He used to think that I had dirt on my leg all the time
I would go swimming at the local pool or be on vacation with my dad, and people are just curious. I don’t blame them for their curiosity, but it did become awkward, it did become difficult to explain. When you’re dealing with the public you have a whole range of ages. One of my friend’s younger brothers used to think that I had dirt on my leg all the time, because it’s dark colored, so he used to always try to clean it. That was really cute and endearing, but at the same time, it was hard to explain like, no. So you get stuff like that, and then you get a whole range. You get older people too, who just kind of want to know what’s going on, and I think now where my explanatory skills have gotten to a level that I could tell somebody. I think at that time when I was younger, it just was kind of unnerving, and like how do you explain this to somebody else?
Sarah, young adult, Klippel-Trenaunay syndrome
We called it Bob
Mom: One of the things that is a little bit different about Jack’s condition is that he has a vascular malformation that’s on his nose; that’s one of the challenges he’s always had. He now wears glasses so it’s not as noticeable, but he’s always had to deal with people making comments about it. Because everyone always thinks it’s a bruise so they’ll make comments like, “Oh, did your brother smack you? Did you get hit by a bat?” He’s forever been listening to comments that people have made.
Jack: Yeah, sometimes it gets on your nerves.
Mom: He’s dealt with it differently. Sometimes he would tell people that it was a tumor, we gave it a name, we called it Bob, and so it was named Bob for years. Because there was so much discussion around that tumor because it didn’t respond.
Grandmother: This is when he was little so it was much more noticeable when you looked at him. That was the first thing most people saw, they didn’t see Jack, they saw…
Jack: Bob.
Mom: So he has had to deal with that. He actually deals with it better than I do and probably his sister. Nobody wants somebody to look at your son and think that there is something wrong with him, by pointing that out. So he has always had to deal with people making comments about that.
Jack, child, and family, Cutaneovisceral angiomatosis with thrombocytopenia
“I was born with it. I came with it.”
Mom: He would hear something constantly about it.
Jack: Random people.
Mom: Yeah, it’s random.
Sister: When you’re checking out at the grocery store, like “Oh, did your sister smack you in the face?”
Mom: Waitresses, everybody really.
Jack: Everybody
Grandmother: We’ve even had nurses, when you get on the elevator here, they will get on and say, “Oh, what happened to you? Did you get hit?” Nurses, you would think that they would be a little more sensitive to things like that.
Jack: I would just say, “It’s not a bruise, it’s a tumor.” And they would say, “Oh, I’m really sorry.” And sometimes I say, “Don’t worry I get it a lot.”
Mom: Sometimes he will just say, “I was born with it. I came with it.”
Jack, child, and family, Cutaneovisceral angiomatosis with thrombocytopenia
Sometimes people just feel uncomfortable
Even growing up I didn’t care even if people stared at me, because my mom and dad were like, “that’s their problem, if they want to look, let them look.” That never bothered me, it was when people would point and say really nasty things, and I knew what they were talking about, that I could hear them, that’s what would bother me… I think sometimes people just feel uncomfortable. I don’t think they are trying to be mean, but I think they feel uncomfortable because on the outside you look unique and they just don’t know, they keep staring kind of thing. And they’re like “what is that?” out of curiosity, not out of meanness. I just didn’t want people to feel uncomfortable or be like, what does this girl have or whatever. So when I went to college I tried to cover it up as much as possible, whether I wore my hair down and wrapped around so you couldn’t really see it. People would say like, “oh you have a stiff neck” because of the way I hold my neck because of the mass. And I would be like, no I don’t have a stiff neck, it is just the way my neck is, “oh, ok.”
Lucy, adult, Blue rubber bleb nevus syndrome
Now I’m proud
I get stares and comments, but now I’m proud to say, “Hey, I’ve been through the ringer and I almost died.” I’ll tell people that I’m the luckiest man in the world or God wants me here for something, and I gotta figure out what it is. So yeah, I don’t care about the stares anymore, you can stare all you want. I’ll take a picture if you want it, give it to you, it doesn’t matter, it doesn’t hurt me one bit anymore because I’m here, I’m living my life.
Carlos, adult, Lymphedema