The Gingerbread Boy (34 page)

What would he do when he could no longer scratch an itch, or pull a stray hair out of his eye?

He’d have to have his hair cut one day. Short. Manageable. That seemed, ironically, one of the cruelest things to him. He pushed the thought out of his mind, then mentally searched for his legs. His left… yes… there it was. He wiggled a toe. He tried to wiggle a toe.

Nothing happened. He tried harder.

Still nothing.

In calm detachment, he guessed toe-wiggling was all over for him now.

He tried to move his foot, to pull it upward, and was unsure if he was successful. His ankles were weak. He stumbled often. Foot drop was becoming a real problem. An ankle-foot orthosis was next on the list of ”equipment” for him… along with the cane which leaned against the wall next to his guitar by the nightstand… and the walker he knew his mother kept hidden in her closet.

As he thought of his left leg, a twitching began in his right calf. Years ago he remembered sitting in the shallow water of a small, sandy lake. His uncle Paul had told him to sit as still as he could, and small fish would eventually swim up to him and nibble on his legs. It was a strange sensation to have a tiny fish nibbling on your skin, kind of a neat feeling, really. He’d laughed.

That’s what some of the twitches felt like now. But it was no longer so neat. Some of the ‘nibbles’ seemed to be coming from barracudas. It became harder and harder to laugh.

Yesterday, he recalled, he’d awoken with a hand staring him right in the face. He’d panicked, thinking it wouldn’t be his, because he couldn’t move it. It lay like an alien blob at his forehead. But then he recognized a small scar on the inside of his thumb he’d acquired when he was about ten and had broken a glass.

That made him panic even more.

It’d happened. His arm was totally paralyzed!

Then, slowly, the pins and needles feeling began to worm into the flesh of his hand and arm, and he actually did laugh. His arm had only been asleep. Just asleep, as it had been dozens of times over the years. Just like it happened to everyone. His horror had subsided.

Daniel grinned to himself now as he recalled the incident, but realized full well that one day that heavy, dead feeling would remain, and his arm would no longer tingle and come back to life.

He sighed and gazed at the ceiling. From the corner of his eye he could see a faint light coming in through the curtains. The dawn birds were beginning to twitter. A neighbor’s dog barked. The sound of a truck rumbled faintly in the distance. It was all so ordinary, yet
nothing
was ordinary. Daniel slowly scanned the room. It’d been unfamiliar to him at first, almost hostile. His mother’s guest room downstairs was supposed to be for guests, and he’d never considered himself a guest.

Family wasn’t a guest.

But he could no longer use the room upstairs he’d had as a teenager.

It took him ten minutes to make it up the steps. And going down those same steps was horrifying.

He’d stumbled once, going down those tall, tall stairs, because his foot hadn’t done what he’d told it to. Bad foot. It hadn’t lifted when it should lift as the rest of his body kept going, and going he went, head first, only managing at the last second to flop over the banister and hang limply from the rail like a loose scarecrow on a pole.

Thank goodness his mother hadn’t seen
that
.

That’s when he knew he had to quit driving. Bruiser was parked in the garage, permanently now, next to his mother’s red van. Give old Bruiser some companionship, Daniel thought. Maybe a little mechanical thrill for the beat-up old vehicle. He’d had to say goodbye to the vehicle because he was no longer sure he’d always feel the brake when he needed to.

Daniel’s heart sank — so many things he’d given up or would soon have to. So many things…

The picture of a slight, dark-haired girl with Cleopatra-like eyes began to form in his mind, and he thrashed his head to dissolve it…

…couldn’t go there.

“You’re an epitome,” a voice suddenly squawked near the end of his bed.

A wry smile formed on Daniel’s lips. “Of what?” he mumbled.

“Of charm and grace,” said the parrot.

“Of charm and grace,” Daniel repeated quietly, lifting a wooden-feeling arm and covering his face. “Of charm and grace. What a joke. How about… how about of
harm
and
waste?
That sounds more like it. That’s more realistic. ”He squinted at the shadowy form of his beloved pet.

“Who should I will you to for after I’m gone?” he thought out loud. “Mom or Joey?” He thought to himself for a few more moments, then, “Probably Mom. Joey might try to hook you up to an amplifier.”

Yoo-hoo bristled his feathers, then lifted a scaly foot and scrubbed the feathers on his head. It was hard to imagine… the bird would probably live for eighty years. Daniel would be lucky to see thirty.

He was feeling sorry for himself…

He grew tired of chasing depressing thoughts around in his mind and pushed away the blankets. He rose to a sitting position, and the effort winded him. Ignoring it, he pulled his legs, legs that felt more like logs, to the side of the bed. Before him, his guitar leaned against the wall. Next to that, his cane.

Which to choose…

Taking a deep breath, Daniel lumbered to his feet, steadied himself, and rested against the windowsill.

He chose the guitar.

He hadn’t been able to play it in months. Wouldn’t it have been great if he’d only had tendonitis? Or carpal tunnel syndrome? Still he reached down and picked up the instrument, the symbol of dreams now fizzled, and worked the strap over his shoulder. He closed his eyes, tilted back his head, and weakly strummed the chords with fingers that felt glued together with rubber cement.

Still… he imagined. He murmured verses to songs he knew by heart, some he’d written himself when he was only twelve years old and, suddenly, he was back on stage. The lights were flashing, the audience was on its feet and cheering. His band was on fire, playing together like a finely tuned machine, like a wonderful, newly discovered organism where four hearts beat as one.

They’d change the world.

So they’d thought.

Still, Daniel sang on. Before he knew it, he was murmuring words on auto-pilot, words he hadn’t wanted to remember…

…if I were an eagle with wide, spreading wings

I’d soar high and gaze down on beautiful things

Then I’d see the only one who could bring me back down

My earthbound angel waiting there on the ground
.

And then he was back in the ballroom with Catherine, dancing. He felt the warmth of her arms around him, smelled her hair, was lost in the magic. He let go of the guitar, let it swing from his shoulder and lifted his arms, as if he was truly back in the moment, and wrapped his arms around air. He could feel her. See her smile at him. See her eyes shine.

He took a step to dance, then another, then tried another… but his leg refused to lift. Off balance, and thrown back into reality, Daniel stumbled and fell across the bed, his guitar jammed sideways beneath his ribcage.

Daniel pounded the mattress with a weak fist. A fist as useless as clay.

“No!”

Fitfully, he rolled over, and the guitar lay at his side like a detached body part. Daniel stared at the ceiling, gasping, as Yoo-hoo fluttered his wings and squawked. A moment later, the door burst open.

“Daniel, what’s wrong?” his mother cried, rushing to his side, her faded blue robe fluttering against her legs. It reminded Daniel of when
he
was the one breaking into a room — Catherine’s room at the old house in the pines and he had been the one to rescue her. She’d had a nightmare. A nightmare where he had turned into a monster. A leering skull.

It was coming true, both physically as well as emotionally, and she was only aware of the emotional aspect. He was most certainly a monster to her now.

“I’m all right,” Daniel said as his mother hovered over him with terror on her face.

“Are you sure? What happened? Why is your guitar on the bed…” then she noticed it was still strapped to him.

“Oh, Daniel.” Tears came to her eyes.

“It’s okay, mom. Don’t worry.” Daniel turned his head away from here. “I hate having you see me like this.”

“Don’t say that. I’m your
mother
.”

He nodded. “I hate being a burden to you. I hate it.”

Yesterday he’d caught sight of his mother sitting alone in the living room staring at a photograph. It was an old black and white photo of the family when it was whole and complete. She, her wonderful husband, her adorable son and daughter leaning against a rickety hut in South America. Smiling. Such a beautiful family.

A disappearing family.

He’d buried his face in his hands and wanted to scream. Then he’d retreated to his room to summon his strength, gather his courage, and come out to comfort his mom.

“Do you want to talk?” Daniel’s mother was now asking, still visibly shaken. She sat on the edge of the bed and folded her hands together. Her lips were trembling.

Daniel wiped his eyes and tried to pull himself together. “I feel like I’m six years old again,” he said with a limp smile. “And we’re surrounded by the jungle. There are scary things all around me and I don’t understand them and can’t control my fear. And then, you and dad come in, talk to me, calm me, and all is well once more.”

“I wish I could make it all well again,” his mother said, lowering her face.

“You make it better. That’s what counts.”

Daniel’s mother raised dewy eyes and looked at her son, a loving look tinted with despair.

“I feel guilty, Daniel.”

“Guilty?” Daniel raised himself on the bed and leaned on his elbows. “What do you mean?”

She looked away. “For so long,” she began, “I tried to stop you from running away from things,” her voice became fractured, and she put her hand to her mouth, “and now it’s becoming a struggle for you just to walk!”

Daniel wrestled out of his guitar strap, pushed it aside, and put his arms around his mother’s neck. She lowered her head against his chest. “Don’t worry, Mom none of this is your fault. It just happened. I did run a lot. I ran away when dad died, and when Julia died. I did it all the time and pretended nothing was wrong. It’s what I do, I guess.”

“But you weren’t really running, were you?” she said, “You were managing. Coping as best you could in your own way.”

“Maybe.” Daniel paused and heaved a sigh. “And I know what you wonder now and it’s probably true. You think I’m running from Catherine.”

His mother pulled away and straightened herself. Her coppery-colored eyes shone, bore into his as she pleaded, “Can’t you tell her, Daniel? Can’t you just explain to her what’s happening to you? I know we’ve talked about this, but I still can’t understand it. Help me understand.”

Daniel looked at the floor and whispered, almost to himself, “Such a short time. Such a short time we were together and I knew right from the start that she was the one. And you never even got to meet her.”

“Then give me that chance.”

Daniel tilted his head back and closed his eyes. “The burden on her would be intolerable. She’s a healer. A fixer. She wouldn’t want to leave my side. She could go on like that for months or years. She’d never be able to fix me. She could hate me one day for it.”

“And you’d rather have her hate you now? Let her think you pushed her aside for your career?”

“That… or her old roommate.”

His mother sighed again. “Oh, Daniel. I don’t know.”

“If things were different, things would be different,” Daniel said. “But staying by my side now would ruin her life. I have to look at her circumstances, too. She’d quit college. I know she would. She’d throw aside all her dreams, and they’d be hard, maybe impossible, to pick up again. This is the best way. I still believe it.”

“But it’s such a… a front.”

Daniel grinned wryly. “The name of my band. How fitting, isn’t it?”

She shook her head. “All I know is that if I were Catherine, I’d want the choice to stay or go.”

“I’ve thought of that. But don’t you see, Mom, telling her would take away the choice. She’d feel obligated to stay. I’d rather her not know.”

“But it just seems so… so…”

“Cruel?” Daniel finished.

“Daniel. You don’t have a cruel cell in your body.”

“I hope that’s true.”

There was a period of silence. The morning light deepened, brightening the room’s cool, green colors and calming plants. Yoo-hoo bristled on his perch, then relaxed, folding his feathers together in a form of smug cluelessness.

“I just don’t want you to be so alone in this, honey. You
need
her. Don’t you miss her?”

Daniel sagged back down on the bed. “With every breath I take.” He closed his eyes, feeling a deep tremble inside which had nothing to do with his illness. A restless stirring in his bones, a heaviness inside which sometimes swelled to the point of bursting.

“But I can’t dwell on it. The things I can’t have, or the things I can’t do. I’d go crazy, if I haven’t already. And,” he added, “I’m not alone. I have you. I have Uncle Paul and Aunt Susan. I have Joey. The church people are here all the time and the people from the Amyotrophic Lateral Sclerosis Association have been great. I’ve got a lot of support.” Daniel lifted himself to his elbows and stared at his mom. “I’m more concerned about you than myself most of the time. I’m worried about
you
being alone.”

“I’m never alone, Daniel. Don’t worry about me!”

Daniel lowered his eyes. “You know what I mean. Afterward.”

“I don’t want to think about that. I can’t think about that! There have been spontaneous remissions, people who live for decades with this illness. I know, I’ve researched.”

“And so have I,” said Daniel. “Those cases are rare, and mostly unconfirmed.”

“But it could happen to you. It could be you, Daniel! Have faith.”

“I do have faith. Without it, I’d be gone by now. I would have jumped off a building or driven into a tree while I still could. I’ll endure this, mom. Will you?”