Mr. Jake Goes To Washington

I'll be speaking at a lymphedema awareness/research benefit on May 2nd in D.C! I've never done such a thing, and my brain keeps telling me that I'm not inspiring enough to do this, but my brain says a lot of nonsense to keep me in my comfort zone, and frankly I've somehow never failed to move and inspire a crowd, and I'll be great.

There is also going to be a 13-year-old boy there with primary lymphedema, and I'm told he's going through a tough time. I was miserable at 13 with primary lymphedema. Most people are miserable at 13 anyway. When your whole body and face are hidden under a lot of swelling all the time, it takes junior high to an entirely new level of miserable. I am making damn sure that kid knows he's going to have a great lie, and that he's going to be one sexy mofo. Which means I have to have a great life - which I do - and I have to be a sexy mofo - which I am. When I actually be a sexy mofo.

I want the press there. I want the media there. I want this to be the first step in an ongoing lymphedema awareness campaign. If you know anyone in the media send them my way - I want to talk to them.

What happened to the documentary?

A production company contacted me earlier this year, saying they'd like to commit their resources to the project - lights, cameras, sound, editing equipment, and a team of interns to work on it. Great! Then the company lost their money and had to fire their interns, and no more production company.

Truth be told, I let the project fizzle out, for the same stupid reason I'm sitting on my hands about contacting the press - because I feel like I'm not inspiring enough to produce a documentary that will deliver the emotional impact I want it to have. I want people to walk out of that theater feeling connected to everyone else in it regardless of their circumstances. I want them laughing, crying, seeing things about their own lives. So my brain says "Jake, you're a computer programmer who oversleeps every morning and practically has a heart attack talking to a girl. How are you going to inspire anyone?" My brain, like I said, says a lot of things, and it does it to make sure I stay safe and survive. Thank you brain, I got it, now let's give a speech and make a documentary.

And film the benefit for the documentary! What a great idea - someone suggested that recently and I can't believe I saw them as separate things. So I need to get someone there with cameras to film it.

Google Timeline

History buffs, you will love this Google Labs project. Type a year into the Date field like 1968 or 1492, or a search term like "Susan Boyle", and view everything about it on a week by week, day by day or month by month basis - all the relevant articles and images from lots of online publications and wikipedia. Great for researching anything, or just browsing through time.

Google News Timeline

Butterfly: my latest article

Wrote an article for IBM Developerworks on a small PHP framework I designed called Butterfly, because it facilitates the transformation of XML via chains of XSLT stylesheets, and was inspired by the Apache Cocoon project.

IBM even designed a little butterfly graphic for it.

The big coup this time was that I finally, finally, got them to link directly to my website, because it's about a framework I wrote, so I created a page for the framework on my web site and linked to it from the article. Hello Google.

Ron Paul on the Federal Reserve

Another clear explanation by Ron Paul of how our monetary system currently works, in contrast to how it is intended to work as described in the Constitution, including why the dollar is collapsing.

Lymphedema in the Bible

An astounding tidbit from the conversation with my friend Suzie: Jesus cured a man with lymphedema:

1 One Sabbath, when Jesus went to eat in the house of a prominent Pharisee, he was being carefully watched. 2 There in front of him was a man suffering from dropsy. 3 Jesus asked the Pharisees and experts in the law, “Is it lawful to heal on the Sabbath or not?” 4 But they remained silent. So taking hold of the man, he healed him and sent him away. 5 Then he asked them, “If one of you has a son or an ox that falls into a well on the Sabbath day, will you not immediately pull him out?” 6 And they had nothing to say.

Luke 14:1-6 (courtesy of bible.org)

Dropsy is an older term for lymphedema:

Dropsy: An old term for the swelling of soft tissues due to the accumulation of excess water.

from medterms.com

The ultimate moral of the story is that it's okay to perform manual lymph drainage on the Sabbath.

aaaand another publication

Forgot to post this the other week - my latest opus has hit IBM Developerworks, a tutorial on creating a Google Mapplet, letting you add your own information to a Google Maps search page.

Who cares you say? Well, that's an excellent question. So far I'd say no one except IBM, my editor, me, and my bank. So that's at least four people. Special thanks to my coauthor Dave Wegman, who found the showstopping bug in my XSLT code at the midnight hour.

Viva la projet lymphatique!

The lymphedema documentary project is slowly but surely coming to life. I spoke yesterday with Suzie Burden, an amazing woman in Indiana who has primary lymphedema like me, has had symptoms since birth, like me, and is also completely kickass. Like me! It seems to come with the territory. We discussed many things, one that Sam Donaldson apparently has secondary lymphedema from lymphoma surgery, so I plan to contact him and attach him to the project. We also discussed various treatments Suzie has tried or is aware of, one being cold laser therapy, which was approved by the FDA for cosmetic purposes but not for lymphedema (and doesn't that take the cake. Our day will come!). Cold laser therapy is completely safe, non invasive and has proven highly effective in breaking up fibrous connective tissue in conjunction with a manual lymph drainage regimen. The accumulation of connective tissue over time (the body's response to swollen areas over time is to fill them with fibrous spongy tissue that is difficult to break down) is the main obstacle in a lymphedema patient's effective treatment. If cold laser therapy breaks it down, that's our golden ticket.

We discussed many things, one the emotional journey that all people with lymphedema seem to travel, including bouts of depression. I've met four or five people now with lymphedema since the start of this project over the summer, and there is a remarkable similarity not only in the depths to which it has sunk each of us, but also in how upbeat and powerful we all are now, after long periods of futility and isolation. It's a relatively unknown condition that effects a lot of people, significantly impairs quality of life, can be quite dangerous, changes the appearance of the body, and is generally damn depressing. But this woman Suzie teaches water aerobics - perfect for lymphedema, because the body is effectively weightless in the water. She also agreed to partner with me on the project. Woohoo! We have team!

We also agreed that this documentary could be one hell of an inspiration for people. The first goal is producing a trailor with high production value, telling a moving story in a few minutes. Something that could air on Oprah or some show like that, or perhaps even in a movie theater as a non-profit ad. Then we'll use that to raise money for the full-length documentary. Within 10 years, lymphedema will not only be a household word (or at least a word all doctors know for god's sake), but it will be covered by insurance and treatment will be considered a given, not something you have to fight for every time.

Viva la resistance!

warning: new carjacking scheme

Got an email from a police department about a new car theft scheme. When you first put your car in reverse and turn around, if you then notice a piece of paper or sticker on the rear windshield, do not get out to remove it - drive away first. The carjacker is waiting for you to get out of the car leaving the front door open and the keys in the ignition. Drive away first, then remove the sticker. - Jake

Another week, another publicaiton

And my third masterpiece of software genius has hit IBM Developerworks, this time an exploration of using XSLT and PHP's SimpleXML to separate content from presentation, specifically to render my personal resume as an HTML page. I kid you not - I managed to use part of my personal resume as the sample data in the tutorial, including a link to my web site right smack in the middle. It isn't a hyperlink, so no google ranking (I couldn't quite figure out how to get an actual hyperlink into the piece and sneak that past IBM's editors) but still a coup. Ha.

Ron Paul on the bailout

Ron Paul makes a lot of sense to me. Government manipulation of interest rates and the value of the dollar leads to unnatural boom market conditions which then collapse, as we're now seeing. This is Ron Paul on the current Wall Street bailout.