Who is the Torso Boy?
While I’d like to give you some kind of profound insight, some sort of whimsical guide to who I am, I regret that I have none. Yet I do find a more humble answer best suited to my tastes. I am me. I have a physical disability known as Thrombocytopenia Absent Radius Syndrome. What the hell does that mean? In short it means I have a big head and little arms. The long version involves something along the lines of how I should have died in the first year or have been mentally compromised. No matter what way you look at it, my life came with only an unmarked disc and no manual. I’ve spent the first twenty-three years of my life trying to fit within the guidelines of the social normative. Within the last few years I’ve donned the mask of Torso Boy as a way to create my own normative. While I may look strange to many, I’m finding my own comfort and my own path. Torso Boy is my adventure to become who I want to be without losing myself to the pressure of the world at large.
Why Torso Boy?
This is a fairly recent question in my adventure. Why not Torso Man? First, I feel that Torso Boy sounds better. Yet, I must admit that the answer wasn’t good enough for me. Torso Boy was a joke in college among a few gaming friends that became something more. Still, why keep “boy?” I see this adventure as a path to self discovery and self definition. So “boy” is what I am. Will I ever mature into the Torso Man? Very likely not. I’m no super hero and that’s what Torso Man sounds like to me. I refuse to let myself become complacent. I want to always improve to make myself a better person, friend, colleague, and whatever else I can be. So should I reach the day I’m who I want to be, it’ll be time to improve something else. Maybe Torso Boy is a vow to never take myself too seriously. Never to loose ambition, desire, and to never conform to another view of normalcy but your own. So from here and onward, second star to the right, and straight on till morning!
What really is Thrombocytopenia Absent Radius (TAR) Syndrome?
After a year of writing this blog, I have felt that it would be of some benefit to provide more information. Thrombocytopenia Absent Radius Syndrome is an inherited genetic mutation of the RBM8A gene that appears in .42 per 100,000 live births. As a result, those with the mutation are born without the radial bone in the upper extremities and a low platelet count. Many die due to hemorrhaging in the first year and survivors are at risk of being mentally compromised. While many physical variations of TAR Syndrome exist, I exhibit signs of the mutation with my hands attached directly to my shoulders and my knees fused at an acute angle which may look like I permanently sit cross legged. As part of the absent radii, I have some trouble with dexterity using my hands and my thumbs have a weak grip. Also, my feet are turned upward. So while most people see this as a deformation, I find it more as a benefit. With this, I can easily transfer items from hand to foot and they give me a wider range of reach overall. As for the platelet count, I haven’t needed to see a doctor about it in years. So while there is still some risk of severe bleeding, my doctor assured me that my platelets are at a normal level. Apparently, I managed my first year with everything intact though I might have traumatized my parents a bit.