After the Fire: A True Story of Love and Survival (12 page)

Chapter 21

T
wo days after Alvaro saw himself in the mirror, Shawn asked Catherine Ruiz if patients ever wore gloves after their burns had healed. “Sometimes,” Catherine said. “But we don’t recommend it. The sooner you get used to your scars, the faster you’ll be able to get on with your life.”

Used to his scars? Shawn wasn’t convinced that would ever happen. He was pretty sure it wouldn’t. “I think I will keep wearing them,” he said. “Maybe I’ll wear them forever.” Despite Mansour’s initial predictions that Shawn would lose his fingers, early grafting with skin from his thighs had saved his hands, but to Shawn they still looked like melted wax and they were deeply embarrassing to him. What made matters worse was that no one was willing to reassure him that they would ever appear normal again.

Mansour had told Shawn that scarring was unpredictable and he couldn’t make promises about how his hands would ultimately look once the scarring and the grafting was done. Genetics played a role, he explained. Dark-skinned people generally scarred more than people with lighter skin, and the darker the skin, the more likely the scars were to be thick and raised, which was bad news for Shawn.

The scarring process went on for one to two years, Hani had told Shawn, so it was common for burn patients to look worse when they were fully healed than when they first left the burn unit. That had frightened Shawn more than anything else the doctor said. Every morning he studied his image in the bathroom mirror, looking for changes. Each new bump and blemish caused him alarm
. Look at this, Mom,
he would say, calling Christine to the mirror.
What is that?
Studying his face, Shawn wondered whether the rich brown color would ever return to his now pink, mottled cheeks. And would his hair grow back thick and curly, the way it had been before the fire?

Sometimes, Shawn didn’t help himself. The doctors didn’t know if it was stubbornness or depression, but he rarely wore the clear plastic mask prescribed for him — even though they had told him the mask could significantly reduce his facial disfigurement by stretching the skin and compressing the scars. The scarring process was aggressive and constant — twenty-four hours a day. “You can’t let it get ahead of you,” Mansour had explained.

Catherine scolded Shawn when he didn’t wear his mask.

“The more hours you are out of it, the scar will grow thick and bumpy and can distort your features,” she told Shawn. “Do you understand?” Shawn understood very well. But the mask was tight and hot. When he wore it, he felt as if he were suffocating and looked like the killer in the horror movie
Halloween.
So, stubbornly, he decided he would rather deal with some disfigurement than have to wear the damn mask for twelve hours a day.

What he couldn’t deal with were his hands. They were so hideous looking that he rarely removed his tight-fitting black Jobst gloves, prescribed to compress his scarring. When he occasionally misplaced one, he became agitated and shoved his hands into his pockets. Shawn knew the gloves stopped working when the scarring process was finished.
What then?
he wondered.

“I know my mother and a lot of my women friends have said they always look at a man’s hands first, and I always kept my hands nice,” Shawn told a friend. “Catherine says she knows people who continue wearing the gloves after the healing process is done. Maybe I’ll have some nice custom leather gloves made.”

At least his girlfriend wasn’t bothered by his burns, Shawn said. Shawn had met Tiha in music class at University High in Newark. They had become fast friends and had started dating a year later. The fire had made them closer than ever. “Tiha doesn’t care about my burns at all,” Shawn said. “I could never, ever see her leaving me because of my burns. I’m more concerned about strangers’ reactions.”

Shawn had come a long way in the months since he had left Saint Barnabas, and he was making significant gains in his daily ninety-minute outpatient sessions with Ruiz. The third-degree burns had caused a loss of sensation in Shawn’s hands, but the exercises with Catherine had begun to give him back some of the flexibility and strength he lost as the scars tightened his skin, constricting his hand movement. He could dress himself again, except for buttons. He was also able to bathe himself, wash his own hair, and brush his own teeth. He could pull on his gloves and turn a doorknob with one hand. Catherine anticipated that Shawn could eventually regain 90 percent of the dexterity in his hands — but there was no guarantee, even with additional surgery or skin grafts, which he resisted. Chronic pain in his joints and from his scars sometimes caused Shawn to wince when Catherine bent and stretched his hands. The corners of Shawn’s mouth were so tight from scarring that he could open it only half as wide as before he was burned. Even laughing was hard. Shawn wanted more than anything else to drive again, but that was still weeks away.

Even when impatient, Shawn impressed. “He’ll kick and bite and scream, but he’ll get better anyway,” Catherine predicted in a team meeting in mid-April. “For an eighteen-year-old, he has the capacity to handle so much. He has such inner strength. He has a level of faith that most people don’t. A lot of this comes from his mother, and he’s extremely lucky to have her.

“The way people deal with burns is the same as the grieving process,” Catherine added. “You’re grieving the body image you had prior to the burn. Burn patients mourn their looks years later. Anger, denial, sadness, acceptance — that’s what I expect burn patients to go through. Right now I see all four of them in Shawn. I see him angry, but I also see him planning ahead, and that is acceptance.”

Alvaro had his eye on the future, too. His burns were bleeding less, so he no longer required twice-daily blood transfusions. (Since the fire, the blood in his body had been replaced six times.) The doctors had told him it would be at least a year, and probably much longer, before he was fully healed. In the burn unit, that meant simply that his burns no longer oozed and were sufficiently covered by either scars or skin grafts to resist infection. Reconstructive surgeries on his torso, arms, hands, face, and neck would prolong the process, Mansour explained. Alvaro was eighteen years old. He would probably be in his midtwenties before everything that could be done was done, the doctor said.

Alvaro was eager to get on with it. His daily routine at Saint Barnabas was heavy and exhausting. There was physical therapy to restore his agility and build his strength and endurance. And there was occupational therapy to relearn the basics, such as walking, writing, and feeding himself. Every step Alvaro took was hailed as a victory, his first ten steps earning him a round of applause from the burn staff, his first twenty-five, a standing ovation. Pushing a video into the VCR, raising a fork to his mouth, holding a cup of juice, were all causes for joy.

The toughest part of recovery was also the most critical: stretching his burned skin to counteract the scarring. That job fell to Roy Bond. For an hour every morning, the strapping physical therapist bent, pushed, and pulled the boy’s grafted arms. Then he kneaded the thickening scar tissue from Alvaro’s chin to his neck until Alvaro screamed in pain. Sometimes the scarred skin would rip from the stretching and spurt blood.

“It’s a constant tug-of-war between you and the scar,” Bond said one day when Alvaro begged him to stop. “You can’t say,
Okay, I’ll do this tomorrow,
because the scar will win.”

The problem of scarring was much more than cosmetic, Bond explained as tears gushed from Alvaro’s eyes. Scars could cause muscles and joints to contract permanently, leading to deformities. Without the rigorous therapy, Alvaro could wind up unable to raise his arms, or even to move his head from side to side.

“Is that what you want?” Bond asked gently. “You won’t be able to open a cabinet, or drive your car, or hug Angie.”

For a boy whose future seemed so far off, Alvaro had big plans. He had told Bond he wanted to finish school, find a good job, buy a house for his parents, and one day marry Angie and have a family, a boy and a girl.

“What about your plans?” Bond asked. “What about your dreams?”

“Give me more,” Alvaro said, crying harder.

“That’s my boy,” Bond said, obeying the order.

Placing his huge hands on Alvaro’s maimed chest, Bond pressed and squeezed the ravaged skin. Alvaro grimaced and bit his lip so hard it bled.

“Go on, Roy!” he screamed. “Keep stretching! I don’t want to be deformed. I want to be the old Alvaro. I want to get out of here and go home.”

Wednesday, May 10, started out happily. When Alvaro arrived downstairs for his morning physical therapy session, he found the room dressed for a party. Colored ribbons streamed from the walls, and a piñata shaped like a baseball dangled from the ceiling. Shawn appeared, leading a rousing chorus of “Happy Birthday,” and all of the therapists and patients stopped what they were doing and joined in. When the singing stopped, Shawn handed Alvaro a baseball bat and told him to “have at” the piñata. Seated in his wheelchair, the now nineteen-year-old Alvaro took the bat and slowly brought it back behind his head, then, with all his might, swung at the piñata. The papier-mâché baseball burst open, and candy rained over the therapy room as everyone whooped and clapped. It was his first time swinging a bat since the fire.

He decided to make it a day of firsts.

“Let’s see if I can write,” Alvaro said, looking at Shawn as the others swept up the candy. Shawn fetched a pen, and the therapists provided a clipboard with paper. Shawn put the clipboard on Alvaro’s lap and held out the pen. Alvaro took the pen and gripped it in his gloved right hand. It shook so violently that he had to steady it with his left. Both hands, one supporting the other, paused for a moment over the paper. Then Alvaro began to write. The message took a few moments to compose. The writing was small and shaky, but the feeling was clear.

“Shawn You Are a Good Friend.”

From the moment Shawn and Alvaro had met, nine months earlier, at the start of their freshman year, their relationship had been based on joking and kidding each other. Shawn needled Alvaro about being neat like a girl. Alvaro cracked about Shawn’s clothes always being strewn around the dorm room. Shawn teased Alvaro about being bookish. Alvaro chided Shawn about having so many girlfriends that he couldn’t keep their names straight. So Shawn had not expected such tenderness from his roommate, and the sentiment moved him.

“Oh my goodness, Alvaro,” he said, looking at his friend’s heartfelt words. Shawn laughed at first, half-embarrassed, and then he choked up. “I thought you were going to write something silly.”

Alvaro just smiled.

An hour later, back upstairs in the burn unit, the birthday celebration continued. As Shawn wheeled Alvaro to his room, the nurses gathered around them. “This way,” one of them said, directing the boys to the second-floor nurses’ lounge. On a table was a birthday cake with maple-walnut icing and the words “Happy Birthday Alvaro” written on it. Next to it sat a gift box with purple ribbon wrapped around it and a matching bow on top. Shawn opened it for Alvaro. Inside was a music box. Inscribed on the top was “A friend is one who knows you as you are, understands where you’ve been, accepts who you’ve become.” Alvaro looked at the box for a long time. His lip quivered as if he were about to cry. He looked at each of the nurses. All were in tears. The nurses accepted him for who he had become. And Shawn did, too. But what about everyone else? Alvaro wondered. What about strangers on the street? And the girls who used to flirt with him? What about his classmates back at Seton Hall? Would they accept him the way he was now? All Alvaro could say was, “Thank you.”
Thank you for accepting me for who I have become.

At five o’clock, Angie arrived in Alvaro’s room, and she and Shawn and Alvaro talked and laughed like old times. They talked about safe things — movies and music videos, that sort of stuff. Daisy and Alvaro senior sat in the corner, leafing through magazines, barely acknowledging Angie’s presence. They had spent the afternoon preparing for a family birthday party that was to take place later in the day, and they hadn’t expected to see Angie at the hospital. She had been coming less and less. The tension between Angie and Alvaro’s family had been simmering for weeks, ever since Angie went away for spring break. It was about to boil over.

Feeling as if she could no longer be in the same room with Angie, Daisy abruptly rose from her chair and walked to the visitors’ lounge down the hall. She had bit her lip to stop herself from saying something that would hurt her son. Now she complained bitterly to one of the nurses. Angie hadn’t brought her son a birthday present, Daisy noted. She hadn’t even wished him a happy birthday. How could she be so thoughtless?

“I used to love her. No more,” Daisy said, her voice sharp with bitterness. “She doesn’t love my son.”

The nurse tried to make Daisy see things differently. Angie was just a teenager, she said. Adults didn’t react well when their loved ones were burned. “She’s just a kid. Don’t expect too much of her.” But Daisy didn’t want to hear it.

“I don’t want her here,” she said. “I want her to leave.”

“What does Alvaro want?” the nurse asked.

“My son still loves her,” Daisy admitted. “I know he does. I see it in his eyes.”

The second birthday party got under way at dinnertime. In bunches, Alvaro’s extended family arrived in the waiting room and chattered excitedly in Spanish until the guest of honor was due to arrive. The tiny area, just outside the burn unit, was jammed with aunts, uncles, cousins, and friends. Contemporary Latin music played softly in the background from a radio someone had brought, and a giant buttercream sheet cake waited to be cut.

When Shawn pushed Alvaro, in his wheelchair, into the middle of the crowd, a roar of well-wishing greeted him. Everyone took turns having his photo taken with the birthday boy. But Alvaro’s sisters, ever protective of their only brother, edged Angie out as she approached to have her picture taken with him.