This personal essay by Tai-yan Chou-Kudu was featured in Episode 15 of the Bloodstream Pod.
My name is Tai-yan Chou-Kudu. I am 18 years old and live with severe Hemophilia A. This October, I am starting school to become a Craniosacral practitioner. Craniosacral is a healing modality which allows your nervous system to switch from sympathetic (fight or flight) to parasympathetic (rest and digest). In our modern world, many people are overworked and stressed out, so their body cannot reset in its much needed parasympathetic state. Damage from this stress can store in the tissues of your body for days, months, decades. The body is amazing at healing itself, if it is given the time and space in the right state of parasympathetic relaxation. Craniosacral work is amazing! I have always had a desire to help others heal, and I believe that stems from growing up with Hemophilia. No matter what form it takes, many kids with chronic conditions have a predisposition for helping others who are experiencing pain and suffering.
Ever since I was diagnosed at age 3, I've been involved in the Hemophilia community of New York. At 6, I started attending Hemophilia summer camps upstate. These camps were free, and helped balance out the pain and discomfort of having Hemophilia with the joy of new friendships, and meaningful connections. I remember walking into my cabin that first year, my new home for the week. I was nervous. As I unpacked my bag, I found a post-it note stuck to my bed. It read “Do you want to be my friend?” It was written by another camper who turned out to be the only other girl there with Hemophilia. We became camp buddies and were able to confide in each other and share joyful experiences. That moment, obviously, touched me and has stuck with me - an early experience of the power of kindness.
For some reason, the kids at my school were not so open and kind. They would often tease other students who were noticeably different, for example students who were extremely overweight or had learning disabilities. They would frequently make fun of our teachers, even to their faces. Throughout school it was difficult for me to connect to and relate with my classmates. I even went through phases of deep depression. Thankfully, I continued attending Hemophilia summer camp, and came to believe that kids with chronic conditions tended to have a greater maturity and sensitivity. Perhaps coming face to face with our own mortality as well as deeper existential questions triggered this compassion and wisdom within.
Although the connection between Hemophilia and emotional/mental health is very much unaddressed, I, speaking as a hemophiliac, can tell you that it is not just a physical condition. I believe kids with Hemophilia or any chronic condition are more apt to experience life from a perspective which considers the pain and suffering of others. Therefore, opportunities to take a nurturing role and help relieve the suffering of others are essential. Even for very young kids, there are countless ways to exercise this empathetic nature. Try taking your young hemophiliac to volunteer at an organization called Brown Paper Bag which feeds homeless people in Manhattan and the Bay Area. Or volunteer at an elderly home. I can now clearly see that the compassion and sensitivity we develop early on is a blessing rather than a curse.
We may struggle because of how different we feel from other kids, but we will often be the ones caring for the downtrodden members of society, understanding the deepest wounds in our friends and family, and, ultimately, displaying one of the most beautiful human qualities: tenderness in the face of suffering. Hemophilia is a blessing.
To contact Tai-yan, email her at firstname.lastname@example.org