April 25, 1996 is a vivid day for me. It was a landmark day. It was the day I lost it. As I had been hinting in the days leading up to April 25, 1996, the slow realization that I was totally and completely losing the battle -- like a frog in a pot of water about to hit boil -- all came to a loud, angry, out of control scream.
The person who got screamed at was Dr. Frank Jasper. Dr. Frank was this beautiful, gentle, kind man. He was an actor before he went into Chinese acupuncture, appearing as the muscle-bound bad guy in the movie "Vision Quest." To call him kind and gentle is to understate my absolute love for him. And the only reason I was able to undergo these treatments was because they were a life-saving gift from John Bettis. I have no doubt that these treatments played a part in keeping me alive up to this point.
So, I shocked myself when "the scream" came out. And it wasn't just an "all-purpose scream at the ceiling cry of desperation." No. This was pent-up frustration, shamefully aimed right at the most vulnerable and sweet person I could find: Dr. Frank.
The entry starts this way:
I was lying face up on Dr. Frank's table. I was thinking of what my friend (and Registered Nurse) Dennis had just told me not one hour earlier. Dennis hadn't seen me since the reading two months ago. He saw me as this walking skeleton and was horribly shocked when he saw me at the door. He said that if I did not do some kind of aggressive intervention to get some nutrition into my body, I would be dead soon.Let's back up. "The Reading," mentioned in this entry was our first staged reading of "The Last Session" which was at the Hollywood Roosevelt Hotel. On that night, I played the role of Gideon and it was a triumphant night, the full telling of which is for another entry. Suffice it to say that the diary began as a result of that night because I wanted to find a way to promote TLS and this new World Wide Web thingie seemed the perfect vehicle. Little did I realize, at the time, that I was making both medical history, technological and theatrical history. (It was the first website created for a show that made it to New York -- and that's including all the shows that were in New York at the time I started.)
Dennis was a great friend who, when I first went into the hospital in 1994, came into the room with all kinds of food and toys and a CD player. Dennis was the one who told me, on that first visit where I almost lost the battle, "If you die, a piece of me is going to die, too." Dennis and his partner, John, were the ones who loaned us the laser printer that we were using and which they now needed, which is why I was in Malibu at Dennis' house earlier that day. As I said, I hadn't seen Dennis in about two months.
When I walked in his door, the look on his Registered Nurse face was indescribable. It was as if I had just been in a car accident and was standing there covered in blood with an arm detached and an eye hanging out of its socket.
I looked at him, "What?"
"You have to do something now or you're going to be dead within weeks. Compared to how you looked two months ago, I can't believe you can even stand. Seriously. This is it. Steve, you're dying."
I remember being completely numbed by this news. I was a zombie driving in my car to Dr. Frank's office in Pacific Palisades. What could I do? Dennis is usually full of happytalk and Don't Worry About It and We'll Get Through This. I was speechless. I looked at my face in the rear view mirror. A skeleton with sunken eye sockets -- The Cryptkeeper -- was looking back.
I got to Dr. Frank's office. Dr. Frank's office is very calm and relaxed. I was in a state of panic. Dr. Frank's office has running water and soft music. My heart was playing Nine Inch Nails. I laid down on the bed. He pulled out his needles. He smiled calmly at me. A volcano was building up inside of me. He said casually, "So, what shall we do today." I hated him in that moment. I hated his beauty, his smile, his manner, his office, the sweet music, the gentle lights. His words were like hammers hitting nails into my head, "So what shall we do today?"
And that's when I screamed.
It wasn't just a scream, mind you. No, it was the man on death row cutting loose on the executioner one last time. Quoting from the diary:
"I'm sorry, Dr. Frank, but I'm lying here dying right in front of you and you're going to further my torture with your stupid painful needles that don't do me a bit good. You don't have the faintest idea of what's wrong with me and how to fix it, do you? You just go about your business doing the same damn thing you've done from the beginning.I'm sure I also said, "So, do it! Torture me! Whatever the fuck you want. It's not going to help. You can't help me! All you can do is just torture me more and watch calmly as I die on this stupid table!"
I remember the hurt on his face. The tears that sprang into my eyes as I realized I was blaming him for everything and tearing him apart, word by word. I was enraged. I was mortified. I felt guilty as hell.
I had hit the wall.
From the diary:
Dr. Frank was very sympathetic and told me if I didn't want the acupuncture, I certainly didn't have to have it. I told him to please let's just do it. He inserted the needles, put on my favorite relaxing new age music and then put his hands on my head rubbing my temples and soothing me. I fell asleep and when I woke up, I felt a lot better, but even more determined to do something to get my life back.I remember that moment. The lights were dim. I had done my scream. The earthquake was over. He stood behind my head, put his hands on my temples and softly, gently rubbed me until I fell unconscious. When I woke, the moment had passed. And as I noted there, the panic was over. It was time to do something. When I got home, I told Jim what had happened. Then I called Dennis:
Dennis went to work, made an appointment with a doctor, called home health care and tomorrow I am going to step up to the plate and aggressively do something. What I think we're going to do is to put me on TPN, intravenous nutrition. It will mean 4 weeks of being hooked up to a bottle with a PICC-line (a semi-permanent tube) inserted under my clavicle (more torture -- yeah!!), but at this point, it's a last resort I must accede to. Either I do this or I die.TPN. "The last thing they give you before you die." That's how TPN had been described for me by another PWA. But it was time to examine all our options.
I knew I had one last shot at staying alive at least a little while longer and I was going to do it. Whatever it took. I was gonna try.