A celebration of life!
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May 2000. El Lay. San Francisco..
May 17-20, 2000.
San Francisco, Part 2.
It's a wooden building painted pink and purple giving it a slightly psychedelic air -- not inappropriate for a church. It's on a side street off Castro on a gentle roller coaster of a street full of residential homes huddled shoulder to shoulder like thrillseekers anticipating the next big swerve around the track.
It's San Francisco. And once again, I was graced with six (out of seven) days of almost perfect weather. The sun was bright, the breeze was cool, the nights were chilly and brisk. I had been looking forward to singing at the Metropolitan Community Church because tonight we'd be raising money for a glbt youth shelter.
They have a regular Wednesday night service at the MCC called Taize, which is more like an interactive meditation. (My concert would follow this at 8pm.) The lights are off, candles are lit, everyone is given a lyric sheet and they take their places in the comfortable chairs which are arranged on three sides (Frank Lloyd Wright-style) in the cozy sanctuary.
As I took my seat near my friends Matthew & Darr (and Matthew's loving, incredibly beautiful parents) I felt completely and utterly at home. The choir streamed onto the stage and Jack St. John (who I had met on Sunday) sat at the piano. It all started so easily. Jack has a beautiful voice so as he led the choir through the choruses and meditations, it created a beautiful and quiet space, the perfect prelude to a concert.
After the service concluded, we moved the piano to the center of the stage area. Then Steve Marlowe and Vicki Zalewski joined me on bass and drums respectively. (We had had a short rehearsal just before the Taize service, but essentially they were heroically working off having had the CD for only two days.)
I decided to just start with a bang and given the fact that this was a church for glbt people, I knew they'd totally get "At Least I Know What's Killing Me." Plus it rocks. So I gave the signal to Steve and Vicki and we exploded out of the gate.
I look like a complete idiot but if his ain't rockin' out, what is? Humh?
(Bev was there to catch most of it with her digital camera.)
It was THRILLING to be playing with a bassist and drummer again. I don't even REMEMBER the last time. So I was in pig heaven, throwing cues and kickin' ass. Also, I was wearing a new eyepatch that my darling (friend) Ken had made for me. Do leather daddies wear ties?
I plowed through my set like a man on fire because sometimes the subject of AIDS can be so depressing, NOBODY wants to hear about it. Besides, I wasn't there to sing about death. I was there to sing about LIFE. I felt exhilarated, unleashed and very thankful that I could be there under that spotlight singing and playing my guts out.
Finally it came offering time and I made my bid by making the point Rev. Jim Mitulsky had made for me earlier in the week: that glbt kids get thrown out of their homes by the scores, feeling hated and scorned. So many of them make their way to San Francisco thinking the people in THIS city at LEAST would accept them. But even in the Pink Jerusalem there is a large faction of NIMBY (Not In My Backyard) people who don't want any kind of homeless, even desparate glbt kids in their neighborhoods.
So the church is fighting hard to open its youth shelter. As a gesture of good faith, I even asked Jason at Youth Guardian Services if we could direct a portion of the CD sales for that night to the shelter. Teens helping teens! (He enthusiastically said, "yes.").
Then I hauled out the big guns. I sang Gabi's Song and William's Song and then asked choir members in the audience to join me for "When You Care" while we passed the plate. Between the CD sales and the offering we raised almost $500! I was on cloud nine after hearing that.
Anyway, as you can see from the photos, I pretty much had the time of my life. And I met a remarkable group of very dedicated and warm human beings. My only question to them was, "When can I come back?"May 21-24, 2000.
The Making of The Last Session.On Monday night, upstairs at the Coronet Theatre in Los Angeles, Jimmy and I were featured in a seminar for a group called Broadway on Sunset. The subject was "The Making of The Last Session."
All this was happening during a time when our landlord decided to put new carpeting in our apartment. Which meant that we spent the entire day taking books out of shelves, taking everything that laid on anything off and putting these items into bags and putting them on the small landings out of the way of the carpet.
It's like moving. I was thinking it would be no big deal. We move a few things, etc. But instead it turned into a massive ordeal that left Jimmy and me so tired we could barely move. Suddenly it was time to drive over the hill for the workshop.
When we arrived, the first thing we did was move the piano from off stage to on stage (with the help of a hunky assistant named Doton -- I have no idea how to spell his name). But he looked like a young Antonia Banderas and between him, Jimmy and me we put the piano onto the stage just in time for the stage manager to come screaming over to us that we had ruined the stage.
I was now sitting behind the upright. Doton was standing so that he could see my face and while this guy was screaming about how we'd ruined the (10 cent) metal edge of the stage, I was looking at Doton making faces. I was too tired to really care about this guy's little fiefdom and there was no way we weren't going to NOT have the piano on stage.
After the commotion, I went outside and ran right into three Sessionauts -- Lori, Karen and Julie -- and "Saint" Alice Harkens our stage manager from Laguna. We did massive hugs and kisses, then moved inside for the seminar which would be moderated by Libbe HaLevy whom Jimmy and I had met years earlier at National Academy of Songwriters.
Earlier in the day Jimmy was anxious about this because he didn't know what we were going to do. He felt he had nothing to say. But once he sat down and the lights came on, he was chattering like a kid with A.D.D. Two hours went by so fast, we could hardly believe it when they said time was up.
May 25, 2000.
Then we went home to an absolutely DESTROYED house and spent a good part of the night continuing to box things up and get ready for the carpet guys who showed up on Tuesday, but needed Wednesday also cuz of how hard it is to put carpet on a spiral staircase.
Meanwhile, we put the cats in the bathroom. When we went to retrieve them, they were curled up together in each others' arms in the linen closet. Now comes the putting it all back together part. Oy.
Test Results/Health Update.
Phone rang yesterday. It was Dr. Peter's office. The results of the viral load test were in and once again, the virus remains undetectable in my blood. *whew* We do these tests about every three or four months.May 26 - June 3, 2000.
Good news on the blood sugar front, too. I lost my blood sugar testing kit -- left it in Chicago, I think -- so I've been flying blind. A couple of weeks ago, I tested SKY high -- like over 500 -- in his office so we switched me back OFF the Avandia and back onto the Glynase, but he hinted it might be time to be thinking about daily insulin injections. (NOOOOO!!)
Then, day before yesterday, when the carpet guys were here about 11am, I started feeling really hot, my heart started to palpitate and my body started to shake. Since the carpet guys were not cute, I knew it had to be something else. Could it be? Yes! Suddenly I realized I was having a hypoglycemic attack! My blood sugar had dipped TOO LOW!
So I ran to the kitchen, opened one of Jimmy's Cokes, downed about half of it and 10 minutes later was feeling normal again. Then yesterday it happened AGAIN! (This time I opted for chocolate fudge, no fool I).
So that tells me (at least) that the blood sugar levels are coming down again. I'll be getting a new testing kit this week to make sure. Here's my new breakfast routine:
Non-fat cottage cheese with fruit, usually an orange, followed by oatmeal (with bananas, cinnamon and the blue sugar substitute) followed by Glucophage and Glynase -- so now I just have to remember to eat a mid-morning snack to keep from doing the hypo dance again.
My eye, meanwhile, seems lost forever. I asked my doctor if irradiating my thyroid would make it get better but he said the eye problem, though SOMEHOW related to the Graves' Disease, is not DIRECTLY affected by how we treat the thyroid so all we can do is watch and wait.
I'll say this, though, I'm over being stressed out about it. I've accepted the fact that I might never have a good right eye again. And now that I've accepted this as a fact in my life, I feel much more at peace with the whole thing.
Besides, that eyepatch looking is stylin'!
A Cranky Week.
I've been cranky all week and I think the only reason I haven't updated the diary was that I was just too cranky to bother. I get like that sometimes. I hope the reader will forgive. But this is going to be quick anyway given that I've basically just been home.June 4 - 8, 2000.
I got my new blood sugar testing kit but spent the first day grumbing cuz I couldn't get it to work right. "THIS THANG IS BROKE!!!"
I was pissin' and moanin' and complainin' -- prolly just rebelling against having to start poking holes in my fingers on a regular basis again. But Jimmy calmed me down, opened the instruction manual and slowly we figured out that I wasn't pressing the tester strip all the way in.
Very embarrassing considering how much grousing I did over it. Anyway, it's all good news. My blood sugar has tested low or just above normal each time. We were right to change back to Glynase. Plus, I'm really being good on my sugar-free, low-fat diet.
And I gotta say, I don't really miss the sugar or the high fat stuff very much. It's quite a challenge, counting fat content and looking for hidden sugar; it's in everything!
I also began hitting the piano again and found a new song trying to work its way out. "Howdy, song!" I also am looking forward to singing in North Hollywood on June 23rd for the NoHo Arts Festival and then over in Hollywood in July.
Tests, Results & Surprises.
I wasn't allowed to eat breakfast Monday morning when I tried to drive over a backed-up Laurel Canyon to get to Dr. Peter's. It would be our first time to really test my blood fat / cholesterol since adding "fat-free" to my "sugar-free" diet. (What next? Food-free?)June 9-15, 2000.
Halfway up Laurel Canyon I realized I left my injection med back at the apartment. So I did a 180. (Our side was jammed. The oncoming lane had zero traffic.) After picking up the vial, took Ventura Blvd. into Hollywood, down La Brea, left to Colfax, down to the Santa Monica Fwy. to pick up another med at Bob's Pharmacy and then back up to Dr. Peter's office. All the while, I'm watching the clock. I hate to be late for anything.
But all was well. 15 minutes late. I was glad that Terri took my blood. I love Terri. She's really good and we laugh a lot. My poor veins are prominent but scarred from all the injections and I.V.'s I've had over the years. (A less skilled nurse can very easily poke into the vein and come up dry, at which point they start moving the needle around while it's still up in there. Very painful.) But I digress.
So we did a blood draw, BP and shots. Then a few pokes by the good doctor who runs the list: Yes, I still have neuropathy in my toes; no, I don't have any new complaints; no, my eye is not improving and seems to be a little worse still. (I tell him this in my new "resigned to live with one eye but still hoping it will improve" voice. He can tell what a big phony I am. So he gave me a little hug.)
Afterwards, I went to Mani's, a sugar-free restaurant on Fairfax Ave. cuz it was already past noon, I hadn't eaten anything yet and I was STARVIN'. The only reading material I had in my car -- cuz I have to read something when I'm sitting alone eating -- was POZ Magazine. I was also wearing one of the new AIDS Walk NY Last Session t-shirts (made by TLS fan Anthony Ginexi) with a little red ribbon on the front.
Basically, I was Mr. AIDS. I hadn't planned it but that's what I was.
I sat inside, facing the window with my magazine and about halfway through my meal, two very friendly guys -- African American, one with tight short bleached out hair, the other very imposing physically -- sat right next to me. (Our tables were actually 4-tops turned into 2-tops.)
After a few minutes, the first one, who I guess is in his 20s, said, "Are you Steve Schalchlin, composer of The Last Session?"
Startled and surprised, I looked up from my magazine and sputtered, "Yes."
"I'm Kye. We met at..."
"YES!," I said in a high pitch Steve Scream. "From RENT. You were in the cast of RENT and you came to see TLS! I had you sign our celebrity wall."
He excitedly then began telling his friend (Patrick) about TLS but of course you CAN'T describe TLS and I could tell Patrick was appreciating the energy but totally confounded. So we had a great little visit, took each other's numbers -- Patrick is a composer and orchestrator -- and by the time I drove home (with sugarless carrot cake in tow), I was very happy.
Funny how a little thing like that can raise your spirits on blood test day. Oh, the test results, which came on Wednesday, showed a small overall improvement but we were still in dangerous territory.
The t-cell count was 450, down a bit from 490 but still very acceptable. But the t-cell percentage went up from 16% to 18% (my lowest was 2%, "normal" is in the 30s).
My lipids (cholesterol) went down also from 341 to 310. (Thank you, fat-free cottage cheese, fruit and oatmeal breakfast). And my triglycerides went from 1026 to 966. Now that last number shouldn't be higher than 199 so that's not a good reading. (I'm not exactly sure what a triglyceride is but it's got something to do with fatty sugar..?).
I don't know. Shawn Decker just announced that he was going to stop taking any meds for a little while cuz of diarrhea and general Friendly Fire Effect (even though the meds brought him back from the brink only this past year). He's going to try a Strategic Therapy Interruption, where you go off the meds until the virus becomes detectable in the blood again.
It's all so overwhelming, these tests. I remember the day Dr. Peter said, "I refuse to save you from AIDS only to lose you to a heart attack." I guess this means I'm going to have to start exercising again. (I've been slacking off cuz I hate it so much. Yes, I know. I'm a big baby. So sue me.)
How do I feel? Actually, pretty good. Barefoot Ron has moved to L.A., I have some fun concerts coming up and I'm still here. Who could complain?
An Overdose & The Mailbag.
It was so tempting. Too tempting. Sugarfree chocolate on the shelves of our grocery store at long last! When we got home, I tore open the bag and ate one. And then another. And another. And maybe two more. The next morning, Sunday, I ate the few remaining pieces. About an hour later, my stomach started to hurt. It was also bloated like crazy. Then it got worse and REALLY started to hurt.June 16-20, 2000.
Of course, everything goes through my mind when I get sick: I'm dying; I caught some new virus; I'm having a bad reaction to my drugs, etc. All Sunday I just laid on the couch or in the bed and moaned and groaned.
At the El Portal's barbeque Jimmy described my condition to Jeremiah who said, "Sorbitol." We looked on the bag of chocolate and sure enough, "Sorbitol" was the sugar substitute. It took all day Monday before I was back to any semblance of normality. Ugh. Meanwhile, I got some cool mail:
Dear SteveI love it when students use my songs in their schoolwork. Makes me feel like a member of NSYNC (as if they were half as cute as I am). I also love it when people don't get sick of them. :-)
I emailed you several months ago asking how I could get the sheet music of The Last Session for my independent music project. I decided to tell some of the stories behind the songs from the show and give a short summary of the show.
Those who came to watch the project loved it and keep asking me if they can see the show anywhere. It was such a wonderful feeling to be surrounded by the music so much for so many weeks...I didn't get sick of it...I only grew to love it more!
Thank you again for giving me the opportunity to work with such wonderful music. My teacher really loved the whole thing :) Take care.
New reader LIBBY also wrote me in response to a diary posted a few days ago:
Dear Steve,God bless you in your struggle, Libby. One of the main missions I have in life is exactly the sort of patient/caregiver communications you describe in your note. So keep watching Bonus Round. I have some surprises coming.
I read your lastest entry in the diary today. I can relate to the search for a vein! Why is it that some nurses don't seem to have a clue that when they turn you into the "pin cushion", it HURTS!!! I can't tell you the number of nurses that I have had to give "needle lessons" to. ... I wish patients could give a seminar to the medical world to make them understand just EXACTLY how it feels to be on the receiving end. My favorite phrase to an overzealous nurse is "I'm just the patient. What do I know?" It is amazing the ones who stop and do a double-take because they can't believe I just said that. BUT it does make them stop and do things in a much better way! You will forgive my sarcasm but it has helped me to survive the last 5 years. I will try to write more often but sometimes I get so tired! Cancer can just be SO much fun.............Take care, Libby
I cannot figure out for the life of me what I ate this past weekend that screwed me up so bad but this is two weekends in a row. I was SO SICK I didn't even have the energy to log onto the net. And for me, that's sick.June 24-26, 2000.
It started late Saturday afternoon when my stomach began to swell a little, then it became massive amounts of diarrhea that lasted all Sunday. Ugh. As of Monday morning, though, I was back to normal if feeling a little wobbly.
Last week, as a kind of physical therapy, I began volunteering a few hours a day down at the non-profit El Portal Theatre where Jimmy works. I actually enjoy sitting around a table stuffing envelopes and affixing stamps -- and just talking. You really get to know people doing "busy work."
Plus, I get to spy on Jimmy to see if he's actually working or just down there goofing off with all the cute actors.
Uh, he's working.
In fact, I've never seen Jimmy work SO HARD for SO MANY HOURS doing SO MANY things. Everyone down there works their asses off. Also, out in front of the El Portal, they have a beautiful art deco ticket booth -- one of only four that were made -- which they finally uncovered and repainted. I helped David Mingrino (who is another hard worker) clean it out and wipe it down.
I also had a great rehearsal with Bobby Cox this past Saturday morning (before I started feeling sick). I love the way he plays guitar and I think we make a really good team. Anyway, I am going back to bed.
Singing at the El Portal.
Oh the poor little old ladies and gents who got tickets to the Steve Show without realizing what they were going to hear. All day long at the festival there were 28 different theatres in the NoHo district doing free shows. Mine was first at the El Portal and in the small 99 seat space, I'd say there were about 90 people who eventually showed up.
But from the first note of "Save Me A Seat" I knew we were in trouble. I could see some of them beginning to whisper and I could hear their bags rattling. On the show description all it said was that I would be singing "life-affirming" songs from The Last Session, a musical. I have a feeling they thought they were in for cute little Gershwin-sound or Cole Porter sounding stuff.
They didn't know they were walking into DEATH. BWAHAHAHA.
But it was fun. The Circle Theatre inside the El Portal is arranged in a circle. Jimmy came out and introduced us -- nothing about "AIDS" was mentioned. Then we started into the program and the bags started to rattle.
We did "Somebody's Friend" second and that got the whispers and the nervous glances going. But it was The Group that finally did them in. About 10 or 15 got up and left. But then after they thankfully left, it was like the rest of us all relaxed and began to enjoy ourselves.
Barefoot Ron was there with a description:
Jimmy introduced Steve and Bobby Cox, and Steve started with (big surprise) "Save Me a Seat". Steve and Bobby were fantastic, and I loved their arrangements of the songs from TLS. There were a number of people there who just didn't get it. I don't think they got the whole idea of theatre or live performance, because they spent their time fiddling with their bags and hats and stuff and talking to one another. It was like they weren't there to hear the performance as much as just to get inside out of the heat
of the day.
Steve's show was challenging, and perhaps a little too challenging for the audience. After about three songs, a large number, maybe 1/3 of the audience, just up and left between songs. I give them credit for not leaving in the middle of a song, but it was strange to see such a mass exodus from the show.
I thought the show was great! Steve was perhaps just a little hoarse or restrained, but his voice was light and beautiful. Bobby's guitar complimented the sound wonderfully. Bobby Cox, in addition to being drop-dead gorgeous, has incredible stage presence and humility. He and Steve make a great team onstage.
Steve and Bobby did a fine job of "Going It Alone", with Steve singing the lead, and Bobby doing the harmony. It was the only time I've heard Bobby sing, and he has a lovely country tenor that complimented Steve's lead very
well. I'd love to hear Bobby sing solo sometime. I had no idea what a wonderful voice he has. Steve ended the show by singing "Connected" accompanied only by Bobby's guitar. He stepped away from the piano and sang with mic in hand. He couldn't wrestle himself from behind the piano at first, but he stepped ahead of it about midway during the song, and I thought it was glorious. Steve ain't quite Judy Garland, but I think he could pull it off, if mics still had long, black cords.
In the Sunday LA Times, there was a story that read,
"Ruth Bobeczko flew in from New Zealand to see one of almost 100 free performances that are part of the two-day festival, produced by the Universal City-North Hollywood Chamber of Commerce.Jimmy and I also took the new subway [*trumpets blare*] that extends into North Hollywood. We took it down to Hollywood and Vine where the station's ceiling is made of film reels. It opens right onto the Pantages Theatre (where The Lion King will open soon).
A flight attendant for United Airlines, she napped for a couple hours at LAX, then headed to El Portal, the recently renovated former movie palace on Lankershim Boulevard, to see "Living in the Bonus Round," a one-man show starring actor-songwriter Steve Schalchlin.
"The dialogue was hysterical; the music was provocative," Bobeczko said of Schalchlin's autobiographical play that deals with his being HIV-positive. "It was an emotional roller coaster."
El Portal is one of 28 theaters in NoHo, an area that had only two theaters a decade ago.
Peter Greene, publisher of Evening Out, a bimonthly publication that serves local theaters, said of NoHo: "We have the largest concentration of Equity-waiver theaters in the country today, more than Greenwich Village."
Schalchlin, 46, said he titled his play "Living in the Bonus Round" because that's how he sees this period of his life. "The bonus round [of a quiz show] is when time speeds up and the prizes are better." His play, he said, "is about surviving illness, surviving hardship."
So I was bad. I ate funnel cakes with powdered sugar but you don't get funnel cakes offered to you everyday, now do you? (They're basically just dough squirted onto hot oil and allowed to fry). We hung out in front of the El Portal all day Saturday and much of Sunday while hundreds of thousands of tourists and sightseers checked out the booths, the musicians and the theatres.
It was great fun. And Monday I was back at the piano writing new songs and getting ready for our quickie trip to New York on Sunday. (We hope to see Bob Stillman in Dirty Blonde.) Party on!
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© 2000 by Steve Schalchlin.
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