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May
1996.
This
is my health hitting rock bottom.
We
take a "last trip of my life"
Halfway
thru I get too sick to take notes.
The
Crixivan arrives & the PICC-line is inserted
in
a last ditch attempt to save my life.
Wednesday, May 1, 1996
Site of the Day!!??!!
I found in my mailbox a note from The Original Cool Site of the Day informing me that I had been named their "Iso-Topically Cool Site of the Day" for April 30, 1996. They even sent me a graphic "trophy." It must have been a very slow day in cyber space. For you first timers coming from infinet, welcome to the madhouse. It's been a tough week and most of it is pretty easy to catch up on.Health is incrementally better today as opposed to yesterday when I felt so weak. I went to the office and spoke to Ronda and Tim Goodwin, a manager, telling them that the doctor was worried that I was on a definite slide down, but that he also felt we could arrest that and get me back on track. I ran out of energy about 1 p.m. and came home. Then I called Medi-Cal and tried to straighten out my insurance problems. They sent me to Social Security which gave me a form to fill out. Fun.
Came home to a phone call from David Robyn's manager. She had just heard a cassette of songs from The Last Session given to her by David. She said she listens to a lot of music, so when she put it on, she was idly working at the computer. During the third song, she said she suddenly stopped working and rolled the tape back to hear it over again from the top. Then she said she laughed and cried and felt it was a remarkable work.
She said she couldn't believe that such a dark subject could be written about with such humor and light. When I told her it was me singing and playing on the tape, it totally blew her away. She said any record company that doesn't jump all over this has lost its mind.
I was beaming, of course, listening to all this trying to keep her on the line so she'd keep piling on the compliments! (Vain? Me? Why, I never...). Such a mixture of good news and bad in my life these days, but I'm happy to say that my spirits are high. It may be rough going on the health front, but AIDS is one day at a time and it always has been. Faith and hope combined with a constant will to survive -- and love and support from my friends -- are my best weapons.
Thursday, May 2, 1996
Countdown to AlaskaWhat a day for the Geocities page counter to go down--the day I find myself "Cool Site of the Day." I had over 1100 hits on my site yesterday morning and then yesterday afternoon, the count was suddenly only 600. Oh, well. I love getting e-mail from those of you who read this.Ronda at Bob-A-Lew Music said she played a tape of song from The Last Session for their Dutch sub-publisher yesterday and he went crazy for the songs, saying he could get all kinds of artists to "cut" them. So, today we're making tapes for all our sub-publishers all over the world. I have said from the beginning that while it's difficult and expensive to get a musical produced -- even off-Broadway with a cast of 5, one set and no costume changes to speak of, the estimate is upwards of $800,000! -- it becomes much more possible if you have a hit song from it floating around out there.
The Netherlands guy also said he felt the musical would go over big in Amsterdam and that we should consider a European production. Okay. I'll consider it. Now what?
On the health front, I'm again slightly stronger although I had a bad night last night. I had dinner, felt really terrible (hey, it was only pasta), lay down and fell to sleep, then awoke about 10 and exploded. After that, though, I felt better and went to bed.
ALASKA COUNTDOWN! Four days until our two week vacation cruise to Alaska!
Friday, May 3, 1996
"Rent" & A Note from A StrangerThursday night on 48 Hours, a TV show here in the States, there was a story on the new Broadway show, Rent. It opened off-Broadway to sold-out houses, opened on Broadway and won the Pulitzer Prize. The man who wrote it, Jonathan Larson, however, died of an aortic aneurysm the night before it opened. He never saw the success it would go on to enjoy. I could tell Jimmy was shaken up a little by the story as he worries so much about me.I was at the computer at the time but listening to the story. Then I shouted to him, "Don't worry. I'm gonna see our show open. I'm too vain to miss how much the world is going to love this."
But, I have to tell you. I'm so proud of this work, I have already seen the opening night. I have already accepted my Tony. The victory has taken place in my mind. There is no victory sweeter than to know you have written something good and fulfilling -- to have accomplished the artistic task you set out to accomplish.
The one dream I don't think I can actually fulfill is to star in the show myself. I just don't think, realistically -- because of the inconsistent nature of my health -- I can even consider it. My friend, David Rambo, who is always a source of joy to me, said, "Forget that! You'll be doing it in fund raisers all over the world and for special events. They'll be falling all over themselves to get you!"
He doesn't realize how wonderful he is. By the way, he was the one in the hospital last week with the blood condition. I spoke to him tonight and he is really sounding great. He said he is quickly and fully recovering.
My friend, (two-time Academy Award winner and Tony nominee) Joel Hirschhorn called me tonight and said that I shouldn't worry about things. He said The Last Session was an extraordinary work and that there was no way it would not be a great success.
Here is an e-mail (and my interpolated responses as I remember them) from someone who came to my site as a result of the "Cool Site of the Day" designation:
Date: Thu, 02 May 96 10:52:18
From: CrystalSteve,
I just read through your bio and about your musical. Your words have really touched my heart. Going It Alone is great!! Words can not begin to describe how moving it was. I guess I became intrigued by what you had to say when I read your bio and you talked about going to church.
I answered:Many Christians feel that my being a gay person completely disqualifies me from claiming any kind of Christianity. I deeply appreciate your open-mindedness and your sincerely loving attitude. Truly you know His Love.It's funny, and I didn't realize it until we were deeply into this project, but I suppose I suddenly find myself with a ministry. It's a ministry to Christians to teach them how to minister to people with AIDS. I mean, even if you believe sincerely that it's "wrong" to be gay -- and I fully understand those who do, although I could show them how they are wrong -- it does not mean gay people should be treated as if they were murderers about to pounce upon the unsuspecting.And I'm really disappointed in how little my own church-- the Baptist Church-- has reached out to the suffering. My character of Buddy, who feels it's his duty to put his finger in [the gay/AIDS character] Gideon's face and pronounce him a hideous sinner -- while Gideon sits there on the edge of committing suicide and obviously in pain -- is based upon a real character in my life.I'm lucky that I come from a Baptist background so I have already met this type and had the strength to endure him, but it took me a year to get my thoughts together after his initial attack. Imagine if someone did *not* come from my background and saw him as a representation of *all* Christians!Ministry is about finding out what people need and taking care of their hurts and their pain. After ministry, when the person is ready and asking, should come any kind of witness. How stupidly shortsighted to try to "save" someone when they are still hungry or in pain.Her letter continued:I thought you really made sense when you talked about the church being a loving congregation. That is what this world needs from the church. Less condemnation and more love!! I too am Baptist. I admire your strong faith in God. Most people tend to hate him or blame him when they are faced with situations such as yours. I want you to know that I will pray for you!!My response:I'm no saint. I have had my times when I looked at God and said -- as Jesus did -- "Why have you forsaken me?" Jesus has provided a great example that it's more important to be honest and questioning than to be hiding our fears and questions. How else can we confront our doubts than by voicing them?
She then responded:Steve,I responded:
I understand totally what you were saying. The church I go to back home is very closed to anything other than tradition!! I can't believe them sometimes. I feel I have to bite my tongue every time I am there. I guess that is why I stopped going there. I am fortunate now to be at college and have a wide range of choices of churches to attend.It's important to remember that many church "traditions" are not necessarily Biblical traditions. They're cultural traditions. Remember, the Baptist churches were among the worst of those who defended slavery and racism. Many Baptists were the leaders of the Ku Klux Klan. And they used "the Bible" as proof that they were correct in their "traditional interpretation." In fact, I knew people when I was growing up who would use the old quotes from that era to defend their own racism. Just because someone we respect says something is true does not make it true.
She continued:I am sorry for your struggle with a character like Buddy. I wish sometimes I could just make people like that see the damage they do. Most people I know here have that kind of opinion about Christians. Its hard for me to stand up and show them that not all Christians are in your face people.Reader, how can I describe how an exchange like that makes me feel? Thanks to the "Site of the Day" designation, I have now gotten letters from England, Australia, and all over the USA. People telling me they are learning about AIDS and others telling me stories about their own struggles with diseases, or with intolerant or ignorant people.Yes, ministry is taking care of the needs of others. Sometimes I have to remind myself of that. I am glad you said something because I am going to be faced with several situations this summer that will call me to minister. I think many people just need someone to care and love them. I know I do. If you can show them love then that is the greatest healer and the greatest minister.
Another thing you said was about being honest and questioning our fears and then looking to God for answers. That means a lot to me--especially today. Right when I got your mail a friend of mine was on the phone. Her best friend got raped the other day and both are trying to deal with it. Maybe the words you gave can help. Thanks.. You are a truly extraordinary person, and I am glad I stumbled on to your page. Keep in touch... my prayers are with you and those who love you. Always remember that God is your refuge and strength. A very present help in your time of trouble.
Love,
CrystalThese letters touch me deeply and I love every single one of them. I hope you'll write me and tell me if any of this means anything to you. Also, if any of you have a million or so to toss at me so we can get this show on... uh, sorry about that. But, hey, I'm just trying to help you get in on the ground floor of a great happening.
Also, I'm shameless. Absolutely shameless.
Saturday, May 4, 1996
Blues, Abuse & HomophobiaJimmy had me laughing last night because he saw some kind of pop quiz on Dateline the other night (a quiz which consisted of exactly one question) which was supposed to determine if one was a pessimist or an optimist. He answered the question fully expecting to be named an optimist, but he was shook up to find that he had given the pessimist's answer. Now he tells me he's been running around freaking out that he's a pessimist.I told him his main problem was that he was a New Yorker, and that that made him certifiably nuts.
Yesterday I went to Alan O'Day's (remember Alan from the 70s? He wrote "Rock and Roll Heaven," Angie Baby," and he wrote and sang "Undercover Angel"). Anyway, he's a great guy and he's been excited about The Last Session from the very beginning. He recorded a full band arrangement of At Least I Know What's Killing Me and today he produced me doing a vocal. He helped me get some very hot blues licks in and we had a great time.
A side note: I was feeling very weak when I got to Alan's. Then I started singing. By the time it was over, I felt like million bucks. Music. The great healer.Also yesterday, David Robyn brought in a new song for me to review, and a new verse on one he's been writing for several weeks. He was really nervous this time because the new song was not nearly as heavy as the ones I've been encouraging him to write.He was quite relieved when I liked the new "kinder, gentler" song. (He said if I hadn't liked it, he would probably have played it anyway with his band -- hiding it from me.) By the way, I'm not totally comfortable that he allows me to wield so much power over him in that way. I am flattered that he respects my opinion, but I don't want his whole day to rise or fall over whether or not I like a song. I'm only one guy with an opinion. I explained it wasn't "dark" I was in love with--but rather, "truth." I want him to write "truth."
The second song, though, "The Scars From A Harsh Hand," is one he's been trying to write for a month or more. It's the most intensely personal and it deals with the way his father used to kick him around when he was an adolescent. He's been scared to death to tell the truth and just get it out. Three or four times he's brought in verses that evaded or shaded the truth, and everytime I've stopped him and told him he's bullshitting.
Today he brought in a new verse. Just one -- (in addition to the one we already approved) -- and it had me in tears by the time he got to the end of it. Massively powerful. I felt so proud that I've led him to this sort of self-revelation. It's so healing to really write the truth and not creep around it shading it and hiding from it.
I'm also trying to get him to be as fair as possible and to take responsibility for his own contributions to what he and his father went through. He tells of stealing his own father's beer and getting drunk, doing drugs, kicking walls, etc. He's trying to step back and see himself through his father's eyes so that he doesn't paint too one-sided a picture. I've got to hand it to him. He's the hardest working writer and singer I've ever known. And this Sunday night, when he plays at the Campfire (at Genghis Cohen in Hollywood) and I get to introduce him, I'm going to be very proud to do so.
Three days until we go on vacation. I can't wait. I'm already thinking of the clear Alaska air, first class dining onboard the Crystal Harmony, etc. And we've even scheduled an appointment with a theatrical producer when we dock in San Francisco! No grass growing under our feet, no sirree.
Forgive the length of this, but I had one more e-mail I wanted to share with you. (Besides, after Monday I won't be here for two weeks. If it's too long, you can save it and read it next week). It comes from a man in -- jeez, I don't know where he's from. The USA somewhere. I've included my own interpolated answers to him as I did above.
From Don:
Steve,
Your openness and honesty has reached me.I briefly answered:I am straight but harbor no hard feelings for gay individuals, but see the prejudice all the time. And I think the prejudice is from lack of understanding. The subject is not discussed openly between gay and straights. However, your diary tells it like it is and I am touched by it.
I try not to make a big deal about it. I am what I am and that's about it. People will either like me or they won't. I give them that option. But it's always refreshing to meet straight people who are open and non-judgmental. We run into so many who aren't. My brother, who is a cop in Little Rock Arkansas, always refers to himself as "just a guy." That's how I feel I am. I'm just a guy.He continued:I have several friends who I know are gay, but the subject never comes up. They have never said to me that they are, and I never ask because I feel like I am saying to them if I ask "I need to know your sexuality to determine our friendship". Which is totally untrue! I love those guys for who they are not what they are. But would also like for them to feel free to act as themselves around me and enlighten me. No one should have to act a certain way to be accepted. And I know that, since we work together, they are protecting their jobs.I responded:A question for you : If you worked with a straight guy, for years, and he was a close friend (we do dinners, parties etc after work) would you be offended if he asked your sexuality?
I mean I am curious and I have questions to ask them, but not maliciously. This goes back to the understanding part. People fear what they do not understand, and that is a big part of the prejudice. I would like to if I had wishes, to end prejudice, racism, hate and all associated with it!!!
Such a tough position for you to be in. You want so much for all the walls and secrecy to fall so you can relate to your friends soul to soul, and yet you are being respectful of their own desire to protect their privacy (for their jobs or whatever). The only suggestion I would make would be to tell them about my site and about how much you "like" this gay guy on the internet.Perhaps you could say how much you hate prejudice and how my notes have made you curious about how "the other half" live. I can tell you that it's a relief when one can stop hiding and pretending. Just remember that if a gay person is protecting himself in a potentially hostile environment, telling one person is like telling everyone. He knows the secret will be out and up for office gossip. I think the wisest course is to open the door as I've suggested and then see if they feel "safe."And it's important to know that it may not be about *you* if they stay guarded. It's the office gossip thing. Some office environments will tolerate gay people if it's "don't ask, don't tell," but if the word gets around, the gay person is usually accused of being "in everyone's face" about it, when that may not be the case at all.
People who are bigoted cannot let go of something. They think, for instance, that the simple act of walking across the room was done for their benefit. And it eats at them.I know I'm blabbering on, but I hope you read this and respond. I feel as though I already know you!I'm so honored that you have embraced my life the way you have. It pleases me so much that you took the time to read my blather. When I started this, it never occurred to me that anyone but my family would read any of this. Or even WANT to read any of it.p.s.s. Your diary should be a book someday! I'd buy it!Good luck and let me know how and if you approach your friends. I have a feeling they'll love you for it. And, by the way, I don't know if you're married, but the best kept secret in the world is that the best place to pick up girls is in a gay bar....[end e-mail]...And that was it. What a great guy he sounds like. I'm reminded of when I spoke at the UC at Northridge. One student -- forgive me if I've told this story -- asked me what I thought "we" could do to end homophobia in the world. I said I was not a political person so I didn't have a "big" answer but -- and I put a smile on my face for this -- I said my personal way to end homophobia was to strive to be this incredibly great human being.
Laughing, I said, "You see, it's impossible to be in a room with me and not like me. I'm just too lovable! And when someone likes me, if they were homophobic before they met me, well that's one wall of prejudice that just came tumbling down."
Of course, in real life I'm a total jerk, but in front of a class I'm an angel...
Sunday, May 5, 1996
Evita, Note from AustraliaIt's about 4:30 a.m. on Sunday and I am still up. Actually, I went to sleep on the couch last night about 10 and then woke up a couple of hours ago, came over to check my e-mail, and found a message from a 13 year old kid in Australia named Ollee--god, I love the web). He lives in the outback in a remote corner of Australia in a school with barely a handful of kids, and yet here we are sending notes to each other. He has taught himself html markup language and is even writing his own programs! Astonishing. At 13 I barely knew how to tune in a radio.It's funny, but computers are being credited with making people more isolated. And yet, I "speak" to my brothers and a cousin every single night. As well as friends on the east coast and now friends all over the world.
Yesterday, we went to see "Evita" at Thousand Oaks and then last night I showed Bob, my old guitar buddy who's going to live in our apartment while we're on vacation, how to use the net.
All I can think of is getting on board that ship and being at sea cruising to Alaska for two weeks. I'll tell you all about it when I get back. While I'm gone, you can read all the old diary pages, which I've been reorganizing. Doesn't that sound like fun? To all of you who've been sending me notes: thanks so much for the good wishes and the care and concern you've expressed.
If you're in L.A., come down to Genghis Cohen on Sunday nights and watch all the Campfire Gang. I'll even introduce you to crabby old Nik Venet. You can sit at the bar and listen to him tell all this stories about Bobby Darrin and the Beach Boys and the old days at the Troubadour. He's been around for a very long time. And he seems to remember every moment of it. *Yawn* (Just kidding, Nik.)
By the way, my health was again stronger today. I've been digesting my food a little bit better, I think. It's a relief. I really measure my health on a day to day basis right now. All I really want is to incrementally gain some weight and keep back the you know what as much as I can. I've had a little success there, but I would sure like a nice normal...uh, well, NON-you know what.
[The following few diary pages were typed up a few weeks after we returned from our cruise to Alaska. They were transcribed from a legal pad I took with me. About halfway through the trip, I got too sick to take notes.]
Monday, May 6, 1996
Cruise to Alaska -- Day OneWe spent all morning packing and getting ready for the cruise. Then Bobby Cox drove us to San Pedro to the docks. I had the video camera out and we were taping our arrival. The first person we ran into at the check-in was Jane Kean. You might remember her from the later episodes of The Honeymooners when Jackie Gleason was taping the show in Florida. She played Trixie.Well, they weren't ready to board us so we found ourselves waiting in a big hangar sitting on hard folding chairs. For most people this would not be a problem but when you're as skinny as I am with absolutely NO butt (not that I ever had one to begin with), it can be a bit uncomfortable. I end up putting my hands underneath me trying to get comfortable. Also, I was very hungry by this time and needed to eat. Over on one side there was a cart. It had hot dogs and cokes (and a sign calling it--the little cart--the "Dockside Cafe"). Cafe. Mm. Hm.
Finally, we boarded the Crystal Harmony and were immediately impressed by the sheer luxury of this huge ship. The reception area on the 5th deck featured a two story water fall and a clear lucite grand piano. Not bad.
Still, I was dog tired, especially since my overall health had been in decline for the past two weeks anyway and I was very tired. We went to the bow to watch the departure and met this old gay couple who had been together for 52 years. They met in the army during World War II and have been together ever since. When we got back to our stateroom--5063, Jimmy said to me... well, actually I wrote a poem about it. (I really shouldn't be allowed near paper and pen).
Later on I got very sick and vomited violently. I couldn't bear to go to dinner, so I just stayed in the stateroom (we're not allowed to call them cabins) and had my dinner delivered by the our beautiful steward, Ulrika from Sweden. Finally I went to sleep.
Tuesday, May 7, 1996
Cruise to Alaska -- Day TwoBecause I felt so sick yesterday, I didn't really get to know the ship very well. All I know is that it's luxury on top of luxury. Our stateroom is just off the big "Crystal Cove" lobby which is just off the restaurant. This morning I got up, took some medication including my anti-diarrheals, grabbed a book ("Beloved" by Toni Morrison--a Pulitzer Prize winning book about a young slave girl just during and after the Civil War) and went to have breakfast. Jimmy was still asleep.The dining room was fabulous. Windows all around looking out onto the sea, a line-up of handsome young waiters at the door waiting to escort me to my table, and more silverware at my plate than I can count!
They offered me freshly baked sweet rolls and croissants, eight kinds of juice, fresh fruit, perfect omelettes, pancakes, waffles, Swedish pancakes, every kind of breakfast meat including steak--it was incredible. There was only one thing not on the menu. Prices. It was all paid for beforehand. (And for us, since it was a free cruise, we didn't even have to pay that!)
As I sat there amidst all this luxury, I tried to imagine what Sethe, the lead character from "Beloved" would think. It was an incredible juxtaposition reading about how she sewed pillow cases and a blanket together to make a wedding dress (which then had to be taken apart again) as six waiters waited on me hand and foot. I finished my meal, eating slowly, praying me body would begin absorbing this good nutrition.
Afterward, I wandered around a bit. Just up one deck I found a big Yamaha grand piano in "The Avenue Lounge" and, noticing the room was empty, I sat down and began playing songs from The Last Session. Then I noticed that there was a PA system and microphone, so I switched it on and just had a magnificent party of one.
Suddenly, I was kind of jarred because I looked up and saw someone standing there watching me. Turns out he was the regular pianist who commands this bar in the evenings. He said it was no problem for him that I was there but that "they" might object to my using the PA. I said I'd turn it really low but that with such a great piano, I couldn't hear my voice.
We stopped in Santa Barbara and I went ashore for some bottled water. I also called home after dealing with a crazy man at the phones. He was this old guy who joined the line waiting to use the phones. I was next but when the phone got free, he leaped ahead of me and began this long, rambling conversation. Finally, I got to the phones and left my sunglass clip-ons there.
Back at the ship, I started feeling sick again. This was later in the day. Finally I had some very bad you know what and I felt so bad afterward that I just laid down on the bed and slept until dinner time. I didn't feel well enough to get up for dinner, so once again I had it brought to my room and I skipped the floor show, preferring to just go to sleep.
Wednesday, May 8, 1996
Cruise to Alaska -- Day ThreeThis morning I felt a little better than the last two days. Probably because I've been sleeping so much. I suppose I had been pushing myself professionally before the trip -- much more than I should have been, or even realized I had been because I could definitely feel some stress lifting. I went through my usual routine of taking my anti-diarrheal medications and anti-virals, took a shower, grabbed my book and went off to the dining room for another lush breakfast. This morning I had waffles.Met Dick and Joe, another (gay) couple that has been together for 32 years and had created a successful business in San Francisco which they finally sold so they could retire. Very sweet people.
I went to the piano bar for my morning "workout" and, what do you know, the microphones were missing. I guessed the pianist (who does an act with his wife) didn't appreciate me using his stuff after all. I was a bit annoyed. Not that he owed me the use of his equipment or anything; it's just that I was spoiled after having so much fun the previous day. Still, I took the opportunity to simply play the music from the show and not sing. It was totally fun to experiment with the music and just play around with the melodies and rhythms. I suppose it's a completely (if you'll pardon the expression) masterbatory experience, but, Hey! I was alone!
The ship docked in San Francisco and Jimmy and I got off to meet "D.R.," the theatrical producer we spoke to last week. I'm using his initials because I don't wish to put him on the spot publicly or, as they say, "jinx" anything by speaking of it too soon. We met with him and his sometime partner, "J.L." for lunch at the Fog City Diner. (We even picked up the check. Are we serious or what??) Our sense was that he really liked and admired the show. One interesting thing he said was that he deliberately did NOT listen to the tape of the music, but instead watched the reading because he wanted to see if the book held together. He explained that he's been burned by shows with good scores, but with bad books.
In fact, he said that he's been more or less trying to get out of the producing business because of how difficult it is to make a living. Then he said, "I hate you guys because your show is pulling me back in."
Well, realistically, it's a long way from liking something to committing your life to it, but since he is really the first legitimate Broadway producer to review this material, we felt very relieved that he didn't just dismiss it out of hand. Oh, and I had the crab cakes. I'm sure you were dying to know.
After we got back to the ship, I laid down and slept. Then Jimmy and I went to see "Sense and Sensibility" (LOVED IT) and, because I still wasn't up to par, and also because his back was giving him trouble, we stayed in and had room service again. (Good thing we don't have to pay for that!)
Thursday, May 9, 1996
Cruise to Alaska -- Day Four (at Sea)I went this morning to play the piano and my space was occupied! Harumph, I said to myself and I threw myself down into a chair to read. It was another passenger and he was not very good. He just -- JUST managed to hit all the right notes. When he got up we talked a little. A successful businessman in his 50s who one day decided he's like to learn to play. So when he built his dreamhouse in Dallas, his wife bought him a grand piano and he started lessons four year ago. I praised him for doing something he always wanted to do. Most people just dream away and never actually "do."After he left I began playing. Today, I raised the lid on the piano and really just got into the "music" of The Last Session. I had my eyes closed and I was banging away only to look up and see that a Japanese family of three had come into the room and sat down. A married couple in their 40s, I guessed and grandma. Grandma had this cute ring of flowers around her head like a little crown.
Dad was up and looking a the water and talking -- and he eventually left the room, but the two women, without actually acknowledging my presence except in the most cursory way, sat and listened to the music. I modulated my performance (sticking to the songs from the show) by looking out at the water and doing the songs "new age" style. You know, smoothly trying to make it more abmient than performance.
While playing I noticed that the grandma was doing something with her hands, something very intricate. And occasionally I'd see a bright gold flash. She never looked at me once but she kept on doing this very intense thing. Occasionaly I'd see her reach into her pocket and get something (or put something away) and then I'd see her go back to work.
Finally they got up to go out. I didn't really feel like saying goodbye or breaking the mood of the moment, so I kept on playing and ducked my head keeping my eyes closed. Then I looked up and the younger of the two women was standing right in front of me. She took a beautifully intricate gold foil origami bird out and put it on the piano. She said something Japanese with a very stumbling, "Thank you," and they left.
I was so touched, I think I cried.
That morning I also met the pianist in the Filipino dance band which was on board.
For lunch we went upstairs where they had a very elaborate barbeque around the pool. We ate with Jane Kean and Betty Linton Aidman. That night they featured a very bad concert pianist who used sheet music and missed most of the runs, and a bad cabaret act by one of the entertainment staff.
Her name was Lisa Rooney and her big joke was that she didn't marry a man because his name was Jim Mooney and she would be Lisa Rooney-Mooney. She doubled herself over with laughter on that one.
(Also, Jim told me that last night, he got a little tipsy at the bar and told off the piano player in the Avenue Lounge for taking the microphone away. His name is Ron and his wife's name is Elly. When Jim told me about it this morning, I was so embarrassed. I didn't think I could show my face in there again.)
Friday, May 10, 1996
Cruise to Alaska -- Day Four (Portland)Cruising to Portland was a new adventure for both this ship and for Portland. This whole itinerary is what is called a "repositioning" cruise. The ship has been in the balmy seas for the winter and is starting the Alaska run next week, so they inserted this week long run up the west coast to "reposition" the ship in Vancouver for the summer. I think it's the first time they've done this. It's certainly the first time they've been to Portland.Last night, though, we got word that one of the ship's four engines had failed and the ship had not gotten as far as it would liked to have. We were supposed to wake up in Portland but clearly this morning, we were still cruising. The ship's captain put the best face on it, though. You see, Portland is inland and we need to sail up the Columbia and Willamett rivers. We would have done this at night, but instead we are going to get to see the river in the daytime.
And it was a very nice cruise. I sat looking out a window with this very elegant older lady watching the green banks of the river drift slowly past our view when suddenly this huge thing passed by.
A nuclear reactor. Kinda put a damper on the whole landscape.
About noon, we were still sailing and I started to feel bad, so I laid down in the stateroom and took a nap. Felt a bit better about 2, so I went up on deck and there we were sailing under these spectacular bridges. They had to raise three (or was it four) bridges to get our huge cruise ship through.
And we were all over the newscasts. There were helicopters circling over and on our TVs the anchors were saying all kinds of pithy things like, "That's a lotta ship." We were a sensation. One reporter said, "The harbormaster reports that this is the largest ship to ever come up the Columbia and into our harbor." (Later on, when we were leaving, they showed interviews with some of the crew, marveled over the fact that the ship was a "floating city with restaurants, swimming pools, casinos, nightclubs, etc." And then they did some fluff about how much the passsengers loved Portland, etc. Gawd, I love TV news.)
There was this one spectacular heli-shot that showed us tightly sailing under this raised bridge, though, that was pretty breathtaking. The bridge was not like two arms raising in the middle. It was a railroad track and the whole section over the water was raised straight up, parallel to the water. Picture an arch, only squared, not round at the top. The section was just lifted straight up in the air to the top of the squared arch and our ship just barely squeezed through. Really dramatic.
Finally, we docked and -- wouldn't you know it -- the dock was too low for our gangway and the port didn't have one ready, so all 900 of us sat one foot away from Portland totally unable to get off.
Finally, they got a gangway to us and we got off the ship. We were near "old town," which I think until recent days was a red light district, but was undergoing massive renovation. I wandered a bit on a mission. I was to find bottled water for me and Scotch for Jim so he could avoid running up a bar tab. But I didn't feel like touring because I still didn't feel well.
Portland is a very modern city. Nice buildings and nice people. I crossed out of the little park where our ship was docked and went up the old streets marveling at the wonderfully preserved old buildings sitting here in the shadows of the modern buildings across the river. I had only gone one block when I looked to my right and saw something that looked like a beacon from home.
It was a advertising board out on the sidewalk that said, "Coffeehouse. Open Mic from noon to 5." Songwriters! My first love. A taste of Portland's acoustic scene. Wonderful. So, I went to the little storefront which had lots of big windows looking out onto the sidewalk and peered in. There was one guy in there (nice looking, late 20s) sitting at a table reading the paper. To his right was a little chair, a microphone, a little PA system and a guitar leaning up against the chair.
I walked in and said, "Are you the open mic?" He said, "Yes." So I said, "Well, sing me something." He said, "Okay." He got up and put the guitar on and positioned himself at the mic. I said, "This'll be something you wrote?" He said, "Yes," and took off playing and singing a kind of bluesy poetic sounding song. Some of it captured me, some of it didn't, but it was definitely original and he was a good singer.
He said his name was "Juh-my-uh" but he spelled it, Jamië. (That's Jamie with an umlaut over the "e" in case your browser can't read that). During our subsequent conversation he said he had stayed in Portland because he didn't want to "go Hollywood." I said with a name like Jamië, he already had. Too late.
So, he sang some more and we talked when this Biker Dude came in. He was a very cool guy -- more like a hippie than a leatherneck riding a bicycle and looking unshaven and long-haired with some kind of old brown leather coat and psychedelic t-shirt I think-- and we got into a very heavy discussion. He was an artist and a car mechanic and he owned his own house or something. So he retired and only works on cars when he needs some cash. He said he did volunteer work for hospitals and AIDS places and that's when I told them my story. We all three kinda bonded up there in Portland in that little rundown storefront. And I thought of all the other passengers on crowding into tours or shopping in a mall, trying to see the whole city in one day and it occurred to me how much I loved that moment just sitting there with two strangers. A songwriter, a Biker Dude and me.
But I was losing strength. I told Biker Dude I needed water and Scotch and he walked with me to the store. Couldn't find any Scotch but he told me the story of his life (described above) and that he liked kinda just living a "hang out and do what you want" lifestyle. We went back to the coffeehouse and just as we were arriving a most interesting thing rolled up to the curb.
It was the most wrecked and unbelievable van I've ever seen in my life. It was painted black and looked--I don't know--squashed or something. There was green paint all over it, words. And some longhairs began rolling out of it. Then it hit me. A band.
Biker Dude and I went into the coffeehouse with our water and we watched these guys wander in front just a bit until two of them stuck their noses up against the glass. I signaled for them to come in. So, meekly, they kind of crowded up near the door. One of them said, "We're a band and we're looking for a gig for tonight. We're on our way from San Francisco to Seattle and we ran out of money, so if we could just play a quick gig somewhere..."
Jamië told them that the club didn't really have paying gigs, especially at the last moment. And anyway, he knew they were booked. The musician said, "No, we understand that. We just were hoping someone could wedge us in like after the main show. We thought if we could just sell two CDs after the gig, that would get us there."
Trying to get to Seattle by selling two CDs.
And my mind went popping back 25 years to my days on the road and remembering when we'd have a bad gig that didn't pay, trying to sort our resources so we could buy lunch and make it to the next town. I said, "Let me see your CD. What kind of music do you play?"
He said, "Reggae and reggae funk." I said, "How much for one?" He said, "Ten bucks." I said, "I'll take one." He looked at me totally surprised. "Really??" He asked. I said, "Yeah, songwriters are my religion." And right there I gave him 10 bucks and bought a CD. The look on his face was priceless. In retrospect I wish I had just given them 20 bucks and given Jamië or Biker Dude one of the CDs but, in the moment... well, I'm not rich either. (You know, I haven't even listened to it. In fact, I had forgotten about them until writing this down. I went back into my luggage and found the CD. The band is called "Counterpoint." Hm. Wonder if they're any good. I'll listen to it later and tell you.)
Well, I was tired and feeling sick but wanted to leave my new friends with something so -- because there was no keyboard -- I sat there and sang The Group to them a cappella. It kinda stopped everything being such a heavy song and all.
I loaded up my water and went back onto the ship. But once I got there I realized I was having a massive fever spike. I was hotter than hell. I called the stewardess, Ulrika, to ask her is she had a thermometer or anything. She called the ship's hospital. The nurse called to say they only had two thermometers on board and couldn't give me one. So I asked if they had any cold compresses for my neck and back. No, they didn't have any cold compresses. I held my tongue just before, "Well, what the fuck DO you have down there," came tumbling out, and I thanked her anyway.
I have worked on ships before. I was nearly killed by a ship's doctor before, but that's another long story which I'll save for another time.
So, Jimmy fixed me some ice in a towel and I lay there until the fever broke. For dinner, I had Ulrika bring something in and I lay there kind of half-conscious and in a daze until I finally drifted off to sleep.
[The rest of the cruise never got written. I was so sick I didn't take any more notes. In the following pages, I am much sicker than I can admit publicly. Although I ate a ton of food on the cruise with the goal of gaining weight, it failed. I was down another pound and fading fast.]Sunday, May 19, 1996
Home and DryWe are home from our glorious cruise to Alaska.We docked this morning in Vancouver, B.C., flew home via Canadian Airlines on seats small enough for the Munchkins. There were two screaming kids next to me. And Jim had to go directly to ASCAP because he needed to work on the script for the Pop Awards tomorrow night.
But we're home. Thurber the Cat has been meowing at me for the last hour, I had 400 e-mails and my ears are hurting because for some reason, they got blocked up in Alaska. The ride on the plane was excruciating as the air pressure kept changing and my ears would make this squeaking sound and then suddenly pop--over and over again. I wonder if I've ruined them.
Am I kvetching here? I don't mean to be. It's just... well, if you've ever traveled much, you know that the first day back is always the worst. At least they had laundry rooms on the ship and I was able to wash all our clothes.
Anyway, I'm going to go rest and sleep after a very long day. I'll be putting a diary of our days at sea on the May Calendar and updating you here as well. It was a great trip, but it's even nicer to be home.
And, yes, I did eat a lot and I did get some strength back into me. The regular meals (and the sheer quantity of food) was fantastic. So, I think we were wise to do the cruise thing. Now we start making decisions about TPN and intravenous feeding. (I've been dreading it). But first things first. Tonight, I sleep.....
Monday, May 20, 1996
Mail from Rev. Jerry & Getting Back to NormalWow! I got some incredible mail while I was gone. The best was from a minister, Rev. Jerry Alan Smith, who said that he had downloaded the lyrics to Going It Alone and used it in a devotion one Sunday. He also told me that he had a lady in his congregation with a son who had AIDS and that it was causing her great grief. He took pages from this diary and gave them to her to read.He also sent me a copy of a great sermon he recently delivered on gays and the Bible. It's quite brilliant and very loving. I've posted it here for those of you who are still trying to reach Christians who are caught in the homophobic teachings widely taught by misinformed evangelicals today.
I don't mean to be disrespectful to evangelicals or any others who have been misled by their so-called leaders. But I would remind those who have ears to hear that most anti-gay dogma is used by televangelists as a potent money-making scheme. You will alway find them railing against gay people when the coffers are low. If they were to change their views, it would wipe out a major portion of their ability to scare Christians into sending them funds to fight off "the gay agenda."
Everytime I get feedback like this, it makes me more determined than ever to plow ahead and fight the good fight, even while detailing my own personal struggle for life and for health.
I heard this morning on the news that the Supreme Court struck down the Colorado law which tried to exclude gay people from receiving equal civil rights. How can blind hatred and stupidity cause people to even consider such a ridiculous law? Do we not pay taxes? Do we not bleed?
The ASCAP Pop Awards are tonight. This morning Jimmy got up early because he had a ton of work to do on the script. My loving (and gorgeous), sometimes co-writer, Christine Kellogg--who complains that I never mention her enough here, is coming by to take me to the affair. The ASCAP Pop Awards gives certificates and recognition to writers who have had significant airplay on radio and TV the past year. They also give awards to those who have played a significant artistic role. Tonight Tom Petty is being honored and I think Melissa Etheridge is performing. I had to laugh at the invitation because it said the dress was "Creative Black Tie." Gawd knows what that's going to look like. Hollywood really is a universe of its own.
My ears are still mysteriously blocked up. I think it's allergies, so I'm taking antihistimines in top of everything else. If you think my mind isn't a blur sometimes after the codeine, paregoric and antihistimines--well, then you aren't paying attention.
I stood on the scales this morning but was disappointed to find that I have not gained a single ounce of weight despite that fact that I had some good success fighting off the diarrhea on this trip. I am now 140 pounds. 6'2" and 140 pounds. I don't look like a walking skeleton yet -- still my handsome self -- but it's very discouraging. Anyway, I'll see Dr. Ellie this week and, if my insurance is straightened out, perhaps I can start the TPN treatments soon.
Time to unpack and get our lives back to normal. Then I'll start writing out the cruise diary for you who are interested. I kept pretty good notes and if you've never been on a cruise, perhaps you will enjoy experiencing it vicariously through these pages.
Tuesday, May 21, 1996
L.A Times Article & ASCAP Pop AwardsLast night, Al Martinez, the superb columnist for the L.A. Times, called me and asked me if I was absolutely SURE it was Anson Williams who I saw in the Emergency Room when I was in there with pneumocystis pneumonia. I assured him it was so. Then he told me he was submitting his article on me for the Tuesday paper.This morning, there it was in all it's glory. It's called Just One More Song by Al Martinez.
He quotes from the lyrics to the show and mentioned that he heard about me through the internet. Has one of you good people been talking....?
Last night at the Pop Awards banquet at the Beverly Hilton, ASCAP had the reception out around the pool area. Then we were all herded into the "International Ballroom" for dessert and the awards presentations. These nights are known for being rather endless because they give out the awards to all the songs (meaning all the songwriters and publishers) that have any kind of significant airplay. But they pulled it off rather smoothly and it was a great surprise when Ellen Degeneres came out and made hilarious comments in her introduction of Melissa Etheridge, who shared the "Songwriter of the Year" award with Hootie and the Blowfish. And Tom Petty was appropriately cool as he received the "Golden Note" Award.
One friend of mine--a very classy lady--at our table, who had had a terrifically bad day--and who NEVER drinks--got very drunk and then sick at the table. Blessedly, it was toward the end of the night, so most of the people filed out and didn't see her. I stood on guard through all the vomiting. Then we took her credit card out and checked her into the Hilton because there was no WAY she could drive home.
My left ear was totally blocked up the whole night--as it is this morning--and it was starting to hurt. I still don't know why. Some kind of allergy thing. I just hope it hasn't become infected. I like my ears.
But today I'm on cloud nine. The article is fantastic. Life is fantastic. I'm so happy to be alive and I'm happy I have you to share it with.
Wednesday, May 22, 1996
Started Crixivan & Reactions to L.A. Time ArticleI didn't sleep that well last night. I was up on the hour every hour having to -- well -- pee. I think it could have something to do with the Crixivan I just started taking (see below), but I'm so bleary-eyed this morning. They tell us to drink lots and lots of water with it because it's a salt and not that soluble. But, geez, I've never peed that much in my entire life!What a day yesterday. The insurance is still a mess. I don't want to bore you with details, but the main thing is that, through no fault of my own, I no longer have private insurance. Unfortunately, that insurance came through the generosity of friends who can no longer afford to be generous. I love them for helping me when they could--and, honestly, they have saved my life--but I'm now out in the cold world of Medi-Cal (Medicare), etc.
Too bad Medi-Cal--despite the fact that I filled out all the appropriate forms two weeks ago--can't seem to get this fact (that I don't have primary insurance) into their computers, and the poor pharmacy can't get my coverage confirmed for all my monthly meds.
Still, today I received from Stadtlander's Pharmacy my first shipment of Crixivan--the new, even more potent protease inhibitor. I was thrilled, but it does come with some tough rules. First of all, I have to take it on an empty stomach three times a day--every eight hours, and I can't eat for a full hour after taking it. But I also have to take Saquinavir three times a day on a full stomach.
Now let's see... if I take the Crixivan at 6, 2, and 10, then I'd have to eat (and take the Saquinavir) at 7, 3 and 11. LUNCH AT 3? Dinner at 11? But I suppose I could eat lunch at 12, take a snack at 3 with the Saquinavir, dinner at 7, Crixivan at 10, and eat a snack with the Saquinavir at 11...
Well, I must say that when I ate on the cruise ship, the schedule was very regimented and I think it was good for my system. So, this may not be so bad after all. But I drive around so much, it's not going to be easy to make sure my stomach is totally empty three times a day.
The Pharmacy also included a little form to fill out to report to them if I'm late or if I miss a dose. This means I should carry around a couple of doses in the car with me just in case I get stranded somewhere.
On a lighter note, I've had so many phone calls and e-mails responding to the wonderful article in the L.A. Times. One friend didn't like his use of the term, "dirge." She didn't think there was anything dirge-like in the music. But I think he was just responding viscerally to the hypnotic quality of the more intense songs. Who knows? I'm just proud that he found the stuff worthy of being written about.
My lady friend from last night who got so sick that I had to roll her up to a room in a wheelchair called me today. She thanked me for taking care of her and she said she woke up about 4am. Then she asked me if I needed anything. I told her no, only a laser printer (HA!).
Then last night, I was invited by David Robyn (my songwriting "protege") to view the performance video they shot while I was in Alaska. Well, I'm so happy. The camera loves him and he has a very intense, but unaffected, look on video. Nothing phony or amateurish. So, I was greatly relieved. And the video is cut nicely, too.
Interesting moment: David's video was being cut in an office in the Director's Guild building on Sunset Blvd. I got there before him and went inside to see if he had arrived yet. Well, the whole ground floor was in use for some kind of private function. At least three different, very stern men stopped me and asked me why I was there. I hemmed and hawed and tried to tell them that I was waiting on someone and it was a bit of a hassle.
Finally, David showed up and we did the video thing. On the way out, I looked over at the private party and there was James Carville giving a speech to the assembled crowd. Cool.
Thursday, May 23, 1996
Dizzy, New Med Schedule & Note from TonyBizarrely, I could barely function yesterday. It began when I woke up after a bit of a rough night. I started my new routine of taking the Crixivan on an empty stomach at 6. Then I took a Tylenol 4, an Immodium and a dose of paregoric a half hour later so that I could waylay the thing that's killing me and slow down my system before eating. (I learned to do this on the ship as the diaries will detail once they're all done).But about mid-morning when Jimmy finally got up, I was dizzy and loopy as a idiot. High as a kite. Finally he asked me if I was okay to drive. Well, I don't think someone who's high should make that determination, so I asked him to tell ME if he thought I was too high to drive. He said I was. Geez, and I hadn't even touched the Marinol.
I don't like being high. I used to like it when I was a recreational druggie. But even then I never worked high. For me it was strictly an after-work thing and never more than a joint or so. This is not fun. To make matters worse, my left ear is still stopped up completely and is ringing. I hope Dr. Ellie, who I'll see tomorrow can do something about it. The last thing I need to do is to lose my hearing. I got songs to sing!
Again, the phone was ringing off the hook from people who had read the L.A. Times article. I, of course, have made a billion copies of it and faxed it to the world. It always helps, when putting a project together, to have some "legitimate" press to show people that it's okay for them to like your show. Sometimes people don't trust their own instincts. One word we got back was that a producer who's interested said to his partner, "This show ought to be depressing. But instead it's so uplifting and joyful." I think they are really amazed that we managed to pull off this miracle of diving so deeply into AIDS and still bring off a positive, life-affirming (for the audience) show.
But back to the meds. My new schedule is this:
It doesn't seem like it gives me much time to sleep since I love going to bed around 9 or so, but I guess Jimmy can wake me up for all the meds. It's a hassle, but hopefully it will keep me alive long enough to get my Tony!6am -- Take the Crixivan on an empty stomach. 7am -- Eat something and take the Saquinavir. 8am -- Take the anti-retrovirals 3TC and d4T (and other stuff). 11am -- Eat big lunch. 2pm -- Take the Crixivan after stomach is empty. 3pm -- Eat small snack and take the Saquinavir. 7pm -- Eat dinner and take the 3TC and d4T. 10pm -- Take the Crixivan. 11pm -- Eat small snack and take the Saquinavir. I've put an e-mail from Tony Trupiano -- a radio host in Detroit -- on here which Tony sent to Al Martinez in reaction to the L.A. Times article. Tony sent it and then copied me. It's completely self-serving for me to include it, but I couldn't resist because of how lovely it truly is.
From: TTrupiano@aol.comThere. You see how blessed I am?
Date: Tue, 21 May 1996 19:30:54 -0400
To: al.martinez@latimes.com
Subject: Steve SchalchlinDear Al:
I want to thank you for seeing with your heart as well as with your eyes. Steve has been a friend for the past seven years and I am proud of his every breath. His talents know no bounds and his spirit fills my heart with creativity.
I met Steve as he gently produced a record for a friend of mine a few years back. Although this particular project didn't find its place in the sun Steve was there to breathe life into its skeleton every step of the way. His kind words and nuturing attitude made this project pure joy. It is with every ounce of respect and admiration that I endorse Steve Schalchlin for man of the decade. As a friend, scholar, student, leader and motivator, he exemplifies what being "human" is all about.
I share your view on the urgency to express and explore the many gifts and talents of AIDS victims. Your gift to the world was sharing Steve with the Los Angeles community and all that have been touched by his heart.
I salute you for having the courage to tell of Steve's love and dedication to living.
I am one who believes that he will survive!!!
All the best...
Tony Trupiano,
Detroit, MI
Host of the radio program, Your Health AlternativesFriday, May 24, 1996
Another Quiet DayLast night, Jimmy and I were talking about the appearance he's making today on the George Putman radio show at noon (870 on your AM dial!). Jimmy recently interviewed George for his (Jimmy's) newspaper column and George loved Jim's natural sense of humor and knowledge of show biz, so George invited him to be on the show. In turn, Jimmy admires George's long history in the media -- but his show, for the most part, is a bastion of right wing talk show blow.As we talked last night, Jimmy realized that George is probably not aware of our "lifestyle," so to speak, since they've never talked about personal or political things -- mostly it's been Jimmy interviewing George. I mean, Jimmy and I were never (in our adult lives) "in the closet," but neither are we the kind to put it in everyone's face and make a big deal out of it. What's changed is that I've been in the L.A. Times this week in a big article which names Jimmy as "my life partner." I laughed and said, "Ah ha, I've outed you!." Parenthetically, we also discussed discrimination since it's in the news so much, both agreeing that we've never allowed anyone to discriminate against us because we just bowl them over with our -- ahem -- personalities.
So, Jimmy was wondering out loud if he should engage George in any kind of political talk and challenge him on his retro-extreme right wing ideas. One thing for sure: Jimmy's going to play songs from The Last Session and once he gets into a discussion of the show and reveals how it's about "us," there'll be no hiding from Mr. Putnam. Should be very interesting...
Slept a bit better last night, but I hated trying to stay awake long enough to take the Saquinavir. I was really sleepy by 9:30 but I had to wait til 10 to take the Crixivan and by the time 11 rolled around, when I had to eat again and take the Saquinavir, I was dogtired and it was difficult to fall asleep because I was so weary. I think my body will adjust, but sleep is my favorite activity and it's really difficult to make this sacrifice.
Yesterday morning I worked on the home page and then met with David Robyn later on. His manager, Kathleen Capper, took us out for a very nice lunch and I remembered to carefully balance the medications and do them at the right times.
A nice thing: When I got home, I had a fax from Alan Bergman (of Alan & Marilyn Bergman, the great songwriting team), asking me for a tape of our songs. I remember now that I faxed them a copy of the L.A. Times article when it came out. Alan and Marilyn are really great people. I met them when I worked for NAS and both were on the Board of Directors. Jimmy recently worked with Marilyn on the two ASCAP Award shows, which renewed our acquaintance.
Saturday, May 25, 1996
A Very Tough Day. Dr. Ellie, Parasites, Insurance, Radio Show, Phone Meeting.Yesterday was a day from hell. Dr. Ellie had bad news, our producers had "bad" news, Social Security had bad news -- but the radio show went very well and Jimmy and I spent much time last night talking and making decisions. I'll try to keep it short, but I want to be thorough.First of all I went to see my primary care physician, Dr. Ellie. The news he had for me was that I have tested positive for microsporidia, an intestinal parasite. There is no cure. In fact, there is no treatment protocol. The bare facts are that you cannot gain weight with microsporidia and when you lose some, you lose it forever unless you do something drastic. And we are planning something drastic (the TPN -- intravenous nutritional -- treatments I've described earlier), so all is not lost here. It's just that this is a big mountain to climb. We'll get back some weight, but we won't "cure" the parasites. If there's a positive to this news, it's that at least we have a diagnosis so we know what the problem is.
We discussed the insertion of the PIC line into my arm. It will be a catheter which will run from my elbow area, up a vein and shoulder and near my heart and will stay there until either it gets infected -- something we will try to avoid -- or until we end the treatment (in about a month). If all goes well, I'll pack on some pounds and, in combination with the Crixivan I've been taking, hopefully get very healthy for a while. Our biggest problem is insurance. I have none. And TPN treatments cost -- hold your hat -- from between $400 and $800 per day.
Yes. Per day. (More on this drama later on).
He examined my ear also, and said I definitely have an infection. He said it could be bacterial or viral. So he prescribed Ceftin which takes out most bacterial infections. He said if it's viral, it will clear itself up eventually.
When I got back to my car, I realized I had left my wallet at home with money for the parking (not to mention my driver's license). Lucky I keep change in the car for just such emergencies. I had JUST enough and not a penny more. Then I went to the pharmacy and he told me Medi-Cal still showed me having Blue Cross so he couldn't help me with my prescriptions yet. However, he did give me the antibiotic because he knew it was vital.
When I got home, I ate quickly and took the antibiotic. Then I flipped on the radio to the George Putman show and listened to Jim. Well, he was fantastic. They told show biz stories and laughed and it was a great, great time. Then he told George about The Last Session and they played When You Care on the air. George loved the song so much, he played about half of it again as the show ended. It was very exciting. Oh, and no, Jimmy did not raise the gay issue. There was no time for that since it was at the end of the show. He just described it a show about a songwriter who's dying and who has invited his friends into the studio for one last recording session before he (intends to) commits suicide--and that they convince him that as long as he has one more song in him, he has no right to take his own life.
While waiting for him to come home, I started calling Social Security to see if we could straighten out my insurance problems. There was no one who had an answer and no one who could help me out. They all just said I needed to come down there and maybe try to fix it in person. Well, I couldn't do that because the calls were coming in from HealthLine, the company trying to arrange the treatments.
They said the insertion (which is another $300) could not be done at home and was not covered by insurance, so I'd have to do to an out-patient facility somewhere. They said they'd call Dr. Ellie and try to get him to arrange something. I consulted D.A., my "health advocate." He asked if I could get the treatment delayed until Wednesday so we could discuss the problems we're having with insurance, etc. And so we could be sure that we're not rushing into anything.
Dr. Ellie made the calls and, though I don't know the details, the plan right now is the PICC line insertion will be Tuesday and the first delivery of the TPN will be Wednesday. D.A. also said that only Medicare will pay for something like this. I don't officially start as a Medicare patient until September, so... well, do you see here? I am so utterly confused right now, I feel as if I don't know what the f*** is going on. It's a whirlwind of options, do's and don'ts. I don't know why I'm still sane. (Am I sane?)
Jimmy got home and was very excited about the radio show. We talked a little and he said how much George loved him, loved the music, etc. and we were both very proud of his performance. Then he gave me the bad news.
He reported on the phone meeting he had with our hope-to-be producers, David R. and Carl. He said that they told him the show was a disaster. That the whole book was like a sitcom and that it had to be rewritten and rethought from the ground up. He said that they big problems with the music and that David R. even suggested bringing in another writer to help me rewrite some of the material. Jimmy said we had to go back to square one and start over. He was very unhappy with the call. (This was Jimmy's perception of the call. Keep reading for the "real" story.)
Well, this was just the news I wanted to hear. Microsporidia, insurance, ear infection, weight loss, PICC lines -- all of these were on my mind and now I'm being told the one great light in my life, my music, is also a big mess.
I just collapsed on the chair and put my head in my hands trying to get my bearings. I wasn't on the verge of tears or anything, but I thought to myself, how much more of this can I take in one day? It's just all coming at me too fast. Clearly I felt overwhelmed. Jimmy said something to me -- I don't know -- something about the insurance or the show. I just said to him, "Wait, I can't answer any questions right now. I'm still reeling from this news about the show. I need to absorb it." I felt like a boxer who's been punched in the chest and knocked down to the mat. I needed to back to the corner of the ring and drink some water and wait for the bell to ring on the next round."
(Then I remembered it was Crixivan time, so I took them and went to get water, only to realize I had run out of water -- I only drink distilled water. But I had some Gatorade, so I had that instead. It's probable that the microsporidia came from city water here or somewhere. Who knows...)
Okay. I took a breath and reorganized myself. I always believe that one should not judge things by the initial emotions one feels when one is given bad news. I've gotten through much since this all began. I've been through worse. I reminded myself that every problem has a solution. I just have to work at them one at a time.
The first thing I did was listen to the tape of the conversation between our producers and Jimmy. I don't know how to explain this, but I'll try. Jimmy is not good at taking criticism and analyzing it on the spot. What I mean is, his brain hears it wrong because his emotions cloud his perceptions.
They did not tell us the show did not work. They did not tell us to rework it from the ground up. They did not call it a sitcom and they did not say to bring in a new music writer and rewrite the songs. None of what Jimmy reported was heard correctly. (He is so bad at this sort of thing.)
David R.'s main point was that the show, as we have it -- demos which consist mainly of me and the piano singing whole songs (whereas in the show, the songs will be split up between the various character), a video of people sitting behind lecturns reading scripts, no band arrangements, etc. -- this presentation, he felt, does not adequately show "the show" as Jimmy and I see it in our heads. Much of what will happen visually is stuff that we have to "explain" in terms of sets or characters, their movements and how songs will be staged.
He felt he at least needed recordings which have the singers singing their own parts, which contain all the harmonies we envision, and which contain full band arrangments. And this is because he has to "sell" this show to investors and he knows what they expect to hear -- and what they themselves can "picture" happening on stage.
Let me trail off here to illustrate. In the songwriting biz, which I am intimately aware of, one of the questions we get from new songwriters coming into the biz is, "How good does my demo [demonstration tape of the song] have to be?" In other words, can the demo just be me and the guitar singing in front of a boom box or does it need to sound like it can go on the radio now, with full band and singer, etc.?
The answer is that it depends upon who you play it for. But even if you get a publisher who likes your rough demo, he has to "sell" the song to a variety of people up the food chain before an artist will accept the song. The A&R guys at the record company, the producer, the artist, the manager, and it goes on and on. In the best of all possible worlds, you want your tape to sound as close to the end product as possible so these people don't have to "work" at trying to picture how it will sound.
You are trying to sell something so you want as nice a package as you can afford to give. You cannot count on someone being able to get inside your head and see it or hear it the way you do.
David R. knows his investment people. He also knows that investors, if they are going to put money into something, want to make their money back. They are approached all the time by people who bring in lavish demos and big semi-produced readings. Much of the time, these shows will have been written by famous composers with track records. I mean, if you need a good investment, are you going to put your money into a new show by people you've never heard of, who have a tape that doesn't sound like "it's supposed to," trusting that they will deliver what they say they will, or are you going to invest -- for instance -- in Andrew Lloyd Weber's new show?
David R.'s point was that, sure, we could run up there and have a reading. We can run to New York and have a reading, but in his experience, if we do, we'll get killed. His point is that we get one good shot at impressing these people. And then they go see somebody else who wants money. He felt we needed to go in with barrels loaded and try our best not to leave anything to chance.
Now, about the points Jimmy described in his "bad news synopsis": The sitcom reference was made by David R. (who used to work on "The Golden Girls"). He was talking about their first draft "sit around the table" readings. And that he felt this is where we were scriptwise. He wasn't saying the show was a sitcom. He was talking about where we were in the process.
When he referred to "bringing in a new writer" for the music, what he actually said was that he had problems with only one song, (Faces in the Music) because it was essentially a "patter" song done by one person. Dramatically, he felt that moment needed more. Then he casually suggested that if I didn't have any ideas about changes, perhaps I could talk to Marie Cain or John Bettis (who have helped me out with lyrics on two of the other songs) to think of alternative ways of presenting that moment. He was just making suggestions.
When he mentioned "going back to square one" he was simply telling Jimmy it was time to put the book in front of him and do a fourth draft. Something Jimmy was going to do anyway.
Contrary to Jimmy's perception, both David R. and Carl were excited about the show, loved the show, and still wanted to be involved. They were not telling us it was a disaster. They were giving us professional advice on what they felt they needed in order to raise money for it. And it was such a relief to me. Thank GAWD we taped that conversation because if I only had Jimmy's version of it to go on, I'd be sitting here with a gun to my head. (JUST KIDDING! I frequently speak with exaggeration).
So, it was about 5 p.m. when I finally digested that meeting and I had a more realistic view of the conversation. I needed time to just relax and think; and to get past the stress of a very trying day. I was happy that the show was not dead. And I just wanted to put the medical stuff out of my head. So I took a Marinol and asked Jimmy if he would go out and rent a movie or something so we could get away from it all.
He brought back "Ace Ventura." I said, Perfect. Calgon, take me away...
I fell asleep halfway through the movie -- which was just as wonderfully stupid as I hoped it would be and when I woke up about 10, Jimmy was on the phone with D.R. who had called. D.R.'s phone call basically confirmed the perception that I had of the conversation (as opposed to Jimmy's doomsday interpretation) and they were laughing and having a great time just talking gossip and stuff.
What Jimmy and I realized was that the ball was in our court. We now have a job to do. We have to bring our vision to life. And we think we know how we're going to do it. We can't spend a ton of money on demo tapes and Jimmy can't bear the idea of trying to spell out on paper, things that really should be done with live voices. In fact, he pointed out to D.R. that the next step after the "table reading" was to rewrite while the rehearsals were taking place. Not to go back and rewrite and come back three months later.
We've decided -- and this is only after a half day of thinking about it, so it may change tomorrow -- we've decided to find a little theatre here in L.A. and put the show up "as is." Keep it quiet until we've made the changes we want, sorted out the music, heard the dialog out loud and measured the audience responses. I'm not sure what it will take to accomplish this, but it's really the only way we can think of right now to accomplish the goal we've been assigned.
Then we can take that back to David R. and Carl and say, Now here's the show. This is what we see. Of course, the production values will be small and I doubt we'll use a pit band, but we'll make compromises as we have to. The point is that now the show is back in our hands and it's up to us to carry out our vision. In a way, it's a relief. I mentioned last month my frustration at "waiting for someone to do something" while we twiddled our thumbs.
Now the ball is definitely back in our court.
One last thing, I met a sensational new "kid" over the internet who found my home page. Shawn Decker is 20 years old and has had HIV for 10 years. He's one fabulous human being. Check out his home page and I'll tell you all about him tomorrow.
WHEW!
Sunday, May 26, 1996
A Day Off. Party with Crystal Cruise Guys.We watched the rest of the videos we rented on Friday and then Jim cleaned the house while I went shopping. Then we had Pete, Michael, and Kirk from Crystal Cruise Lines over (along with Stan Freeman and Alan Raeburn) for quiet party where we watched the videos from our cruise.Isn't that nice?
Monday, May 27, 1996
Thinking out loud. Preparing for War.I actually skipped writing something yesterday but that's because I'm going to change the way these pages are dated. On Tuesday, for instance, you will get Monday's diary dated for Monday. In the past, I'd have dated the diary page as Tuesday but actually be telling you about Monday. I forget why I did it that way. From now on, though I'm writing this for reading on Tuesday, it will it will be dated Monday.I also didn't write yesterday because I'm scared. Not scared as in "end of the world" scared. More like scared like a little kid when he's in the doctor's office and he hears the doctor say quietly to the kid's mother, "Injection..." He knows a shot is coming and it's scary.
The PICCline insertion is scheduled for tomorrow, Tuesday. The day you'll be reading this (just to keep our new scheduling in mind...) I'll probably be somewhere in an outpatient facility while someone pokes around in my arm (near my elbow) for a good vein, punctures it, and then slides a catheter up it until it reaches my shoulder and then they'll go a little further, closer to my heart, presumably.
Gross, huh?
[Stern voice: "Now settle down. Lotsa people undergo picc-lines all the time and they don't squeal and howl about it like you're doing. The nurse'll slide that thing in and in 2 seconds, it'll be all over."]Okay. I'm being a baby. I completely and utterly admit it. I know it won't be that bad. (Now, diary reader, I don't usually admit this kind of thing in public. I'm a brave soldier. And frankly, these fears come and go. Most of the time, I realize it ain't gonna be that bad. After all, I have a reputation to maintain. But I promised myself I wouldn't hide my personal thoughts or fears in my diary. So now I've said it.)In fact, I feel better already. I understand that once it's in, the hard part's over. The infusions--I'll probably not even know they're happening.
I had this really weird dream last night, too. The weirdest I've had in a long time. Some dictator had taken over and we knew him and he wanted something from us. But I didn't have any AIDS meds left so I got sicker and started dying. The weird part is that I smiled at the thought that I'd thwart his plans by dying. I was triumphing in death.
Jimmy and I worked on a more theatrical staging and reading of Faces In The Music. It was one of the points, D.R. --the producer who's advising us--had brought up. It had been in our heads but today we really worked out the details and it's really going to be good. Also, it really utilizes all the actors, whereas before it was a solo.
While I'm laid up with the infusions, we are going to go over every song in the show and do this. Jimmy is also starting on the full fourth draft. We think we've had enough time go by since the third draft was performed that we can look at the songs and the book with a fresh eye. We've been discussing the book in detail and trying to answer questions D.R. had in his mind about the set-up and the characters.
It's fun, and I think it will get my mind off the scary stuff.
Speaking of health, I'm actually feeling pretty good. I've been able to get some slight control over the diarrhea and, though I'm not gaining weight, I still have good overall energy. I'm feeling positive and hopeful and upbeat. I know I'm going to get through this and get some weight on me and look like a Young God. By then we'll have our fresh rewrite, we'll have done some casting and also some rhythm tracks, thanks to the generosity of Jim Latham cramming me into his own sessions with live players. (Jim will be writing and recording his own audition themes for TV pilot season.)
As I've told you, my friends have been responsible for every note we've recorded so far. And I keep getting e-mail from them telling me that all I have to do is ask. How can I possibly express my gratitude?
So, we're girded for war. We're undertaking special intervention for me, healthwise, so that I can keep on running. And we're tackling the show with professional guidance and a fresh eye. I hope you enjoy following along, because I enjoy keeping track of it all. If you are the type to pray, say a good one for me. This week promises to be -- uh -- a new adventure.
Tuesday, May 28, 1996
The PICC line insertion. Fixing the insurance. David's Birthday.You know, I really should be put permanently to sleep. After all that angst yesterday about the insertion. Really.They called it for 1pm and told me to be there two hours early. This was at 9:15. So we raced into the showers and drove down to Santa Monica. The only thing worrying me was trying to successfully keep to my eating schedule so I could take my meds at the right time.
I checked into the out-patient surgery unit, answered a few questions, got put into a room, and met the woman who would be doing the procedure. She gave me all the instructions and warnings, and then proceeded to work. I felt the little puncture at the crook of my right arm, winced (ready for the giant catheter to inch its way up my arm), felt a little painful pressure, and suddenly the whole thing was over. Just like that. She taped me up, they took an x-ray to make sure it had made its way properly into my chest and that was that.
After all that bulls**t I put myself through yesterday imagining them installing the pipelines of Alaska, the catheter is this tiny, tiny little piece of plastic and -- well, I guess I've made the point.
Dennis Anderson, my health advocate, then came in and told me the progress on straightening out my insurance. Jimmy will handle most of the "hooking me up and clearing the line each time." And Dennis was working with the insurance agent to get my pharmacy straightened out.
My TPN infusion schedule, by the way, is 12 hours on and 12 hours off. We'll hook me up to a bag at 6pm and take me off at 6am. So at least I'll be able to sleep while most of it is happening. They tell me that except for the times I'm hooked up, I should be pretty mobile.
But the day was not over. I came home only to find that the computers still were not correct and so the pharmacy could not give me my monthly meds, which I am not, under any circumstances, supposed to miss even one dose of. We called a number we were given which sent us to another number where they told us I needed to go back down to the office again. "This is the only place that can straighten this out," I got told.
So, (and by this time I'm not feeling so good--there's this tubing sticking out of my arm and even though the procedure was easy, it's uncomfortable and a little bit painful. Plus, I'm not very strong these days to begin with) I went down to the office, which I discovered from a note on the door, had just moved to Studio City. I wrote down the address and raced over to the new address which sat in a pod mall. It was about 4:15 by now and I needed to beat the 5:00 deadline.
I stood in line and spoke to a woman who promptly told me I was at the wrong place and should call "this" number. I kind of lost my temper and said that I had been calling all the numbers I'd been given and they all told me to come down there! She just said this number would work. I said, Well if it doesn't work and they tell me to come back down here, will you have still a further number for me to call? And how many times should I do this little dance, given that I've done it twice and filled out forms twice?
She didn't answer. She just gave me the paper. So I tried calling from a pay phone at the little mall where the office had been moved just in case I was told to go back. But the buttons on the phone would not activate the touch tone system. So I went back to my car. (My arm was throbbing.) I was really pissed and very hyper by now.
I raced back home--it was now after 4:30--and flew to the phone where I called the 800 number, listened to the automated menu (which did not mention the particular problem I had), tried extension 4 and promptly got a busy signal. I tried it again with extension 5, but it was just a long list of phone numbers. I tried it again but the line was busy. I tried it again with extension 4 and the phone rang. Then a voice said there was one call ahead of me. I waited.
Then the nicest voice I have ever heard in my life came on the line. I told her that I needed my medications the very next day, that the computers were incorrect and that it was holding up my pharmacy. She said, Well, you've called the right place. Immediately she called my insurance agent, who after a little back and forth, gave her the info she needed. Then she called the pharmacy for me to assure them all was okay. And, boom, it was over. Mission accomplished. I looked at the clock. 4:57.
After I proposed to marriage to her, I thanked her so very much and it was all over. I fell right to asleep.
Later that evening, Jimmy asked me if I still wanted to go to our friend David's birthday party. I said I did. He had been in the hospital lately himself with a blood problem and I wanted to see him. So I put on a tie, we picked up Stan Freeman and off we went. At our table was Tim Curry. My first question to him was, "Can you play piano?" (I'm always trying to cast Gideon for our play). He doesn't.
The meal was late in arriving, though, and I was losing steam fast. Then I had an accident sitting there which sent me off to the bathroom to clean up and possibly rescue any dignity I might have left in me. Three times I had to run off and it was making me feel sick overall so I told Jimmy I was losing it and we went home early.
Then I laid down on the couch and went to sleep, only waking up to take my meds and then go to bed.
After all the excitement was over, Jimmy and I suddenly remembered that today was our 11th anniversary. Nice way to spend it, huh? Caring for each other in moments of crisis. I'd say, Yeah. A very nice way to show how much you love each other. I don't tell him enough, but I wouldn't trade him for a million supermodels or a billion millionaires.
Thank you, Jimmy, for loving me through all I've done to you. It brings me back to the lyrics from Going It Alone.
Do you wake at night and worryDear reader, I hope in your lifetime you find just one person who will love you like I am loved. Then you will know true happiness.
Never falling back to sleep
Have I put you through some private kind if hell
I'd have to read your mind to even tellHappy Anniversary, Jimmy.
Wednesday, May 29, 1996
My feed bag.I must keep this short because I have to keep my arm extended. I'm hooked up to a "feed bag" like an old horse and it's wonderful that at last we're tackling the weight loss problem head on. It won't be convenient or easy for the next month (or pretty) but right now fighting for my life is priority number one and this is how we're doing it.Dennis (Health Advocate) just called me from the air while he was flying into Dallas. He felt very guilty that he couldn't be here yesterday. I mean, he is a man who is fighting for the life of his own company and he takes full days out of his life to hold my hand and work on my insurance and health needs. I told him he took over when I was in a crisis I didn't know how to handle and smoothly solved my problems.
I told him I was a big boy and could easily handle the stuff that's happening now and that I had a nurse on call 24 hours a day if I needed one. Plus I have Jimmy.
Anyway, I'll tell you more some other time. My arm is getting stiff. Thanks for all the wonderful e-mails and stuff and the good wishes. I'm going to be fine. More than fine.
Thursday, May 30, 1996
I get mail.I thought you might enjoy a little mail I've gotten recently:From: Artfan2@aol.comI'm now inspiring great Art. He sent me this yesterday:You crack me up and make me cry
You send me low and then sail high
You make we want to move to Kampuchea
And then you crack me up with Diarrhea**What else
Subject: Bonus RoundOn a sadder and more serious note, I am in an e-mail exchange group with other PWAs (People With AIDS) and we've been following the progress of a young man who's lover has been dying. Here's a story in e-mail. Grant has been watching his lover, Raul, die a slow horrible death.The bonus round judges, meeting in secret session, have resolved to announce the following edicts:
Best regards and Truly Best WishesYou are to be blessed with improving health and vitality. All ill health will be alleviated a portion at a time until such time as the ultimate best health is achieved--with every keystroke on any type of keyboard--be it a computer or a poker machine, and everytime you watch cheap potato-couchy type game shows. This has been proven to increase strong vibrant blood cells.. (please see appendix 13bg96654-x) A years supply of Crixisomethan-- now with glistening vibrophoam!!!) Not available in some cities dues to short supply) A new programming language written solely for you to help in writing home pages when you feel like NOT typing a home Page. The new language is to be called:
Steve's Homepage Intermittent Text--hereafter to be called S.H.I.T. (There is a faster version you may download that works much quicker--but is still a bit messy in it's current beta version) Diagraph Interrmittant And Rapid Return Hypertext Exchange Analog (D.I.A.R.R.H.E.A.)Love Karl
From: GrantA little later on, Raul went into the hospital and Grant wrote:To all of you who have commented or responded to me about my present situation with Raul, I am deeply touched and appreciative. Although I do at times feel alone in this miserable state, I know that I have read many more horror stories from the group and mine is just one more to add to the scenario. I'm still all cried out but feeling guilty about it. Now Raul can hardly walk, let alone sit, and now we'll have to be doing the wheelchair thing.
My son called me from Canada last night to see how we were. When I told Raul, he said if he's okay at Christmastime, perhaps he'll be able to cook some good Mexican food for my son. We all know it's not going to happen, but I just told him my son probably wouldn't be visiting us this year.
Grant in San Antonio
Thanks for caring enough to offer some consolation. This weekend has been rough for Raul, and me, but we both know what's happening. I might be able to get him home by the end of the week. Yesterday was our anniversary and the 2 doz roses I took him cheered him up, but the card I selected had words and emotions that made him break down in my arms. Nevertheless, we had a nice day together.And still later:I don't know if any of you have ever felt this way, but there are times when I really feel alone with my thoughts. No amount of sharing with a couple of my friends, or my sister who lives here, or my mom by way of long distance telephone calls, seems to comfort me when I feel that way. It's as if the grief and pain Raul and I feel are not to be shared at times. Only he knows how I feel and vice versa. It's a really strange and eerie feeling I get. Perhaps it's the necessary preparation for the journey ahead, but it still hurts to feel so alone at those moments.
To all my friends on the list, the doc last night told me Raul's body may be able to handle all that's going on for another 2 wks (and no more). I'm in shock and naturally upset. The lymphoma tumors are now in his neck and affecting his swallowing, and the doc suggested a feeding tube. We might try radiation therapy to that area -- Raul wants to still taste his food. Nevertheless, he has to stay in the hospital. At this point, he'd deteriorate quickly if he went home. Raul doesn't know all this, but I know he would rather be home. I don't know what to think or do.And then yesterday, we got this note:All I want to do is hold him in my arms... We've had daily crying sessions lately. I just feel awful, but I know I have to hang in there.
Hello Everyone:And for these lovely, broken-hearted people, they are why I hang on and fight--and why I've written my songs and constructed this diary. AIDS is not a statistic. It's real people sitting in a hospital room holding a dying loved one's hand watching their world crumble before their eyes. It's brave soldiers trying to hang onto every ounce of strength, living as hard and as fast as they can. It's broken hearts and incredible victories. It's life, folks. In all its beauty, in all its glory, in all its tragedy.Our friend Grant called me yesterday afternoon to share with me that his partner Raul passed away at about 6 a.m. on Wednesday morning. He is doing all right except for exhaustion. Grant and Raul's family were there until the very end and he was ready to end the pain and suffering he was experiencing.
Grant is off of work until next Monday and won't have computer access but he asked me to write the group and tell him about Rauls passing. He also wanted me to thank all of you who sent messages of love and support his way when he most needed it! Since Grant couldn't send this message he asked me to share this will all of you and that's the reason I'm doing this.
Thanks,
Geoff
AIDS is not a "thing." It's people. It's you and me. You, because you have chosen to be involved in my life simply by reading this. Me, because I'm living the virus itself. It's all of us. And if "us" don't care, who will?
Friday, May 31, 1996
Getting used to the new routine.One thing about IV nutrition supplements is that they get you peeing all night long. Luckily, I've been given a urinal and I'm supposed to measure how much fluid is passed from this tired body. In other words, I didn't have to unplug the meter that regulates the TPN (total parenteral nutrition) flow in order to guide myself and my little IV tree into the bathroom.It's not easy getting around with this thing. It has a very large bag of white fluid with a tube leading down into an electric flow regulator, which looks like a small square motor box, and then the tube continues down and into my arm. The whole thing is really top-heavy and on our carpet, it's very hard to roll without tipping it over.
So, I got up about 6 a.m. to take my Crixivan on an empty stomach. I also took some immodium. Almost an hour later, though, I was vomiting in the sink since it was too difficult to get to the bathroom in time. But it wasn't too bad cause there was nothing in my stomach at the time. It ate some cookies and took the Invirase and tried to get my day started but I felt very bad and, while doing my e-mail, I started falling asleep.
Then the door buzzer went off.
It was the nurse arriving promptly at 9 a.m. to disconnect me from my feed bag (I love calling this thing a feed bag--like an old horse with a bag of oats hanging from his ears), take a blood sample, record all my fluids, and change the PICC line dressing. That took some work since it was couple days old and was loaded with tape.
The insertion site looks very weird. It's not covered with bandages or anthing, just a clear plastic square stretched over a tiny little white tube that comes directly out of the skin as if it were perfectly normal for it to be that way.
This was the nurse's second visit so we talked more. We showed her the L.A. Times article and told her about our show. After that, she told me that she understood more than I thought. Her husband of 13 years dropped dead at the dinner table back in January (in a restaurant). No warning signs, no nothing. His heart just failed. 37 years old. Three kids.
She told me all her friends were saying, "Well, it's better that it happened all at once." But she told me she didn't think so. No time to say goodbye. No time to plan. All their dreams evaporated in one flash. It sure made me think and maybe feel lucky that I've had time to think of these things and to really have some time where I'm living in the moment and appreciating each day.
She said the incident has certainly changed the way she approaches life. She no longer assumes that she or anyone else can count on tomorrow. That life has to be lived, and our loved ones appreciated, now. Now, while we are awake and alive.
Jimmy has really been on fire getting our show out to producers and theatres. Tomorrow we're going to bring some dubbing equipment home and make as many copies over the weekend as possible. He keeps telling people, "I will not let Steve be another Jonathan Larsen," (the writer of 'Rent" who died just before the opening of his show which had gone on to win a Pulitzer Prize and multiple Tony nominations). He keeps saying, "He's going to live to see this show up and running and he will be there to accept his Tony and Pulitzer."
He's so great.
But my main focus is to save my life. These TPN treatments are a last ditch effort and if they don't work, there are very few options left. But if determination and will to live mean anything at all--well, let's just say there's no shortage of it. No shortage at all.
I haven't done any more Alaska pages. Just need to stabilize first and get used to my new life here all connected up. Then I'll get out my notes and finish them. Right now, it's time for sleep.
END OF PART 4.
© 1996 - 2001 by Steve Schalchlin