NEWS & EVENTS
Testimonials from a PWH: Jared Formalejo
Aug 12 2011, Fri
Bleeding and Living
By Jared Formalejo
I was not diagnosed with this disorder until I was three years old. My parents always retell the story of how they were left puzzled with seeing me bruised up all the time even though I'm just stuck inside a crib or a play pen. They were left to the conclusion that something may be going on while they are away. Possibly my brothers getting too rowdy when they play with me back then, or even to the extremes of them or the house help hurting me. When my parents found the time to look after me, they knew something was wrong when I continued to bruise for no apparent reason. Even though it's been fifteen years now, I still remember how we jumped from hospital to hospital looking for someone who may be able to figure out what's wrong with me. Even my own doctor, my dad, was caught by surprise that it in fact was hemophilia; or did he imagine that it would be hemophilia. Tests of all kinds were done ranging from CT-scans, x-rays to the blood tests which I distinctly remember running away from due to a fear of needles. Eventually, I was referred to a well-known hematologist, who is also my current hematologist, and she finally diagnosed me with severe hemophilia B.
Growing up, it was a pretty common thing for me to hear the words Whats hemophilia? the day I was diagnosed. I was one of the luckier ones, to be diagnosed at an early age and to be born in the time of fast-paced improvements in the field of medicine. My hematologist encouraged us to join a body of people with hemophilia in the Philippines known as HAPLOS or the Hemophilia Association of the Philippines for Love and Service. Knowing this organization was around really helped me overcome my feeling of being alienated from the rest of the crowd while I was growing up. It gave me the reassurance that I wasnt alone in this world and that I have my own family, a family of people with hemophilia.
Its very difficult to live a positive life knowing that something is off about you. I spent most of my early childhood like any other boy attending elementary school; only difference being that I was exempted of all physical activities. I looked at all the other boys with envy as they played and performed in their P.E. classes while I sat in the corner still in my school uniform. I had to admit though, all the special attention was nice and glossy but I didnt really want them. All I wanted was to live a normal life in a not-so-normal way. The bigger questions came along as I passed through the years. How can I live a normal life? How different am I really from all the other people around me? Do I have what it takes to actually live a full life? And the biggest of them all: is hemophilia really weighing me down?
At a young age I was in a small pit of depression because of all these unanswered questions, also because I wasnt able to gain what I really only dreamed of becoming, normal. I always found myself in deep introspection. I always try my best not to have to compare myself with the others around me but an inner force was telling me to continue to look. It may not have been the side of envy inside me after all that was talking, but my moral conscience trying to guide me to what I want. It didnt want me to just look at all the other kids playing; my conscience wanted me to observe them so I may be able to study myself a little bit more. My own family did a lot of this for me. My own mom and dad did encourage me to live life normally. My own brothers helped me get out of my rut in the house and start doing something for a change. Although these things would occasionally come with a price, a bleed somewhere in my body or maybe a small bruise. It didnt stop me from getting closer to one of my aspirations though. A bleed just isnt enough to break the human spirit.
Occasionally there comes a time in my life that I just wished I was born a happy, healthy baby so I didnt have to burden the people around me, myself and especially my family. But endless support would still come from them even though I see myself as this mistake They made me see, as well as my other family in HAPLOS made me see that life doesnt offer mistakes. Life only offers opportunities for us to see the true potential we have as living, breathing and active individuals. I learned that theres something behind my hemophilia that doesnt make it just an abnormality. I took the liberty of devising my own little definition of an abnormality. So I took the world abnormal and changed it into something more positive for the benefit of myself and for the uplifting of others like me, hemophilia makes me above normal.
As long as I know that I am living with a purpose and as long as you have the love for yourself and the love of people around you; you may not even think of hemophilia as a burden anymore but rather something that makes you unique. Not someone who cant do something but rather, someone who can do something else. Enough of all the cants because if we aspire to live a healthy, normal life, we can as long as we do something about it. All I know is hemophilia didnt stop me from doing the things I aspired, such as being a swimmer and being active in so many other sports, becoming an honor student, becoming a loyal and thoughtful son, a role-model in the community and most importantly being an active member of society. There is no reason to be exempted in living your life the way you want it to be, and so I continue my own life, ready for whatever it throws back at me as I go ahead in the unexpectedness already of the life Ive already been having.
