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The tale of a "special;" mom and an anti–cancer advocate
by Alexa Yadao

Anti-cancer advocate Marivic Bugasto with super chat project. -- Alexa Yadao

When cancer is still seen as a “death sentence” while persons with special needs are still regarded as hopeless cases, this tells the story of two women, Marivic Bugasto, a stage 4 cancer survivor, and “Maderyas” (not her real name), a mom of two special kids, on how they conquered their own battles against cancer and the stigma surrounding persons with special needs. The story also narrates how they have helped their respective communities fight the same battles as them despite their own struggles. ;

The battles commence

In 2015, Marivic was diagnosed with Paget’s disease of the breast, a rare form of breast cancer. To survive, she underwent bilateral mastectomy – the removal of the two breasts. Over the span of six months, she underwent three major surgeries along with the typical cancer treatments.

“I tried crawling to the bathroom,” shared Marivic, which she described was only less than two meters away from her bed.

Paradoxically, it is not the big C that weakens a patient, but the treatments to cure it.

“You can feel the poison in your body,” she recalled. “I lost all of my hair, my eyebrows,” she recalled. “All gone. It did not come back. I lost my nails, mostly on the toes. I’d stand by my window, look up at the sky, and I asked my mom to get me,” she narrated.

Meanwhile, for Maderyas, the diagnosis of her first-born having autism came as a bombshell. Like all “special” moms, she struggled between hope and hopelessness.

Her first-born was first diagnosed with ADHD (Attention deficit hyperactivity disorder) but the diagnosis changed to Asperger’s Syndrome, often referred to by the special community as “highly functional autism.”

Autism spectrum disorder (ASD), usually referred to as autism, is a condition that refers to a wide range of social and communication difficulties, such as the refusal to make eye contact, being fixated on a certain thing or avoiding interaction altogether, and repetitive behaviors such as the flapping of arms or rocking back and forth.

Children with ASD display varying degrees of abilities and difficulties, thus the “spectrum.”

Despite this, Maderyas remains optimistic. It works.

“Sabi ng asawa ko at sabi ng maraming tao pinangalanan mo lang, nilagyan mo lang ng label,” she said, referring to the connotations brought by the term “autism.” “Noong unang panahon marami nang ganyan, dahil walang label, normal lang ‘yan sa atin. So may struggle akong ganoon,” she continued.

But the mother is worried about what lies ahead for her, her son, and for the family as a whole. How will she “manage” her son’s condition? How will his son manage autism?

She recalled how her first-born son stopped being sociable, how he wanted to stop going to school, how he took his PWD card (bearing his name and his condition) from her purse and threw it away.

She later found out that his son was bullied in school.

Then she recalled that one time her son asked her: Why am I like this? Am I different? Should you be ashamed of me?

Mali ba ako na ipinakilala ko sa kaniya yung label niya?” she asked.

Arduous battle ahead

Their battles, unfortunately, were far from over.

When Marivic’s doctor declared her to be “in remission” on May 2006 – a word most cancer patients would want to hear from their doctors, she started feeling bone pains September of the same year, only to find out that her cancer has “metastasized” to her bones.

Metastasis is the condition in which the cancer spreads to other parts or organs of the body.

“It was a terrible time. Not only will the medicines drain you, thinking about finances will drain you too, and thinking about how your condition is affecting the rest of your family also strains you,” she said.

The metastasis prompted her to go through another series of treatments, and, indeed, she fought well and survived.

But she lived to witness her father, son, and husband die due to cancer.

Her father died due to lung cancer. Her son died on February 2014 due to liver cancer. And her husband, she accurately recalled, died “10 months and 23 days” after her son, also due to liver cancer. Among her four sisters, three had breast cancer.

Meanwhile, when Maderyas’ second-born was two, she started noticing the red flags.

Hindi niya ako pinapansin, nagseselos pa ako. It will take a while before he’ll start coming near me and staying with me, and hugging me,” she said.

They later found out that he had cataract in both his eyes. Presently, she is now dealing with her second born’s global developmental delay, which refers to the condition of children who “deviate” from the “normal” development of children in terms of motor, speech and language, and social and emotional skills.

To arrive at her sons’ diagnoses, of course, it required a plethora of tests and visits to specialists, who came with “confusing” and (often) frustrating diagnoses, not to mention the financial strain it brought.

Several tests and specialists later, the most daunting task emerged: how does she make sure her sons, given their conditions, live “normally” so that they are afforded the same life opportunities as their “neurotypical” peers?

“Did I do well today? Did I do things right for them? Doon ako hirap. Dahil alam ko na may difficulty sila, minsan naiisip ko baka ‘di tama ‘yung mga strategies ko in raising them,” she said.

Mothers of children with special need worry about the same things: How are their children doing in school? Do they have friends? Are they being bullied? Are they safe? What if someone takes them away?

And we could say that the burden is heavier for these “special moms” who are fully aware of their children’s abilities and limitations.

Like all battles, dealing with cancer and the needs of special children are costly. Worse, they drain not only financial resources but also the physical, mental and emotional reserves of the people fighting these battles.

But more importantly, it is harder for those who do not have the means and resources: to avail cancer treatments, to visit specialists, to send the kids to schools that can accommodate them and their special needs.

It is harder for those who are not prepared to fight in the first place due to lack of information and awareness.

Fighting together: Early detection and Minda's Buddies

Seeking treatment for cancer is difficult in itself. Yet, things get even more difficult for those who cannot or barely afford the cancer treatments, according to Bugasto.

“I say I’m lucky,” she said, as she recalled how a lady with the same profile, age, physique, and prognosis as hers, died because she was using “affordable” medicine.

She admitted she was lucky enough that her family could afford to avail “high end.”

Usually, an oncologist offers three options in terms of the medicines that will be used in the treatments: cheap, affordable, high end.

“I’m thinking, it might have been the more expensive medicine, the efficacy of the expensive medicine,” she said. “I have thoughts na ganoon, that’s why I do the advocacy,”she added.

As soon as she regained her strength, she joined a faith-based community and dedicated her life mostly to her advocacy – early detection.

“We don’t have money(in Minda’s Buddies),but what we do is to navigate patients to the right doctors,because there are scrupulous ones,” said Marivic.

Minda’s Buddies is the first cancer support group in Baguio.

Additionally, Minda’s Buddies coordinates with various organizations, hospitals, and pharmaceutical companies to get free or discounted medicines as well as cancer treatments and other medical procedures.

On 2007, Minda’s Buddies who was then headed by Marivic organized the first cancer chat in Baguio.

On 2008, she spoke at the first Silver Linings organized by “I Can Serve,” an umbrella organization of cancer support groups across the country, of which Minda’s Buddies is a part of. Silver Linings,as the name implies, was an educational forum and homecoming of all (breast) cancer patients.

Occasionally, Marivic travels across the country to share her stories on organized forums or events for the month of October – or as they termed it “OKtober" – which is officially the country’s National Breast Cancer Awareness Month.

She has also been a part of cancer awareness campaigns such as Baguio Cancer Chats of 2007, 2010, 2013; 2007 Avon Walk for Breast Cancer Awareness and 2010 SM Baguio-Avon Walk for Breast Cancer Awareness; Camp John Hay 100 Years Foundation Walk for Breast Cancer; and 2014 Zumba for Breast Cancer Awareness.

Marivic also initiates and/or joins clinical breast screening programs and medical missions.

Fighting together for a friendlier community

For Maderyas, the calling to serve came the same was as Marivic's – the realization that although they were not well-off, they were, nevertheless, a tad more privileged than specials kids and their parents in far flung areas.

Sometime in 2010, in a sari-sari store in Sagada, Maderyas spoke before farmers and community members about autism, who mostly were hardly persuaded to attend the forum.

She recalled how the parents, mostly farmers, barely knew what to do and how to manage their children, let alone their children’s condition.

“First time na informal, very community, very grassroots. Gusto ko nang bumigay, pero hindi pwede e,” she said.

She got to personally talk to one of the parents who revealed that she would lock up her daughter, a teenager, in their house and go to the farm so that she could forget about her daughter’s condition.

Then a daycare teacher approached her and revealed, “Alam mo ‘yung anak niya nakasando lang. Nagma-mark na ‘yung dede. E paano kung ma-bully sa tindahan ng mga umiinom? Kahit umuulan nandoon lang ‘yung bata, naglalaro sa lupa. Bahala na kung sino magpakain sa kanya.

Both of them could not blame the parent. “Kasi paano, ‘yun lang ang kaya ng magulang, ‘di ba?” because even someone, who was relatively more privileged, whom Maderyas knows would adopt an attitude of indifference: "E ganyan nga ate e."

This humbling experience, together with the instance his son was bullied, and the likelihood of bullying (even assault) against special children, prompted her to carry out her own advocacy: a friendly and safer community so that these special children won’t go back to their own safer worlds.

She vowed to the daycare teacher that she will come back, and she will always be available for any help.

She has not been able to return, and she has not been able to do volunteer work, either.

Nevertheless, she has been making sure to make her sons’ community friendlier each day, even if it means explaining (and sometimes apologizing) to her sons’ peers about what makes her sons different, helping a parent whose special child was bullied reach out to the school’s administration, encouraging parents to send their special kids to school, sharing to special parents her management styles and life-hacks, sharing to neurotypical ones, and willing to listen about the plight of their special community.

One battle, one enemy

 “How often did you think about death?” this writer asked Marivic.

“Oh, very often,” she answered, chuckling.

Afterwards, it was agreed upon that when one is at the brink of death, naturally, we spend our lives by sharing it.

For Maderyas the thought of death also often crosses her mind, “I tell myself everyday sana strong and heathy ako. Para I can be with them longer to further prepare them to be on their own.”

Both battles have prompted its heroes to live a life full of uncertainties.

Yet, one thing is for sure. There is an overarching battle with greater enemies: the demons of their own thoughts which occasionally weigh them down, almost always influenced by the stigma surrounding their conditions and the prejudice from the wider community, and the still lacking (government) support for these people, especially indigent ones.

Nonetheless, let us pause for a while and celebrate these two women’s victories.

WALK AGAINST CANCER -- People from all walks of life join the "Walk Against Breast Cancer" within the central business district in 2010 with Marivic Bugas to in attendance. The event spearheaded by a cosmetic company aims to reduce the number of women acquiring and dying from the dreaded illness . -- HFP

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