Apr 19, 2013

When the Fireworks Begin (Chapter XXIII)

April 2012...

Devon was basking under the early morning sun.  She was lying down on a specialized chair for people who have similar condition as hers. It was a black electronic cushioned chair, breathable enough so that bed sores would not frequently form in her back.

The day she lost muscle strength in her hands and fingers, her arms followed suit in a few weeks. It was gradual.  It started as stiffness and the feeling of swelling, eventually, she was unable to move them anymore. She was devastated of course. But she could not dare show it at her family and friends. Especially with James.  Whenever she would lose something, James looks like he could kill someone.  He was angry and sad at the same time.  And her crying about her situation, will not help him at all. 

She loved mornings like these. The early morning sun was hot enough for her to feel, and yet the wind is cooling the patch of heat.  They say that patients who suffer from ALS just like her does not lose the ability to think, feel and hear, even though their physical abilities disappear one by one.  This is one of the cruellest thing about the disease.  Patients feel trapped in their unmoving bodies while their mind wandered free.  And she finds that true. 

But somehow, these mornings had helped her realize that there are still things worth thanking for.  She could still swallow, although it is painful sometimes.  She could still talk, though her voice breaks sometimes. Without a doubt she could still feel and savor human touch, though she could not touch them back.  She’s still alive, and while she’s breathing there is still always hope.  Devon closed her eyes and drank all the sunshine’s warmth.

Several months have passed since Devon last used her fingers.  It was the day when she lost something but her husband has gained something back.  When James got home from work the day she lost her fingers, he looked like he was several years older and yet his steps appeared to be lighter. 

My dad and I talked today, James shared. 

What did you talk about, Devon raised her hand slowly hoping to hold his hand. But instead her hand landed forcefully on the top of his.  It was not dramatic as she hoped it will be. Fail.

James looked at her hand.  He took it, gently massaged it and brought to his lips.

Let’s just say that we made a truce, James said with a soft smile.

Devon smiled back. That’s good news, she said.

Very good news, James answered.  It made me so light here, James brought Devon’s hand on his chest.

I finally got to see you and your father reconcile before I die, Devon said.

James did not reply, instead held her hand and cradled it against his cheek.

It feels so good to know, that when I die you will have your complete family behind you, Devon continued.

Let’s not talk about death, James asked.  Let’s talk about the good times instead. 

So that night, they talked about happy times. They reminisced the funniest moments of their lives.  Devon recounted the day she fell down the stairs because she thought she saw the monster “unding” crawling out of  the bathroom upstairs. 

James then told the story of the day he and his brother Malcolm got  circumcised under the hands of the prettiest doctor they have ever seen.  Devon could not help herself laughing from how the two boys tried their best to calm down their puberty testosterone surge.

They talked about everything until Devon fell asleep with a bright smile on her face. 

Remembering that moment, Devon could not help but smile and giggle a bit.

“What are you doing? Sunbathing?” Shey interrupted her thoughts.

Devon opened her eyes. “Hey, you’re blocking my sun,” Devon complained, her words slowly enunciated and a little strained. 

Shey smiled.  “Trust me honey, you don’t want to get baked, you’re tan enough.”

“Spending too much time indoors is making me too pale,” Devon complained.  “I feel like I am one of those vampires from the Cullen family. Too white, they’re the same color as their teeth.”

“Dream on,” Shey countered.  One thing that Devon did not lose along with her physical abilities was her happy nature. She could still come up with a witty remark, a joke, even in the direst situation.

“You’re here early,” Devon remarked.

Everyday, Aling Linda will arrive at around seven o’clock in the morning, giving James enough to time to prepare and go to work.  Everyday, except of course when it is raining, Devon is wheeled outside in the terrace so she would be able to enjoy the morning sun and fresh air.

By nine in the morning, Mang Tony will drop by to help Aling Linda in giving Devon a bath.  It was as if she was a baby again.  Devon was frustrated at first, bath session would lead to highly-emotional Devon. She would cry and fret.  But things changed when she realized that she should be thankful that somebody is there to give her a bath.  She decided to focus her energies on positive things.

After giving Devon a bath, Mang Tony would then bade goodbye and go back to tending his vegetable stall.  Devon’s sisters would come by noon to relieve Aling Linda from taking care of her.  They would then given her massages until she fall asleep.  By early afternoon, Shey and Ivan will bring dinner and they will stay until James comes home.  By the time James got back home, the party is already on full swing.  Aling Linda and Mang Tony will bring additional food. All of them would eat together at Devon’s bedside. Shey and Ivan are always the last to leave.  They would take charge of washing the dishes, while James rest for a bit.

Aside from Devon’s family, Ivan and Shey, Malcolm, Jacqueline and Mrs. Rocafort are always in their apartment during weekends.  They would bring endless bags of food, medicines and other medical supplies.  Devon even joked that they could start a business of reselling the items that they have brought. Mr. Rocafort, even managed to visit Devon twice. Dr. Alvarez would drop by three times a week to check on her condition.

Their house has also became a resident entertainment area. Devon’s elementary, high school and college friends would often drop by, bringing food and fruit, and even handing Aling Linda or James white envelopes. Some of Devon’s friends would just appear on the doorway, brining the latest gossip, which are often reprimanded by Aling Linda.  Sometimes, Devon’s cousins will drop by with a guitar and encourage her to sing with them.  Moments like these make Devon realize how lucky she was.

“Well, I have no work today. My boss is on vacation, so I am taking one, too,” Shey reasoned out, snapping Devon out of her reverie. “So, I decided to spend the whole day with you.”

“Oh my God,” Devon gasped. “Have mercy on me.  I wish I am already dead.”

Shey gave her a sharp look. “Ha. Ha . Ha. Very funny.”

“Really,” Devon continued.  “All I want is some peace and quiet and you will be here blabbering about things that I don’t want to hear.”

“Like what,” Shey challenged.

“Like, how your neighbour, Manang Henya, has big panties which can fit both of us,” Devon answered.

“Correction,” Shey reacted, trying to look stern. “Manang Henya’s panties can fit you, me and Ivan all at the same time. It was the other neighbour who has panties which can fit into two people.”

Devon laughed.

The day passed by quickly with Shey in the house.  She was so loud and funny, that Aling Linda almost forgot to wash the soap out of Devon’s legs.

“You are too distracting!” Devon snapped, trying to look angry, but she can’t pull a straight face when talking to Shey.

Shey just looked at her and stuck out her tongue, before smiling.  Mang Tony then carried the newly-washed and dressed Devon on her black-cushioned chair.  Shey started to brush her hair.  

By lunch time, Devon can barely hear herself between her sisters’ and Shey incessant talking.  She smiled dearly, their voices and loud laughter were music to her ears.


Everybody was busy eating roasted chicken and chopsuey brought by Ivan for dinner.  Aling Linda’s newly cooked rice smelled divine. The house was slightly subdued since everyone’s mouths seem to be full.  James was eating slowly beside Devon.  His hand occasionally rubbing Devon’s hands. 

He would stop for a moment and will slowly bring a spoon towards Devon’s mouth to feed her.  Dr. Alvarez and a nutritionist were consulted about Devon’s special diet.  Since there is a risk of choking, a special diet has been formulated to fit her needs and provide her nutrition requirements. James would occasionally dab a soft towel in the corner of Devon’s mouth, before he resume on his own eating.

After dinner, Devon’s sisters wheeled her into the bedroom to sleep.

“I have this idea which has been playing thru my mind for several days already,” Shey began, drying her hands on the dishcloth after washing the dishes.

Ivan looked at her girlfriend, looking clueless. James looked at Ivan, hoping to get a clue.

“Don’t look at me,” Ivan shrugged.

Everybody looked at Shey waiting for her to continue.

“An officemate participated in a run against breast cancer,”  Shey started.  “Now, it was a run not backed by some company, it was sponsored by a family. Apparently, one of the daughters has breast cancer and needs to undergo surgery, and cancer treatments, but they don’t have enough funds. So the run was meant to raise funds and at the same time, raise awareness against breast cancer.”

“So, you’re suggesting that...” Ivan speculated, after a brief moment of silence.

“That we have a fund-raising run for Devon,” Shey suggested.

“But we’re doing well with the expenses,” James tried to reason out. 

The truth was that James’ saving account could only support two months of medication, but he choose to keep it to himself.  After James and his father’s reconciliation, he still refused to accept his financial help.  He does not want his father to think that he approached him because of his money.  Mrs. Rocafort tried to give his son money, but he also refused, which is why she chose to bring supplies weekly instead. Friends are also giving small amounts which are enough to cover their daily expenses.

“Don’t pretend, James,” Aling Linda gently.  “Your Tatay and I noticed that you stopped taking the car to work a few weeks ago so you will save on gas.”

“I like taking the jeep,” James protested.

“We also saw your worried look when you were checking your passbook account,” Aling Linda continued. “Your mother also mentioned to me that you have been refusing any kind of financial support from her and from your father.”

“We know, how expensive her medicines are, therapy sessions, medical supplies,” Mang Tony joined in.

“But...,” James tried to argue.

“Besides, it is not only about the money,” Shey reasoned out.  “Have you heard of anybody here in Cebu or in Visayas who have the same condition as Devon? No. Because nobody cares to educate us about it.”

Mang Tony nodded. “It seems like for a good cause.”

“I could coordinate with some athlete friends about the possible route,” Ivan suggested, hoping to get a positive response from James.

“I could also ask for my friends’ help in organizing the event,” Shey added. “I’m an event organizer, for crying out loud.”

Everybody looked at James, waiting for her approval.

“Would there be enough runners?” James slowly asked. Everybody smiled.

June 2012...

“Where are we going,” Devon asked for the third time.

“You’ll see,” James answered also for the third time.

It’s Saturday and it is only six o’clock in the morning, but Devon is already being wheeled out of the house.  She has always been an early-riser and today was not different. She was already awake by five in the morning, lying down on her bed. James was already awake at that time.  He went into the room and gently kissed her forehead and whispered about going out early for their weekend walk.

But instead of just going around the street corner and at the nearby park, James wheeled her towards the specialized van that James’ father bought for them. They usually used it to bring Devon to the hospital for routine check-ups and medical tests.  On special occasions, such as her birthday and James’ birthday, they used the van to visit their most favourite spot, their hill.

She was even more surprised when she saw Aling Linda and Mang Tony already inside the van.  Devon’s curiosity reached its peak when James opened the van and she realized that they were in Asiatown IT Park.

“We’re here,” James finally announced.

What Devon saw was indescribable. In front of her, she saw hundreds of faces, friends, classmates, colleagues, relatives, and other people she doesn’t know assembled in front of makeshift stage.  On the stage, a huge tarpaulin hung with the “Run for Devon, Run Against ALS.” Almost everyone were wearing white and numbers were pinned to their shirts. 

A sound of a buzzer vibrated in the morning air, signalling the start of the run. 

“We’re just in time,”  James smiled, squeezing Devon’s shoulders a little.   James wheeled her under a tree where she got to see everyone running. 

She spotted some professors from her department.  She saw several of James’ officemates, familiar faces of employees working for the Rocafort Industries, neighbours and their children, her students, her elementary school teacher.  Everybody seems to be here.

James pulled a monoblock chair out of nowhere and sat beside Devon.

“Shey and Ivan planned the whole thing,” James shared.  “They want it to be a surprise.”

“How many people are here?” Aling Linda asked, she also looked surprise.  She knew about the event but was quite overwhelmed with the turnout.

“Well,” James thought.  “Last night more than three hundred registered.  Shey texted me earlier that there are still people registering this morning.  So, I think we raised almost or probably more than a million pesos today for your treatment.”

Devon’s jaw dropped when James mentioned the amount.  James smiled at the look at Devon’s face. 

“Yes, baby.  All of these people came here for you,”  James assured her.

Devon looked at the stream of white shirted people running around the IT Park, laughing, panting, sweating, talking, or just plain running.  These people came here today to help her.

James explained that runners could choose running the 3 kilometers or the 5 kilometers, each have their own registration fee.  The planning and preparation took almost two months but everything was worth it.

She doesn’t know how long she stayed under the shade of the tree.  Somehow her family were able to plan all of these without her noticing.  She noticed that some of the runners are already coming back. They were given bottled water, and were offered sandwiches by a team she recognized as Mrs. Rocafort and her amigas.  They were also handing out brochures about ALS.

By a little bit after eight o’clock everybody seems to have returned where they started.  This time Shey was again on the top of the stage, stating that all runners are qualified for the raffle draw.  She began to drew several names from a box, Ivan and her sisters were giving T-shirts, caps, and  customized water bottles.  The prizes were small, but it being a fundraising, the awards meant a lot to the participants.

By this time, everybody has already known that Devon was under the tree watching the event.  A lot of people has already dropped by to show their support and hug Devon. 

Shey was already wrapping up the program when Devon told James that she wants to speak.

“Are you sure,” James asked.

“I need to thank them,” Devon said. 

James ran towards the stage and signalled Shey.  Shey approached him and James whispered to her ear. Shey looked towards the tree, sceptically before she held unto the mike again.

“It seems like, the inspiration behind this run would like to say something,” Shey announced. “Let us all cheer for Devon!”

It took a while before Devon’s chair was wheeled towards the front of the stage. Since her chair was heavy, they were unable to lift it and she settled on front of the stage, instead.

James held the microphone in front of her. Devon looked around at the crowd, their faces glistening from the sweat, their bottled waters almost empty.  They look tired, and happy.

“You have to excuse me,” Devon started.  “I am a little bit out of breath. I was running with you, but you were all too busy to notice me.”

The crown laughed.  Her words were a little spaced out, her voice breaking a little and raspy. 

“I was really surprised about this event. I could not find enough words on how to describe what I am feeling right now,” Devon said, pausing a little bit to rest. 

“When I was diagnosed with Amyotrophic Lateral Sclerosis,” Devon paused again, this time a little longer. “Again sorry, I need to rest a bit. That was a tongue twister.”

The crowd laughed again, but this time it was a little shaky.

“When I was diagnosed with this disease, I thought that I would be able to make through everything since I have been around with the most positive people in the world, my husband, my parents, my sisters, my dearest friends,” Devon continued. “But today, I know that I will get through everything because I am surrounded by the most awesome and loving people, that is all of you.”

“But this is the harsh reality. Last year, I was just like all of you. Healthy and doing my early morning jogging here in IT park. Now, I am sitting on this chair, unable to walk, unable to move my arms, and even unable to scratch my own nose. My mother is giving me my daily baths now. I spend all my hours on this chair, on my bed at home, and on a hospital bed,” Devon stated. 

The crowd has become extremely quiet.

“And this is all because of this disease that nobody knows much about,” Devon continued again.  “This event meant a lot to me and of course, to you. Cause since all of you got to know what kind of disease this is. This is not just an American baseball player’s disease, it has become one of the leading neurological health problems and nobody in the country was even familiar with it. But now you know. And that can make a difference.”

“Right now, I can still speak and eat, but there will come a time when these will also go away,” Devon started.  “Every week, I may lose something but everyday I gain something. I gained wisdom, confidence, strength, and of course, hope.  And I gained it all because of you.”

“I may not know all of you, and perhaps not all of you may know me personally.  But please keep in mind, that today, you have all become part of my life. Today you have given me strength.  Thank you. My family and my husband will always treasure the gift of life and positivity you have given me,” Devon ended.

In between sobs, tears, and smiles, there was a deafening applause.  This was a day she will never forget.


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