Why I Am So Colorful

I am re-posting an entry I just wrote for KT Fabulous, a blog started by someone with K-T about K-T. Most of you don't know it, but I was born with K-T -- and most of you don't know it because I didn't want you to know. So it is my honor to write a bit of my story to share with Arianna and her readers, as she and others have shared before, and finally let some of you know another side of me as well.

(She is running my post on her page now, or over here. Even though you can read my words below, I urge you to visit the blog. K-T is an ugly, painful little syndrome that isn't "glamorous." Nonetheless, Arianna started the blog to discuss it in her life, which is far braver than I was at her age.)

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When I was born in 1978, Klippel-Trenaunay Syndrome wasn't exactly a well known issue. It took my parents more than a few pediatricians and "experts" before one man gave them a name for the apparent bruising visible on my body long after any normal bruising from pregnancy should show. Sadly, K-T wasn't the only problem I was born with, and for a number of years, my K-T took a backseat to a skin issue that ended up requiring eight surgeries (throughout the years) on my head. 

I didn't grow up real "normal," in other words. I spent a lot of time in hospitals and doctors' offices, both for my K-T and for the skin problem relating to my noggin. I grew up with a lot of pain and, as many people with K-T can attest, a lot of confusion. I was told at a young age what my restrictions in life would be; I was also informed, incorrectly as it seems in this moment, how limited my life would end up being to treat my K-T. (My family and I were informed that my leg might need to be amputated if the K-T got worse or more painful. I doubt I'm the only K-Ter here who was told that at seven years old.) But this writing is less a compilation of my hardships and more about how I decided to make my peace with what I was born with, so I'll only share the necessary stuff here.

My K-T is fairly mild compared to other cases I've read about or have seen. It is restricted to my lower left extremity (ie, my leg, folks), with some splotches apparent on my left lower back as well. My K-T is primarily characterized by surface-level varicosities and not so much naevus flammeus (port-wine stains). I also have less outright swelling than other cases, though the diagnosing doctor was clear that my muscles needed to be worked out from that very young age, so I've never been inactive with them, which may account for some of that. But the pain is remarkable at times, and the appearance of my leg was, of course, a shame I tried desperately to keep hidden, because it's a bit swollen and colored all over in purples, reds, greens.

I can admit now: growing up with what I have definitely mixed me up some developmentally and certainly gave me a fair dose of anger toward a lot of things. There were a few years there, oh let's say over 15 years ago now, when I was more inclined toward depression, shame, and some self-pity. I probably even felt I deserved to feel those ways, since I had my pains and whatnot. I had a lot of growing up to do, obviously. I knew it even then, in the middle of feeling sorry for myself and being tired of it, I needed some new perspective. So I came up with a notion that'd help me take a bit of pride in myself, maybe "improve myself" some (as I thought of it then, before figuring out I need no improvement whatsoever).

I decided to cover myself in tattoos. What!? Tattoos, you say? Yes. For whatever reason, but aided no doubt by my own drawing abilities, I've always liked tattoos. To give you some perspective here: by the time I was 14, I wanted to have sleeves. But being that young, I had a ways to go for that, not to mention the couple more surgeries I was yet to have -- the last one on my head and an exploratory one on my foot to determine if there was a surgical technique able to take away the K-T (there isn't, it failed spectacularly).

So when I turned 18, I got a tattoo. Then when I had money again, which was a bit later since I was a full-time student working three jobs to pay rent and tuition, I had more work done. This process repeated itself indefinitely. Needless to say, I have a lot of tattoos now. But that first tattoo was significant, because I knew what I wanted to end up with to counter what I was born with.

So why are tattoos important to me? Well see, it's pretty simple, and for the sake of my metaphor I'm going to utilize a divine mention. (If your beliefs differ accordingly, go ahead and change the mention to whatever you want.) God gave me a crappy body -- it hurts, its needed way more fixing than it should have, and its colored all veiny, which I don't appreciate. I wanted to be proud of my body, so I added my own coloring. My own designs. My own ideas.

And you know what? Taking control of something for myself like that worked. It helped me change my mentality. Despite the leg I think it's safe to say I hate, I don't hate myself whatsoever. But I wasn't able to say that easily those years ago. Having something I'm proud of, artwork that in many cases I drew, allowed me to make peace with the anger and unfairness that boiled in my mind previously. And now it's like this: I have some things I'm not happy about with my body, but I also have some things I'm terribly happy with as well -- they even each other out. And I like who I am, what I am. Did tattoos make me like myself? No, of course not, that would be shallow. But it was an active decision that contributed, along with all the other ones I'm sure I made at that time, to the changing of my mindset. So that when I look back now, I see the tattooing process as the "turning point."

It may seem like such a small, insignificant and material thing to have enacted so much positive change in me. But see, folks like me with some junk going on from birth, we grow to a more complex understanding of life. We have a few more sensitivities, discouragements, and self-worth issues. It is absolutely more difficult growing up with something extra, in addition to all the tough times kids have anyway -- especially in their teenage years. I'm 32 years old now, but before I was 18 I had at least 10 surgeries and a handful of procedures, plus the pain from an overly sensitive and ugly-looking leg. So it was tough on me, especially as a youngster. Other folks with K-T can probably tell you similar stories and thoughts as mine too. The point is, sometimes kids like us have to work a bit harder to find our smallish amounts of peace, contentment, self-worth, and pride.

Now, for the most part, I still keep my K-T hidden, but not because of shame. These days, I'm proud: most people I've come across in life have no idea I have a disorder. This includes more than a few lovers, I must admit. The reason it makes me proud is because I've never wanted to be someone who was characterized by a disease -- say, for instance, being told "you've done real well in life considering." Screw that. I'm just a human being, judge me as that alone. On top of that, I'm a very good man, and it has nothing to do with what I fight through each moment to retain my normalcy. It just is. So yeah, I'm glad most people aren't aware of my disease -- it ain't their business. But I can carry my "secret" with more pride, because it isn't shame/fear that keeps me from showing it off, it's a conscious decision. I'm judged as a regular fella, because I've fought hard to make myself into a "regular" fella. 

Those of us who have found ways to have pride in ourselves, to enjoy our bodies despite the "curses" we were given, and to move forward without shame have done real well. We didn't ask for this, but now that we have it, maybe we ask ourselves now: what can we do with it? I found my answer, and I hope by sharing what I've kept mostly to myself for many years, I can encourage others to find theirs.