Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Living with a birthmark - my story (http://birthmark.org/board/forumdisplay.php?f=17)
-   -   My story- red hand of doom (http://birthmark.org/board/showthread.php?t=2864)

jpuritz 04-23-2008 11:34 PM

My story- red hand of doom
 
Hi, my name is Jacob, and I have pws all covering 90 percent of my right hand, the top half of my right forearm, and large blotches on my right upper arm.

In elementary school, I was pretty weird to begin with. First of all, I was a major reader. I did not pay much attention to my teachers, but I knew all of the answers. I'm left handed, and I am also Jewish, so my absence on the high holy days was also a pretty unique trait, for there were only a few other Jewish kids in my school, and 2 of them were my sisters. When I first came to school, in kindergarten, I was introduced to the entire school, and the principal explained that I had a birthmark. Even with the embarrassingly public announcement, many kids came up to me asking what it was. At first I gave them truthful answers, that I was born with it and no, it doesn't hurt or anything. After a while though, as new students to the school asked, I became more... creative... with my answers. It's not that I was unhappy with the truth, but it was kind of boring and I was a sci-fi/fantasy nerd, so eventually I was getting to telling kids that it was either a. my mother accidentally put me in an ink roller when I was a child (that was actually what my sisters thought when they were young) b. it was the mark of the dragon, and it burns when the dragon flies overhead or c. It was natural, but every so often it became conscious and moved my arm on it's own. I had a lot of fun coming up with the answers, and I was never ashamed of it. I was never concerned about my appearance, a trait which continues (for better or for worse) today. Often, I forget that I even have it. What I did not and do not forget, however, is that I am unique. That always made me happy.
I found my best friend in the summer before kindergarten. Andy is a big guy, with a genetic tendency for roly-polyness. Looking back at it now, I'm not even sure he ever noticed the birthmark after I explained it. It had no bearing on my friendship with him.

My first year in middle school was wonderful, almost an extension of elementary. I was excellent in my studies and went into all of the advanced classes. Andy was doing great, I was doing great, my family was doing great. It was eighth grade that represented the turning point. Quite frankly, puberty set in. I began to get crushes on girls, and growing so fast that clothing lasted no more than six months and I kept bumping into things. I started playing more video games, and although I'm loath to admit it because I argue strongly for the benefits of video games, my grades did drop. Not enough to get me out of the advanced classes, but enough for me to worry. Andy was still my best friend, and we played video games together on the weekends.

In high school, my habits of procrastination began to take shape. Every so often, a combination of procrastination and writer's block would hit so hard that I could barely pass. All the same, these have been good years. Andy is still my friend; we're now seniors. I stand proudly at 6'4" and am still growing. I don't play any sports, although many have tried to get me to, but I love to write short stories and poems, play chess with my dad, read sci-fi or fantasy, or play video games. For a while, my nickname was south america (long nickname, eh), because one of the blotches on my arm looked like the continent. I was fine with the nickname, and besides it was too long for most people to use in conversation anyway.
I'm nearing the end of my senior year of high school. I've been accepted to State University of New York at Albany, where my older sister goes to (we're very close), and I plan to major in physics. I've no girlfriend, though I'm trying to work up the nerve to ask a girl out to the prom, but I have a devoted cat, whose purr gives me a feeling of deep profound contentment.

Notes:

During high school, I saw a movie called Princess Mononoke. It's an anime (japanese animation) from director Hayao Miyazaki (hopefully spelled correctly). In it, a man is cursed when he slays a demon that attacks his village, leaving a black mark that slowly spreads from his right arm, trying to control him and make him violent. It will eventually kill him, for there is no known cure. He sets out from his village to try to see the world without hate before he dies. At the end of the movie (hope I'm not ruining this for everybody), his curse is removed, but he is left with a pink stain on his right arm and hand. This was almost freakily cool to me, as it meant that (in my imagination) I was descended from a guy who fought demons and I inherited his birthmark.

One thing that I haven't yet seen reported on this site. I know I have PWS. I was diagnosed when I was a baby and I fit all the descriptions. However, whenever I am ill, my birthmark turns a lighter pink, and whenever I'm cold, it turns purple. I haven't seen this mentioned, so I just wanted to know if anyone knew of it.

Lastly, I was reading that my skin would likely become thicker and more pebbly with aging. I find that to be totally awesome. I want to be known as the red hand of doom in whatever field of work that I go into.

EDIT: I just wanted to add that I feel kind of selfish for that last remark. Looking at some of the posts in other threads, I can see that cobbling skin can completely uproot a persons life. I'm not going to delete it, my dream was to be kind of a super-hero of some sort, and I'm going to be honest about it, but I do feel sorry for those whose lives are badly influenced by PWS.
That's my story, thanks for reading!

nickbar 04-24-2008 03:58 PM

Jacob,

I so enjoyed reading your story. When I began reading it, my thoughts were "this guy should write a book!".... I really would encourage you to take your experiences and write write and write! I know my 10 year old son (you sound a lot like him) would love to read about a super hero with the birthmark from a demon slayer! I think an auto-biography (or simi auto-b) would be a great read as well. You have a lot of creative expression that youth (and adults) would enjoy. There are never enough great books for young boys! GO FOR IT!

And to answer your question: yes pws will change color with your body temp.

The cobbling and thickening of the pws can be an issue for some patients. It can be painful, ostosis, etc. (no worries...I think most people would enjoy your perspective on it)...

Take care and again...thank you for sharing your story!

RowdyBliss 12-03-2009 04:18 PM

Jacob, your story made me smile. You've obviously got a lot of pluck and some serious positive attitude, and that's awesome! Had I been your age, at your school, I totally would have crushed on you.

I imagine a lot has happened since you made this post a year and a half ago - you haven't really made too many posts since - and I'd be interested to hear what you're up to now with your writing. I, too, would love to see someone take the "red hand of doom" to a literary level. (I have a red foot of doom, but somehow, that doesn't sound nearly so dramatic or interesting... :p )

Anyway - hopefully you'll get this and pop in with an update.

Thanks for the smiles/laughs!

aby0007 06-19-2010 08:22 AM

i hve the huge pws on my right hand
 
hey jacob i read the completer story of your's ...and i found everything u wrote about ur life is pretty much similar to mine ..


All times are GMT. The time now is 01:35 AM.

Powered by vBulletin® Version 3.6.5
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.