Thursday, June 01, 2006

10 Yrs. Ago: Shawn Decker & "Louie" Enter My Life.

It's so fun looking back at the diary 10 years ago when I find entries like this one:
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...
Yes, it was on May 25th, 1996 that I began one of the most important and wonderful friendships of my life. I "met" Shawn Decker. He was only 20 years old and had had HIV since the age of 11. Jimmy and I have since "adopted" Shawn as our godson. He had just appeared on the cover of POZ magazine and was trying to figure out what to do with his life. What I remember was being to utterly charmed by his wit and his good humor, I told him he could make a living just being himself, that he should write a diary on the Net, be his hilarious self and, finally, get on the HIV lecture circuit.

Little did I know how he would take all this advice to heart. He had already established his website,, about the same time I established Bonus Round. He got a job at POZ for a little while, then I introduced him to a college lecture tour agent, he met his beautiful wife Gwenn while giving a lecture near his home, and now he has written a book which will be released this fall.

At the same time I was getting to know Shawn, we finally made the decision to insert a PICC line and put me on an I.V. of nutrition 12 hours a day. I wrote:

"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."

What I didn't say was that this was it. This was out last ditch attempt to keep me alive. If this didn't work, then it would be all over. I was so afraid of the "insertion. But then...
"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."
It was nothing. Dealing with the feedbag, though. That took some adjustment. A nurse visited us as home and instructed Jim. We kept the bags in the refrigerator. We had to inject the bags with vitamins and other stuff just before hooking me up. There was a catheter in my arm. Every evening we would hook it up and I would sleep with it in my arm. If I rolled over or crimped the tube, a warning signal would sound loudly, waking us up and I'd have to straighten it out and make the siren go away.

Meanwhile, I'm keeping myself busy by trying to rewrite TLS and look for opportunities to get it produced. I'm like a maniac. On one hand, I'm dragging around this feedbag (which I named "Louie") and on the other hand, I'm trying to become a rock star on Broadway.

And nobody told me I couldn't do it. But even if they had, I wouldn't have listened.

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