie wins the big race.”
“I know!” Roy said.
“When were you first aware that your son had a… condition?” Cathy asked the first question of the interview awkwardly.
“When he was about four, we noticed he wasn’t gaining weight, and he seemed to have some kind of pain in his limbs. We thought it might be pediatric arthritis. We took him into UCSF four years ago, where they made the diagnosis.” Jonelle was ready for the next part.
“And what did the doctors tell you?”
“They said that Roy had a very rare disease called Progeria, and that he would begin aging very rapidly…” Jonelle knew where to leave off.
“What was the prognosis, or treatment?” Cathy asked.
“That Roy would die, probably of heart failure sometime before his tenth birthday; and that he would suffer from the conditions of old age such as bone loss, muscle loss, heart disease, glaucoma, baldness, and arthritis before then.”
“And what treatment was suggested?” Cathy cocked her head to the side.
“None,” Jonelle tried to control the cracking of her voice at this point. “None, we just treat the symptoms, and try not to make it worse than it is.”
“Dr. Metcalf, will there ever be a treatment for Progeria?” Cathy looked at Earl, who seemed distanced.
“Progeria is one of the single gene diseases that PIES will prevent. If we could find a way to turn off the Progeria gene, Lamin A, in every one of Roy’s cells; then re-extend the telomeres,
the ends of his chromosomes in all his cells without causing cancer; or at least in the cells of his circulatory system; then we could possibly treat his condition at some time in the future. But, these are very difficult interventions to achieve in a living human being. The best thing to do, is to prevent this disease and many others like it, in the first place,” Earl said in his soft doctor’s voice.
“Prevent it through germ line engineering?” The producer used a term she knew Earl disliked.
“Through single gene replacement therapy at the embryonic level,” Earl said, deciding not to put a sharp edge on his comment.
“When the treated embryo becomes a person, the disease won’t appear in that person… or in that person’s children?” she said, wondering if she should wait to spring the big question.
“That’s right. Once the gene for this condition is knocked out, it won’t express in the person treated, or in the children of that person.”
“So this person’s genes have been altered, forever, then. I mean from this point forward in evolution, without any way to change them back to their… their, natural state if we wanted to?” she asked in a slight whine.
“Currently, yes, but we don’t foresee a time when our progeny will want to experience the heartbreak, suffering and loss of life we, and our forbearers have endured. We just don’t see that,” Earl said, struggling to maintain his dignified voice.
“Mrs. Weideman, would you submit your embryos to the somewhat controversial PIES gene therapy?” Cathy asked, trying to sound earnest.
“We’re waiting for the FDA approval process to be completed, before I will have more children. Children that I know will not suffer like Roy is suffering.” Jonelle made the point with just the right amount of emotive.
“Does the idea of altering the genes of your offspring, and their children, bother you in any way? Some religious leaders and some government officials are saying that this will lead to a Post Human time. A time when human beings are no longer the way nature has created us.” She decided to use a loaded term.
“Nature also created smallpox, polio, and cystic fibrosis, and we felt it was prudent to alter nature in those struggles. This is really the same thing, but on a genetic level.” Jonelle stabbed her words at Cathy. She looked for a brief moment at Dr. Metcalf, surprised that he wasn’t paying attention.