Communication plays a very significant role in changing paradigms, especially in this digital age. In this speech, which I delivered at the Silliman University College of Mass Communication, I shared how I used my background in the field of communication to advocate for people with bleeding disorders.
We’re back in the comforts of our home now. Star was discharged yesterday afternoon after being transfused with 14 bags of packed red blood cells and cryo-precipate.
Everything’s back to normal. Star woke up early today and made “dibs” (their term now for laying first claim on something) on the computer. Over breakfast she declared she would go to church early to serve in Sunday school. She’s a volunteer of the toddlers’ class and loves to “fan-girl” over cute little babies.
This girl continuously amazes me. One day, she passes out. The next, she doesn’t look any inch unwell at all. She is a carefree young lady who loves life and never lets anything get in the way. I guess it’s also her way of trying to defy a life-long disorder.
It’s never easy to balance between giving your child the most normal life possible and at the same time, facing the realities that her “normal” will never be the same as the normal-normal of people without disorders.
The downside of growing up with bleeding episodes is that it becomes your “normal” and you no longer distinguish what is suppose to be the “real” normal. I guess that is true with Star, as is with many others like her.
I have been like that too, believing that “normal” varies from person to person. My “normal” is having very heavy menses on the first three days that at times, I cannot go out of the house for fear of “flooding” the streets. Of course, that’s an exaggeration. But it’s too heavy that it’s too risky to go out.
Star and I always “quarrel” about keeping track of her menses. I insist that she crosses out the calendar the day it starts. This will make it easier for me to monitor her. As our rule of thumb, we’re suppose to infuse after a week of heavy menses. But she almost always forgets.
I am sitting here in my daughter’s hospital room, watching her as she sleeps, pondering on her future and the future of other Filipino “bleeders” like her. With the election fever high up in the air, I wonder what difference the incoming elected officials will bring to the very sick public health sector.
“Bawal magkasakit” is so real in this country where health care is almost like a luxury, especially for people with rare disorders like Hemophilia. Also known as “royal disease,” it is so coined because some members of the royal families are affected by it…. In the Philippines, the term “royal disease” takes a different meaning. It is considered a “royal disease” because only the “royals” can seemingly afford it. Hemophilia treatment is very expensive. Minor bleeds can cost a minimum of P30,000 per treatment. This does not include cost of hospitalization and the doctor’s fees. Major treatments can cost millions.