Volume 1 Book 2 Part 1 of
Living In The Bonus Round
the online diary by Steve Schalchlin

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August 1996. El Lay.
The rush of new life. But how can I slow down?
Now that I'm not going to die, what do I do?

Sunday Monday Tuesday Wednesday Thursday Friday Saturday

August 1996

1 2 3
Strange Mood. Penultimate Show. A Triumphant Finish. An Incredible Surprise. A Day With Mom and Dad.
4 5 6 7 8 9 10
Sleep. Sleep. And A Call From Carl. A Note From Nora. A Call From Ceil. A Quiet Day. An Interesting Phone Call From Leslie. New Visit With Dr. Ellie. Another Day Off!!
11 12 13 14 15 16 17
Scoring and A fundraiser for Homestead Hospice. Making Copies. A Strange Departure. TV Mag Delayed. The Swelling. The Truth. Lunch With Irene. Notes from Tony. The Washington Post. Can A Man Make A Difference? Jimmy's 50th. Weird Reflections On A Long Life.
18 19 20 21 22 23 24
A Window of Opportunity. Good Honest Work. Playing with Lynne. Rusty's Surf Ranch & Walking the Pier with Ronda. More Thoughts About New Life And, Uh, Tarzan. Scoring. Poetry. Old Notes. Jonathan's letter. New Pictures and Playing with David. Working.
25 26 27 28 29 30 31
The Sunday Sermon? Billy Valentine's New Hell. Setting Sights on October 1st. Busy, busy busy. Doctor Appointment. New Test Results. The Tarzan Years? Brain On Fire. A Buzz in Chicago. A Buzz in New York. Redesigning The Last Session. Mexican Train.

Thursday, August 1, 1996
Strange Mood. Penultimate Show.

I just was in a strange mood all day today. I can't describe it except to say that I felt "intense." Even the actors picked up on it when we met just before the show for sound check. I don't know why I felt so "intense." Perhaps it's because it was our second to the last show. Perhaps I'm just weird.

As we sat in the dressing room, I kind of apologized for it and Chip said, "Use it." As in, "Let it be a part of your performance." So I did. Tonight Gideon was very intense. Well, hell, he is suicidal after all. You can't get much more intense than that! And we had a really good show. I was totally on top of my lines except for one little on at the top of the second act. I got confused as to which lines came first, but it was not a big deal. Marjory just said it for me. (It was to call "Tricia" out of the booth).

We didn't get a standing ovation tonight but Morty, a friend of ours who came, said people were just too stunned by the show tonight to stand up. He said everyone he talked to thought it was one of the best things they had ever seen. I mean, they certainly responded to everything with big applause and huge laughs at the right moments!

I didn't do a curtain speech tonight, either. Usually I stop the applause and say a few words about how much better I'm feeling and that I wasn't sure two months ago if I'd even be alive to see the show, much less be in it. But tonight I just waved and we left the stage.

I still don't know why I felt so weird.

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Friday, August 2, 1996
A Triumphant Finish. An Incredible Surprise.

Considering how strangely I felt last night, I didn't have any idea how I was going to feel tonight as we did our last performance of The Last Session. Going in, I was feeling such a strange mixture of relief that we had accomplished our goals and that it would be over (for now), and sadness that this phase was coming to an end.

I spent the early part of the day working on the score. Then suddenly, about 1:45 I remembered I had an ear appointment -- but I couldn't remember if it was for today or for next week. So I called and asked. They said, "Yes, it's today at 1:45." I asked if I could zip over there even though I was already late. They said yes. So I had my ears checked. Remember when coming off the cruise last month one of them was severely blocked up? Well, it's all fine, now. I'm going to live and I'm going to hear. Almost all my hearing has returned. Just excess water on the brain or something.

When we got to the theatre, we were all in a kind of giddy mood. I began playing Beatle songs on the piano and Chip grabbed a mic and sang. He has a most incredible voice. I think we went from "Let It Be," to "Hey Jude" to "Get Back" to "Paperback Writer" before we finally gave way to the sound check. And for some reason the sound was perfect. All the reverb which had been missing suddenly returned and everyone sounded great. So we went upstairs to the dressing rooms.

I don't think I've described the dressing rooms. They are very small (one for the boys and one for the girls) and they don't have air conditioning. The windows look right out over the courtyard where the "customers" gather before the show. I looked down and there sitting on benches were Dennis and John, my health advocate and his partner. Dennis, you might recall was the one who insisted I looked like hell two months ago and who demanded that I get the IV TPN treatments which have largely been responsible for bringing me back from the dead. I shouted and waved to them. He was accompanied by Paul, his nephew who helped us with designing and printing our programs, and Mary, another nurse who assists him in their business.

So our little rooms were kind of hot, but as Chip and Doug and I sat there -- Chip shaving and Doug telling funny stories about things he says on the air as The Greaseman, I suddenly asked Chip about last night. I wanted to know if my "weird mood" was good or bad in terms of the character. I asked him if I was too intense or should I back off, etc. He said, No. It gave him something very solid to play against. The harder I hit in our little debate/exchanges, the more he was able to react and to feel.

Well, it was close to showtime. I made my way around the back of the theatre to stage left and waited in the wings for the lights to go down. Ronda the Producer gave her little speech to the crowd about how this was just a workshop, a work in progress and she thanked the crowd for being there. Then the lights went down and I made my way in the dark to the glow tape on the stool and on the keys I have to play in the dark. Then I did my opening lines in the dark:

"Hi, everybody. It's me, Gideon. Greetings from the great beyond. I can't tell you what heaven is like because I'm not there yet. I'm recording this on the 145, 276th day of my life...with one more to go..." And the lights are now fading up on me. I finish my little speech which implies I'm going to commit suicide and launch into Save Me A Seat. (This is our new opening, by the way.)

I don't know what possessed me tonight, but more than any other night, I really and truly was Gideon, the character in the play. Jim told me later that he had never heard nor seen anything come from me like what he saw tonight. He said, "You've done a great job before, but I always saw you up there. Tonight, you were a character. You were doing things that surprised the hell out of me. I kept thinking, Whoa, where did that come from?"

In the scenes where Buddy comes in and we begin our little theological debates, I could literally feel the sting of his words as they hit me. And I, as Gideon, just slammed them right back at him. I could feel myself getting caught up in anger and dismay and heartbreak. And the audience was totally with us all the way. When we'd hit a funny line, their laughter would crack through the room like lightning. Emotional moments bought sniffles and tears from them.

And I was going through so many emotions. Sadness, anger, joy. And the songs felt as if I had written them yesterday. Each one was delivered in ways I had never sung them before as the "moment" over took me each time. The bitter parts were very bitter, the parts where I felt helpless just felt that much more helpless. I was barely aware the audience was there except for when their extended laughter or applause made us stop, preventing us from going on to our next lines.

And since most of my exchanges are with "Buddy," and I knew Chip was feeling all this too, when we got to the dressing rooms at the intermission, we just embraced each other. Didn't need to say a word.

The standing ovation at the end of the show was thunderous. It felt, to me, like an incredible triumph. At last I had fully realized the Gideon character, felt everything he felt, cried when he cried. The moment -- and I know I've described it for you before -- but after all their heated words, with Buddy even, at one point, telling Gideon to stay on his side of the studio -- there's a beautiful moment at the end of the show where Buddy asks Gideon if he can pray over him.

Buddy approaches Gideon -- this man he has been sparring with and who he has been afraid to be in the same room with -- and he raises his hand over Gideon's head, and then tentatively touches him as he prays. The second his hand touched my head tonight, a huge lump appeared in my throat and I felt this gigantic cry coming on. I held back tears, but the moment was so honest.

So, at the curtain I made my little speech thanking everyone for coming and for supporting our workshop. Then I introduced the "playwright and director" Jim Brochu. He came down and then said something very strange. He said, "We're going to turn this into Sally Jesse Raphael." What?? I asked myself. "We have a little surprise for Steve. Tonight, the real Preacher and the Nurse, Steve's mom and dad are here. We flew them in from Louisiana." And down the aisle came my mom and dad. I had no idea they were there.

Everyone tells me the look on my face was priceless. Well I grabbed them and hugged them and -- what can I say? I was totally floored and so thrilled that they had seen our creation. And me in it. Mom's first words to me were how happy she was to see me looking so healthy. She remembered how fragile I had become the last time we had seen them.

Well, dear friends. I know this entry today is totally self-indulgent but once again, a peak experience for me. Not only were they there but they saw the very best performance we were to give during the whole run. Lots of others were there, too. Al and Ceil Kasha (Academy Award-winning songwriter), David Pomeranz (multi-hit songwriter), John Braheny who founded the Los Angeles Songwriters Showcase, Lois Blaisch (hit songwriter and singer), Patty & Michael Silversher (great theatre and songwriters who make a living writing for Disney), -- who have I left out? -- and so many others.

We all met at Lola's on Melrose afterwards and, after taking my last Crixivan of the day at 11, I hit the food at midnight. Chicken Satay in peanut sauce followed by spaghetti and meatballs. (I eat so much these days. It's so wonderful to be able to eat anything I want. Long ago and far away do the days when I could only eat rice and bananas seem...)

And so our workshop comes to a close. We've had a solid run of seven performances, all of which played to capacity crowds and standing ovations. Not one negative word from anyone. Where do we go from here? Well, your guess is as good as mine. We want to run this show but like anything worth doing, it will take money and a good producer. We have cast our net into the water and we have solid folks like Ronda and Irene (and Gary & Linda at the Zephyr) as well as Carl in New York. So, I will let them worry about that.

Right now, I'm basking in a glow that many people can only dream about, but one which I am actually living out. I shall remember this night for a very long time and I will thank God and whomever else wants credit for it. Even though my health is amazing right now, I still intend to live one day at a time to savor every single moment. Tomorrow will take care of tomorrow. None of us are guaranteed anything beyond the this moment right now. And I've said it before, but I'll say it again.

I'm just so very, very happy to be alive.

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Saturday, August 3, 1996
A Day With Mom and Dad.

After the incredible events of last night plus hanging out at Lola's until 1:30, all we really wanted to do today was sleep, but since mom and dad were here, and since we had already bought theatre tickets for this afternoon as a reward for doing the run, we were up and at 'em, today.

We had breakfast with the folks, then we picked up Ronda and Kim and all went to see the live stage production of "Beauty and the Beast," then we went to dinner and back here for a game of Mexican Train (which they taught us in Vegas when we were visiting Aunt Frieda). But about 9pm, I said, "That's it. I'm done. I'm passing out." And so was everyone else. So I drove them back to their hotel room and came back here and went to bed.

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Sunday, August 4, 1996
Sleep. Sleep. And A Call From Carl.

We slept all day. Twice I tried to get up and work on the score, but it was to no avail. We both slept all day. Then this evening, we went to see our friend, Cindy Nassi, do her cabaret act at the Hollywood Roosevelt (she was great), and when we got home, we called Carl D. White in New York and made the decision to definitely begin a workshop of The Last Session there.

Then we went back to sleep.

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Monday, August 5, 1996
A Note From Nora. A Call From Ceil.

Want to know why I do an online diary? Here's one reason:
I don't know what to say. Let me start off by telling you that I came across your homepage, and I read it cover to cover (fig- uratively) and I was amazed. I am new on netscape and with geocities, and you were one of the featured pages of the week, or day, whatever.

You said that if you got to a certain part in the letter that you should write to you. I have a few questions and a lot of comments.

I'm going to tell you a little but about myself so you can understand where all this is coming from. My name is Nora. I'm 14 years old and will be a sophomore in HS at our local HS this fall. We have had health classes and sex ed every other year, and I know what AIDS and HIV is. But, I have never met or talked to or even known someone with AIDS or HIV. Granted there was Magic Johnson and Ryan White, but you are more of a closer contact than them. I started reading your page and I was touched. As I said I read all of it. (Not all, everything but most of your journal, I read this past weeks entries.) Wow, I really don't know what else to say.

You said that people don't confront AIDS unless it is pushed in their faces. I couldn't agree with you more. For me, your home page was an awakening to a world that I was clueless in. I really enjoyed all the stuff you include in your homepage having to do with your musical THE LAST SESSION. But, I have a question. Where is it?? Is the actual script on your homepage? Am I missing it? I would like to read the whole thing in full. At my high school I am very involved in the theatre program, and I can appreciate a good musical. What I read about yours seemed phenomenal. I really liked that and all the music in it. Those are really powerful songs. I wish I could see the show, but I'm in Cleveland, and that isn't one of your planned stops. If you go to NYC I hope that I can come see it there.

The last thing I looked at was your pictures. I was surprised about the way you look. Please don't take this the wrong way, but I thought that people would AIDS would look sick. You look so healthy. I'm very happy for that. I hope you are healthy too.

Your page has made me look at things differently. I am so happy that I stumbled across it because it does make a difference. Please write back if you have a chance, because I would love to talk to you.

Keep up the great work, you really are making a difference in the education of people about AIDS.

I answered Nora and told her we haven't published the full text of the show on the pub because of copyright considerations. Also, we don't want someone "doing" the show yet since we are still developing it. Everyone will have to be content with a description. I'll try to update that soon so that it will follow the new changes we made during the recent workshop production here in Los Angeles.

Ceil Kasha also called. Ceil is the wife of Al Kasha, the two time Academy Award winning songwriter (he likes it when I remind people of that). Ceil called today after having attended the last performance -- they sat next to my parents. She said she never really understood what People With AIDS go through until she saw the show. She said it touched her and Al on a very deep level. She said they could barely speak in the car on the way home because of the impact of the show.

She was also very happy to see me healthy and looking so "handsome." She said I really looked like a leading man out there on the stage. When I think of how sick I was two months ago...

In fact, while my parents were here, we looked at the video we shot of the cruise we took just before I started on the TPN and Crixivan. I looked horrible. Like walking death. Hell, I looked like the Cryptkeeper on "Tales From the Crypt."

Folks, I can't even begin to tell you of the joy that bubles up from my soul to know I'm not at this moment at death's door. I've come to close. Dodging the bullet is becoming a sport I'm getting good at.

Today I worked on the score some more and then went out to see the movie, "Stonewall," about the gay uprising in New York. It was okay for a low budget flick. I think the thing that moved me the most was how much the cops used to bust people for just holding hands or even just being in a gay bar. What a waste of time and energy. I'm so glad thing have changed, even though the hatred remains. Now hate mostly comes from church leaders. Isn't that interesting?

But I took my medications right on time. (I haven't missed a single dose). And I'm strong and feeling on top of the world.

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Tuesday, August 6, 1996
A Quiet Day.

Just worked on the score today and then went to see "Chain Reaction," a new movie that was only okay. Kinda dumb.

Health is still amazing. Still gaining weight and still staying strong. Over two weeks off the IV and no diarrhea or loss of energy. This Crixivan stuff is changing our lives. My doctor says his patients are blooming like flowers in a hot house. Also, I found out from Dennis, my health advocate, that Dr. Ellie is running around telling everyone about me and about how we turned around my health with the TPN and the Crixivan. (We laugh because we had to twist his arm to do it. Now he's included it in all his lectures!)

Found some very cheap flights to New York so Jimmy is going out the first week of September to meet with Carl and look at places where we could do the workshop. Also, Carl has gotten one of Broadway's top graphic artists to design a logo for The Last Session. He gave him the script yesterday. Can't wait to see what he comes up with.

Life continues to be grand and wonderful. Also, we're going to have Jim's 50th birthday party at Lola's. Doug Tracht and his wife, Anita, are going to sponsor it. Should be fun! I let it slip last night to Jim but this was too big to keep a secret anyway. Please. It's his 50th, for god's sake. Just want to do it nice.

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Thursday, August 8, 1996
An Interesting Phone Call From Leslie.

Leslie Glick from APLA called me today. She apologized for not getting out to see our show and then asked me if I'd come to her office. That she had something she wanted to play for me. I said, "Sure." So I raced over the hill and found her office (the one with stuffed animals piled to the ceiling).

Leslie runs horses and she told me about her new horse. Then she mysteriously asked me to listen to something. It was a message on her voice mail. She went to her desk and began paging through all the ones she had saved so far -- "I save a lot of these," she giggled. Then she played it.

It was a male voice. Another APLA worker. He mentioned my name and then he said something about "48 Hours" and a meeting with a producer. It seems the CBS TV show "48 Hours" is looking to do a story on people with AIDS who have responded to the new protease inhibitor drugs. They want to find people who really thought their lives were over but who now find themselves doing things and thinking things they never would have done or thought before they "got better."

Well, I could only think of the fact that two months ago, we thought I had little or no time left due to the massive wasting that had been going on in my body. And how the combo of Crixivan and TPN had not only saved my life -- how Jimmy and I thought I wouldn't even LIVE to see our workshop -- but had made it possible for me to STAR in the workshop. A complete turn around and definitely a case of doing things I never thought possible.

I was elated. Leslie had recommended me to him for the story. He is Allen Carrier and is the Director of Communications for APLA. I finally spoke to Allen late this afternoon and he felt my story was perfect. I even told him I could document my progress (this diary!) and show how my life had changed.

So last night I printed out every word of this diary (it's hundreds of pages! Geez, I didn't realize I was so long winded) and have put it into a binder. I'm going to meet with one of the producers on Tuesday and I want to be absolutely prepared for the meeting. There will be other candidates they will be looking at. But this would be so cool.

So cross your fingers for us. This could be really great.

One other thing I did today was I went to see "Hunchback of Notre Dame." My god, it was beautiful! I absolutely loved it. It drives me crazy that all these purists were making such a big deal out the fact that the story was "Disney-ized." No, man, it was a gorgeous and wonderful film. Too good for kids, if you ask me. hehehehe.

But how can anything be too good for kids? Besides, who's to say who's a kid and who's not a kid? Ya know?

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Friday, August 9, 1996
New Visit With Dr. Ellie.

Saw my primary care physician today, Dr. Ellie. He sits behind a desk which is piled high with papers. I don't know how he finds anything! But he's the quintessential "crumpled" doctor; probably in his upper 50s agewise, walks with a limp, balding, eyes like Santa Claus, cares way the hell of a lot about me. I'm crazy about him.

He was very happy to see me looking so good and healthy. He found a few molluscums on me and wants me to go get them burned off before they spread (they're little bumps caused by a virus that will spread if you touch it). The other thing he found was that I have a hernia around my belly button area. It's not serious at this point and won't be for awhile, but he called my surgeon, Dr. Seid, and they both said that eventually I'd have to have surgery on it.

He was kinda happy it was something NOT AIDS-related. Me too.

After that I had breakfast with a young lady songwriter friend of mine who is moving to Canada. She gave me a plant and we sat at the International House of Pancakes in Santa Monica while she asked me advice about starting a career as a singer/songwriter and I told her what I tell everyone. Open your soul and tell the truth in your songs, because only your own point of view will set you apart from everyone else. The more specific you get, the more universal your message will be.

Then I went back across the street to St. John's Hospital where they drew a gallon of blood out of my arm so we could do new tests on my viral load and on my t-cell count. It will be interesting to see if the protease inhibitor is still working for me. I've been unyieldingly faithful in taking my Crixivan. Three times a day on an empty stomach. I haven't missed a single dose and I haven't taken any on a full stomach. I time my days meticulously as to when I can eat and when I can't.

The other thing I did was to download and print out all the diary pages from March through July. It's like a whole book! I'm thinking of copying the pages, putting them into ring binders and giving them away to friends. I was thinking I would tell people they could make one copy to give away to friends of theirs. That is, if it's not too boring a read.

By the way, I'm sorry I couldn't get on line to make entries the last few days. My Internet Service Provider, The Loop, went down and I couldn't get anything uploaded. It was maddening, to say the very least. Hopefully, they'll get straightened out. And thanks for all the notes, people! I didn't realize how many of you out there needed your daily "fix" of diary from me. It's very sweet that you are so concerned.

For those of you who worry when I don't put something in, please take a deep breath. I'm counting on being here for a very long time. The Crixivan has changed my life and, yes, it might be temporary, or it might be hurting other things in my body -- that's what chemotherapy can do -- but I am now living in a *new* bonus round and I'm so alive right now, I practically glow in the dark.

Thank you for your prayers. And thank you for caring. I consider this space as much yours as it is mine.

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Saturday, August 10, 1996
Another Day Off!!

Once again, I allowed myself the total permission to take the day off and just do whatever I wanted. Jimmy stayed in bed for the most part because he needs to heal the sciatica. So what did I do on my day off?

I sat at the computer and I worked on the score for the show. I've finished all but three of the songs, now, and they looke great. I even used the "change key" function and did Going It Alone in three different keys. It was fun.

Then all of a sudden, about 3:45, all the electricity blinked off, came back on for a minute or so and then shut down totally. It got so quiet. I forget how noisy electricity is. But it got very quiet as the air conditioner and refrigerator and the TV all shut down at once.

He was reading a play at the time and I was at the computer. We waited and the only sound now was the building alarm which goes off everytime we lose power. It's a retched high pitched beep and only Vicki the apartment Manager knows how to turn it off. And Vicki is in San Diego. So is the Republican Convention, by the way.

When the lights came back on an hour and half later, all I could think of was, "You mean the whole power grid is connected to one line and when that line went bad, half the United States goes dark? Who's idea was that?" Suddenly all the words being thrown at us from the tube and the idiotic presidential advertisements seemed even more absurd. Let's have a talk about security and where the lights are plugged in.

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Sunday, August 11, 1996
Scoring and A fundraiser for Homestead Hospice.

We spoke to my brother, Corky, yesterday and he told me something my mother had said after seeing our show. She said, "I thought it was a real good show, but I wish it was someone else..." (Meaning, I suppose, she wished it wasn't me who had AIDS.) My dad told us when they were here that after they had seen me in Vegas earlier this year, they honestly feared it would be the last time they ever would see me. They were thrilled that I am doing so well.

I spent much time today continuing my work on the piano score for the show. Then in the afternoon, we went to a fundraiser at David and Ted's. That's the beautiful mansion where we had the first informal reading. They have this large backyard on a hill and it goes straight up. Well, they have had it landscaped and worked on and for this party, where the first prize -- for the $50 donation at the door -- was a free cruise.

The hill has been terraced in three sections and they labeled each terrace with a different name -- like decks on a cruise ship. At the top, they have a beautiful fountain under a gazebo and they had a steel drum duo at the top playing music.

We got there an hour past my Crixivan dose, so I could eat. But all they had were little hors d'oeurves being passed around a little at a time. I must have looked like total rube attacking the waitress evertime she came out of the kitchen. But I ate well and left some of the sheet music for the show on David's piano. He left me an e-mail this morning saying how much he loved having it.

Then I went to the Songwriters Campfire at Genghis Cantina so see the writers and act important. Left a little early, though, because my stomach was beginning to hurt. And then I noticed a little diarrhea last night. Not a lot. But enough to remind me of the nightmare of the last three years. And enough to remind me that no matter how good I feel right now, I am still living with AIDS.

Still living with it. But still living.

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Monday, August 12, 1996
Making Copies. A Strange Departure. TV Mag Delayed.

Went over to Bob-A-Lew today to make copies of the print-out of the Diary Pages from March to July. I told you already that they fill a whole ring binder. The page total is 163.

I mentioned the diarrhea yesterday. It's pretty much cleared up but I have noticed a bit of a swelling in my lymph glands just behind my jaw. I think I've picked up a little cold or something but I'm going to call Dr. Ellie, anyway, just in case. We're supposed to stay on top of everything like that.

Speaking of the workshop, you with sharp eyes might have noticed that our producer whose initials were D.R. suddenly dropped from sight. I hadn't mentioned it before because it's business and I didn't want to do something that wasn't good business. But enough time has passed and I promised to tell all here so here we go: It was kinda strange, his dropping out of sight. You see, he really, really wanted another actor, J.M. to come in and do the role of Gideon (my role) and was pressing hard for that to happen. Presumably because I was an amateur actor.

But Jimmy, once we got into the run, felt very strongly that I was holding up my own and didn't really feel there was enough time to get J.M. up in the role. He also felt he wasn't really learning the piano parts fast enough. So, after on especially good night, he made an executive decision that J.M. would not go on. And he called D.R. to give him the news. He basically said it like this: I've made a unilateral decision...

D.R., remembering that the other producers had wanted, from the beginning, to see someone else do the role, apparently called them all, but they all agreed with Jimmy. Steve should do the role throughout the whole run. (I should also state here that many of the people making reservations were moving their reservations to nights when I would be on...).

That night, D.R., without warning, said his goodbyes to everyone and disappeared into the night, never to be heard from again. I remember that he was scheduled to leave early and had some other producing job to go to for awhile, but it's strange that he never called us again. He just hit the road and evaporated. I wonder if I'm supposed to call him? Doesn't matter. We're moving on anyway.

Got some semi-bad news from Allen at APLA yesterday. The 48 Hours producer has delayed the onset of the story I told you about. That's TV, though. I've seen it a thousand times. It may happen and it may not. Allen said to just hang in there.

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Tuesday, August 13, 1996
The Swelling. The Truth.

I called Dr. Ellie first thing this morning to tell him that I have this swelling behind my jawbone. He asked me if I had fever with it and I said, "No." He asked me if it was painful and I told him it was not painful. I even said it felt like it might already be subsiding. He sounded very concerned but said to give it another day and see if it's really going down. He also said to continue checking my temperature.

So I checked it again in the afternoon. No fever. And at night. No fever. But the swelling has not gone down. From the outside, it's barely noticable because the nodes that are swollen are just behind my jawbone and up against my ear as opposed to further down on my neck. I just look a little like Maria Shriver.

Yesterday, Jimmy had ton of computer work to do so I went to Bob-A-Lew and made copies of the "book" -- that is, the print-out of this diary, March through July. I gave one to Ronda the Publisher, who was very impressed with how much material was there.  I also ate lunch at the little Middle Eastern joint. Chicken shish-ke-bob and Hummus. Good stuff.

Then I hit the 2:00 showing of "Courage Under Fire" with Denzel Washington and Meg Ryan. What a great movie! I compared this to "A Time to Kill," which I had seen a day earlier. No comparison. And I realized that, aside from the film being great storytelling, it was the inherent truth behind the film that really gave it its strength.

And I keep reminding myself that it's the truth behind our musical that gives it its strength. All the great storytelling in the world will never match a great honest moment in a person's life where one stands up to incalculable odds and says, "I will make it. I will survive. And if not, then, I'll fight to the bitter end." I keep hearing that it's how we face the impossible that really determines our character. And I'm determined to be a man of character.

Late tonight I worked on the score for the show. I've been having fun changing keys and adding guitar chord symbols onto the pages. Encore, the software program I'm using to do the score makes it very easy. So, I faxed one to John Bettis, who wrote the lyrics to When You Care. He called me back immediately and said he loved it although he quibbled with one word we had changed.

I had been concerned because I hadn't heard from John in a very long time. I had even faxed him a letter telling him how successful the show had been. Well, he told me he has been in Nashville most of this time and he didn't get the previous fax! I was so relieved. So we sent him an invitation to Jimmy's 50th and I wrote him again telling him all about the show.

I worked way past midnight on the music and then finally went to bed but not before I have my swollen nodes one more rub and had taken my temperature one more time. No fever. Hmm. I wonder if that's a good sign or a bad sign...

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Wednesday, August 14, 1996
Lunch With Irene. Notes from Tony.

One of the nicest things to come out of our workshop here in Los Angeles was meeting Irene Oppenheim. Today I took over to her a print-out of the diary -- March through July -- and, for the first time, we just sat and talked. She told me how she had been a theatre critic up in San Francisco for the longest time and how she and Paul, her husband, moved here because she felt she knew too many people there. Isn't that funny? Most people stay in a place BECAUSE they know people there.

It was fun seeing their apartment for the first time. In the living room was an electronic piano, a couple of flutes and a "bass fiddle" or double bass all set up with music stands against a bookcase that had the most literary books in it I've ever seen in a private home. Irene is also a write and an essayist. She showed me a couple of books where she has an essay or two published. It was very impressive because she shares space in these books with the likes of Norman Mailer, Gore, and other great literati.

One of her essays was about waiting tables and it was absolutely hilarious. Her command of the English language was astonishing. And her wit was very wry. I especially liked the way she described waiting tables at Canter's Deli on Fairfax in L.A. It's practically an institution and that's where the Campfire Songwriters go after their shows on Sunday.

She also gave me some notes from one Tony Arn, who came to see the show four times! He had some very insightful remarks. She thought they were "vicious" -- I think that's the word she used -- because he tore into a couple of things we did that he found "wrong" or whatever. He also used a new word: zeugma. Irene and I had to look it up to see what it meant. I didn't feel so bad about not knowing zeugma when Irene didn't know it either. It's sort of like a word you use that has two different meanings and you use them together. The example he used was from The Faces In The Music where Gideon sings, "...and I always used to wonder ..."(i.e. question) "...if those Mongoloid Kids were capable of wonder." (i.e. awe).

A zeugma.

I'm not going to tell you if he liked this zeugma or not, but let's just say that he noticed it. He had a few other comments that were right on the money. It was funny coming home to Jim and giving them to him because he hates "notes" and he hates dramaturgs. Dramaturgs are the people at theatres that "make comments" on your play to "help" you along. Jimmy says all he needs is an audience and he'll know what to fix.

And he's usually right. So, I gave Jimmy the notes and, as usual, he sorta glanced at them and then threw them down on the bed with a terse, "Everybody's got an opinion." Later on, he remarked on one of the comments and said Tony was exactly right about a certain moment in the play. That's when I knew he had picked them up again and looked at them. He's very funny.

Anyway, Irene and I went to a Mexican Restaurant where I bought her a taco and we talked about her and we talked about me and she remarked that this production was the first time she had done something with people she didn't really know. We both loved the experience and were excited to become closer friends. She also told me of the continual nightmare of trying to produce theatre--especially non-profit theatre.

On my way home, I dropped in on Paul Zollo. Paul is the Editor of SongTalk Magazine, the journal of the National Academy of Songwriters. Paul and I crossed swords many times when I worked for NAS, but we always, in our differences, admired and respected each other's work. Since leaving NAS, I have occasionally just "dropped in" on him and played music or sat and talked. I did it again this afternoon.

The house looked deserted with the shades down, but his car was out front, so I knocked. I noticed an old air conditioner unit in disrepair on the porch. Soon I heard some noise and Paul answered in his boxer shorts. He made a joke about "dressing." I joked, "Not on my account. I love little Jewish boys in their boxers...".

He led me into an inner room where there was a window unit A/C trying deseperately to keep the room cool--it's over 100 outside in L.A. summer heat wave. The room has an old upright piano, several guitars strewn about, a nice sound system and tons of CDs.

For years, Paul has worked on building a career as a songwriter/performer in Los Angeles. His approach to writing sometimes sets him back with the music industry because he isn't especially "commercial" in the classic sense. He has a great way with words -- he's a rather literary type from Chicago -- but his little "Cat Stevens" voice and gentle, intellectual, rather folkish approach clashes with today's rap and hard rock mentality. Record labels are out for "the next big thing," as you might imagine.

He explained that his wife, Leslie, was out of town visiting a friend of theirs whose cancer, which had been in remission, suddenly reappeared. He told me he was just sitting and listening to some tracks he had recently recorded and he said he had a gift for me. It was a cassette with a new song of his. He told me a long time dream had come true for him:

Art Garfunkel was singing back-up on the cut.

He played it for me and it sounded just great. Then he played me another song where he used Parthenon Huxley, another great writer/singer on the L.A. scene. I made him play that one a few times. Really liked the musicianship and the sound. He said I had inspired him. He loved how, as I was writing The Last Session, I would make a tape of one song, pass it around, make another tape of a song or two and then pass it around. He said that's what he was going to do.

I told him about my "book," the printout from these diary pages, and told him I wanted him to read it and tell me what he thought about it. I told you before he is very intellectual and could give me some excellent feedback.

He also told me that a certain friend of ours had made a reappearance in his life: George B. -- I'm only going to use initials. George B. is a novel in himself but the one thing I can tell you about him is that he used to work with us and he is totally and completely clinically, a schizophrenic. He wasn't at first when he first began working with us, but after several years, suddenly out of the blue, he became this completely insane person. I suspect he had been taking drugs (prescribed ones to stave off the schizo) and then he must have stopped taking them.

The first indication I had that something was wrong was when, one day, George B. didn't show up for work. Not like him at all. Then he called and said he had found Jesus or something. Then one of the office guys went out there and he had arranged all his furniture into a bunker, as if he were going to be attacked. Then he fell in love with a hooker. Finally we got calls from a neighbor that he was attacking cars in the streets with trashcans.

Paul Zollo and I called the County Health Dept. and we went over there and watched them haul George away in hand cuffs, and all the while he was telling us there were cameras in the trees and that he knew Jesus and -- well, it was heartbreaking to watch. But that's not the whole story.

Paul tells me that George B. has reappeared only this time he has written a book. A full length account of the whole incident is included in this book, but the weird part is that he is still insane. The book is written completely from the first person as if all his fantasies and madness were the reality and that we were all blind because we could not see that he has a great spiritual insight.

I was stunned when Paul showed me this book. It's perfectly typed. And Paul insists that he did it on a typewriter. It's almost unreadable because he is absolutely insane. There are scripture verses and long chapters which have an infinite amount of detail in them--some of it "spiritual insights," some of it descriptions of his own experiences. He was always one to get every detail. I am mentioned in the "Acknowledgments" at the beginning of the book. He even spelled my last name right!

I wonder if my "book" is any less sane than his?

Probably not.

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Thursday, August 15, 1996
The Washington Post. Can A Man Make A Difference?

This morning, one Elizabeth Kastor of The Washington Post, called me to ask me about the new drugs I've been taking. Specifically, she was referring to the big talk of "new hope" and "cure" -- words hardly used in the fight against AIDS up until this last meeting in Vancouver. She was talking to people for whom the drugs were working and to those who were not doing well on them. And she wanted to know what the effect of all that hopeful talk had on "us."

I told her, firstly, that I felt I was still alive because of the Crixivan. I told her that I remembered, prior to that, feeling as if The Last Session would, indeed, be the very last thing I'd ever do before "checking out." But that I really am beginning to see a life beyond this month or this year. So, yeah, there's big difference in my attitude.

But I also told her I had learned something very valuable through all this. I believe we have progressed so quickly with our show precisely because we felt the "deadline" approaching. It energized us and made us do things in a compressed time schedule -- out of desperation, for sure -- that we might not have done had we not felt that way. And mainly, I said, I never want to lose that feeling.

I also told her that due to the fact that these drugs were given to us without the usual years of study, I still have no idea if they are going to be helpful in the long run, nor do I know if there are hidden dangers lurking around the corner that no one could anticipate. So, my attitude it still "one day at a time."

None of us have assurances that we'll see tomorrow. Having a disease that kills might make this reality more real, but I still believe the best thing I can do for myself is to never assume I have any more time left. I have today and today I'll go do as much as I can and do exactly the things that I want to do--like get Jimmy's birthday present, for instance. I know what I want to give him.

Yesterday, also, I went to visit my aspiring songwriter friend, David Robyn. He's really been writing some big themes lately about racism and bigotry and the like. At one point he leaned back on the couch and just said how much the 6:00 news depresses him. That when he hears news about people being so cruel to each other, he just gets so down. Then he turned to me and he asked, "How can I hope -- how can I think that I can make a difference? How can one man make a difference?"

I looked up at him from the floor where I was seating opposite and I said, "Only one person can make a difference. Ever see a monument to a committee?" (No, I didn't make up that saying.)

We talked about it. I told him that I don't remember there ever being a time when a group made a change. It always takes one person. One voice "crying in the wilderness," if you will, to make a change in this world. It can be God or it can be a child. But until someone has the wisdom and the strength to stand firm and tell Truth with compassion and love, he will never make that difference.

Even in my own small way, I have watched this page and my musical make differences in people's lives and it is the most gratifying and beautiful thing that can be. One person telling his own Truth, fighting for life and fighting for decency and respect. Standing and falling. Winning and losing. Hey, that's life, isn't it? But at least it IS life. And all our hopes and dreams come from that simple fact.

We are alive and we can change. And in so doing, we change the world.

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Friday, August 16, 1996
Jimmy's 50th.

Lola's is this trendy restaurant on Fairfax Avenue in Hollywood. It's all done in tan (or is it teal?) with lots of natural wood and the seats and couches where one sits for dinner are done in fake leopard skin. But for some reason it looks tasteful anyway. The thing that makes Lola's is their martini menu. It's two pages long and when they serve you your martini, you get it with a little metal martini can that looks like a miniature milk can. Sort of like ordering a malt and getting the big metal mixing cup with it.

This is where we held Jimmy's 50th Birthday Party hosted by Doug and Anita Tracht. (Doug played the role of "Jim" in our workshop production and Anita is his very beautiful wife who wears designer dresses, has this fabulous figure, big full lips and blond hair. She also is a "Lucy" freak so she loves Jim because he wrote "Lucy In The Afternoon," a memoir of our time with Lucille Ball.

We started kind of early -- around 5 -- but most people didn't begin really arriving until 7 or later, with a ton of them coming about 8:30. We had lots of luminaries. Let me see if I can remember them. Jane Kean (who used to play Trixie on the Honeymooners), Giselle McKensie (who came with Jane--we hadn't met her before. She's a very neat lady and she and I sat and talked about angels. She said she asked heaven for three angels since she had read that there were so many of them. Then she asked if they could look like Mel Gibson, Sean Connery and, well, you get the point. I was crazy about her), Stan Freeman the great jazz pianist, Rue McClanahan from the Golden Girls who was absolutely having the time of her life, John Bettis the great lyricist, Patty & Michael Silversher the songwriting team just nominated for an Emmy, Harriet Schock the songwriter, Mary Jo Catlett the actress, and lots of friends whose names you wouldn't know but who we love and cherish.

I think Jimmy is taking the act of turning 50 a little harder than he's letting on. He pretended most of the day that is hasn't bothered him but it has. And also last night his sciatica -- his back -- was hurting worse than ever. But I can't get him to stay in bed or do his exercises. He still has two weeks before he goes to New York to scout theatres, though, so maybe I can convince him.

I think the neatest thing about last night, for me, was having so many of my friends who hadn't seen me in a while so surprised and happy that I look so good these days. My face is filling out again, I'm still gaining weight. More than a few of them told me that the last time they had seen me, they really thought I was dying. It's funny. They can't say the word "dying" in front of me. Usually they say, "The last time I saw you I thought you were...uh..."

"...dying," I usually chime in. I'm not afraid to hear it. I'm not afraid to say it. For many of us who suffered so much, dying became a thing that started to become a comforting thought. Oh, I was holding the death angel off with everything I had in me, but I wasn't afraid of it. I thought of it as the peace I would finally get after a long, hard, painful fight. So, death is my friend, my comforting end to all of it.

But these days, I am so happy to be alive and everyone can tell. I sat with Giselle and talked. As I said, we'd never met before last night but she turned to me at one point and said, "You just radiate health. I can feel it beaming from you." I must have smiled a mile wide on that one. After so long looking like some drawn skeleton, it feels wonderful.

Naturally, we videotaped the night and when we got home, we put the tape on and LORD! I looked wonderful!! Just the other night we were looking at videos from the cruise where I had been so very, very weak and sick. My shoulders and neck and face were just bones. And to compare that video with what I saw last night. Honestly, it looked like two different people!

So, you're reading the diary of a very happy man right now. I know reading about someone being healthy may not be as dramatic as reading all the travails, so that means I'll have to do other things to be "interesting" to you, but that's a challenge I'm very glad to take on. To be alive and healthy is the most wonderful thing in the world. Truly magnificent. I hope, if you are reading this and you are in good health, I've helped to make you realize what a gift it is. If not, then turn back to the first page of this diary and start reading. You'll learn a lot.

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Saturday, August 17, 1996
Weird Reflections On A Long Life.

Weird things are happening in my head. I'm having peculiar thoughts and fears these days. And yesterday, as Jimmy and I took the day off to just watch movies on video (and care for his still terribly painful back condition), I had a chance to just stop and think for awhile. But there's definitely a new reality settling in over me and I'm not sure how to handle it except to just accept it and get used to it-- and, I suppose, talk about it.

I had a revelation last night. The revelation is that when you live with the assumption that you're going to die very soon, you don't give much thought long term thinking. Everything is always in the moment. Personally, it released me from certain kinds of stress, believe it or not.

I'll give you an example. You see, over the past few years I've managed to run up a bit of a debt. Okay, a lot of debt. They call AIDS the disease of poverty.

But as a "Disease of Poverty" it also destroys the bank accounts of just about anyone who gets it -- unless you had, up to that point, collected tons of insurance policies (life and health) and had some extremely good work benefits--or were already a millionaire or something. Jimmy and I have had our share of close calls in the bills department. Sometimes friends would just lend us rent money (which we have paid back). Sometimes we stood in line at the APLA Food Bank for eggs and milk and ravioli in a can. I really liked the ravioli in a can but the weekly choices don't bring much variety. I've also asked for assistance at agencies who help PWAs. None of them ever made me feel like a beggar and several still call me on a regular basis to see how I'm doing. I always tell them I'm doing extraordinary things and I thank them for their part in keeping me and Jimmy alive (and Thurber the Cat) alive.

And I tell them I'm going to pay them back.

I realized last night that I have been kind of working and living and assuming that I would never have to face these bills because I wouldn't live long enough or make enough money for it to matter. I'd just die and the bills would go away.

Well, last night it dawned on me that I'm not dying right now. In fact, I keep getting stronger and more healthy because of the Crixivan. Suddenly last night, sitting on the couch, I felt the full weight of all my bills crushing in on me. And what a peculiar feeling it was. I have been honestly living in a fool's paradise thinking they would all go away when I die (soon). When the bill collectors have called in the past, I would just tell them to write me off because I wouldn't live long enough to get any money for them.

There are some bills that have gone through at least ten collection agencies. You know how it works, don't you? The bank "sells" the debt to a collector for, what? 10 cents on the dollar? who tries to get the money from me. Fails. And then sells it to someone else for a discount, and on and on it goes. Old credit card debt. Hospital bills. An old surgery bill from god knows how long ago.

And everytime the bill changes hands, I get a new call. I deal with them honestly and with as much respect as possible but when I told them that even sending $5.00 was not possible because in my mind, $5 was two meals (and possible leftover if you cooked it right). But these collectors are usually just kids trying to make a buck in college, or other people at the bottom rung of job hunting. Sometimes they are incredibly rude and threatening. Some have practically cried on the phone with me, especially if they called me when I was really weak or sick.

They could hear death in my voice.

It's funny though, I had accepted the "fact" that I was not going to make it that much longer no matter how hard I fought. But somewhere deep inside I also thought that I would find a way to pay it all back. That I would return every cent the US government ever gave me to help me. That I would return to MusiCares and the Society of Singers and National Academy of Songwriters and Aid for AIDS every single dime TIMES TEN they ever gave me to help me through. It always felt like a hollow promise, though. I never truly believed I'd ever live long enough to actually fulfill those pledges.

Now I'm going to do it. I don't know how. But I have always felt that if someone is given something, you should repay that debt many times over. Seeds thrown to me will not find fallow ground. Oh, I know it's a big promise. Hell, the medications alone these days for someone like me are over $2000 a month. Maybe even $3000. I don't know. How can I pay that back?

I don't know. But I will. I will pay back every penny. You see, I do not live with the idea that anyone "owes" me anything. Not the government. Not the music industry. Not anyone. But the fact that I have had help when I was at my most helpless; the fact that I was given food and medication and rent money when I needed it the most is no small thing. It is why I am still here.

No one owed me that. But you see, now that I have been there; now that I have stood in those food lines. Or in lines at the county clinic with prostitutes and illegals. Now that I know what it feels like to have to drive to Pacoima for an x-ray and to San Fernando for medications and Panarama City to see the doctor; now that that has become my world, and I know what it feels like to be in need and in want, it's a lesson I will never forget.

And I'm going to pay them all back. Times ten. Time a hundred. Maybe my whole life and potential fortune will become a big foundation. After all, if the US government cuts back on helping the poor -- am I really one of "the poor?" -- then it will be up to us to feed and clothe and medicate. I have to tell you that one of the biggest problems I have with groups like the Chrisitian Coalition is the fact that they do everything BUT look out for the poor. It's almost obscene the way Rush Limbaugh makes fun of the poor. I remember one show of his I was watching and his design for the poor was to take food and hide it in a alleyway so the "per" (as he pronounced "poor") would have to work a little to get their "free food."

How arrogant. How cruel.

So, my friends, I didn't mean to go off on a tangent like that. The point I'm making is that for the first time since this death sentence of AIDS was dropped on me, I'm seeing a future. Suddenly I'm worried about the national debt! HA! Never worried about it before. Suddenly I'm worried about Medicare and the future of this planet and our kids.

You see what this means, don't you? While I am thrilled that I might have a new lease on life because of the medications, I am now suddenly thrust back into "your" world. I suddenly have a future. And instead of measuring my life by days, I am seeing months and years ahead of me. You know what? It's kinda scary! There was almost a protective cocoon around me when I didn't think I had to think of the future. I had this image that God would peacefully come take me away and I wouldn't have to think of it or live in it.

Suddenly all that has changed. And I don't want it to change. Or rather I don't want to forget the way all this has made me feel. I told the lady from the Washington Post that I wanted to remember all the lessons I had learned: To never presuppose the future. To always live as if today were the last good day. To never let up or get lazy because of "so much time ahead." I think I only have a home page because I wanted to say a few things to the world before dying.

To make sure someone somewhere knew that I existed.

Oh, sure, I could get hit by a bus tomorrow (as everyone has said to me all along when philosophizing about "living for today") but it's not as real as a killer virus making you sick all the time. Now the killer virus is being held temporarily at bay. For how long? Well, that's what all the talk is about. Maybe forever. Maybe for only a few months. So, in reality, I may never see all those bill collectors waiting for me as I exit the stage after collecting my Tony Award.

But I think if I had to choose, I'd choose staying around and facing them. I'd choose survival and endurance. In fact, that's what I do choose. As I angrily told one arrogant bill collector once, who had just tried to threaten me, "Do your worst. But before you do, go spend 21 days on intravenous pentamadine which gives you a tin foil taste in your mouth and every meal makes you nauseous. Then you come back here and tell me what you can do to me that's half as scary as the prospect of having to go through it again." I refused to let anyone scare me.

So, though I feel unsettled with these new fears and strange thoughts hovering in and around me -- this is a revolutionary change, you know -- I must press on and I'll try to just keep my wits and my courage about me. This too shall pass. I am still alive. Alive a lot longer than Jimmy and I (and all my family and friends) ever dreamed. And I might live even longer than I ever dared even hope! It may be a problem -- or it might bring its own share of problems -- but these are the kinds of problems I have begged for. Bring them on. Bring them all on.

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Sunday, August 18, 1996
A Window of Opportunity.

Talking about all that mortality stuff yesterday led me to a conclusion I needed to come to. Call it a revelation. Yesterday, again, Jimmy and I took the whole day off. I took some of my appetite medication which totally zones my brain out but makes me eat like a pig. And Jimmy sat in his "comfy chair" which he won on Jeopardy. Yes, he was a contestant on Jeopardy once--he came in second, by the way. His "Final Jeopardy" question was this: The category was "Organizations."

"Which political organization was named after the man they believed to be the first casualty of the Cold War?" I'll let you think about it.

Meanwhile, I've figure out where I am in all this. It started when I read a note from a friend who is also on Crixivan, the same protease inhibitor which is doing so well for me. He and his partner, both of whom have AIDS began Crixivan about the same time I did and they had the same fantastic results I did after one month: T-cells jumping up and viral load going down to almost zero. Very nice results.

Only trouble is that after three months or so, their viral loads began to rise and their t-cells began to drop. So the drug only lasted, for them, a very short time. I have another friend for whom the drug has worked for over a year. He got in on one of the first tests of the drug.

My history is this: I began on the first protease inhibitor (Saquinavir) in December of this year and it failed after only a few months. That was when I was getting very, very sick. So we added Crixivan in May and that's when I began showing miraculous results. We also had done the IV TPN (nutrition) therapy simultaneously which I am no longer doing.

What is the difference between the two results of my friends listed above? Well, in the first case where the drug began to fail, the patient was very far along in the progression of the disease. I believe when he started, he had no t-cells whatsoever and then they rose to 80. In the case of the man for whom it was worked for a long time, he had lots of t-cells, over 500 I think. And the pattern that has emerged is that the drug helps best those who are relatively healthy. The farther along you are in the progression of the disease, the more likely the drug will become less effective over time.

I began this therapy with 40 t-cells. That's far along in the progression of the disease according to "those who know." And I had already had one major O.I. (opportunistic infection) and several minor ones -- all of which nearly killed me. So, while I'm out here dreaming that all is well and that I'm going to live forever, the facts are that it is still a crap shoot for me. Understand, dear reader, I am not trying to alarm you or think negative thoughts. I'm just trying to understand and get a realistic fix on what my possibilities are. As someone told me last week, "Hey, man, you're on the cutting edge of something nobody's done before..."

Well, fine. Maybe. Cutting edge. Hm. I'll pass. I'm not cut out to be a hero, thank you very much.

What I have is a Window of Opportunity. If the first part of my post-diagnosis life was "The Bonus Round" -- as I called it when I survived PCP (Pneumocystis Pneumonia) -- then this new round I'm calling:

Bonus Round Part 2: A Window of Opportunity.

This is a window that has opened up for me to do all the things I have been dreaming of doing, but doing them with full health on my side. It might evaporate tomorrow. It might go on forever. I don't know. I can't assume anything. But I know this: My show, The Last Session and the chance to perform it, arrange it, have fun with it, act in it, (and to be planning a new show) was not something I had counted on.

But this new life -- however temporary it might be -- gives me a new Window of Opportunity to get it all done. Talk about urgency! I look down and my little belly is actually showing a bit of a roll. First time in over three years. I look at my arms and they are becoming buff almost -- almost. How long have I, and have so many of you out there have told me you have prayed for this to happen for me? You cannot know how much it means to me when you write me and just tell me you're praying for me or thinking of me or just cheering me on.

Your wishes for me do not go unnoticed and your care constantly gives me the desire to complete whatever "mission" I might be on -- if I'm on a mission. All I know is that as of now, I've been given a chance to do this in full strength.

Back at the beginning of March, before I had this computer and before I set up my home page, we did the first reading of the The Last Session. I was not strong, but I was strong enough. Most of my friends, especially Jimmy and Kim & Ronda, were very careful about me. They were constantly worried that I was pushing myself too hard. By the night of the reading, I was coughing a bit and I coughed a few too many times for comfort during the show itself. They told me I had done too much and had pushed myself too far.

After the show, I went into a free-fall healthwise, most of which is documented here on this site. At the time, I wasn't aware I was in a free fall as you can tell if you read it day by day starting in March, but looking back, you can probably now read between the lines and see the true arc of someone dying right before your very eyes. But still, we endured and we managed to pull out of the nosedive just as the L.A. workshop was getting underway.

Now we're heading for New York and instead of dying right in front of your eyes, I am thriving. And I know why. It's because the Powers that Be want me to finish this show (and maybe a hundred more, of course), but for now it is my destiny to put this show up and let it speak to the world. Oh, yes, I know it's "just a show." But this show is my life and it says to the world the things I want to say.

(Addendum: Jimmy and I were talking yesterday and it occurred to us that even if both of us were to die tomorrow, like in a car crash or something, the show would go on. It is now alive and kicking and it is in the hands of people who care about it, so there's no danger this show will simply fade away. In effect, it doesn't need us anymore to simply survive.)

But I want to do it. After all this time devoted to writing it and staging it, to not be able to take the next step would be heartbreaking, to say the least. And it's funny. I like making people laugh and I like making them cry. And I like giving them inspiration to go on. All of this is in our play. And there is only one time in which I can do this:

Right now. In the "Bonus Round Part 2: A Window of Opportunity."

On Monday we go back to work. Of course, first I gotta clean the house. You can't imagine what it looks like when two slobby men decide to take two days off calling out for Chinese food and dropping newspapers all over and... well, Jimmy hates a dirty house, so I think I'll suprise him and clean up a little. It's the least I can do after all he's done for me. And also after all, he's old now. (evil laugh).

The John Birch Society.

The question to the answer on Jeopardy was "The John Birch Society."

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Monday, August 19, 1996
Good Honest Work. Playing with Lynne.

After all that thinking I did over the weekend -- which makes my brain hurt -- I devoted today to just good hard work. I spent a great part of the day working on the score to the show. It is slow and difficult but I'm slogging through it little by little.

Then this evening, I met with Lynne Keller, one of my favorite musicians. Lynne loves The Last Session and wants to do anything she can to help us move it along. So, last night she grabbed her bass and came over here and we played through a few of the songs. Most significantly we worked on Somebody's Friend and Connected. Musically, Somebody's Friend is a strange little piece. In my head, I've always heard a reggae beat, but on the piano when it's just me, I can't do the sophisticated kind of bass it would need to truly make it what I had envisioned. Well, Lynne picked it up right away and suddenly we were in a whole different place musically. It was beautiful. Jimmy came through and said it sounded incredible. Of course, his reference was Eartha Kitt, which made me go white for a second, but he was referring to the slinky, almost Eastern tone the song took on. And he always thought it was a country tune!

Connected also was a revelation. We envisioned a stark, subtle percussion landscape with a hint of a bagpipe in the background, like a battlefield after the war is over and all the dead are lying around in heaps, smoke rising from the charred landscape. And since the song appears right after Friendly Fire, which is a war song, it was chilling hearing it like that in our heads.

Lynne and I have decided to put together a recording session with her band and possibly some singers and record at least these two songs. I have to tell you that it was thrilling hearing these songs brought to a new dimension. I purposely wrote them so that they would sound fine and complete with just a piano/vocal -- and they work very well that way. But when you hear all the sonic possibilities waiting out there, it's absolutely thrilling.

Also today, I talked one of my favorite groups, "Naked to the World" into doing a song from the show, and on October 1st, I've booked myself into a club out on the Santa Monica Pier. It's called Rusty's. Right now, it'll be just me and the piano, but I might have to bring on some other musicians (like Lynne) to see if we can't do something very special.

The excitement continues to build. Jimmy and Ronda goes off to New York on the 4th to meet with Carl the Producer and to scout locations. Then we schedule our New York reading. Hopefully, I'll have done some great work musically and have finished working out the manuscript for the "book" drawn from these pages you are reading right now.

I've enlisted Irene Oppenheim to be the editor on the book and we are now working to give it shape. Trouble with flat matter books is you can't point at a hyper link and jump! Well, we'll just have to deal with all these things one at a time.

Oh, the swelling gland behind my jaw has not gone down. I still am not incurring any fever or pain. But the swelling is not subsiding either. I've called Dr. Ellie again. He really doesn't know quite what it could be. Hopefully, when I'm in Santa Monica tomorrow (Tuesday) he might be available for a quick meeting.

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Tuesday, August 20, 1996
Rusty's Surf Ranch & Walking the Pier with Ronda.

Monday morning was devoted to my usual weekly visit with songwriter David Robyn. He's been building a recording studio in his back yard. Though David is a very serious writer and singer, he is also the hardest working, take any music gig that will pay money, person I know. Too many aspiring writers think they are too good to do certain jobs. But even while David is writing extraordinary songs for his career, he will still play a sports bar where no one is listening, or for a group of old ladies on the Queen Mary -- he works five or six nights a week and only occasionally really gets to do gigs where it's about *him* and only him. Oh, he hates it and cusses about it, but he's into making his studio work and cutting his demo and keeping his focus on the thing he loves best: his own career. And I salute him for that. I tell him *he's* the hardest working man in showbiz.

So, as his "Creative Consultant" we went over some rewrites and a new song of his. I made some suggestions and acted very superior as always. Then went out to a new Mexican Restaurant and feasted alone. Then I went by Bob's Pharmacy to pick up medications and up through Hollywood by way of La Cienega to go home. I could have taken the San Diego Freeway but I felt like driving a bit and just doing some thinking (Oh no! Not again!).

Irene, who is editing my "book," which consists of March through July of this diary, wants me to write an introduction which will acquaint readers with what they're reading. If you go back to March, you will see that I open this diary rather abruptly pulling people into the action with little or not set-up. Also, when I began writing this, I didn't know I was allowing readers to watch a man die right before their very eyes. But that's what was happening. Oh, you have to read between the lines to really *see* it, but that's what was happening. Luckily, the story has a happy ending and I'm not dead. Yet.

Then, tonight Ronda my Publisher and I went to Rusty's Surf Ranch on the Santa Monica Pier. I've been booked to play a gig at Rusty's on October 1st and I wanted to go see it. And it looks exactly as I pictured it. Kinda big and tall, made of wood, lots of surf boards hanging on the walls, big stage area which could use better lighting, and tables and chairs. Seats probably a hundred or so. Maybe more. Maybe less. The tall ceilings are deceptive.

And the menu is a trashy food lover's delight. About as many deep fried things as is possible to deep fry, barbeque, burgers, meatloaf and mashed potatoes (which is what Ronda ate), fries, onion rings -- well, you get the picture, I'm sure. More fat in that room than at the Republican convention.

During one of the acts, Ronda and I strolled out and down the pier to just listen to the water and talk. They've built new roller coasters and ferris wheels out there and it was a warm night with a cool moist breeze blowing in from the ocean. We talked about "the book" and she suggested the Bob-A-Lew might be interested in helping me set up an independent record label where I would sign a few acts and record them under my own publishing company, "Li'l Shack O'Tunes." It seems like an eternity now, but several years ago, I helped found the current acoustic songwriter scene in Los Angeles and so I have a good reputation for finding and developing talent.

We wandered back into Rusty's about 10 and listened to about 15 minutes of Matthew Lee's Band, then headed back to the Valley. It was nice to get out and about. For too many months -- years? -- I was too sick to go out at night. Now in this new era, it's wonderful to just go out and hear music, walk on the pier and feel "normal" again. I just hope it lasts, this window of opportunity that's been handed to me.

I just want it to last.

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Wednesday, August 21, 1996
More Thoughts About New Life And, Uh, Tarzan.

This is from the AIDS online discussion group. Once again, it is someone who has been living with HIV for a very long time thinking about loud about "what it all means." I thought it quite illustrative of the life "we" lead, so I now share it with you. He wrote:
Today a friend, (who is also living with AIDS), and I spent the day together. My friend is rebuilding his house, he is actually pretty darn close to finishing the project. So as we stood on his wonderful deck - looking out at the city over his WONDERFUL garden I brought out something that he confided in me a few years back, I said "Ya know this place looks great! I bet you don't remember this but a few years back we stood on a crumbling staircase looking at this view and your said, "You know, my biggest fear is that I won't live to see this done!" I said, "Well it is pretty near done - and you and I are both still here to enjoy it!" He smiled as said, "Can you believe what we have lived through, all the stuff we were willing to put up with, all the things that we were willing to "live with" - just to live? Ya know - since I have been taking the protease inhibitors my skin problems are gone, my stool has been solid - this is LIFE!"

That made me realize, we had been willing to LIVE with a lot. For a year and a half I had endless diarrhea. My gut would cramp so bad that tears would steam down my face, while I sat on the toliet feeling like monster had reached up and was pulling my guts out through the toliet. Due to the drugs that I was taking I became ultra sensitive to the sun and would burn from about 3 minutes of exposure. due to cronic coughs and congestion, (mild PCP and MAC that they never seemed to be able to clear up), in my lungs I had stop and rest several times while climbing up the stairs to my apartment.

I can't remember the last time I felt hungry - or horny for that matter, just a few more things that I gave up for "life". I can't remember the last time I "tasted" anything that I ate - and the "this tastes wonderful" was almost a cruel joke! - or when I didn't have a fuzzy white coating on my tongue. My phobias of Doctors - hospitals - and needles have long since evaporated, more causalities of "life". I don't remember the last time I made it through a day without a nap - another casualty of life! I can't remember when I last felt "good" - whatever good was!

I face death every day - morbidity is part of my life, and I live with that. My friend is right. To go on with life we were willing to give up a lot and willing to put up with a lot. Thanks to Protease Inhibitors and the new drug combinations we are getting a "summer in the sun", a chance to live like we used to, to be normal again, and we are both thankful for that.

But the other thing that I realized was that -- neither of us was saying it, but it was obvious -- that neither of us was looking forward to re-entering that endless circle of illness, discomfort, diseases, skin infections, funguses and all the rest. And both of us know that our "summer in the sun" will end soon enough. As we looked at the view I knew we were both thinking "Dear God, don't make me go through it again, please god -- I don't know if I can go back to living like that again!" And in that thought maybe the cruelest of answers, the reality is that soon enough the summer will end - the T-cells will drop - the viral load will rise - and the wheel will start to turn again - the battle will start again - with that realization I turned to my friend and said, "Isn't it a wonderful day, the sun is so warm - hasn't it been a wonderful summer, aren't you just glad to be alive today?!"

And therein lies the real answer, "Be here now, live for today, for this moment - make it the most wonderous moment of your life, don't worry about tomorrow - for soon enough tomorrow will be today - and you will be trying to make that the most wonderous moment of your life - so just BE HERE NOW! Enjoy THIS moment, make it the best you can!"

How can I add to that? I told Ronda the other night that I felt a bit like Tarzan swinging through the jungle. This protease inhibitor is my current vine and we're swinging through the jungle, but it will fail eventually. All these drugs fail eventually. But there are new ones on the way. One very good one is scheduled for January. If I can just hold on -- if this vine will just stay strong so that I when I need to reach out for the next one, there will be one to grab, I'll be a very contented man. A cure would also be nice. But just feeling alive and free is enough for now.

I got my new bloodwork results back from Dr. Ellie. The viral load results weren't ready but my t-cells have gone up again. (They had been at 40. Then the last test they were at 125.) This test they are at 140! This is great. Oh, I'd love for them to be over 200, but at least they have stopped dropping. For this I am very happy. (By the way, normal is around 1200, so we still have AIDS, you understand and most of my immune system is still shot to hell, but I'll happily accept any and all improvement, thank you very much).

Now, if I could just do the Tarzan yell...

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Thursday, August 22, 1996
Scoring. Poetry. Old Notes. Jonathan's letter.

Yesterday, Jim had meetings all day with other people so I got some great time alone in the house for the first time in eons. It was so much fun! First I cleaned out a bunch of old e-mails and converted them to Word files and refiled them according to sender--you know, just clean-up work. It was amazing. I have thousands of e-mails! But that doesn't mean I don't want all of you to write me. I love correspondence.

In fact, one thing I found incredibly cool is a note I got from a lady in Detroit who works at an AIDS Library -- or maybe she's running it, who knows? -- who said she read the lyrics to Connected out loud at a coffeehouse there. She said the people liked it so much, she asked permission of me to read even more of them. Now, folks, if that's not a fantasy come true, what is? To be a "poet" whose works are read in coffeehouses. It's so 50s!!

I wonder if I should start wearing all black? I'd look like everyone in the video "The Making of 'Company' where Sondheim, et al, are in black turtlenecks with long sideburns. (How do you get more hip than that?)

Also, yesterday, for the first time, I went to the piano and began to play some of the piano arrangements I've been doing here at the computer. Whoa. I'm not good at this, yet. Very hard to read. You know, I don't think I've ever really *looked* at a piano score to a musical before. If someone were looking at my pages for the first time, they'd have a really hard time figuring out where to put their hands and fingers. I have to admit I'm a amateur at this. So I called my friends, David Rambo -- who is not a *great* pianist, but who is fairly good -- and I called Stan Freeman, who does this for a living.

I'm going to have both of them look all this over and make corrections so that it's clearer. I see I've been assuming too much with this and it really needs some hard, concentrated work at the piano to get it right. Up to this point, I've mostly been learning how to use the notation program.

You see, I've "written" the score in my head. Or rather, I play it the same way almost everytime. But I never really "think" about what I play. I just play it. It's a whole new experience for me to have to think about what my fingers are actually playing, and then find a way to put that on paper. I had sent a couple of these over to David last week. He called me and said he loved playing them, but that they needed phrasing marks and diacritical marks and stuff. Goodness.

It's kinda like my Spanish. I sort of understand it when someone says it to me, but I'm not that good at thinking of the right words when I need to say something back. I can read music, but when they tell me to write down my own notes, I forget all the options. I guess practice and looking at other scores will help enormously.

It was fun seeing Olle Palmer's entry in the guestbook yesterday. He's the 13 year old in Australia and I love his home page. For a kid -- hell, for an adult -- he's got a fabulous sense of style. And he's a good writer, too. I told him that I tell people that I am actually him pretending to be me.

I took a Marinol yesterday so my appetite would be ravenous (and because I wasn't going to go out--it makes me kinda high). I ate so much yesterday, it was astounding. That stuff really does work. I've gained another pound, by the way. I'm plateauing at 162 and want to try to work my way up to 170. I have to be careful, though, and keep on execising. My belly will grow if I don't watch out. But, frankly, any weight at all is a buffer against wasting in case some lovely Opportunistic Infection comes along. By the way, the swelling in the glands behind my jaws continues. I wrote a note to some others on the net who are taking Crix to see if they are experiencing the same thing. I've had four responses from people who say they are. No sweats. No fever. No tenderness. Just swelling.

Jimmy and I are also in the middle of Spring Cleaning. We're tossing out old clothes that don't fit, old papers that are just piled up, and getting ready to really clean this place up top to bottom. We've even enlisted this guy, Santana, to come next week to do the really hard stuff. Between Jimmy's sciatica and my need to avoid dust and germs (especially with a cat around), we've decided it wouldn't be healthy for either of us to do the real hard core cleaning. So it's nice to get rid of old stuff. Plus, we only have only one closet and it's not large. It was beginning to overtake us.

One very cool thing I found in the clean-up was the very first worksheet of Somebody's Friend. It's barely recognizable because you can see I'm just writing random things. The bridge part has lot of "HIV-free" stuff that didn't make the final cut. Then the very last thing on the page -- and I remember writing this; it was the trigger that made me realize I "had" a song -- were the were the words "Where the HIV-free party never ends...". Funny how one phrase, once you find it, tells you whether or not you've got a song there. But when I hit that phrase, I knew I had a song. In that phrase is the ultimate dream.

Oh! I had to share this with you. In cleaning out the old e-mails, I ran across one from my little nephew Jonathan. He's under 10. Maybe 8 or 9. Anyway, his daddy, Corky, is teaching him computers and he wrote me an e-mail a few months ago. We haven't hidden my "illness" from Corky's two kids -- Elizabeth is 11 or 12 I think, or close to it. But I just love the things a kid will write because it's so blunt. Here's his note:

Dear Uncle Steve,

This is Jonathan Miles Schalchlin. I thought you were dead. I was worried but my dad told me you were not. I was happy when I grow up Im going to be a surgeon just like my hero Dr. Ham. how are you doing? If you don't die before I make it or if I make befor they do. Write me a song about a surgeon take appentix out of a little boy pleaes. I had my appentix out last year I was scared but if you still have you and you have to get yours out don't be scared it will be over sooner then you now it but you can't walk for a while.


I left all the misspellings in because I love them and I love him. Isn't that great, though? "I thought you were dead. I was worried..."

Nope. Not dead yet. But I forgot that my assignment was to write a song about a surgeon who takes an appendix out of a little boy. Well, if I can write about AIDS, I can certainly find something about appendixes. Appendices?

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Friday, August 23, 1996
New Pictures and Playing with David.

Today we finally got our big black and white prints of scenes from our L.A. workshop production and I want you all to know that I slaved away until after midnight putting them on this site for you. *martyr*

I also went to David Rambo's house to play the piano with him. Actually, it was to see if he could play the piano arrangements I've been doing and all I can say in my defense here is that I've never in my life written a piano score. It seems to be a bit harder than I had anticipated. I saw lots of places where I could make it clearer and easier to read, and I saw lots and lots of just Pure D old mistakes. (I think that's a southern phrase, Pure D).

You know something funny? Two people sent me mail today commenting on how much I'm doing. Do you know that I feel as if I've been on vacation the last three weeks? Honestly. In fact, I had already decided it was time to really get on the stick and get something done! The only explanation I have for that is that I am clinically insane. I wouldn't rule it out if I were you.

I'm also unfortunately having some kind of e-mail debate with a guy who is this, like, TOTAL Catholic. He's flinking Bible verses at me and talking about the "Infallible Church,"etc. Each to his own, but Lord -- and I thought the Evangelicals and the Scientologists were good proselytizers. He's unrelenting. You know, sometimes when people believe something really, really a whole lot--and when this thing is a religion, especially--they almost consider it a personal afront if you don't let them talk you into becoming one of them. It's as if their own faith relies on getting you converted.

I'm just not in the mood to be converted to anything, but I do keep on writing him back. I've worn down a few. I'm just not convertible. To anything. But if you say something that vibes with me, I'll incorporate your Truth into my life.

When I told him I believed in Unconditional Love, he rolled his cyber eyes and began naming Republicans. "Oh yeah?" He asked. Do you love Newt Gingrich? How about ANY Republican. Is there any Republican you love?" Funny, but I don't remember saying anything about being a Republican-hater.

Of course, I carefully avoided answering the question, too...

Saturday, August 24, 1996

I spent today working on the score (now that I have a better handle on how to do a lot of the notating) and I worked on this home page getting production photographs captioned properly for your enjoyment.

I also made a big ol' pot of chili for dinner. I've left the chicken curry craving behind and am currently in the middle of a Mexican food binge. Maybe I'm pregnant. One thing for sure is I'm still gaining weight (yeah!). Today I hit 166 pounds. That's 29 pounds gained since the wasting. Incredible. I can't begin to tell you how joyful I am that my body is allowing me to gain weight after so many months and years of wasting and malabsorption. I have such a zest for life right now. Honestly, I feel I can't get enough into one day. And my energy level! It's completely off the chart.

I sleep well but not for long periods of time. Don't seem to need it. This morning Jimmy asked me if I slept at all last night. He saw me here at the computer when he went to bed and I was here when he woke up.

I am worried about his pain, though. Now he thinks he may have gout. Add that to his sciatica and he can barely move. I told him I was going to go to New York instead of him if he didn't get better. New York is a walker's city and he can barely make it from the chair to the kitchen right now.

Sunday, August 25, 1996
The Sunday Sermon?

On my AIDS e-mail group, many of the members are getting very philosophical about the effect of AIDS on each of us. I suppose it's because we are becoming very hopeful with these new protease inhibitor drugs and the combination drugs. I think I sorta helped get the ball rolling when a week or so ago, I posted two diary pagesstarting with this one, August 17, 1996.

Then one guy resonded extremely life-affirming note about all the things he has learned since being stricken. All the love that came to him. Some great things he accomplished for himself. And he ended by saying that he was actually glad that he had AIDS. Another man responded similarly, though he didn't think he was so glad about it. He said he just didn't let AIDS become his enemy. And finally, one guy wrote that when AIDS struck, he was already in the process of a great change in life and he had already kicked into high gear. And that he considers AIDS to be a huge nuisance he just flat didn't need. He won't let it kill him (as in, giving up) but he's not at all glad to have AIDS.

Naturally I felt like responding. Here's some of what I wrote:

These perspectives where we are asking ourselves if we were better before AIDS or after AIDS is utterly fascinating to me. This is not a debate nor is anyone right or wrong when it comes to figuring out if the disease has been "good" for us or "bad" for us.

For me, there is no getting away from the fact that is simply is. It just is.

Without AIDS I know I would never have written my musical." Would I have written something equally compelling instead? Who can answer such a question? One friend of mine declares emphatically that I would have. That I did not "need" AIDS to write something of this calibre (forgive the immodesty--it's quite pathologic).

But one cannot get away from the fact that AIDS came first and it is from that continuing experience with its deep emotional highs and lows that the songs came. And these songs have changed people's lives, my own included. I also wouldn't have had such a fun home page, either!

There was a time a couple of years ago when Jimmy, my partner of 11 years, and I were sitting on the couch and I uttered the words, "I'm glad I have AIDS." Perhaps I was just confused. Well, I have learned to appreciate life. Unlike "Harry" [one of the other contributors--not his real name], I was not in the middle of changing my life for the better when it hit. I was feeling a bit aimless at the time.

One of the other writers here mentioned the test of character that AIDS becomes. For me, this is the crux of it all. People of character will take on the disease and fight like hell and become better people because of it. Like anyone who faces a disaster or a heartbreak of this magnitude, AIDS forces you to look inside and find that impossible-to-describe thing that dwells within us all. Maybe it's God or maybe it's just our own humanity, but with AIDS or without it, I touched it and it changed me forever.

Am I glad to have AIDS? No. I am not. But I am glad, maybe for the first time in my life, to be Steve Schalchlin. I know what I have done to survive and I am so proud that I never even thought about giving up. In our show, the lead character of Gideon has decided to commit suicide at the start of the play because he is just tired and run down and sick to death of the struggle. Of all the things that was a challenge for me as a performer to pull off, it was this. I have not been there except in the most fleeting of moments. I'm too much in love with life and I can't help but believe that there is so much more inside of me that I have not even begun to find.

And so not only do I fight for life, but I fight everyday to express myself and to look deeper and deeper inside both my own heart and the hearts of others. I am a believer in life and a believer in the human heart and soul. My grandmother always told me that if I look for the best in others, I will find it and they will rise to the occasion.

I now know that this also works in reverse. If I look for the best in myself, I will find it. I will rise to the occasion. So I keep looking and I keep finding and I am so in love with everyone here and anywhere who does the same because it gives me inspiration to reach even higher.

On a previous day in August I told you that Jimmy came in second on Jeopardy. The category was "Organizations." The answer (to which he had to supply the question) was, "This political organization was named after the man considered to be the first casualty of the Cold War." But I forgot to tell you the answer! You can find it because I put it back at the end of the post for that day, August 18, 1996. Means you'll have to go there and find it. Good luck, my X-Men. Did I ever tell you I once called myself Steve X?

I made up this name for a group once. Then I made a tape of songs in my own little 4 track studio in the back of our house on the mountain in Pennsylvania. It's not very good. In fact, it's unlistenable. But at least I tried to write something! Oh, and the name of the group?

The Kingbeats.

Hmmm. (uh, he's thinking again... somebody stop him now before it's too late...).

Monday, August 26, 1996
Billy Valentine's New Hell.

Read Magellans' Review of our Last Session site. I just found it yesterday.

My brother, Piglet, who is a cop in Dallas, Texas, wrote me and said I was ranting too much in this diary. He just wants the facts, ma'am. Okay, I'll stop. It's just that this is a time of change and I'm trying to do it out loud. This diary is for me, too, ya know! If anyone else thinks I'm ranting too much, let me know. But it's almost over, anyway. I think I've pretty much said everything I want to say.

Today I went to Bob-A-Lew and made copies, then I came home and worked. (There, Corky, isn't that exciting? Are you happy now?

Actually, I did get one e-mail I wanted to share with you. It's from my little cyber-friend Billy Valentine. Billy is in his late 20s, has tattoos on nearly every inch of his body, plays guitar and sings in an alternative rootsy band called "Holy Joe" in San Francisco. Billy did not have a normal childhood. When he was, like, 14 years old he was living on the streets of L.A. hustling and doing drugs. He has been through the very worst one can imagine for a little boy.

He also now has AIDS and he's hanging on to life with every fiber of his being. The Crixivan which has been so good for me is making him very, very sick every day but he keeps taking it hoping this will past. I asked him to write for me one little note or poem that would, like this diary, describe for me what a day is like for him. He sent me this and I asked if I could share it. He gave his permission. I give it to you without comment:

My First Time Through New Hell

The first day in ages when I've been up near 6 am. Reminds me of the first two months on Crixivan - that's my frame of reference from now on for early morning awakenings. And it's no different today, even though I'm telling myself my body has become acclimated to the drug, and believing it.

I slept poorly, maybe from eating so late, maybe from sleeping too much lately. But after I took my 5:45 am capsules, and they hit my stomach and began their dirty work, my bowels try to turn inside-out and I awaken. No more sleep now, maybe later today.

And I open the door to let the cats out into the garden, after greeting each one good morning. And as Bone and I are looking out through the door to the patio, I realize, Indian Summer should be coming on, then winter. Another winter is turning and facing me. And the winters kill me here [San Francisco], with the rain and sleet and dampness and grey, grey, grey all the time. My least favorite color.

But I feel strong, maybe not strong enough to handle winter if it came tomorrow, but two more months away or so, I think I can deal with that. Because I am stronger, I've been to hell and back, again, but this time a different kind of hell. Not filled with needles and massage/escort ads, looking in the mirror and watching speedfreak flesh melt away, playing endless pinball in dirty hustler bars as long as a good looking stranger wants to feed the machine. Crouched outside in the rain in line with the other junkies at needle exchange, wondering if you'll be shooting up alone tonight or if you can round up some company, someone who might stay and talk and not rip off all your stuff while you nod. A friend.

No. Instead, the kind of hell where you look at your face every morning and wonder why it doesn't show, the terrible sickness you feel inside. The raging going on in your bowels, the constant battle in your bloodstream and lymph system that makes your sheets, shirts and pillows feel as though they've been outside in a rainstorm, the fear and sadness that overwhelms you so quickly you don't realize at first you've been eaten alive, until you look at the calendar one day and realize you haven't been outside for 2 weeks.

I can face the winter. And March will come and I will be alive, as I always am. Perhaps a little pale, but I'll be there. You can count on me. I do.

Everytime I start to feel sorry for myself, I'm going to reread this.

Tuesday, August 27, 1996
Setting Sights on October 1st.

I made a big decision today and it feels really good because it solves nearly every problem I have regarding arranging the music for the show. I was wanting to work them out with a band because playing in a band is what I've done most of my adult life. I think. It feels like it anyway. But now David Robyn and Per (his Scandinavian guitarist) plus the rest of his band will be joining me for my gig on October 1st at Rusty's Surf Ranch on the Santa Monica Pier.

For "normal" musicals, ones which have these great orchestral scores, doing a show with only a piano can be a bit of a letdown. But for our show, it actually worked in our favor because the show is small -- four actors onstage, one offstage and because the audience was right on top of us. It was an incredibly intimate experience and the little piano I played -- this tiny console upright with two broken keys (in very crucial places) -- only added to the "realness" of the evening. (I hope that's what it did, but that's all we had and we were very, very lucky to even have that. It was my fault, really, because I refused to use an electric. I wanted wood and strings.)

And from the beginning, I was determined to write songs that could done clearly and easily with just a piano. But with David Robyn's band I can start realizing the songs as "Gideon" would have done them. Raw and live with a rock band set-up -- not loud, mind you -- just fuller. Gosh, isn't this what Barbara Streisand did in "A Star Is Born?" Might be cool to start out with some solos--just me and piano, add acoustic guitar and vocals for a few songs, and then later on, add the band for the last few songs. But I don't want to lose the feel of these songs by getting too elaborate. Well, we'll see how they do.

Man with Band. At Rusty's Surf Ranch. Sorta takes your breath away, doesn't it?

Or I could invite Alan Satchwell's vocal combo -- and Alan blows a very mean trumpet. Hm, they always wear black. Hey, we could do a Beatnik theme. Well, we're in a surf bar! I mean, it's so retro. So sixties beach movie. We could be the bad guys dressed in leather that always teams up with Paul Lynde against the teenagers.

Or we could be Elvis just after he sold out to Hollywood.

Today at lunch Kathleen Capper (Manager of David Robyn) took David, Per and me to lunch at Wolfgang Puck's. All I can say about that place is that I've never seen anything like it. Wolfie has a very interesting sense of style. It kind of felt like a California version of a 90s Bedrock. Bedrock as in The Flintstones.

I gave her a copy of "the book" -- March through July of this diary -- and we all just sat and planned a show.

It's very exciting for me to realize I'm actually going to be playing with a band again. Until I moved to Los Angeles six or seven years ago, I never had a moment that I wasn't with a band. Well, until the last few years when I was doing piano bars solo. But even on solo gigs like on the cruise ship, Galileo, I had a small combo orchestra from Santo Domingo. We used to do stuff together.

(Remind me sometime to tell you about the old flugelhorn player in the band from Santo Domingo.)

The thing about this performance is that so far, I've had these peak experiences everytime I've played in the last few years. It started with my first public performance at a meeting of LA Women in Music.

The second performance was, I think, for the all-female songwriter group in Los Angeles, Wine Women & Song, at Susan Streitwieser's house. (Susan, by the way, has a group called Susans Room and she has this very excellent CD called "Lion in the Living Room" a song with lots and lots of nouns--I love nouns.) I also did a show at Genghis where I gave away more signed and numbered cassettes.

Then, March 1st 1996 , I gave away even more of them to the people who came to the legendary CineGrill reading. (We talked to J.D. who runs the place and he told us he has never seen nor felt a night like that night felt. Everyone crowded into that little glamorous 40s-looking nightclub in the Hollywood Roosevelt Hotel on a rainy night and Rue McClanahan got up and gave a speech that had the audience in pain from the laughter. She did a joke about my unpronounceable last name--by mispronouncing it very exaggeratedly with a totally straight face. It might be one of those "You'd have to have been there" moments.) But the point is that I think people expect something extra when I do a show. Must never disappoint your audience, you know.

So now we focus on October 1st. A gig! Singing my songs!

On the pier in Santa Monica. Rusty's Surf Ranch.

Rusty's Surf Ranch????

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Wednesday, August 28, 1996
Busy, busy busy.

Now that I know we're going to do the gig at Rusty's Surf Ranch big time, I spent the morning designing some fliers for the gig. I went and made a few copies. It was cool because I combined a picture from the show with the "who what when where" info. It's very cool looking, I think.

This afternoon I began writing a new song. It's based upon the "One New Hell" essay from a couple of days ago written by Billy Valentine. I first sent it to him and told him he could write music to it but he said the words were too graphic for him. As soon as it's in good enough shape, I'll share the lyrics with you.

By the way, I've been doing very well keeping up with my med schedule. These AIDS drugs need to be taken like clockwork and one of the hardest things is to get patients to take their drugs exactly on time and exactly the way they prescribe. I do my Crix at 7am on an empty stomach, the others at 8 on a full stomach. This is not easy, by the way, because as I mentioned before, I have to eat four times a day at exactly the same time. 8am and noon. Then 4pm and 8pm. It's weird but I'm doing it.

Anyway, now I'm focused on October 1st and what a night it's going to be! The room is small and we've built up a very loyal fan base for The Last Session so if you're reading this and want to attend, get there early.

I get to see Dr. Ellie Thursday morning. We're going to look at the swelling in my jaws to see if he thinks it's anything serious. I don't think it is, but you never know. As I said once before, it could be a cough or it could be cancer. AIDS just never stops surprising.

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Thursday, August 29, 1996
Doctor Appointment. New Test Results. The Tarzan Years?

This was my second full test results since starting on the new Crixivan, the protease inhibitor. The first results were spectacular (no viral load -- t-cells up). But we had one elevated liver result which indicated infection. Since then, we've been doing well except for the swelling in my jaws and an infection under my big toes on both feet--which I haven't mentioned before. Sorry.

Test results: Everything is great. Viral load is still below detectable limits. My t-cells are up again. This time they are at 140 (in May, they were at 40, in late June, they were 125). My t-cell percentage is now at 5% (up from 2%)--this indicates t-cell immune memory. The liver tests showed some elevation in several categories but none were really dangerous. The Crixivan causes some of this.

As for the swelling, Dr. Ellie and I made the decision to continue to watch and wait. We think it may be the fact that my immune system is reconstituting itself. With all the new lymphocytes entering the lymph system, it's a possibility. If it were lymphoma, he feels there would be more symptoms, such as night sweats, fevers, etc. I am having none of those symptoms. He would prefer to not cut it open for a biopsy. I agreed.

My toes have some kind of fungal/bacterial infection. For People With AIDS, skin problems abound. If you look closely at some of the color snapshots of me, you can see that I also have vitiligo on my neck and on part of my forehead and cheeks. Vitiligo is that Michael Jackson thing where my skin is losing color (melanin?). Luckily, I don't have a dark complexion, so it's not that obvious except in videos for some reason. There is no treatment but it's not dangerous. Just does a number on my vanity. Luckily, I have plenty of vanity to go around. Also, it looks like the molluscum is coming back (those are little bumps like mosquito bites that spread when you touch them) so I need to have them burned off again. He also gave me an ointment for the toes.

So, all in all, the Bonus Round continues. By the way, speaking of the Bonus Round. You remember how I decided to call this portion of the bonus round, "A Window of Opportunity?" Well, I decided that's too boring. I've changed my mind. I'm calling this part, "The Tarzan Years." Partly because I want this time to stretch out for years, partly because I feel so strong, but also because -- and I may have mentioned this before -- I feel like Tarzan swinging from one AIDS drug to the next, hoping that when and if one begins to fail, there will be a new one ready for me to catch.

Bonus Round 2: The Tarzan Years.

See? I told you I was clinically insane. I've been working on a revised flier for the October 1st gig down on the Santa Monica pier, adding things, changing things. I hope you can see it all. There's some little bitty writing at the top and bottom.

Today I got a call from Juan, the teacher at Cal State Northridge where I spoke a few months ago. He said there was a student in that class, a woman, who was especially moved by my presentation. She's been telling everyone about me and he wants me to come speak to two more of his classes. This is great news. When I told Juan about my health recovery, my turn around, he cried on the phone and said he was going to tell this student.

They had both been very concerned about me because of how weak and sick I was the last time we had spoken. He said that she, the student, was going to be screaming for joy that I'm not dead and that I'm very healthy (for the time being). He also told me he had played the songs from the show for an AIDS organization in Madrid, Spain. He wanted to know how much it would cost to bring me there -- actually to bring the whole cast of The Last Session there to do week's worth of shows. Geez, I didn't know what to tell him. Madrid? Sounds like fun to me.

Also, Tracey Thornton, one of my home page readers, asked if I might be free to come to Virginia to speak (and sing) at her college.

Folks, I'll go anywhere and do anything. Just ask me and get me there and feed me. That's all it will take. I'm easy. Just give me a chance to tell my story and sing my songs and I'm as happy as a pig in a mud wallow. Isn't that vivid?

The Tarzan Years. I really must be put to sleep.

Friday, August 30, 1996
Brain On Fire. A Buzz in Chicago. A Buzz in New York.

I woke up this morning at 3:30am and spent time just idly working at the computer. Wasting time kind of stuff. Except when I sit down to waste time, I usually end up organizing the home page, writing a lyric, writing e-mails, designing fliers by rearranging them endlessly and working on the score to the show. (What do I do when I'm working?).

I talked to Harriet (my songwriter friend) again today. I faxed her a flier since she can't access the home page yet. We talked about the songwriters who inhabit Genghis Cohen (a club in Hollywood) every Sunday night for the Songwriters Campfire. They're very good, but what's fun is they're so "normal" looking. A big galoot kinda guy with a cowboy hat, a dumpy little nebbishy attorney, a straight backed young Navy vet who looks like Jesus, a big beautiful woman who reminds one of Cass Elliot, a very skinny hippie looking guy who blushes a lot and who writes these amazing songs about families living in dumpsters -- all lorded over by the legendary Nik Venet. (Who is another good story, by the way). This is turning into Hollywood Confidential!

Anyway, I faxed her the latest version of this flier because I added something about AIDS. The AIDS thing wasn't on the first flier because I just didn't think of it. And I think that's great because it means I am doing things without the ever present ghost of "the fact" always looming and haunting me. I remember some time ago when I made a wish for just one AIDS-free day. Well, that's what these past few weeks have felt like. It's what today feels like. I'm just making fliers, putting together a rock show with a band, writing out a score, writing new songs, writing in my home page and dreaming of going to New York so my New York friends can see the show. (I lived in New York for five years and Jimmy is from Brooklyn -- which is very close to New York, and is, in fact, New York, but isn't the New York New York you think about when you think of New York.)

Did you get all that?

Honestly, though, it feels as if my brain is on fire with creative juices and ideas. And none of it feels like work. This is what I would do in my spare time if I had a real job! And one of these days all of this is going to make me money. I just know it will. I've become inevitable.

(changing the subject). We had a great time tonight. We went to John Sparks' house and watched the home video of the show. John is in charge of the Lehman Engel Musical Theatre Workshop and he is the only person Jimmy will sit and listen to when it comes to giving out critiques. John was out of town during the run of the workshop.

Folks, I gotta tell you. What an education it is to sit and watch something like that after not looking at it for a month. All I could see were the things that bugged me and the things I wanted to change. It was almost unbearable. This is why you workshop things to get them right. And now I know why people take several years to write a musical. There are so many little things that you discover with each rewrite and each pass at the material. Just little things to sharpen and focus the drama; each one crucial in its own way.

It's also painful to watch something obviously out of place or done "wrong" and wonder why you didn't see it the first time? The good thing about that is it means we'll be eliminating sacred cows and cutting, cutting, cutting. By sacred cows I mean that, in writing something, sometimes you will write a phrase or a scene you think it's the most brilliant thing in the whole show--and, indeed, it might be some very good writing. But in the "wholeness" of the play, it might be a distraction or it might be just inappropriate. But you love this thing and you just will not part with it.

Then you look at it a month later and you think, "Why did I leave that stupid piece of nonsense in?" It's all a matter of perspective, I suppose.

I found another website dedicated to a new musical in progress. The musical is called "Pope Joan" and the site describes everything they've done and are doing to get their show going. I found it interesting that they had a huge opening in Chicago to disastrous reviews and it killed them. John Sparks talked about it. He said they had big full page color ads (the image from the show -- a woman's naked back with a cross hanging down -- is quite striking) but the show was a bare-bones production. On the website, the producer talks candidly about why the show didn't work at that time and it's very educational.

He said one of the biggest mistakes was that the show was not ready yet. It was still a workshop production, but it was put into a new theatre and they promoted it as a finished production. As a result, they were killed. At least we were smart enough to let people know that our show was a WORKSHOP. We had things missing, an out of tune piano, some off-key singing here and there. It was not a perfect piece by any stretch of the imagination. Hell, Jimmy rewrote at least half the book DURING the rehearsals!

As a result, people forgave the deficiencies and focused on the message of the work itself. They came in prepared for it to be a workshop so their expectations were reasonable. Pope Joan, a very bare bones production billed itself as "the next big thing," so to speak and that's what the audience expected. When they didn't get that, they were not so forgiving.

John told us something else. He said there was a buzz about our show in Chicago. He heard others talking about us. And there's also a buzz in New York. He said that that was extremely hard to do. We are two writers with no "real" reputation for big-time theatre, so our "buzz" wasn't manufactured or a product of advertising. Our buzz was created by people seeing the show and then talking about it because they were genuinely moved it.

(Earlier today, Jimmy spoke to someone at ASCAP in New York who said "everyone" was talking about our show. The anticipation is extraordinary!)

John said our buzz was a better buzz than the usual buzz. I could make a bee joke here but Tarzan doesn't do bee jokes. And these days I'm Tarzan. But doncha just love it? A buzz in Chicago. A buzz in New York. Sounds like the opening line to a song. And we already know L.A. is buzzing about us.

The other realization I came to -- and this is not an easy one -- is that we really do need to get a great actor/pianist/singer for the role of Gideon, the part based on me. It was even more apparent from watching the tape that I am no actor. For all the authenticity and pathos that comes with my doing the role, there are parts that are just flat out embarrassing. Truly. And I'm not just putting myself down. This is serious business and we have to weigh all the factors when making decisions about how we do the show.

Jimmy and I talked about it and he said it was just the fact that I have no real "technique." He said during the run of the show there were brilliant things he saw in my performance. But I'm not consistent and there are big lapses where my mind just goes blank or something. I dont know. It's very hard to explain. I told him I thought if I went to acting school and really dedicated my life to it, I would probably -- based upon this experience -- become a very good actor. But I don't want to do that. I don't really want to be an actor. And when you see the video you can see how "bright" the other actors shine when they are on. I don't have that brightness.

I mean, I am definitely doing the showcase in New York, so I will get the chance to get my jollies for the time being -- it is fun to perform this show. And for a showcase, it would be way too difficult to get someone up in the role for just a few performances, but -- and John said we should do this -- we are going to just let the word out that there is a great part just waiting for the exact right performer. He should be 40ish, gaunt if possible, and he should be able to play, sing and act. This role could be a star turn for the right person. And in New York I know there has to be someone. Honestly, I get excited just thinking about it.

And god knows I could do a production of the show if I wanted to, or do a matinee or something as a benefit. People are always curious about authors doing their own work. But for the show, I want a great, great actor who will take Gideon and make him his own.

There's buzz out for the show and there's a star-making role waiting for just the right actor. If that doesn't create excitement, nothing will.

Saturday, August 31, 1996
Redesigning The Last Session. Mexican Train.

One reader asked what happened to the CBS show. Well, nothing. They never called so we never spoke and they never heard my story. I guess this will stay just between you and me for a little while longer. Once the big world catches on, who knows what will happen? I just promise that I'll try to continue our dialog here as long as possible.

Last night, we finally relaxed when our friend, Casting Director Anthony Barnao came over and we played a long game of Mexican Train with our dominoes that came from Aunt Frieda. Speaking of which, I need to call her. Don't let me forget.

I also did a little work on the flier for the show on October 1st. Yesterday I had a talk with Alan Satchwell and he's going to bring his eight-voice mixed vocal group to that show. So, now the show will consist of one four piece rock band, an eight voice choir, myself, and...? Well, I love to surprise.

And is this really the last day of August? Wow.


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© 1996 - 2001 by Steve Schalchlin