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“My life, so far, has unfolded in three distinct chapters: the day I was born, the day I had my first brain operation, and the day I had my second.” – Lucky Mae Fornoles Quilao
Here’s my AVM Story
In my younger years, life was kind. I had my mother, my aunties and uncles, my grandparents, neighbors, teachers, classmates, and friends. You could hear my voice in the church choir or see me in the streets during a Santacruzan or Flores de Mayo. I was among the top students in my class and known to be a dutiful, disciplined girl.
But everything changed thirteen days before my grade school graduation.
I was taking a bath when I suddenly felt an intense pain in my right ear. It was so unbearable that, to this day, I believe only divine intervention helped me make it out of the bathroom and call for my aunt. When she saw me, she held out a cotton ball soaked in ammonia. The moment I smelled it, I lost consciousness.
When I woke up, a month had passed. I was in a hospital room with five other patients. Slowly, I learned what had happened. My aunt had rushed me to Manila Central University (MCU) Hospital, where she worked as an assistant nurse. My other aunt called my mother, who was working in Saudi Arabia as an administrative assistant at King Fahad National Guard Hospital (KFNGH). Thanks to the kindness of her Canadian coordinator, my mother was able to come home right away.
The doctors diagnosed me with arteriovenous malformation, or AVM—an abnormal tangle of blood vessels that disrupts the connection between arteries and veins. But to a twelve-year-old girl, that medical term translated into an asymmetrical face, a shaved head, poor eyesight, hearing loss, and the inability to walk. It also meant losing a year of school and returning to a class full of students younger than me.
With therapy, I eventually regained my balance and coordination. My right ear’s hearing was permanently gone, but my facial asymmetry became barely noticeable to most people. My hair began to grow again—enough that a neighborhood hairdresser once thought I was copying the look of a popular local singer.
Six months later, I faced another operation: a non-invasive procedure called gamma knife surgery. My neurologist had discovered another lesion in my brain that could rupture at any moment. My mother did everything she could to save up the $10,000 it required. She also arranged for me to undergo an embolization procedure at Riyadh Military Hospital, a facility typically reserved for the Saudi royal family. Through the help of her colleagues at the Post Graduate Training Center, I was admitted.
Despite it all, I graduated from high school. I graduated from college. Then I joined my mother in the United Arab Emirates, where she had moved to work as a medical secretary at Tawam Hospital. Hoping to pursue something in journalism, I was fortunate to find work as a reporter for a city newspaper and as a writer for a real estate periodical and an interior design magazine. I threw myself into these roles, grateful and motivated.
One day, while preparing for an art exhibit at Emirates Palace, I felt a sharp, familiar pain. This time, it struck the right side of my forehead—eerily reminiscent of the headaches Harry Potter often complained about in his stories.
My mother immediately called a friend of mine, a physiotherapist, who advised us to head to the hospital right away. I got dressed, dragged myself to the elevator, and climbed into a taxi. I remember looking at those around me and asking them to take care of my mother—just in case—before I lost consciousness again.
It happened once more.
And this time, the aftermath was even worse: permanent facial asymmetry, complete loss of vision in my right eye, and permanently weakened balance and coordination. The only thing that remained unchanged was the hearing loss in my right ear—something that had never truly bothered me until recently. Two Decembers ago, I began struggling to hear my mother clearly. I asked her to repeat herself, panic rising in my chest. I prayed to God, once again, that I wouldn’t lose the ability to hear from my remaining ear. That very month, an otolaryngologist reassured me that my hearing could still be preserved. I continue to pray that it stays that way.
And I keep praying that my arteries and veins never tangle again. AVMs are extremely rare—occurring in less than one percent of the population—and my life has shown just how rare and relentless they can be.
But something even rarer? A mother who never gave up. A woman who sacrificed everything to make sure her daughter could live again—and again. A family who never wavered. Friends who stayed, who showed up, who extended time, effort, and love despite the difficulties.
My life, indeed, has three beginnings: when I was blessed to live, when I was blessed to live again, and when I was blessed to live again—and again.
My reflections on identity and acceptance
It took me days to realize how much I had changed after my first brain operation. At the rehab center, I turned to face the mirror and saw a girl with a shaved head, missing right eye, and an uneven face—someone who couldn’t even hold the bars. That girl was me. I cried when I returned to my room, despite the therapist saying I had a good chance of recovery because I was young.
I don’t remember exactly when I stood or walked again, but within five months, I was doing both. I no longer looked sick—wearing glasses and a black crocheted fedora when I went out. My right ear remained deaf, and I couldn’t write with my right hand, so I taught myself to use my left.
People often only saw my impairments, but I stayed focused on my studies, magazines, and music. When I had another brain operation ten years later abroad, I was prepared. I attended therapy, practiced walking with family at the park, and used an FES machine on my face.
What I hadn’t expected was the permanence of my side effects. I still can’t walk alone and my face remains asymmetrical. But with my mother’s encouragement and a supportive therapist, I kept going—exercising and typing my thoughts to this day.
What I hadn’t expected was the permanence of my side effects . . people often only saw my impairments.
Stigma and Social Perceptions
I remember the first time I went to a mall in my home country after my second brain operation. A man stared at me the entire time my mother and I approached him. He didn’t even try to look away. My mother just smiled and said he was awestruck by my beauty.
I’ve had other unpleasant experiences—like being denied PWD discounts or judged immediately because of how I look. But there have been good moments, too. During Pope Francis’ visit to UST in 2015, strangers helped me through the crowd, off the sidewalk, and into a better spot. More recently, a woman helped my mother carry our bags at a bus terminal—such a relief since my mother was assisting me at the same time.
But my favorite memory is meeting Karl Kaufman, my former editor at GMA News Online. It was brief, but in that moment, I was seen not as someone disabled—but as a writer, spoken to with respect and sincerity.
[the meeting] was brief, but in that moment, I was seen not as someone disabled—but as a writer, spoken to with respect and sincerity.
Advocacy and Empowerment
After my second brain operation, I came up with many plans to help persons with disabilities like me. The ones I remember most are Plans A, B, and C.
Plan C was to study further. I already had a journalism degree, and I believed a master’s would let me teach students with disabilities. I applied to De La Salle University in the Philippines, but my mother reminded me that no one could accompany or care for me if I returned home. She couldn’t leave her job—we needed the income.
Plan B was to go to Chiang Mai, Thailand, to study Thai massage for children with disabilities. But at the time, I still couldn’t walk on my own.
Plan A was to write. I launched a blog, The PWD Forum, to push for inclusive education in the Philippines. I stopped in 2018 after the government began implementing similar policies. I don’t claim credit, but I’m glad the message got through.
I also worked as a stringer for GMA News Online, mostly for their “Pinoy Abroad” section. Though not focused on disability issues, it helped me grow as a writer.
My biggest dream is still to write a book—one that could fund an education scholarship for Filipinos with disabilities.
And so, with every word I write and every step I take—no matter how slow—I continue to move forward, hoping my journey lights the way for others to rise, to heal, and to believe that they, too, can begin again.