MARC PANGILINAN
PROGRAMS DIRECTOR, NYCHC
“As a teen I was always running away. I wish I’d had this community sooner in life.”
- Mark P.
For my Silver Linings Spotlight series, I had the amazing opportunity to sit down and interview Marc PanGilinan, Programs Director, New York City Hemophilia Chapter. Marc currently leads the teen community in developing and managing the education and community programs.
Prior to NYCHC, Marc embarked on a 3-month solo backpacking trip throughout Southeast Asia, he was able to connect with the Hemophilia Advocates of the Philippines (HAP), and volunteered as one of inspirational speakers and self-infusion trainers at their inaugural camp weekend. It was that life-changing experience that made him want to be a positive contributor to the bleeding disorder community.
As an avid international adventure traveler and obstacle racer, Marc hopes that his perspective in regards to his bleeding disorder will help others systematically develop the emotional resiliency and pragmatism to thrive and achieve new heights in their own lives.
- Brian
Q & A
What is your superpower?
Same meal: whole milk oatmeal every day. It’s my superpower. Often times it is just little things that make me happy. I believe in intermittent fasting, so I really look forward to my bowl of old fashion oatmeal. It is this consistency in my life. It is grounding and I know what to expect.
Can you share an aha moment where you found a silver lining about your bleeding disorder?
I don’t know if I have actually had a true “aha” moment, but I look back on my life as a whole bunch of collective things. I am a stimulation person. I like a lot of adventure things. I’m not advocating for all the teens reading this to run out and try this, but I’ve done sky diving and cliff jumping in Thailand. I’ve gone backpacking alone for 3 months. I’m an adventure person. But my aha moments come from being deliberate with my life. From knowing that I can control my choice to plan to do something.
My bleeding disorder has given me a laser focus to be deliberate about my choices. It has forced to me take advantage of the time I do have in my life. My joint health is significantly sped up as a result of this disease. Most importantly, I am deliberate about the life I want to live because I don’t feel I have as much time as I should. I need to be very serious about some of the choices I am making because of my physically capability.
It might be myth ... sharks have to keep moving or they die. I want to experience the world fully. I don’t want to miss anything or be held back from anything as a result of my bleeding disorder. So, I take advantage of as much as I can. I don’t let the doomsday people get in my head.
Talk to me about a specific relationship you've built because of your bleeding disorder.
I’m 32 and now I’m fully in the bleeding disorders community, but I didn’t know the community existed until I was about 26. I had gone to the treatment centers my entire life, but I wasn’t in the community. There is a difference. Most of the people I had met up until the age of 26, the people I had met talked about their disease as if they were already dead or going to die from a brain hemorrhage or internal bleeding as if they had lost everything. At 30, I really got involved. I took a job with NYC Hemophilia Chapter
This community has changed my perspective on life. Now I have become empathetic, concerned, making an impact in the community, shaping the community, the whole thing and I cannot imagine it any other way. As a teen I was always running away. I wish I’d had this community sooner in life. I am so grateful for this community. It is a paradigm shift. The people in this community are focused on improving the lives of other people. Everyone can instinctively trust with no explanations needed. It is a safe haven. I am so grateful.
Camp is a big part of our community, how has camp played a role in your life?
I never went to camp, but through my role with NYCHC I was able to attend a family camp and shadow the director in the summer of 2019. From a community member perspective, it was this summer I realized how different my life could have been if I had gone to camp. That was a slap in my face. I found out how different life could have been. It is a community with no walls, no boundaries, you don’t have to prove anything … I saw what a positive impact it really had kids and teens! That is exactly what camp does. It encourages kids to push past their limits in a safe environment and connect with others who are struggling with the exact same problems. Their conditions won’t change. Knowing that others are out there that you can connect with and make friendships – well it was amazing to watch. All I ever wanted as a teen was to find people who were like me and camp helps you do that.
What is one thing you are proud of that wouldn't have happened if you didn't have a bleeding disorder?
I am proud of the life that I have been able to live regardless of my bleeding disorder condition and do all the work in spite of my bleeding disorder. It has been hard, but I have put everything first and never lost sight of the responsibilities to my bleeding disorder. My accomplishments were hard earned even if I didn’t have a bleeding disorder. I have completed tasks that some individuals could not have completed even if they did not have a bleeding disorder … like back packing alone for three months. I am proud of that.
What current or past goals in your life have been shaped by your bleeding disorder?
I am working towards the betterment of the people who share this disease with me. My personal and professional goals have come together. To help other people achieve the life that they want to live the way they want to live it within the limitations of their condition. I want to help others be deliberate and decide who they want to be, but more importantly I want everyone to have the choice to be able to decide who they want to be.
