Volume 2 Book 3 Part 4 of
Living In The Bonus Round
by Steve Schalchlin.

Steve visits his 92 year old grandmother

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[ Part 1 | Part 2 | Part 3 ] [ Part 4 ] [ Part 5 ]

November 1999. Los Angeles, New Orleans, Back Home.

[Diary Index ]

Friday-Saturday, December 3-4, 1999.
A Rich Life.
Yesterday I had gotten an email from Jimmy telling me to call Enterprise Rent-A-Car in Pennsylvania because the car I dropped off at the airport a couple weeks ago -- the one I used to drive around the state --was never found. Immediately I called John in Williamsport where the car had been rented. I emphatically told him that I had left the car at the airport.

I don't even remember if I wrote about it in this diary but on that day, because I had driven to the airport the day before, I knew Enterprise didn't have an office at the airport so I had called the 800 number. They switched me to a local Enterprise and I was told to drop off the car at a place called "Tech Aviation" which was near the terminal. The guy said all I needed to do was park the car in the lot and leave the keys. But I actually did more than that.

That morning I had driven the wrong way getting to the airport and by the time I discovered my mistake, turned around and finally arrived, I had about one minute to go, so I parked in the Tech Aviation parking lot, ran breathlessly into the office, threw the keys down (where I saw and was acknowledged by one woman and two men), asked them if they needed anything else -- they said no -- and then a guy drove me to the terminal in his van. I barely made the plane.

That was then. This morning my flight from Indiana left too early to do my follow-up call so the plan was for me to call John back after arriving in Chicago and see what the next step was.

I arrived in Chicago and went to the TV monitor to find out which gate my plane to El Lay would be leaving from. Instead it said FLIGHT CANCELLED. Oh gawd. It's going to be one of those days, I thought. No, it's already one of those days.

Looking at the schedule, though, I saw that there was another flight leaving an hour later so I ran, literally, to the United Service desk to see if I could get on the later plane. I was dreading the thought of having to stand in line and dreading even more the thought of having to spend a whole day there. I was tired.

It's funny but since Indiana U. was the last date of my college tour -- I have one more appearance at a medical conference next week, five days with my family and then home for a good long time -- I was in post partem depression. This had been the longest and most emotionally satisfying tour of my entire life. And after the great climax last night with that magnificent piano, intelligent and warm audience, the AIDS Quilt, and people who felt like family, I was already in mourning.

Show business is weird. You form these families -- sometimes companies of actors, sometimes one crew working together one night -- which resonate deeply and joyfully and then suddenly it just ends. As if your parents suddenly got divorced without having a fight.

I just kept wanting to be back on that stage but instead I was standing in line hoping to just get home before a reputed snowfront moved in. Behind me this guy was just talking on and on about how we would be stuck overnight and how all the flights would be oversold and how bad it was, etc. I just wanted him to shut up.

When it was my turn I practically ran up to the counter and the lady behind made a couple of taps and immediately changed me to the flight I wanted. I was SO HAPPY. Okay, one crisis down...

I went to the phones and called them. John was not in. Gone to lunch. I just please do not want to have to buy them a new car. What could have happened? He said yesterday that they drove all around the airport and didn't find the car -- and that it wasn't at Tech Aviation either.

Well, I did park it at Tech Aviation and I did give them the keys! I absolutely did!

After hanging up the phone I went to a book store and got a New Yorker magazine. The Chinese lady ahead of me had a huge stack of souvenirs and knick knacks. She was on her way out when the harried clerk, a young girl, suddenly realized she had given the wrong change and had to start all over again punching in the order without benefit of scanner.

Finally, some guy behind me got very angry and he impatiently went to the head of the line, slammed down his purchase and stormed off. The poor girl, seeing the angry people around her, only became more frazzled. I felt SO SORRY for her. I know I could have been impatient and annoyed, too, but instead I just mentally sailed back to the night before where I was sitting at an 11' Steinway, singing the songs that give me life, reliving the incredible standing ovation -- and I truly realized at that moment what a rich life I am living.

Sunday-Monday, December 5-6, 1999.
Finding Dickie.
On Sunday I went looking for Dickie. I knew he was in the hospital and that he and Gail were not happy with his treatment lately. It's like that movie "The Hospital" where the doctors and the nurses conspire to do all the wrong things to kill the patients off. This came a few days ago:
i don't have any real good news.  a couple of days ago the doctors decided the problem must be a cyst in dickie's pancreas that was collecting and pushing E-Coli out into his bloodstream. a subsequent MRI found no cysts (altho: RANT HERE: they brought him dinner right at the time he was scheduled to have the MRI, so he asked if it was really okay for him to eat right before the MRI.  FOUR nurses said yes.)  During the MRI the technicians said "geez! did you EAT right before this or something? we're having a really had time getting clear images".  ARGH!  so the MRI took WAY too long and who knows what the heck actually showed up, it was all blurry.

the past nite(s) he's been on oxygen and they've been giving him transfusions because he bleeds too long (won't stop bleeding for a long time once it starts)

since they couldn't see any cysts on the MRI, the doctors have decided to do an ERCP (endoscopiccholangiopancreatography) this morning based on the new WAG that his liver is producing "sludge" that is too thick and is getting stuck in his pancreas. this morning they plan to do two transfusions and then do the ERCP. even the *surgeon* doesn't want to do it, thinks the doctors are just guessing...

And she was right. They found nothing. But things keep happening, like they took him off his liquid drip until some night nurse saw the bag there and just decided to hook him up again cuz it was there. And then they wanted him to walk around more but they hadn't fed him in four days. And then the doctor who forgot to put a medication on his chart...

Anyway, they took a bunch more tests and then went on vacation. The assistant doctor told him he could go home so they threw his stuff into a bag and got him home. When I arrived at the hospital to visit him he was already gone. So I went to his house and found him tucked into a pallet on the floor of his den all cozy and comfy.

Tomorrow, Tuesday, I'm going to spend the day looking after him at his place while Gail goes to work. Hope he doesn't mind if I pound on his piano. Musical therapy!

Then I fly off to New Orleans for a medical conference sponsored by the Institute for Healthcare Improvement. I'll be singing about Friendly Fire and talking about the dangers of being a patient. A recent study showed that more people died of bad hospital than AIDS or cancer. That's not a good sign. Then home with my family for five days!

December 7-12, 1999.
New Orleans.
"My mother is a nurse," I tell audiences. "I've been around hospitals and doctors all my life. So why was I so scared to get tested? And after testing positive, why was I too scared to get treatment? This fear, of course, is what put me in the hospital the first place unnecessarily."

I was sitting at a gorgeous, black Yamaha baby grand in a huge ballroom singing for a convention of caregivers, health care administrators, doctors, nurses and others. The gathering was being sponsored by the Institute for Healthcare Improvement (www.ihi.org).

It featured leaders from all over the country who are working to improve the healthcare strategies in their respective institutions. It was also the first time I did my program for the President and CEO, Don Berwick. So I was concerned about making a good impression.

I shouldn't have worried. The stage was set kind of high in the ballroom and they had what seemed like dozens of lights pointed at me. So I couldn't really see them out there in the dark. I just kinda started doing my thing and hoping they would "get it."

Afterwards, I received an incredible standing ovation and after exiting the stage, Don Berwick came up to me with his eyes full of tears, saying that my program had completely fit in with what they were trying to accomplish. I think they're going to invite me back to their next meeting in San Francisco next year.

After my program he invited me to attend a meeting with the Board of Directors of a major hospital where they discussed their distress over the newest finding of how many people die of medical mistakes -- and what procedures they could put into place to cut down on this.

I, of course, immediately started thinking about Dickie who was, only last week, the victim of bad nursing. I was impressed with the way the Board talked about overriding their lawyer's concerns and setting up a way to publicly talk about their own mistakes as an example of how to implement greater controls. It was quite amazing to hear them talk so compassionately about about their patients.

Speaking of Dickie, here's the latest from Gail:

well, what to say...

as of 5am this morning, dickie's back in the hospital with the same symptoms as before - severe pain, vomiting, dehydration, etc.. he can't keep anything down.  what he eats one day and is 'okay', the next day the same thing will make him severely ill and we just can't figure out *what* to eat, there's no pattern to this.

we were in the ER all night - on a bed in the hall (both the ER and the hospital were completely full (no room at the inn)).

he's back on the IV, compazine and demerol and they did another ultrasound this morning to see if they can see anything this time. i haven't talked to his doctor yet, i came home after they admitted him and crashed, but i've talked to him and he's sleeping comfortably.

i'll keep you posted, keep the prayers coming.


December 13-18, 1999.
Parents, Grandparents, Godparents & Dickie.
First the big news: Jimmy and I have become parents again. No, we don't have a baby or a cat. We have officially accepted the position of Godparents of Shawn Decker, a request from him him forwarded through his mom. Longtime readers know I found and fell in love with Shawn three years ago when I found his website which is now officially called www.positoid.com.

His grateful email contained the priceless quote: "If I were old and gay, I'd be you." How can you not want to love someone who would say that? He also sent a newspaper clipping of him and Gwenn, his beautiful girlfriend.

It was wonderful going home to be with my parents, my grandma and my brother "dos" and his wife, Sharon. Dos and I were raised like twin brothers, meaning we fought like banshees growing up. To this day I don't know how my poor mom and dad survived the four boys, Piglet and Moose -- who officially becomes a lawyer this month -- rounding out the zoo.

I didn't really do that much. After the exhausting tour I think I did exactly what I was supposed to do, sit in daddy's chair and sleep. We also did a little shopping plus I got to spend a little time with my grandmother who is in her 90s now. She's lost a great deal of her sight and hearing but she still gets up every single day, put on a nice dress, her "pearls" and her make-up, and attempts to not merely fade away.

She's truly the matriarch in our family and I loved having some time with her, too. But mostly I enjoyed just being with my mom and dad. It has been at least a few years. My dad reminded me, "You know the last time we saw you we didn't think we'd ever see you alive again."

I did remember that. That was the trip to Vegas where we stopped on the side of the road and I was vomiting red -- which turned out to be red kool-aid.

Back home with Jimmy and the cats, though, is where I belong. The lovely Lori -- God bless her -- picked me up at the airport. Jimmy is now working as an Associate Producer at the El Portal Theatre on their new production of "Over The River And Through The Woods" with Joseph Campanella and Carol Lawrence. So he's being very busy.

We did take a trip to the hospital to see Dickie, though. As Jimmy said, "I've never seen anyone quite that color." Through this liver failure, Dickie has turned absolutely yellow. But Dickie joked, "I'm brighter than a bowling shirt!"

He told us, "I'm caught in a spiral. They don't really know what's wrong with me so I go two days feeling a little better. Then I go two days feeling worse. Then I get really sick and they have to pump liquid out of me. They think it's an infection or massive irritation in the upper right hand part of my intestines but they don't know. So I got three doctors all ordering different tests which take place all day long."

Jimmy said, "He looked so little, lying there in that bed."

I've also heard that Ghost is back in the hospital but I haven't heard from him. I'll have to scope him out and find him but since Jimmy is using the car more these days, I have less car time.

Meanwhile, I totally vegged out the few days I've been back in town. But Monday I will start back on my weight lifting regimen. Oh, speaking of health, I saw my doctor and it looks like I've gained about 10 pounds since we diagnosed the Graves' Disease. That's good news! Now I have to train it to look like muscle weight. :-)

Anyway, on the 23rd we're having an Open House Party for all our friends and fans. We sent out invitations to the TLS list. Who knows WHO will show up. But we always manage to have the best parties. And Bob Cox will bring his guitar... It'll be fun. Gail and Dickie and Ghost, we're thinking about you!

Monday, December 19-31, 1999.
Slouching Towards the Millennium.
Here's what I love about Hollywood and the El Lay Territory: It won't be upstaged. As the millennium celebrations were happening around the world -- the fantastic Syndey celebration, Tokyo, Hong Kong, Paris (which turned the Eiffel Tower into an incredible pinwheel), London (which, on TV looked like it was going up in smoke), New York with a million people in Times Square...

Hollywood took one look at that and went, "I think I'll stay in."

No one in this town went anywhere. The big city celebrations weren't even half full, much less teeming with people, leaving our airheaded "news anchors" with absolutely nothing to say except, "It's really exciting, isn't it?" while nothing was going on behind them.

The best remarks came from Jay Leno who said the big light show they put up behind and around the HOLLYWOOD sign made it look like the entrance to a strip club.

Jimmy and I stayed in watching the world have a party and then we went to sleep. When we woke up the computers still worked, the car still ran, the cats still wanted food and the newspaper got delivered. Happy Millennium!

By the way, I'm not going to start a new book in this diary just because the world has turned a new page. It doesn't feel like the end of a book to me so this book, "Gullible's Travels" will continue on until I feel some kind of closure -- or until Jimmy thinks up a snappy new title. But I have been doing a lot of thinking.

I woke up this morning thinking about my concert this past month in front of a conference sponsored by the Institute for Healthcare Improvement. I also remembered crying in front of a class of future nurses in a College in Pennsylvania.

I thought about Dickie's nurse seeing the half bag of solution and just hooking it up to his arm because it was there -- even though the doctor had intentionally taken him off of it. And that reminded me of the news report which has rocked the medical community: that more people die of mistakes in hospitals than of cancer or AIDS.

But I also remembered one of my nurses, the gentle one who sat and talked with me during the nights when I was so sick, the Social Worker who helped me get through minefield of medical assistance, Dennis my friend who became a patient advocate for me, reviewing my charts and my doctors' decisions.

And out of all this, I had a little epiphany. I think it's my calling -- for the immediate future, anyway -- to be a kind of musical patient advocate. To seek out more of these medical gatherings, to get myself into more medical universities, singing for future doctors and nurses -- reminding them why they are there in the first place.

Not that I intend to stop singing AIDS education programs for university and high school students. Not that I don't intend to continue working toward bridging the vast religious divides and supporting groups like Youth Guardian Services or PFLAG.

But when I'm singing for caregivers, there's a special connection that I feel -- that we both feel -- and I cannot put it into words. So this new year if there's been a change for me, it's just one of feeling like I better understand what my role in the big picture is.

By the way, they are going to send Dickie home soon. They can't really do anything for him except let him lie there hoping his liver will improve so that he can become functional again. He really needs a new one but they don't give that many livers to people with AIDS. And Ghost is also home. He told me he feels like he is the one person who really understands what Dickie is going through. I mean I was sick but never as sick as these guys.

Anyway, for the past two weeks and for the next couple of weeks, until I go to San Francisco on Jan. 16th I'm not going to be writing much in this diary. Mostly, I'm going through all the old files and diaries and cleaning them up.

I've written a new "first time here?" page (www.bonusround.com/firsttime.html) and I'm sorting through all the dead links and photographs, trying to bring them up to date and stuff. So you won't hear much from me for a couple of weeks except on the discussion board and the TLS list.

Oh, I did get my new glasses but they couldn't make the permanent lens work in this frameless format so I still have that ugly plastic prism stuck on there which makes me look like Frankenstein if I hold my head just right but at least I can read this page without taping my glasses to my forehead -- no more tapehead! -- and Jimmy got me a Palmcorder for Christmas so I can tape my tours. I got him some new pots and pans so he can cook for me. I'm so good to him.

Also, Jimmy is now working full time for the El Portal Center for the Arts here in North Hollywood as a Producer and as Director of Special Events. This beautiful theatre, built in 1926, is one of the few 400 seat theatres in the Los Angeles area. So I'm getting a lot of alone time with the piano -- how much do I love that?

Anyway, as I said, I'm going to be around but I won't be writing much in the diary until I got to San Francisco on the 16th. I'll be singing once again at my "home church," the Dolores Street Baptist Church. If you want to join us, get there early on Sunday morning because it's a tiny little storefront.

As for the millennium, I know the struggle for health, life, liberty and peace continues in many parts of the world and in many hearts and minds, but I have never felt so optimistic about the creative capacity of this human race to endure and to create beauty.

Life, indeed, is ours for the taking. I intend to continue this blessed bonus round long into the new age. I'm glad you're with me.

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© 1999 by Steve Schalchlin.
You have permission to print from this diary and distribute for use in support groups, schools, or to just give to a friend. You do not have permission to sell it.