Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


Monday, April 26, 1999: Words Cannot Possibly Describe...

dear sparky,

i don't even know where to start this letter.

on the bus ride (amtrak's trains don't go any further than bakersfield...) to and from LA this weekend i composed to many sparky letters in my head. i don't really remember much of the ones i composed on the trip to LA because i was pretty much in a daze... but i do remember how thankful i felt. and that's really a theme i kept pretty much throughout the whole weekend and hold dear to my heart right now, how incredibly thankful i am for every chance i am given to reach for the stars (literally and figuratively).

let me start at the beginning:
this past weekend i traveled down to LA and i kept the entire trip secret from everyone but kim, ronda and karen (i was depending on these three people for transportation and lodging so they sorta had to be in on it...). you all may be wondering why i bothered keeping this such a secret and it's really very simple. i love to surprise people. i'll never forget the double-takes bob, steve and so many others gave me. it was classic and i was loving every minute of it.

when i got to LA i hung out at bobalew and listened to a new cut by jact and talked with ted and jeff and worked out domain issues with kim. seeing the jact boys was just a prelude of what was to come (i love those guys)...

later that night at the theatre i was treated to not one but two performances of rocky horror. (interjection: i could not bring myself to see TLS after all of the emotional wreckage i'd been through lately, the point of the weekend was to take my mind off my disease, off the recent deaths, off all of the troubles i've been facing... not to see them acted out onstage. luckily everyone completely understood this and no one pushed me to see the show.) well, rocky horror was just what i need to pick me up. i won't go into too many details here but for once i enjoyed the audience participation lines (well, some of them...) and i danced the time warp during curtain call and generally had a blast.

even though karen and i had to be up somewhat early the next morning we waited in the lobby to greet the rocky cast members. both donnie (donnie plays "riff-raff" in rocky) and lisa promised me that donnie would sign my "tommy" cd if i brought it the next day... which really excited me because i love tommy.

then karen and i eventually went back to her place and crashed for the night. i could tell some rather funny stories about the night (dreams i had, the fact that i shot straight up like i was being yanked by my hair everytime karen's alarm went off...) but i won't bore you.

saturday was the day i'd been waiting all week for. no one knew the real reason i was down in LA... i donned my leather ensemble and karen and i proceeded to the comic book store.

comic book store?

yup. the comic book store, dark delicacies in burbank (the store was much more than just a comic book store--they had some of my favorite plague books there...). james marsters, who plays spike on "buffy the vampire slayer" was scheduled to do a signing of a comic book which he co-wrote called "spike and dru". karen and i arrived half an hour early and were the 18th and 19th people in line. at first we talked to each other enthusiastically about the previous night's rocky horror experience (the eleven o'clock show on friday was insane) and then as the time dragged on karen ran some errands to the convenience store on the corner. as i grew more and more bored with standing in line i pulled out "franny and zooey" and kept myself occupied (and i also read some of my favorite passages aloud to karen...).

mr. marsters finally arrived (half an hour late due to traffic but he called ahead and told the comic book store owner who he informed those of us in line), when he arrived the owner began letting people into the store (yes, the line was out on the sidewalk... i felt like a freak to tell you the truth) and karen and i were lucky enough to be in the first batch.

i can honestly tell you that my first reaction to seeing mr. marsters in person was that he was a lot more handsome in person than onscreen. he didn't really look at all like spike because he had the most beautiful smile on his face, like he was genuinely happy to see everyone lined up just to get his autograph on a comic book that he co-wrote.

the line moved very very very slowly because mr. marsters talked to each and every person and gave them each a fair amount of time. it wasn't a "get in line, get an autograph and get out" sort of situation. the owner actually had to shoo the first few people in line out of the store because they were taking so long. while i stood in line i took pictures of the event with my digital camera and attempted to pass time by looking at the books (they had "plagues and peoples", not the newest version but they still had it...). and before i knew it i was at the edge of the table looking directly at...

the optic nerve guy. the main make-up guy and (i think) a contact lense guy from the show had accompanied mr. marsters (i should go look their names up on the web somewhere but i am really incredibly tired and don't feel like it...). they were incredibly nice and i talked to them for a goodly amount of time, which was a bright idea because i didn't even realize when it became my turn to get my purchases autographed.

now, i have a way of pulling a katie and saying something totally inappropriate in any given situation... but instead of saying something inappropriate, i just stared at him, not for very long though (well, it didn't feel like very long to me but it could have felt like an eternity to him...). i finally collected myself (it wasn't that i was so amazingly nervous to meet him, or even that i didn't know what to say... i was just speechless) and produced my purchases to be scrawled upon by him. then he and i began talking and he actually seemed to enjoy the conversation (i'm not going to prostitute the conversation here because i like to keep some moments just for me...). in the midst of our talking we both realized that we had to stop somewhere or else we wouldn't stop at all... so i asked him to take a picture with me.

a few people in the line ahead of me had asked him for pictures and he used the same pose on each one--the classic one arm around the person and smiling pose (i must have hundreds of pictures of myself with various stage actors posing like that...). so mr. marsters and i posed and he began to draw away from me back to his chair and i stopped him and asked him if he would mind taking another one this time of him biting my neck.

yes, i did say biting my neck and it wasn't some strange s&m thing, i swear. on the show he plays a vampire and a classic vampiric pose is the barred teeth over the neck... and he happily complied. as he posed a murmur went through the comic book store and i was instantly gleeful because i knew all of those girls wished that they were me.

but did i feel anything more intense than that? not really... i've studied the pictures of mr. marsters and myself and it's not my biggest smile by far... i was just very happy and content with the fact that i was meeting him. i was actually much calmer than i've ever been before.

after that i thanked him for the pictures, talked to him a bit longer and left.

just like that... in what seemed liked seconds to me it was finished. i was incredibly excited about the experience as a whole though. ask anyone who saw me on saturday, i was like my old giddy self.

and i hope i didn't just bore you with that incredibly long description of what was really such a small portion of time. if you think that's the end... it's not. but i'll be incredibly brief now. at the theatre after the first rocky show i waited for donnie to come out so i could have him sign my "tommy" cd and i finally asked lisa a bit timidly if he was coming out and she said she wasn't sure and to give her the stuff and she would have him sign it. so i readily agreed and passed it over to her and she disappeared. then a few minutes later jeff hanen poked his head out of the stage door, pointed and me and motioned me to come over. when i did, he said that donnie was waiting for me to come inside so that he could sign my cd. well... to say that excited me is an understatement. so donnie and i sat on the rocky stage (on the metal prop bench) and talked for a bit and it was a ton of fun.

and later that night neil patrick harris showed up at the theatre to see rocky. everyone who knows me knows that this is a little bit smaller than a big deal. i decided right then and there that this day was easily the best of my life.

then i went back to karen's and we both passed out and later the next day i came home.


well, i'm finally done recounting my weekend. there's honestly a thousand more things that i could mention but i really want you to stay awake during this letter. as i sit here writing about all of that i'm feeling like i'm going to burst into tears. which sounds completely ridiculous but isn't. after i met my idol, miep gies (she helped hide the frank family during WWII) i cried during the entire car trip home.

as you all know by now one of my favorite questions is "why me?". whenever i ask it though i'm usually referring to my illness--why did i have to get sick at such a young age? why did i have to be better friends with doctors and nurses than with other kids? why do i have to spend so much of my life in pain?

riding in the car home after meeting miep, i was asking myself "why me?". i didn't understand why some dorky little kid like me would be lucky enough to meet such an amazing woman... and i feel that way so many times. i've met so many amazing people and i don't know what i did to deserve any of it. it's times like these that i feel so incredibly humbled and so grateful for every special memory that i have.

i'm actually crying as i write this. honest. a part of me is wondering if i would give up all of those incredible experiences if it meant that i could give up all of the suffering i've had to go through... all of the surgeries, the hospital stays, the teams of doctors and the medicine.

and for once... a small part of me is screaming "yes! i would!". but i know if it came down to it i wouldn't. dealing with illness is as important to me as meeting someone like james marsters. both experiences, though different as they may be, teach me that i can do most anything.

when i set my mind on something i make it happen... a week ago i told my parents that i wanted to go down to LA to meet james marsters... 10 years ago i told my doctor that i wasn't going to let this disease ruin my life.

and gosh golly... i always get my way.

love you lots,

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