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April
1996 (still).
El
Lay.
I'm
starting to die but I don't really know it yet.
Toward
the end of this month I really start to lose it.
I'm
wearing an adult diaper and going to the bathroom
a
hundred times a day.
Thursday, April 17, 1996
Great Day. Cal State Northridge.I'm my old self again. I can't begin to tell you how good it feels to not hurt and to not feel sick. If you've been reading along all these last few weeks, you know that I've been very sick and trying hard not to complain about it too much, but in the context of a diary, it's hard to not just tell all, so to speak.But last night, for the first time -- and I'm sure it has to do with the fact that I passed that kidney stone night before last -- I was in complete and perfect painless, sickless health. You know, I had been feeling some lower back pain and stuff, but I thought it was, like, lumbar pain from a bad chair or something. And because I assume that the AIDS makes me sick, I figured how I was feeling was just par for the course. But I was wrong.
Jimmy looked at me last night and said, "The old Steve is back!" Statements like that remind me how different I am as a sick person than as a well person; how much it changes my personality.
Yesterday also I had my weekly meeting with David Robyn, the songwriter who is my protégé, and he knocked me out by finally finishing the last verse on "This Ain't Good." I know he has worked his ass off to make this song great and I've been a total slave driver to get him to do right.
He said he went to the songwriter event Sunday Night at Genghis Cohen, a local restaurant with an acoustic music club, and when Harriet introduced him to the other songwriters as "working" with me, he said they were all jealous and very impressed! Naturally, that has gone to my head in a big way.
Then I went to Cal State Northridge and spoke to religion class. I gave them my whole story about how many times I've been preached to instead of ministered to, and told them how I believe that Christianity is about action, not words.
It was a great meeting and they asked great questions. One person asked me what I believed about religion. My response was that I felt religion was a man-made device and was more about community than God. That I felt religion was deeply personal and that it's important to reflect on the truth that the world's most horrendous crimes were committed by the world's most devout worshippers of God.
I also mentioned that the phrase, "Love the sinner, hate the sin" was usually just a way of justifying homophobia. They really hate the sinner, or are afraid of the sinner, but if they say it's just the sin they hate, then they can commit atrocities and feel good about it. Reference Jesse Helms for that one.
It's nice to feel good again. You all can stop worrying about me. But please pray for my friend, David Rambo. I just heard he has gone into the hospital for something possibly serious. David is one of the great people I know. I'm going to go see him tomorrow. I love you David.
Thursday, April 18, 1996
LA Times Interview. Visiting David.Last night wasn't a great night in that I had some vomiting and diarrhea, but I think it might be this new drug, Mepron, which is like a thick yellow liquid. It's supposed to be effective against some parasites. (I've tested positive for microsporidia -- then negative last year after doing some alternative therapy).Still, the day was quite wonderful. Christine and I worked on our new song, "Adventurer" all afternoon. She has this wonderful house down near the beach in Santa Monica with huge windows and she bought a used piano just for us to write on. She also has this great dog named Brumby which is just a big ol' puppy. But he's a BIG puppy. It's so hysterical when he tries to get into her lap like a LITTLE puppy because he doesn't fit.
Then I went see David in the hospital. He doesn't have cancer or AIDS or anything so I was thrilled about that. Still, he has a blood thing happening and we're concerned.
When I got to Cedars, where he's staying, there he was out in the hall entertaining the nurses, dressed in red plaid jammies, happy as hell. He's such a great guy. He also said that he could get us "Don't Tell Mama," a great cabaret club in New York for the reading in June! It's just the club we wanted and he's best friends with the owner.
I called Carl when I got home and told him all about it. Now the train is beginning to roll down the track. AT LAST!
The best thing that happened was that Al Martinez, the columnist for the L.A. Times came over and interviewed me for a column. He loved the tape I sent him and said his wife was stunned by the material. We had a great time together and by the time it was over, he said he was going to write something really great. I think he wants to see this show on just as much as we do. IT WAS THRILLING!!!
Overall, another excellent day.
I hope it's fun reading good news as opposed to the bad. I started this online diary when I was at a low point so if you've gotten to know me through this, you don't even know how great a life I've been living. Hopefully, I can continue on this path of health and excellence. Want to see a life well-lived? (So do I). I'll do my best.
Friday, April 19, 1996
Another Stone. David Robyn's Show.You're not going to believe this but yesterday I had yet ANOTHER kidney stone. Only this time it was on the right side.Here's how it went down. The day started out really well. I was at Bob-A-Lew Music -- the place where I "work" -- and I was happily speaking on the phone with John Bettis, one of my favorite "big time" songwriters, for the first time in a long time. I was listening to all his stories of being on the road these last few weeks. And Ronda Espy, who runs Bob-A-Lew with her husband Kim came in, happy to see that I had so much energy and spirit.
I went over to Doug's office to make copies of the new demos when suddenly a pain just shot right through my back and I nearly collapsed. I told Ronda it was happening again and that I needed to get home. So, I jumped (actually limped) to the car and raced home. I took a Tylenol 4 and fell into bed. The pain just got worse. No matter what position I put myself into, it was getting worse and worse.
So I took two more Tyl. 4's and drank a ton of water. Then I threw that up. So I took one more Tyl. 4 and called the doctor. Dr. Ellie's in Greece so I spoke to a lady doctor who asked me lots of questions about the pain and what meds I've been taking. I told her I didn't want to do the ER again. I know their pain killers are better than mine, but I also knew they'd haul me into that cold x-ray room and run that hideous dye test again.
She said I could stay home if I could drink liquids and not throw them up. She said to drink slowly but drink a lot. So I did. I curled my self into a ball, drank some water and waited for the worst.
It got pretty bad, but just as it was hitting a point I could no longer tolerate, I felt the codeine begin to kick in. It took that edge off the pain in my back and it felt so good to know it was not going to get worse from this point on. In fact, after a few minutes I actually fell asleep and when I woke up, it was pretty much over. I still had some residual pain, but basically it was over.
Which was wonderful because I was determined to see David Robyn play tonight. He was doing the song I've been coaching him on with the band. I took Ginger, singer who works at Bob-A-Lew, with me so I could get the female opinion on him. Ginger loved the fact that he is a genuine tough guy with a vulnerable soul. He's had a very tough life and on stage he is very masculine and very real, yet the soft part of him, the warm part of him is huge.
He just hates the fact that I think he's only now written his first song. He knows I don't really like anything else of his. But then, I'm a bitch when it comes to songwriting. To me, it's serious business, making a song. I just won't stand for less than great. It's his own fault for asking my advice.
Steve, his keyboard player, told me that David so loves our Tuesday meetings, that he actually canceled his Tuesday night gig in order to spend the day writing after we meet and work. His drummer told me that he sticks by David because he's never met anyone with his kind of drive and ability to work hard for what he wants. I know he sometimes will stay up all night trying to get a verse right for our meeting.
It always amazes me that songwriters think they can slap a verse and a chorus together and call it song when there's nothing of THEM in the song. I get a kick out of Nik Venet who says he think its his job to discourage every bad songwriter and make them stop writing, so they won't pollute the air. He's such a song nazi. (And a very funny man).
I don't go that far. I think it's beautiful when anyone tries to make music, good or bad. But for those who wish to compete for three minutes of my lifetime, those three minutes better be honest, insightful, carefully crafted, etc. but most of all, real.
And that's the sermon for the day. Here's a question for the day:
Why won't MTV and VH-1 put songwriter credits on the videos?
Saturday, April 20, 1996
A Perfect Day. E-mail From Some Flounder.A perfect day yesterday. Got up nice and early, ate rice and bananas, made my diary entry, took my shower, went to Bob-A-Lew, started making tape copies of the show, felt like a million bucks -- no residual pain, no nausea, etc. In fact, I felt like I could bench press the whole office and few others down the block.It was Kim Espy's birthday, so we imported pizza and cake (which I shouldn't have eaten, but did anyway). I also spoke to the insurance agent who told me that I could salvage my insurance, but it would be expensive. They are going to call me back with my "options."
About 2pm, I started to feel tired, so I obeyed my body's message to me, went home and fell asleep on the bed (after buying the new Spawn and X-Men comics -- I did tell you that comics were my secret vice, did I not?). Slept all afternoon and woke up about 6:30. Had more rice, did a little computer work and then back to bed.
Now, if that's not a perfect day, I don't know what is.
I'm beginning to get e-mail from this diary. One new friend is a very devout born-again Christian who approached cautiously at first. He said he would link to my page from his, but only if he could put a disclaimer warning that there was gay stuff here. I invited him to do so, of course. But I also told him that if I put a link from my page to his, I would have to put a disclaimer warning that he was a Christian. (**smile**). He linked me without the disclaimer.
Tonight I'm supposed to emcee a show for my friend, singer Bobby Malone. And then tomorrow night, I'm planning on being at the Songwriter Campfire night at Genghis Cohen. Not to sing. Just to hang out with other songwriters. Now that I know everyone down there worships me like a songwriting god, I must go soak in all that admiration!
It's nice to feel good, my friends. It's nice to be back to my old self. Two days in a row may not be trend yet, but I grab 'em when I can. And right now, I'm grabbing for all I'm worth.
By the way, I'm still deeply concerned about my friend, David, who's in the hospital with the unknown blood thing. He's not responding to treatment. Please, dear reader, if you pray, say a special prayer for him. I cannot not bear the thought of losing this dear, dear friend. Lord, if you're in the habit of listening to unworthy people like me, I beg you to have some mercy in regards to David. Please touch his body and heal him. He has so much life left to live. If I could give him mine, I would do so (as if anybody would want my life). Thank you.
Sunday, April 21, 1996
A Fundie Story.I felt pretty good yesterday but about midday, I began to feel kind of weak. By the end of the day, my (here we go again) you know what started back in again killing me. I think the only thing that actually stops it these day is the codeine I had been taking for pain.But I've lost too much weight. I think I'm down to 140 (and I stand 6'2"). It may be time to go to a hospital and get TPN, which is food they put directly into your blood. It costs over 800 dollars a day I hear, which may be tough for a guy whose insurance has been canceled and can't hold a job.
But the good news is that my friend, David, with the auto-immune blood disease has responded to treatment and he is going home. I sent Ted a note telling him that we would insist on helping him move from the hospital. You cannot begin to imagine how much a relief I feel. Thanks to all of you who kept him in your prayers.
On the Fundamentalist front, there's been some interesting developments. I spoke with a friend who has a position at a church. One of the members, who has recently turned "Fundie" raked him over the coals with repeated phone calls and stuff accusing him of having bogus ministry, saying that my friend is sinful and unworthy to work in the church. He also has "attacked" a young gay person in the church. I've also met a Christian over the internet who is under attack from his church because he doesn't seem to be happy enough for them.
My first friend said that for the first time, he is understanding the parts of my play where the young Fundie goes off attacking Gideon (the lead character) so single mindedly. He said the man attacking him has no facts to uphold his position. And as for the young gay man, this boy is also facing a possible HIV positive test result. He's under so much stress from that, the attack from the self-righteous couldn't have come at a worse time. He fears the boy is suicidal.
When are people going to learn that a hug and a kiss will go so much further than pointing a finger in self-righteous anger?
Last night, Andrew Sullivan, the now-former editor for the National Review, who "came out" last year, has resigned and told the world that he has had HIV for three years. I saw his interview and I have such mixed emotions. Did he resign because he had HIV? I missed the meat of what he had to say. He did make the point that he "hid" his disease for three years.
I told Jim that that was something I could not understand. I told people at work when I got tested and told them the results immediately. Imagine feeling shame over a disease! Not for me. Then Jimmy reminded me that I did not tell my parents until I was on my "death bed" with PCP. I thought back and remembered that I was not afraid for them to know I was sick, I just didn't want to tell them I was gay.
Geez, sometimes I feel so stupid. Andrew did say that he felt strangely liberated through it all. I think I understand that feeling. What else is there to hide?
I also got a call from Juan, the teacher of the class at Cal State Northridge where I spoke. He said the class LOVED my presentation and that they were buzzing about it all week. He said they couldn't believe that that was the first time I'd spoken to a class about AIDS and about religion and gays. He wants to invite me back at the first opportunity.
I feel at least I'm doing some good through all this. I just wish I could do more. I wish even more that I could gain some weight and really just feel normal. But I feel so much better than before the kidney stones, I should probably just stop complaining and be happy for what I have. A person who loves me, a great family, a sensational musical, a great cat, and an upcoming free cruise to Alaska. Have I mentioned the cruise to Alaska?
No?
Well, next time....
Monday, April 22, 1996
Fun At Genghis. Feeling Weak.Last night I was sitting in the second row of seats at Genghis Cohen down on Melrose and Fairfax talking to Kevin Fisher (from the group Naked to the World) telling him that my whole diet the last few days has been nothing but rice, codeine, immodium and iron pills. And that I still had diarrhea. He suggested glue. I said it was next on my list.I have to admit it's kind of an ego trip to go to the Campfire. They are all good songwriters and they treat me like I'm a celebrity. I just go and soak up all that admiration! One writer, Sarah Kim Wilde, enthralled the audience with a song about a scorpion in a piece of lucite. It was jaw droppingly good and painted a picture of a person disillusioned by the lights of Hollywood. I was amazed how she was able to hold the crowd with tenderness and quiet fragility.
Harriet told me that I have been invited to sing there next week! I don't know if I'm doing one song or two, but the Sunday Night Campfire at Genghis is one of my favorite hangouts. I sat with David Robyn who was in pain because some kind of cleaning solvent went into his eyes at a gig he was doing. He gave them a tape of his song, "This Ain't Good" hoping to get on the bill next Sunday.
I'm happy to report that my other friend, David, with the blood thing, has been released from the hospital and that he is now home. I am so relieved and so happy.
I'm losing my laser printer this week. It's been a loaner from friends who have helped Jimmy and me over the past few years while I was so sick in the hospital and all. They are having their own problems now and need to get some of their stuff back. So, now I have to find something that will give us a good equivalent so we can continue writing and outputting.
Yesterday, Jimmy and I went to see a spectacular stage production of "Great Expectations" at "A Noise Within" in Glendale. It was a warm day with the nice breeze and they had chocolate cake. I love chocolate cake.
I made it through the night without the codeine stomach ache waking me up. That was nice, and I didn't "leak" last night. It's humiliating and embarrassing, but I usually sleep in an adult diaper to keep from soiling the bed. I hardly ever really need it but I've had my share of accidents through all this and I don't like messing up our bed.
I'm still weak from the diarrhea. It just drains you of energy. So today I'll take it easy and not do too much. Eat my rice and codeine and iron pills and immodium. Try to find some nutrition in-between and look forward to all the wonderful e-mail I've been getting. For instance, my Christian friend with the judgmental friends has been writing a sensational song (which he gives me credit for pulling out of him) and I can tell that it has already helped to change his outlook on his tough life situation. He is such a kind man.
I promise to try keep you entertained but mostly I promise to always tell the truth, good or bad, victorious or humiliating.
Tuesday, April 23, 1996
NAS Opening. Losing Strength.NAME DROPPING TIME! I went to the grand opening of the offices of the National Academy of Songwriters today. Hobnobbed with Gold members and hit songwriters. Jeff "Wind Beneath My Wings" Silbar, Wendy "Save The Best For Last" Waldman, Brad (I can't remember the name of it, but it was a really cool country hit last year) Parker, Jeff "Going to the Chapel/I Honestly Love You" Barry, Alan "I Don't Have The Heart" Rich, Dino "I Will Survive" Fekaris, Pat Alger, Jerry Fuller, Marty Panzer, Stephen Bishop, and the list goes on and on. It's exciting to me that I am also a Gold Member due to The Last Session. I was not feeling strong, though, and I spent a good part of the time sitting and chatting with Paul Zollo, the editor of their publication, SongTalk.Paul and I crossed swords a lot when I worked at NAS. (You see, just before I was struck down with AIDS, I used to run NAS as its Managing Director). Paul and I did not always see eye to eye. But all that seems so long ago.
I came home a little early, though, because my energy level is still really low. I heard from my cousin, S. in Arkansas today through e-mail. She hadn't heard that I had AIDS.
Now, I ask you, if I had murdered someone, don't you think the news would have spread like wildfire through the whole family? Why do you suppose after three years, much of my family still does not know that I have AIDS? I'm on the fucking INTERNET with the news, for gods sake! But my cousin, S. -- and probably half my other cousins, still didn't know.
My Aunt Frieda (on my mom's side of the family -- S. is on my dad's side) said she hadn't told her kids because she didn't want them to worry about me. I begged her to tell them and let it all out. I would hate to think that someone I loved was sick and I didn't even know about it. What if I were to die and they never had a chance to speak to me? I suppose I could tell them myself, but we aren't really in communication and I don't have their addresses. Hm. Stupid excuse. I suppose it would be easy enough to find them out.
AIDS is so complicated. I'm imagining that the hold up for my Arkansas family is the shame of g. a. y. If only I had something nice and acceptable like cancer or a brain aneurysm. Not that my cousins are any more prejudiced than any other hillbilly family. It's just that it's... well, it's ARKANSAS! Who knows what kind of voodoo is spread around there.
I'm just being funny. The note from S. was kind and full of love. She asked what she could do. I said to just care about me. And to be aware if anyone around her is going through it. In a small town, having AIDS can be a nightmare. And I offered to speak to anyone she felt needed a shoulder. And I offer that to you, too, oh great readers of mine. Don't hesitate to send me e-mail if you or someone you knows needs a sympathetic ear.
It's a simple thing, helping someone else. It enriches me, that's for sure.
Wednesday, April 24, 1996
ASCAP Film & TV Awards. Recording With Alan O'Day.I had to leave early last night before they even served the food. It was the ASCAP Film & TV Awards dinner honoring Randy Newman and all the movie composers of the biggest films of last year. I just wasn't feeling strong and I started getting a little sick, so I left. Also, Jim realized we hadn't set the VCR to record the last night of "Murder One."The dinner, though, was exciting (especially if you've never been to one) but even in my jaded been-there, done-that moments, I still enjoy the nights when the music industry puts on its tuxes and hangs out. The event was at the Beverly Hilton and it started with Jimmy calling me in a panic because he had brought my tux shirt instead of his own. (He wrote the show). So I raced over the hill in my little gray Festiva and gave him his two new shirts which he got a JC Penney the day before. He chose the black one that makes him look like a priest on recommendation by Todd Brabek, the West Coast Head Honcho, so always wears a black shirt to these things (he said).
I saw Brock Walsh (Brock's claim to fame was that he co-wrote the song, "Automatic" for the Pointer Sisters and was the voice of Mac Tonight -- you know, the singing moon on the McDonalds' commercial, but his magical talent is lyric writing. He writes English words for many of the top Brazilian jazz artists and is a true poet, in my humble opinion).
Anyway, I mentioned my musical and when I said it was about my own experience with AIDS, he absolutely freaked. He hadn't heard, so there I am in a crowded room full of strangers in tuxes and gowns who are laughing and drinking -- and I'm yelling to be heard that I have AIDS, etc. etc. etc. Very surreal to say the least. But I showed off my Gold Membership pin and he told me how proud he was of me. (See "Going It Alone", second verse.) I always feel bad when friends of mine get told in such a public fashion.
It was a couple of years ago at the NAS Salute to the American Songwriter. I was talking to my old friend, Tony Haynes (a lyricist and semi-mogul -- works for Warner Bros. now doing all the music for their animated series) in the lobby just before the big show. I off-handedly mentioned something about my health and he hadn't heard, either. So I told him and -- now get this, Tony Haynes is big brawny 6'5" tall black man with a patch over one eye -- a very imposing figure of a man. As soon as I told him I had AIDS a huge tear came to the one good eye and he had to go sit down on the steps.
That's when I knew that I should be very careful about how my friends find out. They love me and this is not the kind of news that anyone just says, "Oh well, good luck and did you see my last picture..." So I try to have some compassion and think how I'd feel if someone I loved told me this. Hell, I get weepy when someone tells me about a stranger with AIDS.
A friend, Lisa, last night told me that at the hospital Emergency Room where she volunteers, they had brought in a man who had tried to commit suicide because he had just learned that he was HIV positive. There was his companion in tears, etc. It really killed Lisa and she gave them my e-mail address or something in case they want to talk (which was very nice of her to do).
People should be very supportive to those who just get the news. It takes a long time to adjust and realize that your life doesn't end. I think I adjusted pretty quickly, but I am surrounded by an dedicated family of people who love me. It's really incredible.
One more thing before you go, and I apologize for being so long winded this morning. I had a recording session with Alan O'Day yesterday. He volunteered to produce a track for At Least I Know What's Killing Me. I told him of my friend in the church where he was being a bit hassled for not being happy enough while his family and business are seemingly falling apart.
Alan said the sign of a dysfunctional family is one in which the individuals are expected to support the family. The sign of a functional family is one in which the family supports the individual.
I am so grateful to my family, both blood relative and not, that has worked so hard to support me and give me life. From my folks to my brothers to my Aunt Freida to all the Jims in my life, and all my songwriter friends, to NAS, ASCAP, etc., etc. I can't believe my life is so rich with so many, many people who care.
But, enough bragging. Time to go to Malibu and give our printer back to Dennis and John. (And now we have to figure out a way to get a new one). They've been great allowing us to use it this past year. Then I go to Dr. Frank for acupuncture, over to Christine's to work on our new song, and then probably home to sleep and sleep and sleep.
(I love to sleep).
Thursday, April 25, 1996
Steve Yells at Dr. Frank.I was lying face up on Dr. Frank's table. I was thinking of what my friend (and Registered Nurse) Dennis had just told me not one hour earlier. Dennis hadn't seen me since the reading two months ago. He saw me as this walking skeleton and was horribly shocked when he saw me at the door. He said that if I did not do some kind of aggressive intervention to get some nutrition into my body, I would be dead soon.So, there I was on Dr. Frank's table -- poor Dr. Frank who is the kindest and most gentle man I know. He was getting ready to put the first acupuncture needle in me and suddenly I was filled rage. I saw him (and all doctors) as ineffectual idiots torturing me to death and I cut loose telling him, "I'm sorry, Dr. Frank, but I'm lying here dying right in front of you and you're going to further my torture with your stupid painful needles that don't do me a bit good. You don't have the faintest idea of what's wrong with me and how to fix it, do you? You just go about your business doing the same damn thing you've done from the beginning."
It was rude, but it is now clear to me that I cannot stop the diarrhea, I've lost 20 pounds in the last two months, and if we do not do something RIGHT NOW, it will definitely be all over.
So Dennis went to work, made an appointment with a doctor, called home health care and tomorrow I am going to step up to the plate and aggressively do something. What I think we're going to do is to put me on TPN, intravenous nutrition. It will mean 4 weeks of being hooked up to a bottle with a PICC-line (a semi-permanent tube) inserted under my clavicle (more torture -- yeah!!), but at this point, it's a last resort I must accede to. Either I do this or I die.
I'm sorry to be so bitchy right now, and I apologize to you if I'm alarming you. The good news is that there is something we can do and we're going to do it, damn it. I've avoided TPN up to now because I know how horrible the treatment is, but I've little choice now that the you know what is out of control to such a terrible extent.
By the way, Dr. Frank was very sympathetic and told me if I didn't want the acupuncture, I certainly didn't have to have it. I told him to please let's just do it. He inserted the needles, put on my favorite relaxing new age music and then put his hands on my head rubbing my temples and soothing me. I fell asleep and when I woke up, I felt a lot better, but even more determined to do something to get my life back.
I went to Christine's and we worked on the new song, "Adventurer, "we're writing together. She has written a nice lyric and I think we might have something nice. Not revolutionary or earth shattering. But definitely not run of the mill. She has a very feminine point of view in her lyric writing and I enjoy finding music for it. We played with Brumby the dog, played the song for Pat, her husband, but then I could feel the new bout of diarrhea was going to hit me soon. So I jumped in the car and sped home (forgetting to pick up my new head shots at Richard Photo Lab).
At home I had a couple of faxes from Dennis who had already aggressively pursued Dr. Steve and had contacted home health care for the TPN. When Dennis is doing his nursing thing, he's the best. Then he called and said he was listening to the tape of TLS, but had to turn it off, he got so mad that the system is so hard to deal with regarding health care.
So, my friends, do not cry for me. I have a support system second to none and I will get through this. I know we have caught it early enough and when you see me next, I shall be Arnold Schwartzenegger.
Friday, April 26, 1996
Dr. Steve & Corky's Kids At WorkDennis A. accompanied me to Dr. Steve's office. I've decided to make Dennis my "patient advocate." He is going to take over managing my health care and making sure I get everything I need. He knows so much more about medicine than I do and I feel much better having him looking over my shoulder.Dr. Steve had me take some blood tests and a chest x-ray and then prescribed paregoric to stop the you know what as a last ditch effort. Yes, the old famous paregoric. He said no one makes it anymore and it's hard to find. But, of course, Bob's Pharmacy had it. Bob has everything. I looked it up in the dictionary when I got home and saw that it's made from opium. How nice.
The LA Times column about me by Al Martinez did not come out today. Al warned me that he wanted to really work on it and make it good. God bless him. You should have seen me tearing that paper apart! Well, since I don't really have much news today, I thought I'd share something funny with you. This is an e-mail I got from my brother in Dallas who is an undercover drug cop. The e-mail concerns "Take Your Kid to Work Day." He took his two kids, Jonathan & Elizabeth, to work and here is the result:
"So my day started out just as I figured. I was awoken bright and early by two knuckle headed children (who I can barely force out of bed on real school days) who were ready to go to work with me. Jonathan slept in his clothes so he'd be ready bright and early. Next, as I was trying to get ready, the standard Battle of the Remote Control took place. We managed to get past that, eat and dress when we began on ongoing saga of who gets to sit in the front seat. I was just about ready to boot them out and send them to school when (thank God) the Ritalin kicked in."We started out at the Rockwall drug task force office where my children immediately took over everyone's computer. Next, one of the officer's came in with 75 lbs. of marihuana. The kids got a real charge out of taking trophy shots with that. He had just stopped some idiot on the interstate, asked to search his car and the rest is history. Lizzy wanted to know why someone would be so stupid to let the police search their car when they had that much marihuana in it. She was beside herself when she realized that the idiot also gave a voluntary written statement where he said "I was stopped by Officer Spears. He asked me if he could search my car. I told him yes and he found my marihuana." She wanted a copy so she could show the kids at school why they called it dope. When she found out that the guy had his 6 yr. old son with him, she said that he was just participating in the Take Your Kid to Work program."Next, we wondered over to the DPS office in Garland where they again seized control of the computers. I took them down to the Texas Rangers office (which Jonathan got a charge out of). Proceeded down to the Drivers License office where before I could blink, they jumped ahead of people and began taking the computerized driving test (thank God they failed). They roamed around getting into other junk when I decided it was time to go eat."We went to a mexican restaurant in downtown Dallas. While we were there, I saw a couple of prosecutors that I knew from the District Attorney's office. They were sitting with three other lawyer looking guys who I figured must have been prosecutors also. I ran up to the table, pointed at one of them that I didn't know and said "Hey! Do you remember me?" He was staring at me with a blank look and I said "You sent me to the pen for 20 years". This guy turned about three colors and finally said "Why are you out so early." I said "Overcrowding. Isn't this a great state?" He looked like he was about to pass out and I turned around and left. I talked to a DA Investigator later that day who said that I nearly gave the guy a heart attack."Next, I took the little ones to the Dallas County Courthouse. I was trying to find a courtroom to sit in on when Jonathan told me that he wanted to go and see OJ's judge. We found a Capital Murder trial where someone was murdered during the commission of a robbery. When they brought in the defendant, Jonathan nearly hit the floor. It was a real good looking Hispanic female. Jonathan said that he thought that it was gonna be a black man. Things were rocking along pretty good when I realized that the Ritalin had run out and Jonathan was making faces at the judge. After the trial, the judge invited the kids up to the bench and let them put on his robe.
"Well, we got home about 4:45. I was gonna take a nap at 4:55 when I got paged at 4:56. They needed me to be the aircraft observer (one who is basically the spy in the sky) for a dope deal. They said I'd be home in a couple of hours. Well, 8 hrs. and 200 lbs. of marihuana later, here I sit. It's bedtime.....adios."
There's something very weird about my family.Saturday, April 27, 1996
Writing with Jim Latham & Recovering SlowlyA quiet day. The paregoric worked somewhat on the diarrhea so that was a relief. I went over to Jim Latham's and wrote two complete lyrics in a hour and half for a movie/tv project he's doing.I sat on the couch while Jim played some country tracks he had already tracked. He told me the general themes he needed for the project -- one was a woman at everyday work kinda theme and the other was someone waiting for someone to arrive. So, I went to work writing them. "A Mother's Life" is a daughter reflecting on the life of her mother, noticing that men get awards for service and the work they do and that women do not, and then wondering if she would be living the same kind of life now that she has started her own family. "I'm Not Waiting" is a woman (or it could be a man) nervously cleaning and straightening up the house, looking out the window and glancing in the mirror while insisting that she's not waiting for anyone. They're not bad for what they are. Jim wanted them to work for source music and not stand out too much, so we kept the syntax pretty clean. Later, I went to NAS and scanned my picture in. I was having a little trouble getting it and the links page loaded onto the server here. I'll try again.
I'm a little stronger, but I realize I have a ways to go.
Sunday, April 28,1996
Quiet Day of RestSince I'm on the mend right now and don't have much energy, I purposely stayed in most of the day yesterday and rested -- and guzzled all the anti-you know what medications I had. Every few hours -- I felt I was in a battle zone and I was going to defeat the enemy. Drink the paregoric! Have a codeine! More immodium! All day long, and this morning? Victory again. But I must continue the battle. I win it and I lose it and I win it again. I'm determined to beat this and get my life back.It's been difficult being so weak and vulnerable. I sometimes feel like that character in Jerry Lewis' "The Disorderly Orderly." The one played by the original Gladys Kravits. She had this litany of ills she would repeat endlessly to Jerry's character and they would all make him sick. I don't want to be the kind of person who, when you ask me how I'm doing -- I mean *really* ask me, not just as in, "hi, how are ya?" -- all you get is a list song.
So the battle rages. I need strength. I need weight. I need some patience.
Monday, April 29, 1996
Gay Church and The CampfireLast night at the Songwriters Campfire, Nik "El Greco" Venet, who runs it, leaned over to say hello to me at the back table. I was sitting with David Robyn, my young songwriter "protégé." I told Nik I was hoping he'd get to hear David's "This Ain't Good" cause I would love for him to be on the showcase. Nik said hearing the demos wasn't necessary. He said if I thought it was good enough, that was enough for him. Then he said David could be on the following Sunday.David leaned over and hugged me (thanking me) and told me he thought I was about most respected man he'd ever met. I told him he needed to get out more often. We sat and talked and waited and listened to the other songwriters until it was my turn to sing.
Scott Wilson (another wonderful songwriter) introduced me from stage with such affection and build-up, I thought I'd never live up to it. But I got up there and did The Faces In The Music by memory for the first time. (It has LOTS of words). The applause seemed endless with everyone shouting and cheering.
Then, without comment, I launched into Going It Alone and there wasn't a dry eye in the house. It's such a moving, unexpected song. Harriet Schock had to follow me. She got up there and said she needed a moment because she was so "into" my song, she wasn't "there" yet. Then she did three wonderful songs herself.
Yesterday morning at the gay church was interesting. I don't go to church these days. It's complicated, the reasons. Most of it has to do with the structure of worship services and the syntax of religion. Again, it's hard to explain in a few words. My faith is strong, but it's deeply personal and I don't find it easy to get into someone else's ritual, if that makes sense. The last time I really went to a service (except for when Jimmy dragged me to midnight mass for Christmas -- which was more like a show), was the last time I visited my parents' home in Louisiana.
Me and mom sang a special together. It was nice.
Anyway, the gay church: well, it's like any other mainstream Protestant church, I suppose. The clergy are in robes (which is weird to a Baptist). Most of the women are kinda butch and the male "Worship Coordinator" spoke with a slight lisp. But the atmosphere was gentle and kind and very loving, with a nice sense of humor. I don't think one would know one was in a gay church if one just wandered in. Gay people are so hated and ostracized by other religions, I think they are happy to find a port in the storm where they can freely be themselves. It's really quite beautiful and I think straight people might enjoy it as much as any gay person might because of the loving nature of the congregation.
Alan and his choir were the featured "sermon." I have to tell you that the Heaven Bound Sound Choir is angelic. They don't just sing well, but they are all so innocent and sweet. It really shows in their faces. And I could tell the congregation loved them.
I had to laugh at Alan because at this church they use "inclusive" language, which means they shun assigning a gender to God. All the songs are gender neutral. But Alan wanted to end with "Gloria Patri" which uses the term "Father." He, in introducing it, laughed a little and asked for forgiveness for it. The congregation laughed too, and accepted them even more. By the end of the song, the choir received a long, long round of applause and ended their set.
A few moments later in the service, I was called up to sing When You Care with the choir. It was really thrilling. The only thing was -- and Jimmy hated this -- they took the offering DURING the song! He thought it was disruptive to the song, but hey! It's not a concert hall, it's a church. Maybe the song brought a couple of extra dollars. I hope so.
I had one person from all of my fandom drive to see me perform. He came up to me afterward with a printout of "When You Care" he had downloaded from this site and he asked me and Jim to autograph it. Very sweet.
We also saw a man who helps give out food at the APLA Foodbank and the music director was someone Jimmy and I had met before, too.
But the thing that touched me deeply that morning was a guy who, in the little prayer circle we did before the service, asked for prayer for a friend who was "going back home to his parents' house to die." I knew he was talking about AIDS and I couldn't help but feel a catch in my throat as I saw the pain in his face.
Later, during the communion portion of the service, while everyone else was praying for each other and huddling and taking the bread and wine, he sat across the room from me alone and wept bitterly for his friend. It touched me deeply and I couldn't help but cry a little myself as I saw his agony. I wondered how close the dying friend was to this young man who looked so helpless in his pain. It made me realize how much AIDS is about real live flesh and blood human beings -- not just statistics.
And how much this agony is not just about the people who are dying, but about the ones who are left behind. As I write these words, tears are once again streaming down my face. I apologize if I seem maudlin or overly sentimental, but these are the honest emotions I feel this morning.
Someone (a stranger) sent me an e-mail last week and asked me how I could "put my whole life" out on the net for everyone to read. Isn't it embarrassing, he asked? I hadn't really thought about it before. I answered and told him that I was just a big ham and this was my way of being on stage all the time.
Perhaps I'm like a bug some kid has rolled over onto its back. Perhaps this is me kicking my legs up in the air begging him not to squish me. I just have this weird feeling that if I cry loud enough and long enough, if I make people care, if they get to know this man with AIDS, maybe it will make some scientist work that much harder to find a cure for us all. (Maybe it'll make them slow down just to get me to shut up!)
I hardly know why I do anything these days. It's all instinct. I do it because I must. I write songs because I must. I work to survive because I must.
I must.
Tuesday, April 30, 1996
Note from Jen, visit with Dr. EllieI got this great e-mail from Jen Kitchen who makes bullets for home pages.
"What a great site! I hope you and your musical make it to Broadway, because I'm going to come see it."At the risk of sounding sappy, I explored your site with tears in my eyes. AIDS has a face for me now. You've touched at least one stranger across the net. There's your answer to the guy who wondered why you put your life on the web."Good luck with The Last Session!"
Naturally, I thanked him/her. It was great to get that note. Well, on to business at Dr. Ellie's office:First of all, I was very weak when I woke up yesterday. Very weak. I literally almost didn't have the strength to talk. Jimmy was very concerned and was trying to make jokes and keep my spirits up.
Dr. Ellie was concerned about my weight loss. He also said that my chest x-ray had shown that part of my left lung had slightly collapsed. I knew what it was from. The coughing from the past few months had caused me great pain in my side, so I had been favoring that side and not breathing deeply enough. (If it's not one thing, it's another!).
Since we are going on our (free) cruise to Alaska next Monday, he felt that if I could stop -- or at least hold off -- the diarrhea with the medications I have and enjoy the cruise, it would be very good for me. He also agreed that once I return, he would approve the intravenous nutrition therapy to help me get some weight back on. We discussed the various places the PICC line could be installed, all of them potentially dangerous because of possible infections.
Then he sent me off for more tests just to see if I have any parasites or whatever. I'm almost on first name basis with the lab people at St. John's Hospital.
My insurance is still not reinstated. We're working on it--and Bob's Pharmacy has been trying to give me what I need as I need it--but no insurance company is thrilled at the thought of keeping a person with AIDS alive.
I finally made it home and spent the rest of the day resting and sleeping.
END OF PART 3.
© 1996 - 2001 by Steve Schalchlin