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stardust holiday
chronicles of the chronically (and voluntarily) bedridden

and it'll make a whisper out of you

30 April 2006
still brooding over this, still thinking and thinking and this is weighing heavily over me. i have so much to say still, but this is affecting me more than i thought it would. i have too much time to think about anything my mind fixates on.

It is lonely and it is exhilarating. It is breathtaking and it is be wonderment. It is mindful and ever present, complicated and simple. It simply just is. It requires a strong willed, stubborn bastard as a participant and rarely preys on the frail and weak spirited. And once it grabs hold, it is destiny and laughter is good. Laughter is great and hope is important and something is better than nothing and complete understanding happens I am positive, but not until I am dead, so I cannot tell you about that and you cannot tell me for I will be gone, but you may be fortunate enough to see it and feel it.



i am so infinitely curious about this experience, but i don't want to have it for myself. i'd like to talk to him face to face, go out for coffee, do nothing, do everything, ask questions (this would probably get annoying. i have a LOT of questions.), ask lots and lots of questions and listen to all of his answers, for hours. i want to be able to give him that time out of my life, i feel like it's the least i could do. but how to set something like that in motion, or would it even be appreciated?

i'm sick of the "planning and working my ass off" phase of life. i just feel like i'm stuck in this little hamster wheel of plan plan plan and i never get to do anything. that's a lie, i know, but i feel like i could be doing a lot more. i could leave for europe in september instead of going to school, but i'd come back to being broke and working two jobs and having a beat up car that barely runs. instead, i'm going to go back to school with a part time job and a paid internship ( i hope ) still busting my butt, but when i get out, life will be better right? it's the endless quest for a better life. we know that life can be better. but all of this is when that eternal quest comes to an end and you know your time is up? then what?


agh. stupid medication. i hate this medication, and i don't want to take it anymore. i can't keep the train of thought after a certain point. like, my whole thought process just deconstructs about forty minutes after taking the pill.


and i really realized i'm really only half done with this damned study. two weeks of bedrest, eight weeks of post bed-rest rehab...

oh well. it will be may when i wake up. i'll be that much closer to getting out of bed.

PS. i don't like being lied to not told the whole truth about my medication. i distinctly remember being told that this was NOT habit forming. (thanks for the link, mike.)


ps #2, i have a ton of photos from today but i'll put them up tomorrow. promise. someone remind me.
22:46 :: 9 comments :: permalink


confrontational.

29 April 2006
3500 hits in one day... wow.


it's been a long day with not much to break up the monotony of hospital life. i'm going to take my sleeping pills soon and black out another night where i would be wide awake and talking with friends. i'm not a fan of this kind of medicating, to correct sleep schedules and chemical imbalances. (vertigo is another story.) i'd rather let my body rhythms flow their own way, but instead i'm an inconvience, a protocol deviation. sorry, not a morning person.

i've been thinking a lot about the comment from eric and his whole situation. how does one deal with the thoughts that you are simply waiting to die? we all are in the nihilist "who gives a shit" kind of way, but putting a timeframe on it? a specific date? what do you accomplish in that timeframe? do you feel like accomplishing anything at all? what wishes do you fulfill? which do you leave out? what's your list? do you not care about pickup lines with pretty girls anymore and go for the best laugh? how do you achieve inner peace at that point? or is it constant turmoil? accepting or angry? what's the most important to you? does it change from day to day? (none of this is specifically at eric, but i would be curious to know his answers.)


i ask all these things because i wasn't able to ask my father twelve years ago. i ask because my own mortality scares the shit out me. i used to be a teenager, completely invincible. i used to say "i'm not afraid of death" but i know now that was premature. i used to be big, bad and fearless. now i've grown up and know that every day is potentially my last. i used to scare people by saying things like "i'm not afraid of death" and now i hear that and i'm scared for the person saying it.



ok, ambien is kicking in and the train of thought has kind of gone off track, so i'm going to be done for the night.
22:27 :: 12 comments :: permalink


the question is "wouldn't mama be proud?"

Erin,

I had a chance to view your blog late last might and I must tell you that at first, I thought you were terminally ill. Your thoughts and feelings and isolation are so similar to what I go through, and I am young, and I am terminal. When I continued to read and read as you spoke of 'friends', I too could relate and unfortunately, this IS human nature and people just do not like the idea of having to deal with their own mortality.

I believe it takes a courageous person to participate in a study, for what ever reason and hope that your intentions are pure and that you will NOT forget the isolation. You in turn, will walk where few want to, less understand, and too many have been before. Keep blogging! I have a site that I am creating about being terminal, my thoughts, my journey called: a complete piece. Soon I will invite the world into mine and I invite you as well.

With great respect,

thewarrior


I just got this comment, read through the entire blog all at once. It made me cry, question myself, and be thankful all at once. It gives me a lot of perspective, if only in a removed sort of sense. Or rather, it reminds me of a perspective I used to have, but selectively removed myself from it. At age nine, I watched my father go from what we thought was completely healthy to permanently hospitalized in a matter of days. He just never left. It's hard to think about, it's hard to watch happen. Like you said, Eric, no one wants to be reminded of their mortality. I've pushed this out of the forefront of thought and was in denial for so long that somedays I questioned whether or not it had actually happened. The mind is very strong, for better or for worse. I'm very lucky to have my health, I'm doing this study voluntarily and only because I'm so healthy. I had to be screened head to toe looking for everything from kidney stones to heart problems before I was cleared to participate. But I'm experiencing a significant amount of isolation, the extent of which I won't easily forget. The amount of empathy I'm gaining from this is astounding though.


This has touched on a lot of raw nerves and hidden triggers, which I'd like to elaborate more on... but not now. My brain is too disjointed to really write any more for now. I'd like to take a nap, but I'm not allowed to. This would be a good naptime. -sigh-

I shall return.
17:26 :: 4 comments :: permalink


slow day in american splendor.

 mike was here for a little bit of quiet time today. it was nice to just take a break from the hustle and bustle of weekdays for times like this.
 he's reading the american splendor graphic novel "our movie year"
 i told him to not pay attention to the fact that the camera was going off constantly. i got a few good shots, too.
 and after this, i settled down and read the end of it with him.

it's days like these that make me feel really lucky to have him. we don't HAVE to be doing something. just being together, being around each other is enough.

 Posted by Picasa
17:03 :: 1 comments :: permalink


cherry blossom girl

28 April 2006
 Spring is officially here, and I'm missing the cherry blossoms.

 This is a little courtyard off of Carnegie, and I get a view of it every day on my way to lab.

 Last post of the night.

 Goodnight. Posted by Picasa
23:23 :: 11 comments :: permalink


"i want to stay in bed all day"

 random picture of me doing my substudy questionnaires. Posted by Picasa
23:22 :: 2 comments :: permalink


photographing the photographer

 Neil told me that one of the first pictures he took was of a wedding photographer.
 My favorite picture from my end of the camera. "You look like a great kid. What are you doing here?" -grin-
 He's been working at the Clinic for 27 years. (wow!) Posted by Picasa
23:19 :: 0 comments :: permalink


typical me, typical me i started something

 today was the photoshoot (?) for the financial times article.

 Neil (the photographer) setting up lights.

 My second favorite of my pictures from the shoot.


 more lights. Posted by Picasa
23:10 :: 0 comments :: permalink


(un)steady as she goes.

  A couple of quick shots from this morning, trying to figure out if my hair looked like crap or not. (it did.)
 eh?
 this is my favorite, unfortunately it's shaky because my hands got that fun fun crack shake to them. Posted by Picasa
23:03 :: 0 comments :: permalink


then one fine mornin' she puts on a new york station, you know, she couldn't believe what she heard at all

I got in trouble today for staying up late. I have no public comment at this time, but I sure as hell have a few private ones.

No more late night blogging for me. So, I have a quick couple of photo posts and then I have to go bed.

-rolls eyes-


Today hasn't been that good, mentally. I've been fighting a lot of internal anger and restlessness. I've got two weeks left, that's what everyone tells me. But it's beautiful outside and I feel like I'm missing out on spring. -sigh- I'll be home soon...
22:00 :: 1 comments :: permalink


blogs of note

I noticed yesterday that I was getting hits from Google servers. Not Google search but the actual servers at Google headquarters in California. Sweet, right?

Today I got a blog comment from Alex welcoming me to blogs of note. Basically they put my link up on the Blogger home page.
 
Here's a screen grab, I could hardly believe it myself. I've also had almost 2000 hits today so far. Wow. Posted by Picasa
21:27 :: 2 comments :: permalink


pete relic, beloved tromboner :-)

Pete's coming to town this summer? Maybemaybe hurrah-y! (i just thought of something awesome for him. -grin-)

 


it was huge:
Nixon came to Cleveland in '74, the same week Hank Aaron hit the 714th home run of his career and passed Babe Ruth on the all-time list. My older brothers were convinced that Nixon's helicopter was going to fly over our house. We raked leaves all morning between the huge oak trees in the backyard, then made a peace sign with the leaves. It was huge. In the middle of the afternoon a helicopter flew over our backyard. "President Nixon!" Barb screamed at the sky while my brothers and I pointed at the peace sign of leaves. Now that was a great American, Hank Aaron. (020404)



the flutateer and tambouriner miss you, senor pedro tromboner. Posted by Picasa
02:18 :: 1 comments :: permalink


boys don't cry...

...but I almost did today. A really great surprise late in the day really helped out. I'm still totally spaced out and cant' really focus on anything... but my general demeanor certainly improved.

So.

I knew Justine was coming out tonight. But I suppose I should have known something was up when she said she wouldn't need an escort back over to her car. (The other times she came around, she left with someone else, after dark, and had them take her back to her car, over on Cedar. The Cleveland Clinic is a really nice hospital surrounded by a really shitty neighborhood to the south and west.) But, because I'm so scatterbrained these days, I didn't think anything of it.

brain goes: email beep beep myspace thom's chat hey! Justine's coming out today oh pretty shiny thing email i'm so bored time to go home home home i want to go home dammit blah blah blah oh hi blah blah blah

So I was looking forward to seeing her again. She's always fun to hang out with and she's awesome at origami. Note to self: post pictures of the origami zoo she has started in my room. -grin-

 Justine walked in, looking happy to have finally made it here. (My room is kind of tucked away and hard to get to.) And following her in?

 Eric, brand new General Manager elect of WCSB 89.3. I haven't seen him this entire time, but have kept in fairly close contact between email (which is more than I can say for a sadly large number of "friends") and calls into his radio show, which is Friday night on WCSB, 11pm - 1am.

I've MISSED Eric. Really, honestly, MISSED Eric. A lot. Like I MISSED Leia.

I'm not sure how Justine and Eric planned this, but I'm glad they did. It gave me warm fuzzies inside, like a shot of whiskey. Mmmm. Maker's Mark. Eric? You down?

 Eric says "yes" to the Maker's Mark. Posted by Picasa
01:13 :: 0 comments :: permalink


tuesday's gray and wednesday too

27 April 2006
I'm to the "tired but can't sleep" phase. Utterly frustrating.

I did fall asleep during/after my massage today, however, and fell into a very surreal lucid dream. I can't remember it though, because a nurse came in and woke me up halfway through it. ARGGGGHHHHH if I'm woken up mid-dreamstate, if someone wants to know something from me, I never remember what it is I was dreaming about.

It's strange though, having so much uninterrupted sleep time does lead to some weird occurances. (luckily no sleepwalking though!) Lucid dreaming and/or having dream control is very frequent now, without induction. I still have a LOT of reading to do, but I'm curious to see how it will turn out. It's not quite as possible at home, sleeping with someone else in the bed with me. If I sleep facing him, I already can't get to a dream journal to write things down. But I'm going to start being more aware of these things and hopefully something will come out of it. There is some amazing imagery in my dreams sometimes, and I think some of these things would make interesting artwork.


OK, bed time. Drifting off and listening to The Cure. Let's see how this works out.
02:33 :: 3 comments :: permalink


for now, for now.

ok, i'm done for tonight, it looks pretty half assed, but wait til i'm done... -grin- working on some graphics for it.


i can't figure out why there's an extra 100 some pixels off to the side though. there's nothing over there.

if anyone has a clue, help me out! -grin-
00:26 :: 3 comments :: permalink


pardon my broken code.

26 April 2006
might be messy for awhile, trying to come up with a new layout.
21:33 :: 0 comments :: permalink


vague media update

this whole press thing has got me really busy. sorry for no major updates on that, I have a LOT of them, but I've been on the phone all morning with either editors at the financial times (london), Kate at CNN, or Natalie in media relations here at the Cleveland Clinic or emailing any combination of the three.
At first, I was really against having the media go through someone else, but I'll be damned if I'm not really lucky I've got someone like Natalie helping me out with all of this stuff. There is no way in hell I would have ever been able to keep track of when the photographers are going to be here for the Financial Times, when Dr Cavanagh is coming up for his interview when CNN is here, or any other itty bitty little detail that I would have overlooked.

On top of that I'm trying to put together a resume for this internship that I really want when I get out of here, but Ricki said that everything still needs a lot of work.

-phew-

Yes, everything's coming together. And I'll be home soon.

more details soon, and some regular updates.
16:17 :: 0 comments :: permalink


Welcome!

25 April 2006
I've decided to invite one of the new potential candidates to my blog, to keep this going instead of having seperate blogs. So entries will start overlapping, with Becca starting the screening process while I'm finishing up with bedrest.
 Welcome, Becca! Posted by Picasa
18:22 :: 2 comments :: permalink


I can't believe I forgot...

I went four whole days without saying anything, I'm amazed. CNN will be here on May 3rd and 4th. "Why are they going to be there for two days?" you might ask. Because they're going to hang out with me for a day, interview Ricki and Dr Cavanagh, and put together a taped segment, to be used the next day as an intro to the LIVE (via satellite) interview on their morning show.

You guys see the problem with this, right? Right?

Yeah. That's it. Right there.

I don't DO mornings.


-grin-

Oh well.
Gotta learn sometime.
02:41 :: 3 comments :: permalink


bottle up and explode.

OK, so the truth about me ignoring the blog is that I'm battling a bout of depression/cabin fever. I don't want to be here, the trees are in bloom, and for once, Cleveland's Spring showed up earlier than any year I've been here so far. I'm nervous about the CNN thing (tentatively scheduled for May 3rd and 4th?) and in general, completely fed up with laying in bed. So, I've been trying to keep myself completely occupied at all times. If I get too much time to think about things, I just get frustrated. So: I'm currently working on:
  1. album art / tshirt logos / website design for The Volta Sound
  2. a resume for an internship at cleveland.com that i really, REALLY want.
  3. trying to figure out how to knit myself a purse. erg.
  4. coming up with a perfect design for my next tattoo. (I'm also looking for artists in the Cleveland area, if anyone has suggestions of who to go/not to go to? I'm also willing to travel (within reason) for better artists.)
You know what else? I haven't had a good scream this entire time. It would probably freak people out here. Sometimes, it's just NECESSARY.



It's a healthy, natural release valve, a coping mechanism. Better yet? It works. Some days, nothing helps more than a window rattling, ear splitting, throat-rasping scream. I think I'll walk outside after I get out of bed and just let loose 12 weeks of pent up aggression. After 10 seconds, I'm done. All better. What's next?

But, in all reality... It could be worse. I could be these folks.
01:05 :: 1 comments :: permalink


and! what i've been working on that makes me neglect my blog: the new volta sound tshirts!

23 April 2006
 mike's: green and pink on white
 mine: brown and pink on light blue. (sorry for the washout)
 a non washed out but fuzzy picture...
 and the original design, in pink.


this thing took me forever. well... about 10-15 hours of work throughout friday night and saturday all day. phooo! but it looks awesome, and i can change the whole thing with one color change. it looks awesome.



ps yes i know i said it looks awesome twice. but it really is that awesome. promise.

 Posted by Picasa
20:34 :: 1 comments :: permalink


attack!

 sara attacking me with a scarf. or at least my camera.
 oh yeah, wiseguy?
 yeah! Posted by Picasa
20:30 :: 0 comments :: permalink


trying on ricki's scarf

 hey sara, i don't think... i ... uhm...
 sara, you missed.
 wrap it around yr neck. like this. see? -grin- Posted by Picasa
20:25 :: 0 comments :: permalink


again, sara will kill me for this:

 sara knitting...
 and sara sniffing.

and sara two seconds later: you didn't... you DID just take a picture! i can't believe you! you just took that picture! ack! Posted by Picasa
20:23 :: 0 comments :: permalink