Apr 19, 2013

When the Fireworks Begin (Chapter XXII)

Devon gradually opened her eyes. Looking at James’s side of the bed, she saw that it was empty. A faint smell of newly cooked rice drifted into their room. Devon smiled, her husband is already in the kitchen.

When she tried to pull herself up, Devon felt breathless. She fell back into her pillows.  Her lungs seem to be uncooperative, refusing to pump enough air into her system. She tried to pull herself up again, but again was stopped by shortness of breath.  Again, her head fell back into her pillows. 

Devon’s usual normal breathing was now shallow, her muscles feel weak as if she has been running for the entire night.   She tried to move her legs, but then she remembered, she hasn’t moved them for months now.  And then she realized, the disease is finally catching up on her.

She felt fear. 

What will happen to me, Devon frantically thought. 
Will this be my last breath?
What if I didn’t wake up?

Devon shrunk further into her pillows.  Her fear overcoming her.  

Will I die alone, Devon thought, looking around the empty room. James’s face and her family’s faces flashed through her mind.

Not now, not today, Devon fought the thought of death.  Using all of her energy, overcoming her weakness, she placed her hands firmly beside her.  Her hands feel swollen, thickened, but she did not pay attention.  She pushed herself up. For Devon it seems like hours before her back was finally resting against the headboard. 

Pushing herself up, actually took only several minutes, but Devon was already gasping for air.  Devon wished that James would not walk into the room right now.  She does not want him to see her in a state like this. 

The room was cold enough, but beads of perspiration have formed on Devon’s forehead.  She leaned back against the headboard and rested her head on the wood. It would be more comfortable if she could pull a pillow under her head.  Devon tried to reach for a pillow, but she felt her fingers were swollen and tingling.  That was when she noticed the fingers in her left hand.  Three fingers, her pinky, ring finger, and middle finger, were turned in, as if it was trying to curl into her palm but froze. And her entire left hand was shaking.

Devon looked at her shaking hand, she tried to lift it to take a closer look but her arm muscles are working against her.  She can’t barely lift it at chest level.

“Hey you’re awake,” James greeted as he walked into the room.

Devon missed his footsteps. She was too preoccupied with what is happening to her body that she did not noticed James walking towards to the room.  She dropped her hand as if she was caught in a middle of a crime. 

James caught Devon guiltily dropping her hands on her lap. She was sitting on the bed, looking uncomfortable. 

“Are you okay,” James asked worriedly.

Devon nodded and smiled brightly.  “I am okay,” her voice was raspy.

James approached her.  He noticed perspiration on her forehead.  James was about to take her hand, when Devon shoved it under the sheets, pretending to pull the blankets.

“What’s for breakfast?” Devon asked.  James noticed her breathing was shallow. 

“Are you sure that you are okay?” James asked again.

Devon smiled. “I am. Just hungry.”

James smiled back at Devon.  He stood up and swooped down to scoop her into his arms.  He set her down on the wheelchair.  After Devon lost her feelings on her legs, they stopped sleeping in the second floor. The guest room on the first floor was more accessible. 

“Do you need to go to the bathroom?” James asked.

Devon nodded and James pushed her towards the bathroom, where he carried her down the toilet bowl. 

As Devon’s physical capabilities start to weaken, bathroom trips also required assistance.  Aling Linda comes at seven o’clock in the morning everyday.  She would take care of Devon while James goes to work.  Aling Linda gives Devon her daily bath and has to coax her daughter to pee on a special container since she could not carry her into the bathroom on her own.

Everyday, James insists on staying at home and caring for Devon but everyday Aling  Linda would refuse.  Their financial need is so great that they can’t afford James losing his job.  James’s paycheck covers nearly half of Devon’s medication, while the other half comes out of his savings which is slowly drying up.

After the bathroom, James wheeled Devon into the kitchen. Set on the kitchen table is a steaming plate of rice and some salted eggs with tomatoes with daing na bangus. It is one of Devon’s favourite breakfast.

“Eat up,” James motioned towards her plate.  “We don’t want people thinking that I am starving you.”

Devon smiled.  “People will think that you eat all of the food,” Devon joked, she noticed that her words still remain shaky but a little steadier.

James started to put rice on her plate, then some pieces of daing, making sure that the pieces are bite-size.  He then placed a mixture of eggs and tomatoes on Devon’s plate before he started putting food on his own plate. 

Devon stared at the plate and tried to lift her hand.

Come on, Devon willed her hand.

She managed to bring both of her hands up on the table.  When she tried to hold the fork, her turned in fingers on her left hand would not move. She tried to pick the spoon up with her right hand, but her fingers are now stiff and slowly turning in, just like her left hand.

Devon tried to pick up the spoon, but her fingers only pushed it away.  She tried again, this time she was able to pick the end of the spoon, but it slipped from her fingers, clanging to the plate.

“Are you okay?” James asked again.

Devon bowed her head. Her tears, uncontrollable, are now streaming down her eyes and cheeks.  The fear, which she managed to push away earlier, is now surfacing again.

“What’s wrong,” James pressed.

“I can’t move my hands and fingers,” she whispered. 

Brief silence.  James was struggling. “You just woke up, your muscles are not that warmed up yet.” He started massaging her hands and fingers, noticing how stiff they were. “C’mon, try again.”

Devon obediently lifted her hand again and tried to pick up the spoon, only managing to grasp the end of it.

“See,” James encouraged.

But Devon dropped it again on the plate, and her hand dropped on her lap.  Devon bowed her head further. This time she was really scared, scared of what would come next.

“C’mon, try again,” James coaxed.

Dutifully, Devon tried again.  She was now sweating profusely. With her stiff and deformed fingers she tried to pick up her spoon. Again, she got hold of the end of the spoon. She pushed it towards the rice. But when she tried to lift it up towards her mouth, she lost control and the spoon fell back on the plate. 

“Try again,” James insisted, this time his voice more firm, his mouth already on the straight line.

She tried again, afraid to disappoint her husband.  But the same thing happened, this time the spoon fell on the floor with bits of rice.

James stood up and got another spoon. “Try again,” frustrated, James placed the new spoon in front of Devon. He looked angry.

“Don’t you see?” Devon angrily rasped, her breathing haggard from the sobs and her struggle with air. “I can’t. I can’t!”

She bowed her head and her shoulder shook with her sobs. James fell down on his knees beside her, his anger and frustration are now gone but replaced with fear. He wrapped her with his embrace, hoping that it will take all her fears and worries away.  Hoping that it will also take his own fears away.


As much as he hated leaving her, James had to.  When Aling Linda arrived that day, James told her about Devon’s loss of her hands.  They hugged tightly together, hoping that this is just a nightmare and they could wake each other up from it.  Aling Linda composed herself before going in and facing her sad daughter.

Aling Linda was able to convince her to eat a few spoonfuls before Devon asked to be wheeled outside on the sunshine.  James desperately wanted to stay, but Devon shooed him away. 

“I will be okay,” Devon assured him.

James reluctantly pulled himself away from his house.  He was supposed to go to work but his driving has taken him elsewhere.  He found himself parked in front of his father’s intimidating corporate glass building and walking into his father’s formidable office.

Why am I here, he asked himself.  James did not understand what force has brought him here.  He stopped in his tracks.  He turned around to go back.

“James,” Mr. Rocafort called, surprised.

James turned at the sound of his father’s voice.

“What are you doing here?” Mr. Rocafort asked. “Aren’t you supposed to be at work?”

James did not respond. He shoved his hands into his pocket.

“Would like to come inside the office to talk,” Mr. Rocafort offered.

James nodded and followed his father into his office.  Mr. Rocafort closed the door behind James.  James wandered into his father’s glass window and looked at the amazing view.  Mr. Rocafort patiently waited for his son to talk. 

Several minutes passed but neither said anything.

“Devon’s already on a wheelchair. She can’t walk anymore,” James spoke without looking at his father.

“I heard,” Mr. Rocafort answered.  James wondered how he heard the news, but his father has ways to know.

“This morning, she can’t even lift her spoon,”  James continued.  “She lost her ability to move her hands.”

Mr. Rocafort remained silent.

“She cried so hard, and I pushed her to do it and she cried more. She looked so scared,” James said, his voice slightly quivering. “And I was goddamn angry.”

Why are you angry, Mr. Rocafort wanted to ask but he remained silent.

“I wasn’t angry at her,”  James continued as if reading his father’s mind. “I was angry at this fucking disease.  Why does it have to happen to us?”

James shifted his weight on his feet.

“And I wanted to cry with her but I can’t. I need to be strong for her,” James confessed.

Another long silence. 

“I don’t know what to do,” James spoke and then the barriers broke. He bowed his head and cried.

“I am so sorry, son.” He whispered, trying to comfort James.

“This is bullshit. I am seeing her slowly dying and I can’t do anything about it,” James cried. 

Mr. Rocafort looked at James, in his eyes he saw a four-year old James crying in their house’s foyer when he took and threw his teddy bear away.

No son of mine will play with some teddy bear, he remembered shouting at little James who was crying and hiccupping on the loss of his favourite toy.

He looked at his son right now and realized that in the most painful way, it is happening again.  What he loved most is being taken away.  Mr. Rocafort sadly admitted to himself, that he tried once to take it away from James but did not succeed. But this is disease is succeeding.

Mr. Rocafort walked toward James and pulled him into his chest, trying to give something he has never given his son in years. A hug and his love.


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