When I was younger, my parents would tell me to date a particular “ideal” man. This man need not be good looking, but he’d better be a good guy — no questionable values, capable of getting along with my family — the perfect guy in the eyes of every Filipino family.
This man ought to be in perfect health. Being in love is great, they argued, but nowadays one also has to look at the more practical side of things.
So how did I end up writing this piece as I sit beside my life partner, who has both severe hemophilia B and epilepsy?
Sure, life is hard, I’ll give my parents that. I’ve learned so far in my 24 years (three of which I’ve been living independently) that every move you make costs money these days, and jobs aren’t easy to find.
For many young Filipinos like me, living on one’s own is desirable but not realistic, so we’re often forced to stay with our families and help to pay the bills. Some of us are even obliged by our parents to be their “official caregivers” when they grow old, notwithstanding the reality that many young people in our country don’t earn anything beyond minimum wage. I get where my parents stand: In this economic environment, an illness or disability costs a lot of money.
Last month, I took leave from my regular job to visit my sick mother in the province, and to figure out where I stood regarding employment. I had already grown quite depressed at work since I didn’t think I was cut out for a 9 to 6. I’d always envisioned doing something bigger, something beyond being confined to a desk, getting paid by the hour for my time and mental resources. I wanted to start my own business venture, and I’ve always loved bringing ideas and creative concepts to life, whether through art or entrepreneurship.
I knew starting a business would be a risky move. Yet a huge part of me continued to scream, “Go ahead! Do it!” The same way it screamed, “Go ahead! Choose him!” when my partner Jared and I were starting to get to know each other.
Growing up, I was a rather awkward teenager. I was an achiever in elementary school, but in high school, things turned upside down for me. I had a difficult time making friends, and as time passed, I grew more withdrawn. I tended to isolate myself as my depression worsened. My grades plummeted, and I refused to attend school-related events. I became a bit of a rebel.
I found my saving grace in the other kids who were “social outcasts” like me. Interacting with them taught me that it was OK to be different. Although I was initially worried about what other people would think, in my heart I loved that I could have deep conversations with them. These were the sort of conversations that gave me a glimpse into their souls, wounds and all, and allowed me to see them as actual human beings.
I started caring less about what other people thought and more about my relationships with them. In turn, I grew more accepting of people who weren’t like everyone else. Perhaps that was the bright side of my rebellious streak, and maybe that’s what ultimately drew me to Jared, my partner of four years, and my soon-to-be husband.
When I was getting to know him, I didn’t want to think about the cost of each bleed (one dose of Factor IX could cost a typical Filipino family’s yearly earnings) or the multiple possibilities of injury or disease. Or the challenges we might face if we decided to have kids. I just wanted to get to know him as a human being.
I fell in love with his personality, his kindness, his unique sense of humor, and the way he radiated hope even in times of adversity. I loved that he made me a better person in that I learned to see beyond myself, something I’d often overlooked in following my life’s goal of creating new things as a somewhat rebellious artist and entrepreneur.
I may not have known it at that time, but at the moment I chose to be with him I was making a major life decision. And every day I continue to choose him opens up a new string of life decisions. But I would happily choose him over and over, because looking back, that first time I decided to be with him turned out to be one of the best decisions I’d ever made. I found myself a wonderful human being. He wasn’t merely a great “investment” — he was someone with whom I could invest in the future.
We’ve recently opened a small business selling jewelry and are on the road to starting a family.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.