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‘THE LAST FLICKER OF HOPE’ (Remembering John-John and Oggie’s battle with Muscular Dystrophy), by Malu E.Gacuma, August 16, 2017 (4:00 am)

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Carrying him was never a burden. Not to me nor my parents or older sisters. It was our way of life, as a family.

He was born normal on November 29,1969. It was thru a Caesarian operation due to his breech position in our mother’s womb. Being the youngest among the girls and three years older than him,  I became closest to John-john. We were ‘best of friends’, he being the youngest among us six children, namely Cecile , Grace, Oscar Jr. (Oggie), Maria Anita (or Nenette, who died at the age of 2 due to a freak fall accident) and the two of us.

He was christened ‘Jonathan‘, which Mommy named him after that American ‘fighting General’, Jonathan Wainwright, known as the ‘Hero of Bataan”, during World War II.

Then she nicknamed him ‘John-john‘ after the only son of the late U.S. President John F. Kennedy, whom our mother deeply admired.

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John-john took after our father’s dominant traits: fun-loving, talkative, bubbly and had that infectious zest for life1

Unfortunately, life did not respond to him in the same way. At age 6, he started manifesting Gowers’ Sign, a hallmark of those stricken with the genetically-transmitted muscle condition called Duchenne-Muscular Dystrophy (DMD). Simply put, while the patient’s bone structure continues to grow normally, the muscles slowly regress.In due time, this makes a DMD patient look like he is ‘ shrinking‘, from his neck down to his lower limbs.

Gowers’ Sign means the patient had to use his hands and arms ‘to walk around’ but in a squatting position, akin to ‘duck-walking’.

It was actually Oggie (who was born on January 20, 1963) who was first diagnosed by the University of Santo Tomas (UST) Hospital in Manila, in about 1970. According to my late mother, the UST doctor told her and Dad that “any male offspring to be born after Oggie would , most likely, suffer from the same condition.” John john then was barely 1 year old . The doctor also said DMD strikes “about 5 to 10 generations away”. For reasons still unknown to us until now, our family was caught among those generations.

 

 

 

 

My parents remained obstinate and pinned their hope on Divine intervention. Dad was a Dental Surgeon on private practice, while Mommy remained a housewife despite graduating from Dentistry. They knew human anatomy and about genetics. But my brothers’ medical condition was beyond hope. It is incurable.

 

 

 

While John-john was aged below 6 years old, my parents were holding on to their faith that the UST doctor’s prediction would be wrong. But one morning, in 1975, Mommy was in a window watching John-john playing at the front yard of our grandfather’s house in Fabrica. She suddenly saw him attempt to go up a nearby flight of stairs by propping his right leg with his right palm resting on his knee, as he pulled up his left leg to the next stair step.

This sight made my mother break down in tears. She  immediately told my father, who was in his dental laboratory at one end of the house. They embraced each other and cried, their  hope now completely extinguished. The sight confirmed that both of theirs sons have DMD. My father told me later on, at that moment, he felt so abandoned and looked up and cried out loud “Why,oh God? Why my sons?

 

 

 

 

 

 

From then on, my father turned to heavy drinking, and eventually became an acute alcoholic until his death in 2009. My mother became more reclusive, indulging her time only to home-making, abandoning any social life for good.

Never to give up easily, on that same year, my parents enrolled John-john as a Grade 1 student at the public school, Gil Lopez Elementary School , where I was in Grade 4. My parents hired a tricycle to take us to and from school. If the driver missed his task, I would walk home with John-john on my back. We would play along the way, he pretended to be a cowboy and I was his horse!

His limping became the butt of jokes and jeers from his schoolmates, calling him “Jonathan Pi-ang!” (‘Jonathan the Limp!”), but he shrugged this off and even befriended most of his persecutors, thanks to his outgoing trait from Dad!

Unlike Oggie who finished only Grade 1, John-john finished both Grade 1 and Grade 2 with ‘2nd Honors’. His happiest moment was being able to join the Cub Scouts. However, he was not allowed by his teachers to join the lengthy school parade down to barangay  Paraiso proper, considering the distance. Not to be deterred, he asked his buddies, including his best friend named Alparito, to make him ride on their backs  alternately, thus he was able to join without Dad and Mom knowing it! Smart boy he was!

 

 

 

During his  3rd and last Grade, his absences became more frequent due to his difficulty in walking. He had to be carried no longer to the school gate but down to his school desk. Still, he was awarded as ‘The Most Obedient’ by his adviser. When he frequently fell to the school grounds as his legs weakened every day , my parents finally decided : it was time for him to stay at home for good, just like Oggie.

My parents, specifically Mommy, took effort in tutoring my brothers. Reading is a family habit, thus being out-of-school never became a hindrance to the intellectual growth of my brothers. Both had ‘photographic memory’, and can quote details from any book or magazines they read in toto. They both loved to draw, using pen or pencil and usually would make ‘sound effects’ as they did,which we found amusing! Both often drew World War II battle scenes , between American and German soldiers. Or they would shift to cowboys versus Indians. As if it was symbolic of the battle they had to deal with in their daily lives. Some of their drawings were later on included by known artist and fellow Fabricanian, Nunelucio Alvarado, in one of his previous art exhibits. It was Nune’s personal tribute to the struggles of my brothers.

At home, Daddy designed two special wooden chairs for Oggie, who was no longer capable of walking or squatting since he was about 12 years old. One chair was for his daily use, the other was for his  call of nature, since he could no longer sit on a regular toilet bowl. They also had their own urinal to avoid their frequent visit to the john. I was tasked to empty it at every needed time, to my chagrin!

John-john at that time was still ‘duck-walking’. Since we were trained never to make them feel less-normal or unproductive, they also had their shares of household tasks  just like us, their sisters.

Oggie was tasked to shred vegetable leaves whenever Mommy cooked. He would also clean uncooked rice. He had a radio and chose what music programs to listen to, as the family’s ‘Disc Jockey’.

John-john was assigned to sweep and wipe the floor. He had his own soft broom, with the handle cut short for a more convenient grip. He would clean and fix his own toys and wipe the table after each meal.

I took turns with our older sisters,Cecile and Grace – on a ’round-robin’ schedule – in giving our brothers sponge bath every night. I was tasked to wash Oggie’s face and brush his teeth every morning,too. It was a must to use warm water when we gave them a bath also. This we did by using a slat bench where one of them had to lie down with face up. His head would protrude from one of the bench’s end, and rested on my knee so I could shampoo him. The same way with how my sisters did it. We had to make it a quick bath, not more than 10 minutes. and this is only once a week!

 

 

 

It was imperative for us not to expose both of them to anything that may cause them colds  or have a runny nose or cough. Pneumonia is the most dreaded thing for DMD patients.

Dad explained to us that, normally, there are three mechanisms to cough out phlegm. First, air is inhaled to expand the lungs. Second, the lungs squeeze the phlegm to ready it for expulsion through cough. Third, the expulsion or cough itself. Lungs are also muscles, as well as the tongue. Due to my brothers’ muscle regression, they are capable only of the first mechanism aforementioned.

But despite all our family’s  efforts, pneumonia still struck Oggie. Its complications led to  his cardiac arrest. He passed away at the age of 20 on February 9,1983 at the now defunct Foundation Hospital in Sagay City. As my older sister Grace witnessed, at past 9 pm,  she said Oggie died in Daddy’s arms. Before he breathed his last, Daddy, who was in tears,  called out to him repeatedly,“Noy, can you still hear me? Follow the light! Follow the light, Noy!” Oggie nodded twice,then his blank stare followed. His remains were interred at the family lot , where Nenette was buried also, at the Tinago Cemetery in our hometown.

 

 

 

His death left a deep void in our hearts. Losing Oggie made each of us more determined to do everything to make John-john live longer. This seemed to be an offshoot of the two brothers’ usual battle of wits when Oggie was still alive.

Since they both dreamed of becoming Army Generals, John-john often teased Oggie that ‘When I’ll grow up,I’ll be better than you, in the battlefield!” To this, Oggie would pretend scoffing and answered back,“No matter what you’ll do, you will have no choice but to accept my inheritance!” This would make us laugh, because ‘ inheritance‘  actually means Oggie’s special wooden chairs, radio, urinal and wooden bed! It was amazing how they can be armed with humor in their own battlefield!

When he reached 13 years old,  John–john was already on a wheelchair. Yes, he took over Oggie’s chairs and all, as they had foreseen. At this age, John-john also became more like Oggie: contemplative, most often quiet, at times melancholic and very sentimental. But he never lost his love for life!He even trained one of our pet dogs to howl each time he would trumpet the first few notes of a popular Tagalog love song titled ‘Dahil Sa Iyo‘, a feat enjoyed by guests,patients and friends alike!

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13-year-old John-john,with our pet dog Jimbo, at the balcony,1982.

We were not spared of the discrimination and taunts by those who are ignorant about DMD. Most believe it is contagious, judging by how my brother looked physiologically. Sad to say, even some relatives refuse to enter our premises because of him. One cousin even covered her nose whenever she passed by our door and did not allow her children to enter our end. Their ignorance led them blind, to the point of hypocrisy!

But my parents trained us to be who we are, and let John-john face them and look at them straight in the eye. Since I was still a Catholic (the family’s religion), whenever a church procession in honor of the mother of Jesus Christ or any saint was held, Mommy and I would join, or with my sisters (whenever they were on vacation) and we would bring John-john along in his wheelchair. When selected patients or Dad’s friends drop by the house, we would let him entertain them,too.

 

 

 

My parents also made sure he would always believe there was a Santa Claus. At least , it gave him something delightful to look forward to every year!  At 14, he believed that Santa Claus took a bite of the peanut butter sandwich and sipped from the glass of milk  that he asked me to prepare. We placed these on the window sill. He even told us he thought he heard something’ whoosh by’ above the house past midnight!  Dad would  feign surprise and assured him, “It must be Santa and his reindeers, indeed!” That was how naive my brother was! So innocent and pure was his mind!

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One of John-john’s last imprecise drawings.His last letter to Santa Claus.

He also had a penchant for calling us names and no one was spared!  A kind of loving gesture, actually! He never called me ‘Manang Malu’. Instead, he called me ‘Tiw’, from the local word ‘ mantiw’, which referred to an entity that is so skinny it can hide behind a beanpole, because I was exactly as thin!

When in  a good mood, he would often sing. Perhaps, croon would be the best word. He sang  from his heart, that voice of a man, and no longer a boy. I remember he loved crooning  Oggie’s favorite song ,’My Way’, and ‘Ol Man River’  both popularized by Frank Sinatra.

He loved jumpy, disco songs like  the hit songs ‘My Sharona’ by The Knack or simply happy tunes like Barry Manilow’s ‘Daybreak‘ or his favorite titled ‘Harmony‘ by Ray Coniff and The  Singers. Once I see him  tapping his fingers, wiggling his shoulders, I knew he wanted to dance. It was our unspoken language already. So , I would immediately carry him and we would dance to whatever tune that caught his attention! He was so happy, telling me  whether to turn left or right or turn around!  I would become his feet!

It was at that age when he stayed on his bed most hours of the day, since sitting too long hurt his back. His spine was already curved like a  crude letter ‘ S’,  his fingers half-curled to the center of his palms. He had to hold his pen by clipping between his right thumb and index finger , instead of the usual ring finger.  His drawings, which normally would be with precision such as detailed handgun or rifle, became rough and imprecise.

This would often cause him mood swings. Sometimes, while in the middle of his drawing session, he would slam the pen on the table , or  throw it on the floor. All these tantrums, he did without any word. He would ask me to carry him to his bed, where he would stay quietly for hours.When his mood lightened, he started drawing other images like cartoon characters, short letterings or anything simple. The  lengthy WWII scenario or cowboys versus Indians started fading away.

Until the day we feared most came, when he finally had to stop his passion for drawing. It was the same day he was no longer capable even to hold his own spoon and fork. He was 17.

He turned to either his radio listening to dramas and music programs or his Aiwa cassette recorder to listen to his cassette tapes. His preference has changed to ballads,instrumentals and classical music. His daily life became a routine day in and day out: waking up, being washed up,eating his meals, sitting  on his special chair watching out the window,listening to his radio or recorder, responding to the calls of nature, then back to his bed.

Since Cecile was based in Manila  and Grace was married, I was left alone to tend to him. We always spared Mommy  the task of carrying him due to his weight and the bulk of housework she did, much more  with the laundry. Since I was out-of-college that time, I spent the afternoons gardening, and would bring him along outside of the garden. He would watch the birds and butterflies, make images out of clouds. He loved nature and all its wonders, but looked forward to watching the sunset!

He also loved the full moon-lit evenings! Perhaps because he was already becoming an adult by heart, he was turning out to be a very romantic gentleman! While staring at the moon, he would ask me to play selected instrumental music to go by his mood or imagination. Usually it was the soundtrack from the movie “Somewhere In Time”, which became our household’s anthem!

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1983, John-john in a photo I took of him one morning ,at the front yard.

It was at this age also that he quietly fell in love with a very pretty and bubbly 16-year old family friend named Angelique. It was summer when they met. She would often drop by the house to borrow magazines or Tagalog comics, and chat with John-john. She became his first love, an experience he outdid Oggie who only idolized one woman in his earthly life: a Hollywood actress named Jaclyn Smith of the hit TV show, ‘Charlie’s Angels’.

It was having a deep affection for Angelique that we noticed a change in John-john. He started hoping to walk again. No, not hoping. He BELIEVED he would walk again, as he quipped, “..on that day appointed by God.”

In 1988, when Cecile and I started a media career with a non-rated Cadiz City-based radio station, DYAG, I had a music and dedication program titled ‘Disco & Greetings On-the-Air’ every 4-6pm while Cecile managed the Sales Department. It was a household crime not to play John-john’s requested love song titled ‘Always‘ by the Atlantic Starr (a No.1 song then) which he dedicated to Angelique who, along with her family, never discouraged John-john’s gestures of affection. Our family felt more endeared to them because they knew that she struck an inspiration in his heart. It was something we cannot give him and she did.That special inspiration. It was the will for him to live longer.

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Angelique’s token of friendship for John-john

One work day, on September of 1988, I suddenly felt a strong prompting to go home to Fabrica (about 13 kilometers to the north of Cadiz City). There was a typhoon, but I traversed through the muddy prawn farms under the rain, going to the main highway to get a ride. Along the way, I believed I heard John-john’s voice calling me twice “Manang Malu! Manang Malu!” with urgency.

Arriving home, there was no one. Lola Elisa (my paternal grandmother, who lived upstairs) was in a panic and told me that John-john was rushed to Foundation Hospital in Sagay City due to hard of breathing. I was so frantic,calling out to God to have mercy on my brother ! It might have been a miracle, because my brother survived his first bout with the onset of pneumonia despite being given by the Catholic priest his first Extreme Unction, a  Catholic sacrament for the dying. He returned home after two weeks.

At this juncture, my brother was like skin-and bones. The skin of his legs were darker, and with dark-colored scabs now surfacing. It was watery, so we had to wrap his legs with bandage all the time to keep him dry. The doctors said “his body was rejecting fluids”. All we could do was to manage it since it is beyond any medication.

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John-john, in Manila,1991

On August 1989, due to a very low pay and irregular release of salary, I decided to resign from DYAG and find a better-paying job in Bacolod City to help my father with his income. That time, Dad no longer worked as Foundation Hospital’s dentist, but had a private clinic but it was not enough. So, I worked harder than the rest, even slept for 8 months on top of DYWB’s Research table to save from any rental fee outside. My whole income went to Mommy for John-john’s needs. He was very,very happy when I bought him a sound system during my first 13th month pay! At least he could stop using Mommy’s de-mano sewing machine’s cover as his “boom box”  (as he called it when he used  to amplify his cassette recorder).

Despite an aunt’s offer to send me to college, I declined and pursued a broadcasting career with DYWB Bombo Radyo Bacolod as its Prime Anchorwoman/ Newscaster and Researcher. The pay was bigger. I was able to buy groceries and goodies for my brother! When my afternoon advice program titled ‘Kahapon Lamang’ rated No.1 (Over-all in the whole of Western Visayas) in a year’s time, my salary was doubled. I was so happy and broke the news to my family, I knew it can help my brother a lot. He had always been my inspiration, after all! Even my regular listeners knew about him and greeted him!

There was a time when Mommy got sick, I had to take the Ceres bus every single night,on its 12 midnight trip (which cost only 5 pesos!) to reach Fabrica in 2 hours, only to give John-John sponge bath and bandaged his legs. Then rushed back to Bacolod thru the 4am Ceres bus to make it to my 6 am newscast! This was a routine for about 2 weeks.

But one night, I came home and Mommy met me with a good news! All of John-john’s scabs were gone! In a finger’s snap… they’re gone! I checked on his legs, and it was true! I asked him how it happened. He said the night before just after I had left,the lights were off except for the overnight altar lamp near his bed. His legs felt prickly sensation, painful and itchy at the same time. Then he heard giggling under his bed. He called Mommy , in the next room but she was fast asleep.

The ‘creatures‘, John -john said were small and very cruel, making him beg in tears for them to stop pricking his legs. Then as in a dream, he told me in the dialect that he saw “a lady enter,and she seemed to be glowing, I can see her even if it was in semi-darkness. She had a small basin of warm water. She sprinkled this on those entities which disappeared. And she washed my legs gently. She wore something white.” My brother never lied. Whatever occurred, even the doctors could not explain how the scabs fell off in one sweep and his legs completely dried up overnight.What mattered was: he was healed. Thanks to that apparition!

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Nov.29,1992 – John-john  and me with Cecile and Grace (foreground, in white shirt),our nephews Jake and Louie ,family friend Joanne Posa , our cousins and some nurses.

In September 1990, due to the success of my rated programs, I was promoted by Bombo Radyo Phils. (BRP) CEO, Mr. Rogelio Florete, to the Malacanang Press Corps beat, to be based at BRP’s Makati News Bureau. Pooling in with Dad’s funds, I used a loan, my media benefit ( 50% discount on boat fares) and contributions from relatives and friends and left for Manila with John-john, Mom and Dad and Cecile. In Manila, my family stayed at my maternal grandparents’ house in Iriga Street, Sta. Mesa Heights, Quezon City. while I stayed in Makati at our staff house. Every free time and weekend, I went home to take care of my brother. Again, that December, I surprised him with a TV set with Betamax ( the forerunner of today’s DVD). He was teary-eyed and thanked me for giving him ‘a companion’. I learned that he loved watching the film titled “Fern Gully“. We knew his time was near.

It happened on May 1991. He was already being spoon-fed,and stayed on his bed most of his waking hours. Even sitting became painful for him. Then again the chest pains returned. He was rushed to San Juan de Dios Hospital in Roxas Boulevard, which was run by the Daughters of Charity , the same order that managed Foundation Hospital. My brother stayed in the said hospital for the next 8 months in a room at its second floor. He became its popular patient then. His doctor was Dr. Ang, a good friend of Cecile. He never charged any professional fee.

During these months, my brother received Extreme Unction for more than 6 more times from the Hospital Chaplain. But he always overcome death. His bed was half-raised so he can be half-seated, to avoid any possibility of choking. Pneumonia and its complications persisted. He was pale as a paper and thin as a skeleton. But his mind was always alert!

One afternoon, I was talking about him to some of my Malacanang Press Corps colleagues, and Miss Vangie Baga (now Mrs. Reyes) of the Philippine Daily Inquirer took interest on DMD and my brother’s courage against it. After getting a blessing from her Editor, she interviewed my brother on November 1992, just before his 23rd birthday.

John-john just survived another ‘Extreme Unction’ incident, As he described it to me, he “floated out of his body from his waist up, in a very gentle swaying manner” but as he told me, his mind resisted and this “seemed to put a weight that prevented me from floating”. But he wondered why, throughout each said ordeal, nobody can hear him calling out and saw him sleeping instead!

Vangie interviewed John-john on November 4 and her article was published in full Lifestyle page on his 23rd birthday,on Sunday, November 29. Vangie said it was their Editor’s idea to give him more inspiration that there are those who care for him and are inspired by him.He told me that he prayed so hard to endure all the pains, but for God to allow him to spend his last birthday with us, his family. He knew he could never reach the age of 24.

 

 

 

We celebrated his 23rd birthday with relatives, close family friends and with the medical staff, including the doctors. The room overflowed with well-wishers, we had to let him blow his birthday candles at the hallway.

That night, he couldn’t sleep and he confided to me, that he prayed profusely to Heavenly Father, to consider it as his last earthly prayer: “Please allow me to spend your Son’s birthday with my family. “ He meant December 25, Christmas Day, when our Savior Jesus Christ was born.

 

 

 

When December came, it was our turn as his family to have a glint of hope! The doctors were telling us all that John-john was showing signs of progress! Even his lungs were healing. But it was his heart that they kept an eye on. John-john himself always asked the window drapes to be spread wide open, so he could see the sun rise. Every day when he woke up and watched the sun rose, he seemed to hold on to his hope to still walk one day, on God’s appointed time.

He was not allowed to drink anything except water and Zest-O juice, which John-john only preferred the Guyabano flavor. He can also sit on his wheelchair, a respite from his long stay on the hospital bed.

On December 24 ,past 5 pm, I arrived in his room and found him with his eyes half-closed, staring at the door as I entered. When I greeted him, the first thing he asked me (in Ilonggo), was, ” Nakit-an mo siya? Nakit-an mo ang tawo, bag-o lang naguwa?” (“Did you just meet him? Did you see that man who just went out?”) I thought he was dreaming. Cecile was asleep on a cushioned bench beside his bed and later on, she said she was unaware of what went on.

John-john said while he was trying to sleep, a man entered his room. He described the apparition-“. He said “the man blessed the first two corners of the room” and blessed my brother. Then without opening his mouth, he talked to my brother (!) saying that “Be prepared. On December 26, at about this time, you will be fetched. Then he blessed the last two corners of the hospital room and went out of the door.” A minute or two later, I arrived and entered the room.

When Dad and Mom discussed this with the Hospital Chaplain, the latter said it was more similar to a saint named Peregrine, the patron saint of cancer patients. We were never aware there was such a saint! The Chaplain, a frequent visitor of John-john, confided to Mommy that his visits actually gave him more wisdom and inspiration just by talking to John-john, instead of the other way around. He called it his “most unforgettable spiritual experience”.

On Christmas Day, we did everything to make the celebration as joyous as we can for him . But John-john was seemingly detached. He would ask to sit on his chair always. I never left him, perhaps because I wanted that apparition to return and take back his word. In solitude, I was begging God incessantly to give half of my life to my brother that he may have a chance to walk, as he believed.

 

 

 

On December 26, past 5pm, I carried my brother to his chair and our family were all present, including my sister Grace. John-john was struggling with his breathing, and at near 6 pm, he complained that it was hot. So, I increased the A/C unit’s coldness to maximum. Then he asked me to give him Zest-O juice, as I was about to put the straw to his mouth, I noticed his perspiration. It was odd. Bead-like droplets surfacing from his skin, and he was not pale, but white! He suddenly blurted out, in a strained voice”Ba-bye! Ba-bye na sa inyo tanan! Malakat na ko!” (“Goodbye! Goodbye to you all” I must go!“) He was trying to be cheerful, but I saw he was scared!

Then he looked at me and said“Tiw, indi ko pagbuy-i! Indi ko pagbaya-i!” (“Tiw, don’t let go of me. Don’t leave me!”) It was if he was trying to draw strength from me. Just like when he used to before, on trying moments. And vice-versa.

His eyes were dilated, jet black, and his expression was like laughing but he was not. Mommy shouted for the doctors. who rushed in. Chaos ensued. I was in a panic, shouting for him not to go, not to leave!

The next minute, I found myself kneeling on top of the hospital bed, with John-john in my arms, as the doctors nurses,medical staff, Daddy and Mommy ,Cecile and Grace milled around us. Mommy, in tears, was calling out to John-john” Noy, you know what to do, we talked about it. Do it now, John! “

John-john obediently nodded, and started singing loud, mumbling actually, the Christian hymn titled “Onward, Christian Soldiers!” which Mommy helped him memorize when they were alone.

His tongue was retracting, making it difficult for him to speak. A doctor ordered a tracheotomy to help him breathe. Dad often told us, once we see this in a patient, it is a validation that a patient will eventually go. A white ribbed plastic tube was inserted in my brother’s mouth instead , his eyes continued to dilate, the retina occupying the whole space and his iris was five times larger. He was staring at the ceiling. At first glance, you would think he was like a drunk about to pass out, a similar scenario.

I heard one male doctor mentioned “Vital signs” and suddenly, John-john shouted ,while staring at the ceiling “Bot? Ikaw na,Bot? Ara ka,’Bot?”(“Bot, is that you? You’re there,’Bot?”) (I broke down, and felt like my chest would rip wide open! He was calling Bebot (the late Eriberto D. Gargar) my first boyfriend who died at the young age of 25 in August 20, 1987 after being robbed by several men in Leganes, Iloilo. Bebot used to carry John-john also when he visited me before, and how he loved my brother so much!

Eriberto 'Bebot' Delasa Gargar at about 17

The late Eriberto D. Gargar or Bebot  ( March 26, 1962-August 20,1987),my first boyfriend, whom John-john saw and called before he breathed his last.

Another male doctor shouted , “Open the door, open the windows, he is going now!” Mommy and my sisters started screaming. Dad was more composed, while in tears, he said in a very loud voice, “Goodbye,son! Goodbye,anak!” At that last word, Dad broke down,too.

I saw death face-to-face, for the first time as my brother breathed his last. At this split second of silence, we all saw a hair-thin like light emanating from his forehead and swiftly passed through the 20 watt- flourescent light above our heads. The light flickered. It all happened in a few seconds!

He was declared clinically dead at 6: 06 pm. December 26, 1992. Exactly as that apparition — the man in brown robe– told him. His remains were interred where Oggie and Nenette are.

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Leaving the house during John-john’s interment, Fabrica, January 1993

John-John had another dream, which he only revealed during his interview with the Inquirer. He mentioned that he hoped for a ‘trust foundation’ for other patients stricken with DMD, specifically those in poverty. As the Inquirer described it: “A foundation for muscular dystrophic patients, a foundation that will give them hope and that assure them that there is still life after MD.”

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First of 2 pages of the Philippine Daily Inquirer’s Lifestyle section,featuring John-john’s life story. ( Nov. 29, 1992 ,Sunday issue)

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John-john at the age of 23.

Despite his ordeal for 17 years, my brother held on to his faith and still cared for those who shared his fate. The appointed day he waited for never came. It was destined not to. His last dream , for the sake of other DMD patients, was and will be his last flicker of hope that I will always carry like a burning torch in my heart.*

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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