BRIEF BLOG INTRO:
I'm a man on a mission. A mission to convince everyone I meet that life is worth living, no matter how many obstacles are placed in your way.

I'm a singer/songwriter and actor from Texas "Living in the Bonus Round" in New York City. That is my way of describing how I feel having cheated death. (In a game show, the Bonus Round is where time speeds up and the prizes are better.) Accepting my death changed me. Now, I'm consuming life as quickly and as fully as I can, while still taking time to breathe and appreciate every single day as an utter miracle.

Last year, I turned 60 and I had a set of goals, all of which came true, including composing -- and performing in -- a Mass, recording a solo album (selling 10s of copies), headlining to a sold out house at a major night club in New York City and played the lead role in a staged reading of a play not written by myself. I update a few times a month these days, and I don't spam. So it's easier to keep up with me by following by Email. When this blog began, it was to track my death. I'm told it was the first AIDS blog. You can start at the gruesome beginning if you want. Or just jump in and maybe we can learn some life lessons together. Welcome to the Bonus Round. I'm Steve [SHACK-lin].

Wednesday, May 31, 2006

10 Years Ago: Crixivan & LA Times.

On May 21, 1996, I note that a new drug has suddenly arrived in the mail. An experimental drug called Crixivan. I note:
"I received...my first shipment of Crixivan--the new, even more potent protease inhibitor. I was thrilled, but it does come with some tough rules. First of all, I have to take it on an empty stomach three times a day--every eight hours, and I can't eat for a full hour after taking it. But I also have to take Saquinavir three times a day on a full stomach.

"Now let's see... if I take the Crixivan at 6, 2, and 10, then I'd have to eat (and take the Saquinavir) at 7, 3 and 11. LUNCH AT 3? Dinner at 11? But I suppose I could eat lunch at 12, take a snack at 3 with the Saquinavir, dinner at 7, Crixivan at 10, and eat a snack with the Saquinavir at 11...

"The Pharmacy also included a little form to fill out to report to them if I'm late or if I miss a dose. This means I should carry around a couple of doses in the car with me just in case I get stranded somewhere.
Since I was already been taking a different experimental medication, Saquinavir, it's really interesting to me now to note, looking back, how unremarkable my diary entry is about this one. But of course! How could we know that this one was going to be any different from any of the others? None of them were helping me so far, so I made little note of it except to say that it arrived and that it was going to be a total pain in the ass to take.

A little background: Crixivan was the newest and most potent drug for AIDS. It was having remarkable success in the early testing. So much success that they decided--thanks to the pressure of groups like ACT-UP--to fast track it to the market and bypass the normal testing procedure. Until Crixivan came along, people were dying by the hundreds every week. The newspapers in the larger cities were filled DAILY with columns of obituaries of dead gay men like myself.

It was a Holocaust. An entire generation of gay men were literally wiped off the face of the earth, and I was next in line. Many straight people were still unaware of what it meant, but an individual could lose 30, 40, 50, 100 of their friends almost overnight. Reader, picture your circle of friends as you read this. See their faces. Now imagine all of them dying before your eyes. Imagine yourself attending funerals on a WEEKLY basis. That was the REALITY of AIDS in the United States 10, 15, 20, 25 years ago.

Now, imagine that all of this is happening around you and it's barely mentioned in the press or by the President. La di da. All your friends dying. La di da. This is the rage that powered ACT-UP and Mobilization Against AIDS; people like my friend Ken McPherson who, out of compassion and desperation to see something being done, dropped his entire life to move to San Francisco and stand on a street corner behind a folding table handing out literature, form candlelight marches and protest loudly to get someone, somewhere to NOTICE.

But you see, we were invisible. We were just faggots in San Francisco, LA and New York. The Jerry Falwells and the Pat Robertsons were telling their congregrations that we deserved this disease and that we should be left to die. They were using their political power to make sure the government paid as little attention to the problem as possible. From their lofty pulpits of power, they pronounced US immoral, forgetting that Jesus stayed down in the trenches with the sick, the dying, the lepers and the poor. (And they wonder why so many people see them as clowns and hypocrites.)

Looking back, though, 10 years ago, I was just trying to make it from one day to the next. Several other things happened on May 20. Al Martinez featured me and my music in the L.A. Times. It marked my first appearance in the press. A beautiful article called "Just One More Song." He wrote:
"I have Schalchlin's music playing in the background as a reminder of both the haunting quality of his melodies and the impact of his words. It plays upon a corner of the mind like a child's whisper...I heard about Schalchlin through a message on the Internet that described both the man's talent and his struggle with acquired immune deficiency syndrome. He was yet one more gifted artist spinning down into an abyss of choking darkness.
"It has been weeks since I interviewed Schalchlin. I didn't use his story immediately because I have written so much about AIDS and its victims that I wasn't sure I wanted to write another column so soon. There is much to observe and to chronicle in a county of 9 million, and the responsibility of my observations reaches beyond those with the terrible, killing malady.

"But in the interim I spent a few days in New York, during which I saw the Broadway performance of "Rent," a magnificent rock opera about youth and AIDS and living and dying...

"Later, walking through a light rain that fell over the city, I thought about Schalchlin, about the disease that eats like acid into our world family and about the need to employ whatever means available to remind everyone of its growing presence.

"It's the reason Jonathan Larson wrote "Rent" and the reason Steve Schalchlin wrote "The Last Session" and the reason I'm writing this. Further delay is simply not possible..."

10 years later, Steve Schalchlin is still alive, but the AIDS Holocaust lives on. Medications have changed our lives here in the First World, but in Africa and other countries where money is scarce, education is spare, and people are still being fed lies and myths about AIDS, death rages on. Al Martinez's beautiful article ends with this:

"We are, after all, a family in the broad sense of the similarities that unite us, and if it takes music to alert us to a plague that threatens our house, then let the band play on.

"And let the family, for the sake of us all, listen."

Tuesday, May 30, 2006

10 Years Ago: Last Cruise of My Life?

I have a little catching up to do on my "10 Years Ago" series. Lots of things were happening in May of 1996. First of all, as you might recall from the last installment, we were on our way to Alaska, both of us thinking--but not saying out loud--that it would be my last cruise. A nice way to go out. I did, however, set a goal of gaining some weight. I decided to eat/eat/eat until I could hold no more. On the first day, we met a gay couple who had been together for 52 years, who had met as soldiers during WW2. Jim got very misty and said to me, "I want 52 years with you!" It prompted me to write a poem called "52 Years" which ends with a silly punchline.

The first thing I did was, between taking long naps because I was feeling really ill, to find the piano and start playing and singing. It was always my best therapy. One day I was sitting there playing and singing the songs from TLS, eyes closed, having my own private party. Suddenly, I looked up and saw that a little Japanese family had entered the room and sat near the piano listening. The "grandmother" was busy doing something with her hands.

"Finally they got up to go out. I didn't really feel like saying goodbye or breaking the mood of the moment, so I kept on playing and ducked my head keeping my eyes closed. Then I looked up and the younger of the two women was standing right in front of me. She took a beautifully intricate gold foil origami bird out and put it on the piano. She said something Japanese with a very stumbling, "Thank you," and they left.

"I was so touched, I think I cried."
The rest of the cruise was tough. I know I had a good time but I was getting sicker and sicker. I even stopped taking notes. My diarrhea was out of control, but I just kept eating and eating determined to gain something, anything.

But when we got home, I got on the scales and, even after all that food, I had lost another pound. That's when I knew I was seriously in trouble...

Barcelona Picture Book


Our trip this year began with a very long flight to Lisbon. We were so tired, we ended up staying aboard the ship instead of exploring Lisbon. But since we'd been there before, we didn't feel too guilty. Our next port was Barcelona. Again, we'd been there last year, so we didn't knock ourselves out trying to see everything, but instead, just walked up the main thoroughfare near the port.

There were lots of street performers.















As you can see, satan was smoking a cigarette while putting on his costume.

























The guy sitting down reading is a real live person who didn't move a muscle. He had a little tip jar out in front. Lots of the performers in Barcelona do this kind of thing. I think it's really fun to see. His make-up is amazing.


The last place we found was this beautiful old plaza where we found some friends from the ship and then sat around just enjoying a cool beverage while the sun went down. It was beautiful.

Petrina Johnson & The Secret of the Great Big Hall

I fell totally in love on our cruise to the Mediterranean with a singer from London named Petrina Johnson -- pictured left as Judy. (A frequent stage actress and performer on London's West End, she is a very popular singer on the most prestigious cruise ships and cabaret clubs in the world. It's no wonder. Not only does she have a versatile and powerful set of pipes, but she is a brilliant entertainer and comedienne who can imitate some of the greats, including Petula Clark, Shirley Bassey, Judy Garland and Liza Minelli, just to name a few -- her Julie Andrews is side-splitting. But more than that, she sings with absolute heart and commitment.)


So, after seeing her first show, I did what I always do when I meet a new singer. I walked up to her and said, "Hey! You should be singing my songs! In fact, I just wrote a brand new song and I think it would be perfect for you."

Now, normally, when I make this pitch, since I'm not exactly the most famous person in the world, I get a frozen smile, a timid "um, sure, I'd love to hear it" followed by said singer avoiding me the rest of the cruise.

Not Petrina. She said, immediately, "Fantastic! What's the name of it?"

"It's called 'The Secret of the Great Big Hall' and I co-wrote it with my friend, Honey West, who's a singer in Chicago."

"I love the title. Give me just a moment to change."

And she dashed off, changed clothes, and we met in her room where I brought my laptop and she immediately put the demo onto her computer.

"It's brilliant!" She squealed. Two days later, we met in the piano bar.


She said, "I've been listening to it non-stop for two days. I've written the words out, too." Then she grabbed her notes and we started working on it. The thrill of working with a true professional is that they know their voices and what they want without you having to prompt them or fuss with them. We tried several keys and then worked out a key change and a big, fat ending.

Then I turned on the camcorder and just started taping our rehearsal so I wouldn't lose any of it. We had another rehearsal after that, then on our last day, after the fnal performance of her show, I said to her, "Hey! Why don't we do the song in the piano bar for all the passengers who might still be up and around?"

And we did. Later, I mixed together a video, combining the live bar performance (which had less than optimal sound) and the rehearsal (which sounded better) and some photos and video from our trip and here it is. The Secret of the Great Big Hall:

Monday, May 29, 2006

For Memorial Day





Watch the Video

Jetlag, Free Press & Mourning.

Yesterday was one of those days impossible to describe. Mix in the grief you feel for someone who was as close as any brother, the compassion you feel for his spouse and the walking-in-syrup / soup-in-head feeling of first day jetlag when your body is awake but thinks it ought to be sleeping, then sleeping when it wants to be awake, and you have a recipe for Fried Zombie on Couch.

Your eyes are red with tears and burning for so many reasons, you can't keep track of them. You just sit staring dazedly ahead thinking "Am I awake trying to sleep or asleep trying to be awake?" "Is it true that my brother is dead or was that a nightmare that won't let go?"

Another thing that confuses you is that you come out of the vaccuum of 20 days of ship life, which is defined by "what port are we in today?" and "what's the dress code at dinner tonight?" and "Oh, did you hear the news? There was a bombing or something somewhere. Yes, I'll have the pasta as an appetizer" and find out there's a world of TV and gossip they really don't care about in Europe. I went from hearing about how some bizarre hard metal band from Finland that dresses up like animals won the Eurovision Song Contest ("That was a song?") and Germany is hosting the World Cup ("The World Cup? What sport is that?") to hearing that gray-haired guy won on American Idol? What happened to the bald kid? The hippies won The Amazing Race? What? They won because the last test needed brains? Everyone in Hollywood has had a baby now?

The other Bizarro World of news happens on our ship because the only two news channels we get are CNN International, which rarely discusses US media obsessions, and Fox News, which is apparently a cable news channel in America owned and run by the Republican party (as near as I can tell). We were treated to such headlines as "Will CIA leaks disrupt the stock market?" to "How can Hillary be stopped?"

Wait, this was my favorite. Apparently, on this "Fox News" there is a commentator named Neil Cavuto or something. His "beat" is the stock market, but he has a little Jerry Springer-like "From the heart" masterpiece at the end of his "news" casts. He began with the assumption that Madonna and Dan Brown were "denigrating" Jesus (which neither of them do) and marveled, personally appalled at the fact that "denigrating Jesus" makes money. He said this:

Now, Jesus was a good man, and, for many, a good savior...


"For many, a good savior?" What level of junior high Pandering 101 did this person graduate from? He also failed to note that Falwell, Dobson, Bauer, D. James Kennedy, Pat Robertson, George Bush, and Tom DeLay had been denigrating Jesus and making billions of dollars off of the practice for years.

Ah, but that's freedom of the press, isn't it? I suppose while the President of Iran is shutting down newspapers that critize the government too much, it only stands to reason that America would be broadcasting a non-stop propaganda machine designed to criticize freedom ("Does the press help terrorists by being too free?") and promote business interests above the free exchange of information.

Or am I just dreaming it all in a daze of jetlag and mourning?

Sunday, May 28, 2006

Death In Venice

When we arrived home from our trip to Europe, there was an urgent phone message from Dick (Dickie) Bell, one of Jim's lifelong actor pals. The message was simply to call. We left a message for him, saying we'd be up and that we wanted to hear from him ASAP.

Jim looked at me and said, with horror, "It's Jimmy Rilley. The last time Dickie left me a message like that, George had died." (George was Dickie's longtime partner).

When Dickie finally called, he confirmed the news. Jim wept softly down in the living room as he received the news. I was up in my loft, so I could hear him but I had no feelings about it. My heart felt dead and my eyes were dry. I wasn't even poked in the chest with sadness or recognition. No shock. No feelings whatsoever.

I chalked it up to the fact that I was so dead tired. 12 long hours of a plane trip from Germany, making it about 3:00AM by our bodies, had left me emotionally and physically numb.

Turns out he died the day we left to go on our trip 20 days ago. But Jimmy's partner/husband, Bart, instructed Dickie to wait on giving us the news, so that we would just enjoy our time on the ship and in the Mediterranean.

"It's so funny," I heard Jim say, "but he was on our minds the whole time. We even shot a bunch of video just for him, addressing things directly to him -- 'If only Rilley were here.'"

Jim was singing selections from "Do I Hear A Waltz?" while standing on the Rialto bridge in Venice or sitting at a open air cafe drinking latte on top of a cliffside city in Sicily. Our plan was to make a whole video just for him because he has been physically disabled for a number of years from a horrible massive stroke that paralyzed the right side of his body.

For a long time, he had been able to move slowly using a cane, so he was still able to go from his home in Westchester to see his beloved New York theatre.

Rilley was the ultimate show queen. His favorite musical was Sondheim's "Follies" of which he saw nearly every performance of the spectacular original production.

But unlike the lead character in the new (and totally hilarious) Tony-nominated sensation, "The Drowsy Chaperone," who plays a record and "sees" his treasured shows come to life in his apartment, with actors springing from walls and entering from the refrigerator, when Rilley told you about his favorite musicals, he would perform he entire show himself -- all 300 and some pounds of him -- by grabbing sheets, towels, pillowcases, lamps, and other assorted props and draping himself in them, perfectly recreating the costumes AND the choreography.

There's a legendary (and true) story about Rilley and "Follies." It was the 70s. I think the show had long ended its brief, commercially unsuccessful run. And Rilley decided he was going to schedule a performance in a friend's apartment -- "scheduling" being a formal term for what was more like, "Are we drunk enough to do 'Follies?'"

(The other term for these little costumes events was "Sheet Class.")

Rilley is literally doing all the roles, which consist of a number of show girls who walk around the stage like ghosts. He remembers every single dip, turn, head tilt and wrist twist. You have to picture this enormous man dressed in sheets and towels to simulate tall ghostly looking dead show girls. The cast album from "Follies" blaring.

Suddenly, there was a knock at the door.

A voice, "I heard 'Follies' was here tonight."

In walked Michael Bennett (the celebrated man who directed and choreographed 'Follies,' and, later, 'A Chorus Line').

My Jim said Rilley looked petrified. Here was Michael Bennett himself.

He walks into the room, plops himself down in front, and says, "Start it over from the beginning."

Rilley starts over. He doing the actors, he's lip-synching the songs, he's hopping all over the place trying to do all the chorus girls.

Suddenly, Michael Bennett leaps up and shouts, "Stop! I won't let you do this any longer!"

Everyone froze.

"NOT WITHOUT ME!!" And he jumps up, grabs some sheets and joins in on the choreography. He couldn't believe Rilley remembered every step.

Rilley was like one of the graceful hippopotamuses you see in the Disney cartoon. He had all this bulk, but he could almost go up on point and make you think he was the most graceful man in the room when he danced. It was impossible to be in a room with him and not be laughing and joyful just at his very presence.

But then it happened. He was at a friend's apartment alone when he fell. It took him forever, but he had to crawl across the floor and reach up to unlatch a bar that had been placed in front of the door to keep it from being opened. The police and emergency units were trying to get in.

By then, we were already living out in California, so we had no chance to see him on any regular basis. Once, when Jimmy was doing something in New York, I took the train out there myself just to sit with him. He had great courage, and he spent a lot of years fighting for life, going through physical rehabilitation exercises -- always painful, always intense -- which always seemed to fail and leave him a little worse off every year.

Last time couple times I spoke with him on the phone, he said to me, "Stevie, is it okay to want to die? Did you ever want to? I just don't think I can keep going like this."

He had just fallen again, and was now completely incapacitated. His lover, Bart, ever faithful, always by his side, never waivered; never faltered.

I loved their relationship. For the longest time, Rilley was having love troubles. He blamed it on being fat or being unlovable. But Bart. This totally sweet little Jewish guy just fell for Rilley like a ton of bricks. I had said that Rilley added glamour to Bart's life. Whatever it was, I adored them as a couple and I adored how much Bart really l0ved and cared for Rilley.

The word is that he had another massive stroke. Bart was there.

The thing that makes me sad and, finally, brings tears to my eyes is not so much the fact that he has died -- everyone is going to die someday -- but that he struggled so much in his final days. For a guy who was so light on his feet, who loved being physical, who loved musical theatre, who never failed to throw just a bit of glamour and class into every room he walked into, it only broke my heart to hear him telling me how difficult it was, how heartbroken he was that he simply had no power over his legs and hand anymore.

He would speak to me on a heart level. "Steven," he would say when got serious and it was just the two of us on the phone, "you've been through this. You know what I'm feeling here."

I would tell him that I did, but I don't know if anyone could. I could tell him I remember being so sick that I could have imagined wanting to pull the switch. But I don't think I ever was in his shoes. Not really.

I'm sorry, Rilley. I couldn't really know what you were going through. Right now, as I sit here typing away, my eyes are starting to burn. It is dawning me what this world will be without you. We have some old videos and things somewhere around here. Was it the one where you recreated all the costumes from "Coco" while Jim Brochu sat there lip syncing for Katherine Hepburn? Or was it your brilliant and almost chilling recreation of Bette Davis in our 3-minute version of "Whatever Happened to Baby Jane?" Or do we still have that murky tape of you doing "Follies" over at Midge's house? Or the gypsy dance performed with 20 shirts tied to your waist with a belt?

I think what we'll do is cut them all together, put you back up on your feet and watch you dance again.

A Jimmy Rilley Film and Dance Festival.

Here's to you, Rilley. You were there on the SS Galileo the day Jimmy and I met 21 years ago this weekend.


You are an icon of theatre for me. No star looms in my mind larger than you and your brilliant creative spirit. I cannot imagine what it must be like for you now to be hanging out with Michael Bennett, the man you idolized. Dance across the stars, my friend. We who are bound here on earth salute you.


Saturday, May 06, 2006

On Hiatus until May 28th

I will be taking a break from this blog for 20 days while Jim and I travel. He's doing another lecture series and I'm going along for the ride. I'll leave the comments section open, so please feel free to chat with each other. I'll try to check in every once in awhile but mostly, I'll be out of reach. I'll come back with new songs and new videos. Thank you everyone for reading and participating.

When I get back, we'll start back with our 10 years ago series and I'll tell you the whole background story as I finally hit rock bottom, physically, and we take drastic steps to save my life -- and then a little miracle comes in the mail and more miracles happen on stage. Stay tuned. The best is yet to come!

Thank you. Oh, and here's your thought for today:

You're not creating your future. You're creating your past.

Steve (and Thurber & Steinbeck)

Jim stars as Zero Mostel in LA beginning in July

My beautiful partner, Jim Brochu, will be performing as Zero Mostel in his own brand new one-man play, "Zero Hour" beginning in July here in Los Angeles at the Egyptian Arena Theatre, 1625 N. Las Palmas Ave. in Hollywood. It's going to be a terrific production. We've already had three staged readings and all of them were really successful and powerful. Zero Mostel, apart from being one of the funniest men on the earth, was also hounded by the House Un-American Activities Committee, blacklisted for supposedly being a "commie," and still went on to win Tony Awards and become a comedy icon.

This is going to be fun.

Friday, May 05, 2006

Connected

I have now made a music video for "Connected" from The Last Session. The next in my ongoing project to create a video for every song from the show. This was the very first song I wrote for the show. Writing this song literally saved my life. When I wrote it, Jim noticed that I was sitting up stronger, breathing more easily and coming back to life. So, he began giving me "homework" -- writing assignments as a form of physical therapy.

Those writing assignments became a list of songs which became a musical. As I continue looking back 10 years, we will soon be reaching the time when the first workshop of The Last Session begins to come together just as I'm hitting rock bottom, physically. We both come t0 life together. The best part of the story is yet to come! Here's where it all started:

Connected
Click here to play the Quicktime version.

Here for the YouTube flash version.

Revised HIV Treatment Guidelines

HHS Panel Revises Guidelines for Antiretroviral Treatment
[May 05, 2006]
From the Kaiser Network

An HHS panel on Thursday published revised guidelines on antiretroviral therapy, including recommendations for treatment interruption, drug-resistance testing and HIV/hepatitis B coinfection PharmaLive.com reports (PharmaLive.com, 5/4). The guidelines advise newly diagnosed HIV-positive adults and adolescents to be tested for strains of the virus that are resistant to antiretroviral drugs. The revised guidelines also suggest that people taking antiretroviral therapy should avoid interrupting their treatment, based on the Strategies for Management of Antiretroviral Therapy trial (CQ HealthBeat, 5/4). The SMART trial, which was conducted by the National Institute of Allergy and Infectious Diseases, finds that participants who took antiretroviral drugs on an irregular basis were more than twice as likely to experience increased progression of the virus or death compared with those taking a daily treatment regimen. Patients taking episodic treatment also were more likely to experience cardiovascular and kidney complications, as well as liver disease (Kaiser Daily HIV/AIDS Report, 2/8).

Damn Those Triglycerides!

I had actually lost my beautiful and talented endocrinologist, Dr. Ruchi, when the clinic she was working for shuffled around and changed offices. So, I went for four or five months without seeing her. Finally caught up with her last month where she put me through a battery of tests and today we looked through the results to talk about what to do now. There was good news and not "bad" news, but things I needed to do to improve.

(Just before she came into the room, I looked over at my folder and read the report she made on my last visit. She described me as a "highly motivated patient" who she felt would follow through on instructions to exercise, etc. I liked that: highly motivated. I love reading my charts.)

The good news is my liver functions are great. My Graves disease is still in a kind of remission. The brain is still sending out hormones to boost production (so that level is high) but the T3 and T4 levels are normal, so it's doing its job. The problem is in the area of lipids and pancreas functions. So far, no pancreatitis, but I'm throwing off way too much protein (in my urine). We're going to double my blood pressure medication (which, in all this fury of information I forgot why -- it has something to do with relieving pressure on the pancreas or the kidneys or something) because I had 140/80. The 80 is okay but she wants the upper to be under 130.

Though my overall cholesterol is within normal range, my triglycerides are way back up to over 600 and since I'm already on Tricor for that, she said we could increase the dosage, but she would prefer that I get my ass back out on the street and do more exercising, which is what I've been slacking off on. (Off on? Is that English?). I hate exercising, and I had a great routine there for awhile, but I lost it. That's why things have gone a bit awry.

My blood sugar glocose level (A1c) one month ago was at 7.2 which is on the high side. So, this past month, she ordered me to get back into the exercise routine (which I did in dribs and drabs going out fast-walking every other morning). Today the level came back at 7.0. She was happy about that but said she'd love to see lower -- as close to 6.0 as possible.

I want to be a good patient. I really do. I want her to see me "highly motivated." I swear. And I am, but the truth is I'd love to just TAKE A BREAK from thinking about all this stuff everytime I sit down to a meal. I want butter and cream. I want chocolate cream pie.

But, alas, I have no chance for that kind of luxury. The Graves Disease affects the blood sugars which affects the lipids which affects the kidneys and pancreas which affect the liver which affectss... It's all related. Slack off on one thing and the other things fall like dominoes. So, it's back out onto the streets I go. And time to feed the cats. But what I really want is pie. Lots of rich, creamy chocolate cream pie, a substance I can never eat again for the rest of my life.

Well, maybe one little bite here and there. All work and no play makes Steve a dull boy, you know.

Thursday, May 04, 2006

Chuck's Fine

I saw Chuck, my homeless veteran friend, this morning on his daily rounds of picking up cans and bottles (which he calls "California Gold"). I gave him two big bags of bottles and cans and we chatted for awhile. I asked him how his court date went and he gave me a totally disgusted look as he hauled out a yellow sheet of paper.

"Look at this," he said, half-laughing.

I looked at the paper.

"See there?"

I saw a line that said "M 30."

"That's my fine. 30 dollars. But I owe them $249 total for all this other shit."

"WHAT?? What else is on here?" I grabbed the paper out of his hand and looked at it. (If you click on the image to the left, you can see the items, also.)

"That's what I'm trying to figure out. Hell, I had the $30. Or I coulda just done five days in jail or something. This is ridiculous."

I looked at it. $30 dollars for the fine. "$95 dollars for the court appointed lawyer? Are you serious? You have to pay $95 for the lawyer on a $30 fine? What's this other stuff?"

He said, "Turn the paper over. All the abbreviations are there."

I turned it over.
$35 installment fee (EIA).

PI is a Penalty assessment: $17 for every $10 of fine for a total of $63. Plus $6 for something and then another $20 for something else.

A grand total of $249 for a $30 fine for grabbing an empty Coke can off the wrong trash bin; one that was set up intentionally to entrap homeless people who are scavenging for food and shelter money. (Chuck does have a place to stay. It's doesn't have cooking facilities, but it does have a place for him to sleep and keep all his earthly possessions safe from other, more desperate street people.)

He grabbed the paper back and just laughed his Chuck Laugh, head tilted back. Then he opened his wallet and showed me more tickets. "Look here. I got a bunch of citations. They didn't even ask me about them at the court house."

"So what happens now?" I asked him as he stuffed everything back into his wallet and get ready to continue on his route.

"Same thing that happens every day, " said with a big grin.

And off he went down the road looking for another bin full of California Gold.

Wednesday, May 03, 2006

Salvage Therapy

In a story at the Wall Street Journal website, which is giving 10 free days of access, there is a story about "salvage therapy," which is what doctors resort to when an AIDS patient has become "immune" to all AIDS drugs. (Or, more specifically, when HIV has become immune to all current AIDS drugs.)

Steve Kovacev, a sinewy 52-year-old from Truro, Mass., has run the Boston Marathon and sailed in the Transpacific Yacht Race from Los Angeles to Honolulu. Neither event comes close to his current competition: a race for his life.

Mr. Kovacev has AIDS. He has used all the drugs available to fight HIV, the virus that causes the disease, but now almost all regimens have lost strength, and his virus is on the upswing. His plight places him in an unenviable class: the estimated 40,000 U.S. AIDS patients whose illness isn't responding to treatment. As a last-ditch effort, some of these people -- Mr. Kovacev included -- are turning to a regimen known among AIDS patients and doctors as salvage therapy.

In general, salvage therapy refers to any treatment devised by a doctor to save a patient when all other options have failed. There isn't a single recipe for salvage. Some AIDS physicians return to older drugs to wring out a last drop of efficacy, while others bid for access to experimental agents in a desperate attempt to bring the spiraling virus under control.

Today there are about one million people living with HIV in the U.S., with about 40,000 new infections a year. In 2004, the most recent year for which statistics are available, 15,798 people died from AIDS, down sharply, thanks to new AIDS drugs, from 51,000 in 1995. Hepatitis and drug toxicity contribute to deaths among HIV patients. Because of salvage therapy, most patients with drug-resistant virus are, for now, hanging on.

Even with optimal treatment, Daniel Kuritzkes, associate professor of medicine at Harvard Medical School, says, "we've only changed the slope of the disease progression, not halted it altogether, and eventually they do run out of options."



It's that last paragraph that I hate. Eventually, he says, everyone will run out of options, and the virus, so vicious in its ability to mutate, will become immune to all the meds. That's why I get monitored so often. Blood tests every month. Mountains of pills taken on a very strict timing regimen.

The article goes on to state that much of the problem of why the drugs fail is that many patients swap to new drugs as soon as new ones hit the market. So, the virus evolves until there are no more options. I've not changed drugs much. I'm still on one, 3TC, that I've been on almost from the very beginning. So, my practice is to stay on what works until it stops working.

And, so far, so good.

10 Yrs Ago: RENT & Jonathan Larson

From May 3, 1996 comes a very emotional moment:
"Thursday night on 48 Hours, a TV show here in the States, there was a story on the new Broadway show, Rent. It opened off-Broadway to sold-out houses, opened on Broadway and won the Pulitzer Prize. The man who wrote it, Jonathan Larson, however, died of an aortic aneurysm the night before it opened. He never saw the success it would go on to enjoy. I could tell Jimmy was shaken up a little by the story as he worries so much about me."
Jim and I never talked about me being dead, or dying. The subject never came up. As Gideon say in The Last Session, "You're Irish. And If the Irish don't talk about something, it doesn't exist."

So, I remember this moment as the story played out the TV. I could see him visibly shaking as "the thing we didn't talk about" was being talked about. The elephant in the room had just stood up and was knocking pictures off the wall and crushing the furniture. I had to say something. I couldn't let it hang. We would have to talk about it. So, I handled it like we handle things. I threw in a punchline!
"I shouted to him, 'Don't worry. I'm gonna see our show open. I'm too vain to miss how much the world is going to love this.'"
I was just blowing hot air, of course. At that point in time, TLS consisted of a script and a 99-cent tape from Radio Shack. We hadn't even done a workshop, much less put together a plan for a New York production. Still, I dreamed on. I wrote:
"I have already seen the opening night. I have already accepted my Tony. The victory has taken place in my mind."
And it was true. They call it "visualization" now. But, for me, I think somewhere in the back of my mind I knew death was hovering, so I defeated it by accepting my Tony Award mentally. I was already there for opening night. The victory of The Last Session had already happened in my mind -- after this after one staged reading! But time speeds up in the Bonus Round. There was no way I was going to let this virus defeat me.

Tuesday, May 02, 2006

Roswell or Buna?

My brother, Corky, who imagines himself to be a laugh riot, sent me this photo of an alien, comparing it to the image I made of myself for the video to "The Group."

He was so proud of himself, he had to call me on the phone to gloat and revel in his sense of humor.

Okay, he wins. I admit it. It's funny.

Spanish National Anthem, Part 3


The blog "Think Progress" has an interesting post today about the Spanish version of the national anthem. President Bush, 4/28/06:

"I think the national anthem ought to be sung in English, and I think people who want to be a citizen of this country ought to learn English and they ought to learn to sing the national anthem in English."

But in his book American Dynasty, Kevin Phillips notes that during Bush’s first presidential campaign, he would often sing the national anthem in Spanish. From pg. 142:

When visiting cities like Chicago, Milwaukee, or Philadelphia, in pivotal states, he would drop in at Hispanic festivals and parties, sometimes joining in singing “The Star-Spangled Banner” in Spanish, sometimes partying with a “Viva Bush” mariachi band flown in from Texas.
I don't usually do that much political stuff, but I once lived for a summer in Mexico. I love the Spanish language and I especially love the Mexican people. All this racist right wing crap is pissing me off.

10 Yrs. Ago: The Cyberworld Finds Me.

It was on May 1st, 1996, that the larger cyberworld found me. Up until then, most of my readers were family and friends. My diary postings were mainly for them, though a few people had found me by doing websearches on the word "AIDS." But on May 1st, ten years ago, I was named "Isotopically Cool Site Of The Day". What this did for me was it brought into my circle of friends and acquaintances other people with AIDS, caregivers, physicians, musicians, gay folk, straight folk, religious folk, and, yes, cool folk. (Looking at their site, I see they didn't archive this category designation, so I didn't quite make the A-Team of Cool, but still...)

I also note that Jim had been given an opportunity to lecture onboard a cruise ship to Alaska, which would start in about a week. Given how sick I was, I remember thinking that I would give the diarrhea meds one last push to help me gain weight -- and that, on the ship, I would eat and eat and eat. My goal was to focus on gaining a single pound. Just one. Just to prove that my body could do it. Given the abundance of food on a ship, I felt I could relax, enjoy the beauty, and just concentrate on getting better.

What Jim was thinking -- what everyone was thinking except me, because I just refused to entertain these kinds of thoughts -- was that this would be my last cruise before dying. Or maybe I did think this. I don't remember. What I do remember is that I had this massive Will to Survive. If you look at the entries, you'll see that I was still going one day at a time. If I had a good day, it meant I would survive. If I had a bad day, it meant I just needed to get through it until I got to a good day.

Speaking of which, this next Sunday, we'll be going out again. We'll be gone for two weeks. But I promise to take lots of pictures and videos, to check in whenever possible. And maybe come back with some new songs. We have a really great friend who'll be housesitting for us. Steinbeck has already tested out his lap, so I know the boys will be well taken care of.

I think it's great that our lives are paralleling what went on 10 years ago. But this time, I won't be fighting to stay alive. I'll just be doing my usual "fighting to stay ALIVE!"

10 Yrs. Ago: The Gay Church

Yes, that's me with Brian Wilson and Nik Venet poking his head out between us.

My blogreader and longtime netpal, Mage, pointed out in a previous entry that it was my friends sticking around that helped me significantly in staying alive through this period. One of those friends was songwriter Harriet Schock and songwriting mentor, the late, great Nik Venet. Nik was a music industry legend who was fierce in his denunciation of bad songwriting. He made Simon Cowell look like Paula Abdul. Seriously. Nik never gave any quarter to any songwriter who he felt was lazy and not trying to dive all the way into the meat of any lyric.

Aside from the great John Bettis (left), who first heard my songs and gave me the go-ahead to believe in myself and my writing skills, it was Nik, who, when I first played them for him, pushed my self-confidence over the top because I didn't really know him that well at the time. We had met a few times through my involvement at the songwriter academy, but it was sitting in Harriet's living room at her piano that I played the TLS songs for Nik -- and when I turned around, there were tears streaming down his face. All he said was, "You're on it, kid."

So, as I continued writing the score, Harriet and Nik (pictured right) gave me an opportunity to play them live for a roomful of other songwriters 10 years ago at the Songwriter Campfire. From the diary dated April 29, 1996:
"Last night at the Songwriters Campfire, Nik "El Greco" Venet, who runs it, leaned over to say hello to me at the back table. I was sitting with David Robyn, my young songwriter "protégé." I told Nik I was hoping he'd get to hear David's "This Ain't Good" cause I would love for him to be on the showcase. Nik said hearing the demos wasn't necessary. He said if I thought it was good enough, that was enough for him. Then he said David could be on the following Sunday.

"David leaned over and hugged me (thanking me) and told me he thought I was about most respected man he'd ever met. I told him he needed to get out more often...

"...Scott Wilson (another wonderful songwriter) introduced me from stage with such affection and build-up, I thought I'd never live up to it. But I got up there and did The Faces In The Music by memory for the first time. (It has LOTS of words). The applause seemed endless with everyone shouting and cheering."
I REMEMBER THIS! The Faces In The Music is a song we eventually cut from The Last Session because it didn't fit dramatically, but I remember that night. The Songwriter's Campfire was held at Genghis Cohen, an Asian cuisine restaurant that has a club for solo artists and small bands. The room was packed. I was scared and shaking as I sat at the keyboard.

NOTE FOR MUSICIANS: Nik always made keyboard players sit slightly off-center with the keyboard turned at a slight angle. He said, "Otherwise, it looks like you're ironing."

The applause after that song really did seem to go on forever. And they were literally cheering. Looking back, I think a part of me probably thought they were just glad that I made it through to the end. But this crowd doesn't really do you any favors. If they don't like a song, you'll know it by the 8th bar.
"Then, without comment, I launched into Going It Alone and there wasn't a dry eye in the house. It's such a moving, unexpected song. Harriet Schock had to follow me. She got up there and said she needed a moment because she was so "into" my song, she wasn't "there" yet."
I remember poor Harriet getting up on stage after "Going It Alone." She could barely speak. Her eyes were red. She literally asked everyone to give her a moment so she could compose herself before she could start singing.

The Songwriters Campfire was held on Sunday nights. But earlier that day, I joined with Alan Satchwell and his choir from the Sherman Oaks United Methodist Church to sing "When You Care." They are the choir, btw, that is on the Bonus Round Sessions recording. I had forgotten until I read this entry that it was my first time in a Metropolitan Community Church -- a gay church. For my Baptist eyes, it was a bit startling. It was also shocking to me that gay people would even WANT to go to church. After my experiences in feeling demonized and ostracized by certain old friends hyper religious friends from east Texas, I hated church and I hated religion. I never really expressed that in the diary back then, but it's true. I mean I HATED church. I HATED religion. I wrote:
"I don't go to church these days. It's complicated, the reasons. Most of it has to do with the structure of worship services and the syntax of religion. Again, it's hard to explain in a few words. My faith is strong, but it's deeply personal and I don't find it easy to get into someone else's ritual, if that makes sense....

"Anyway, the gay church: well, it's like any other mainstream Protestant church, I suppose. The clergy are in robes (which is weird to a Baptist). Most of the women are kinda butch and the male "Worship Coordinator" spoke with a slight lisp. But the atmosphere was gentle and kind and very loving, with a nice sense of humor. I don't think one would know one was in a gay church if one just wandered in. Gay people are so hated and ostracized by other religions, I think they are happy to find a port in the storm where they can freely be themselves."
10 years later, I've sung in more churches that I can remember. I've sung in churches and synagogues of every faith and denomination, but liberal and conservative. I still don't hold a membership in any church, though, because I still feel, as I did then, that my own faith is mine alone and very personal. John Bettis once said to me that religions are like off the rack clothing. None of them fit anyone exactly. I did note one incident at the morning service, though:
"But the thing that touched me deeply that morning was a guy who, in the little prayer circle we did before the service, asked for prayer for a friend who was "going back home to his parents' house to die." I knew he was talking about AIDS and I couldn't help but feel a catch in my throat as I saw the pain in his face.

"Later, during the communion portion of the service, while everyone else was praying for each other and huddling and taking the bread and wine, he sat across the room from me alone and wept bitterly for his friend. It touched me deeply and I couldn't help but cry a little myself as I saw his agony. I wondered how close the dying friend was to this young man who looked so helpless in his pain. It made me realize how much AIDS is about real live flesh and blood human beings -- not just statistics.

"And how much this agony is not just about the people who are dying, but about the ones who are left behind. As I write these words, tears are once again streaming down my face."
One of the "contributions," if you can call it that, that AIDS made to the gay movement was that it forced so many people out of the closet. For the first time, all the bigots and homophobes "back home" were forced to realize that Uncle Ned and Aunt Sue, brother Billy, daughter Julie, were all gay. It's hard to hate a group when they have a face -- and when that face is someone you love.

Even today, many moms and dads are facing the fact that they children they nurtured and loved "turned out" gay. They blame themselves. They blame the environment. They look for "reasons." But the fact is that there is no "cause" for being gay anymore than there is a "cause" for being straight. It's like looking for a "cause" that someone is left-handed. What kids need to know is that they will be loved no matter what. Because, gay or not, they will always be your kids -- and they will always need to know that you love them.

The irony of this whole "gay church" thing is that first we get thrown out of churches because we're gay. Then, we gays get criticized and ridiculed for not going to church. Then, when we find a church that will have us, we get criticized for going to a church that will have us.

Monday, May 01, 2006

Heidi's Birthday Party

The Malibu home of Ron & Kristin Turner.

Two of our closest personal friends are Heidi Sullivan & Tom Hozduk. Sunday was Heidi's birthday, so, together with our other friends, Kristin and Ron Turner, we threw a surprise party for her at the Turner's beautiful home in Malibu (which Ron, who is a world class architect designed himself -- he and his firm designed, among other things, the Staples Center here in Los Angeles). The morning fog was somewhat thick over the coastline so, at first there wasn't much to take pictures of until, suddenly, a line of 12 Lotus automobiles came careening past us.

I grabbed my camera and took a few shots. I don't think I've ever seen 12 Lotuses in my life, much less all in one caravan up PCH.


Malibu is one of those strange beachside cities/drives that is mostly ugly because the beach is cut off from view by a series of what looks like run-down shacks (but which cost millions of dollars). It's like driving down the alleyway of a slum with a rising hill on one side and a long series of shacks on the other. Shacks with Mercedes' parked out front, but still shacks. The mountainside rises up right from the highway so the most of the people in Malibu either live directly on the beach or up in the hills. Ron and Kristin live up in the hills.

Unfortunately, these hills also have landslides, so the mountain roads are somewhat treacherous. They narrow to one lane in about three places leading up to the Turners. At one point, we stopped at a stop sign erected at a place where the road was cut down to one lane. On the other side is a blind curve. We crept into the left hand lane to get up the mountain when suddenly 10 bicycle riders came at us out of nowhere. There was no wasy for them to realize that their lane didn't belong to them anymore and we saw several of them panic as they realized we were about to have a head-on collision. But, Jim was careful and, luckily, no one went out of control. If they had, the choices would have been to either hit us or go careening off the side of the mountain. Not the best choices in the world.

When we got to the Turners' we were greeted by Madison the Cat who is probably the sweetest, loudest cat I've ever met. I couldn't stop petting Madison who just rolls over on his back and lets you rub him and stroke him. And when you stop, you get MEOWS like crazy. "Get back over here and pet me!" I love this cat. Several times during the day, I would just leave everyone and go into the living room with Madison.

Kristin is a great cook and I've taken a number of photos of the house for those of you who enjoy looking at original architecture.

Here is their kitchen.

Their beautiful living room.

Kristin showing off her tasty popovers.

The kitchen and dining room areas are one huge, open space. The countertops define the kitchen.

Heidi didn't know Jim and I would be there. So, when she arrived we hid in the pantry and jumped out. It was a great! The six of us have formed a little theatre/dining party called SAFAL (Sunday Afternoon Fine Arts League) -- based on a Lucy episode -- and we have great fun. Kristin works for Crystal Cruises, which is how she met Jim since she schedules the lecturers. We usually have lots of laughs together, especially if the play is really bad.

Heidi, the birthday girl.

Tom, her handsome husband.

I love how their front yard fades down the hillside.

Ron created a very interesting house because the limitations were that the "shelf" that the house was to stand on is oblong and shallow. So, he made a two part house that is wider than it is deep. The front wall, full of windows, is actually a garage door, and both the living room and dining room/kitchen walls raise up and disappear leaving the entire structure wide open to the ocean view, turning the house into a huge outdoor patio facing the infinity lap pool. We had a mist that day, so you can't see it, but on a clear day, you can see all the way to the Palos Verdes peninsula.

Ron is currently designing a big football stadium, so this is me showing him how to do it by explaining that I felt it should be -- Oh, I don't know -- oval shaped. I'm sure he's going to consult with me from now on when he needs these kinds of ideas. As you can see below, the house is divided into two structures, the main house and the guest house.

In this photo, you can see the little bridge that connects them.

And, finally, no party photo collection would be complete without a shot of me fast asleep while playing with the cat. Jim has an entire folder full of pictures of me asleep all around the world.

Happy birthday, Heidi!