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This Day in My History

2000:  There's No Place Like Home
2001:  Media Frenzy
2002:  My Historic Breast
2003:  Come to the Faire
2004:  A Davis Happening

2005:  Research

"Boxcar Children"

Books Read in 2006
(Updated 8/29)

"Polynesian Dances"

Polynesian Dances

click here to download

click here for flash

Mefeedia Video Archive

My Favorite Video Blogs

Desert Nut

(for others, see Links page)

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Look at these videos!
John Denver, 12 Strings
Emmys Opening, Part 1
Emmys Opening, Part 2

The Night Charlene Tilton
Danced with Fred Astaire

Magic Wheel
Granny Hardcore

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Lordy, Lordy

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Support liberty and justice for all

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Cost of the War in Iraq

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31 August 2006

By the time I first met my friend Steve Schalchlin, he had been to the brink of death, had been passed over by the grim reaper, had written an award-winning musical, and was really doing all right, for someone living with what was still being called a fatal disease.

I remember the first time I met Steve face to face.  He was staying with friend in San Francisco and suggested we meet at a restaurant nearby.  I didn't know if I'd recognize him, but had no problem as this incredibly tall guy rushed up to me, huge smile on his face, arms wide open, grabbing me and giving me a big hug.

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We began to chat and we chatted nonstop for the next two hours.  At that time The Last Session was still touring around the country, sometimes done by local groups, sometimes with Steve in the lead role.  It had played New York, had won awards.

What I loved about Steve (and still do) is that he has such an infectious zest for life.  His journal (now his blog) is called "Living in the Bonus Round," because he decided that life was like a game show and that in a game show's bonus round, "time speeds up and the prizes are better."   He won his game show by cheating death, so now he's in his bonus round , where the whole world opens up to him.  He can do anything and it's all frosting on the cake.

His enthusiasm for everything still amazes me.   He's teaching himself these complicated video programs (it was because of Steve that I started writing Funny the World and it is because of Steve that I've started making videos), he has taken a militaristic approach to his health care, doing everything he needs to do to be as healthy as he possibly can be.  He runs every morning.  He watches everything he eats.  He has friends everywhere, from well known show business celebrities to medical luminaries, to his friend Chuck, the homeless guy in the neighborhood for whom Steve saves his soft drink cans.

In the 10 years since he nearly died, he has written two musicals with his life partner, Jim Brochu (tho Jimmy has been in theatre most of his life, Steve had no previous experience in writing for musical theatre whatsoever).   Both musicals have played New York, and both have received prestigious awards.  He has traveled around the country doing AIDS education on high school and college campuses.  He was the Jonathan J. King Lecturer at Stanford University, speaking to medical professionals about what it feels like to be a patient with a terminal illness.

I love it that he and Ned (and Ned's friends) are friends and that he gets together with them occasionally to play music.

You rarely see Steve without a huge smile on his face, without some exciting tale to tell.  It's difficult, sometimes, to remember that he still lives with AIDS, that he still has to take his daily medication, that the medications could possibly some day stop working and he could die.  But then he could just as easily get hit by a bus...or I could have that semi roll over on top of me.

Today, on the video blogging list that I belong to, someone posted a link to a vlog by a guy who calls himself "pathetically lingering with AIDS."  He has posted several videos to show the reality of AIDS and how pathetic his life is.

Here is a guy who has survived twenty years with AIDS and who is wasting his bonus round bitching about his lot in life.

He is the Eeyore of the AIDS community.

I watched his videos today (a couple are pretty explicit, so I'm not going to link to the site).  In one video, this man, who wisely chooses not to reveal his name or his location or anything else about himself (unlike idiots like me, whose life is an open book!), graphcially shares his his morning routine, which consists of taking his "AIDS cocktail (4 pills), then sitting on the toilet (while he smokes a cigarette), then crawling back into bed until 3 p.m.

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This is living??

I contrast that with Steve, who is up at the crack of dawn (or pre-dawn), reading blogs and working on video or writing music and IM'ing with me and half a dozen other people until time to get coffee for Jimmy, then going off for his morning run, before returning to the house to work some more.  Somewhere in there he has his own AIDS medications at the scheduled times, but there is no production number about it.

It's like anything negative in your life, whether illness or injury or loss ... you have a choice.  You can get up in the morning and greet the day with a smile, wondering what sorts of things you can do to enrich your life, or you can take your pills and crawl back into bed and feel sorry for yourself.

Whether I am living in my own bonus round or not, I choose the latter.  I could curl up and cry all day long because of David and Paul, but what would I have to show for my life at the end of it if I did that?  What a waste of a life!

I'd rather live like Steve, finding something new to learn all the time, excited about the things I see around me, and getting the most out of life rather than sitting in a darkened room smoking a cigarette and feeling sorry for myself.

Come to think of it, I think I've just pretty accurately described my mother and my father.  At 87, she still finds excitement every day of her life; he gave up living somewhere in his 50s and sat in a corner, feeling sorry for himself, and waiting to die, which he finally did, at age 72.  What a tragic waste.


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(Steve doesn't need the eye patch any more)


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