Thursday
August 1, 2002
I
think this is the hardest time in my life and the best. Buzzy
and I go for Jacuzzis in the day and we swim and take care
of ourselves. I have been on this dehydration kick where I
cut my drinking down a lot and then I have more blood moving
through my body than water. I am thinking more and more about
going through trepanation.
I think that might do something to relieve the pressure in
my head.
So...
lots is going through my mind. Fears... feelings and sensations.
I can say that if anything were to go wrong I lived the life
I pretty much wanted to.
Friday
August 2, 2002
I
have finally come to the conclusion that I am a rare and unique
individual with exceptionally rare and unique kinds of problems.
For me... death is a reality that I feel from the second I
wake up until the moment I lay down from sheer exhaustion.
I have never met someone else in such crippling pain and all
I can do is manage to suffer. The only solace I have these
days is sitting in the Jacuzzi, chilling with Buzzy, Florent
and Rita. Rita has Parkinson's Disease and has it in her mind
that I can some how take care of her when I do well enough
to remember to bathe or shower on a regular basis. Since my
husband is French bathing is not as important to him as it
is to Buzzy because we were Americanized.
I
was really sad to lose my job for several reasons. The first
being that my father was a major in the Army when I was growing
up. He always wanted to be a general like my great- - - -
grandfather Green Clay. There were so many of them that were
in the military but it still made it hard for the children
to grow up that way... My father went to Baylor in Chattanooga.
He eventually retired a Lt. Colonel. I have that background
and I am sorry but it's very hard to come away from and when
you were raised by a man and that can't teach you how to be
a woman it makes life hard sprinkled on top with their divorce
and her being ill from the time I was 8.
I
have been thinking about how much it upsets me that I lost
that job. It was perfect. I could have run it because I have
the imagination, the correct vantage point, the perfect background
for making so many people happy but the one thing I have noticed
about people that haven't been threatened with their life
by some horrible disease is that they don't get what really
happens to people when they get ill.
I
also can't tell you how discouraged I am to realize how truly
brain damaged I am and how I will never learn. Just like that
guy in Memento who can never come out of his world.
Sometimes I feel that disassociation between myself and the
events transpiring around me. There is no control. There is
no subtlety people, no softness and no caring. The only time
I have ever found that kind of caring was from my own family
and from people that would confess their deepest secrets to
me along the street.
The
things I have heard... if you could only imagine. I can't
even remember half of them anymore. I can barely remember
which day it is.
I
talked to this guy last night about doing my brain surgery
on-line. He asked me if insurance was going to pay and I told
him that I was going through Harbor UCLA. I can't remember
to pay the phone bill but I can remember to get the kind of
paperwork it takes to get free medical care. I forget about
my student loan papers and my car registration... I just can't
bring it together enough to get anything accomplished. I work
to keep from going completely batty because if I had to stay
on the boat all the time I would go crazy. I put aluminum
foil over the hatch in the bedroom and now I am sleeping much
more soundly.
Poor
Florent. He is working his dick off, ruining my car because
of the spare that is on it. He didn't get home until 10 last
night and expected me to cook for him. I told him no. I am
not making dinner for anyone that late. I do well enough to
remember to clean and the only sites I check these days are
my e-mail, hotmail, craigslist and whatever someone sends
me.
I haven't even started taking morphine and I am so much wanting
it because the core of my back and spinal cord constantly
radiate pain that shoots all over my body. I remember when
my doctor (Dr. Little now Reid) that has taken care of me
since I was 16 was disturbed at the size of my gallstone and
was curious why I could never feel it before and I think that's
because some of my nerves around my organs are dying.
It
would really suck to die from a nervous system disease...
which I think I am doing. Imagine what it would be like to
be touching an electric fence for longer than it took you
to take your finger off. Put that in your spine with indiscriminate
shooting pain along with tingling sensations that shoot you
back more pain when you use a shitty keyboard or sit for too
long. That's what my life is like right now.
It's
not relenting it's hateful grasp from my shoulders. There
is never a day I awake and feel a sense of relief when I raise
my head. I am not having sex with Florent right now because
it is just too painful for words. I guess I shouldn't be too
disappointed in myself. At least I tried and I think that
is the important part.
I
fry in the sun now. I understand why my mother used to do
it so much before she died. I think when your back is sunburned
and the heat radiates into your skin that is simply one of
the most divine feelings in the world.
I
think about dying a lot these days. It's not so easy to think
about. I think about all the people I love and all the good
times that I have had and how it's a shame so many things
just didn't work out but that all the things that did are
some of the best things in the world. I have lived a hell
of a life and it feels in some way that it's all kind of come
to the point it is right here and right now. Living each moment
for what it is. Doing the right thing, messing with people
in an honest way. Examining my life without ever learning
the corporate way.
I
can never be anybody but who I am... a stubborn half hillbilly
half blue blood that thinks the world should be bending over
kissing my ass because of all the cool things I have done
to make this life more bearable and bring pleasure to those
around me.
I
look at my life and think to myself that maybe I didn't do
so bad after. I graduated from college, I am living in Marina
Del Rey on a sailboat, I'm married still (things have been
well lately considering the circumstances), I have traveled
a lot, I have done amazing things with amazing people that
have made me very happy. I accomplished a lot but there are
a few more things I would like to tidy up along the way.
If
I can make money from having my brain surgery broadcast live
that would be such a relief.
I
feel like I am stuck behind this thing. Like I look out with
my eyes but there is this hindrance pulling on my right eye
making it ache. And I am stuck right behind it. I look out
and see things in a nonrealistic fashion where everyone is
taking like so seriously and I am seeing it for the joke it
really is.
I
guess success comes to people in many forms. Public validation
is one that I am not particularly keen on at this moment in
time. I would like to meet other people with my affliction
although I doubt there are many like me...
Wednesday
August 7, 2002
So...
things are getting a little busy.
I
met with Cort St. George from online surgery to see about
putting my brain surgery online and broadcasting it live.
I think that would be cool.
We
had a flat tire since last week and Floron the moron was too
fucked up to get it fixed. I ended up driving down around
Washington and Crenshaw and some guy was gonna sell me new
tires that didn't match for $160 cash. I thought it was a
good deal so I went to the ATM and got the money. The teller
from the morning lied to me and didn't give me an account
balance so I freaked out. But then I found out everything
was OK. I guess OK is a relative term.
I
drove by this place and thought "I might as well check
it out" and when I turned around and drove up the guy
was honest at least and told me he would sell me two used
tires for $100. I was trying to decide if this was good enough
when these two black guys pulled up to have rims put on their
car and they were smoking a blunt and then the owner started
screaming at them to "Get that shit out of here ra ra
ra ra"
And
one of the guys goes "Oh... sorry. I didn't mean to offend
the LADY."
And
I screamed back "Can I have a puff?"
It
was a day in LA...
I
spent most of the day with Buzzy because I was fixing her
printer... and was worried that there was ink dried in the
cartridges but there wasn't. I just forgot to pull the yellow
ribbon. I sat around and looked for a job for her she worked
on her mosaics. The things she is creating are so beautiful.
I could see myself messing up china just to put on vases and
stuff. Or Firing vases and then applying the mosaics to them.
I miss doing ceramics. If I start to feel better that's what
I would like to do. I guess I could sign up for a class and
maybe by then I will have already had the brain surgery.
Plus
it might give me something to look forward to.
Ether
Internet is down again. I have accommodated myself so that
I am seated with my legs up on my desk and lounged back for
maximum comfort. I ate 2 Crispy Cremes this morning. I bought
them in the hood yesterday. I didn't know I was in the hood
until I got to work this morning.
Monday
August 12, 2002
I
started off the day calling Buzzy and asking if she was going
to join me for a Jacuzzi and swim. She was the one that suggested
it last night. I wish I could do more for her right now but
I can hardly take care of myself and I have been thinking
about a lot of things lately and becoming more and more grateful.
I appreciate Florent that he worries about me and doesn't
let me become like one of the women wandering around the Marina.
I am sure that their families gave up a long time ago and
just let them start wondering around the marina. Some of them
are too hard to take care of. I know because I saw the shit
Buzzy went through dealing with poor Miss Rita that has lost
her mind to Parkinson's.
I don't have time for it. I have time to rest and relax and
that's about it. I clean here and there. I have several appointments
soon. The 15th I see the Neurologist, the 19th I see the Eye
doctor and then on the 6th of September I see the SSI judge
in the morning and then the neurosurgeon in the afternoon
although I just got off the phone with an attorney and he
said since there is no time that he's probably going to get
a continuance. Jerry Tersky-323-938-4000 5657 Wilshire Blvd
Suite 340 on the 27th at 9 am. He also said that some people
qualify for SSI for up to a year before they applied and since
I never got any better then maybe we can go this route.
I am in so much pain now. I am sick all the time. Last night
when I laid down to go to sleep it hurt so much that I just
laid there because even breathing would make it hurt. Moving
the wrong way makes me hurt. When it starts to feel crowded
in there I start to get nauseated. I found this cool
web site that talks about symptoms of people that have
a fake brain tumor but there is still pressure in their arachnoid
membrane because there is too much fluid building up. There
isn't even jack shit out there about Arachonid cysts but there
are all these awful symptoms of what is wrong with people
that have a build up.
I
should sleep now. I have an interview that I get to blow tomorrow.
I think I do these kinds of things to amuse myself. I must
be doing something right... or my resume just looks a lot
better.
Sometimes
I don't wonder why God just doesn't smite me now. There has
to be some point of THIS kind of suffering. I'm ready for
morphine. I don't care what it does to my body I can't live
like this much longer. I'm going mad and I am losing my mind.
Thursday
August 15, 2002
I'm
losing it. All I do is eat a little, shit, sleep, work and
if I am lucky Jacuzzi and Swim. I have no idea what time I
went to bed last night... around 8 PM but I heard Florent
call Buzzy and I was already asleep.
I
wish my doctors would have told me that I have intercrainial
pressure. I think that's why I can't get anything done. I
think there is too much fluid up there which makes it hard
to do much of anything. I am curious to see what my Intercrainal
pressure is.
The
other day I was over at Buzzy's and talking to her as I was
putting the ice cream away saying "OK...I'll bee you
later" and we both started laughing. She said "I
finally realized you were saying good bye to the Hagen Daz."
Oh boy oh boy... I think I might be on to something here.
I think there is a lot to be said about diets and such. It
was nice to read about those fake tumors because since I have
a real mass in my skull then being big is just a symptom of
the disease that I have although I have always felt that because
I could carry the weight I was healthy. Now I can't carry
the weight and I am dropping.
I'm
soooo fabulous though... I can't stand it.
Friday
August 15, 2002
It's
been a day of not a whole fucking lot. Buzzy and I started
in the Jacuzzi (before work) and then after stressing about
going to work I showed up and didn't even have to be there.
I cried a lot. Found a nice peaceful place to cry with a fake
waterfall (because averting is fake in LA). Finished walking
to the boat and started cleaning when Thomas stopped by to
ask if he could use the dingie. I thought today I wouldn't
smoke any pot to see if I felt any better. I still hurt but
I think when I am high I feel even worse... or maybe when
I am tired.
For
now I am just tipsy, talking to Brownyn and waiting for Florent
to find his lost ass home.
I
lost a bag of weed... I am sure it's around here somewhere.
I am trying to find it but since I am not getting high today
I guess it doesn't really fucking matter.
We
had a spat yesterday where Florent offered his face up and
I smacked it. I was very happy to slap him but not expecting
him to slap me back which really pissed me off because he
was the jack ass that offered his face to begin with.
He
tired to tell me that I didn't know when to stop after I whopped
his ass. But I was horribly offended that he had the audacity
to smack me! Although nothing coming from that asshole surprises
me much anymore.
Tick
tock tick tock is all I am saying. I know no one out there
likes him very much but... I need him now. It sucks but it's
true.
Sunday
August 15, 2002
The
smell of sex pervades my senses. It's nice to be loved every
once in a while.
When
I make love it feels like my entire soul is going into what
I am doing and lately it has been difficult for me to express
myself sexually because of all the medication I am on. When
I went to the doctor the other day they changed my dosage
so things should be picking up again.
I have been thinking about many things lately. Dying is naturally
one of them. I am so scared right now that today I just sat
here and wailed. I have never cried so hard in my life. It
started because Florent went to take a bath because I offered
to give him head and when he came back, he still stunk. He
missed a pit and that just sent me into a tizzy. I started
thinking about the reason why he does this to me is because
he knows I can’t stand to be close to him when he stinks
so in my mind I thought that maybe he just doesn’t want
to be close to me. I thought about how I do not understand
why people brush me off as if I am scum for expressing myself
and my opinions. I thought about Jen because I went to see
her yesterday and she had her knee operated on last Friday
and had to have a cadaver’s ligament put into her knee
because hers was so fucked and that almost made me puke because…
what if I die? It scared me a great deal and seeing her was
hard. I miss her so much but at the same time even though
I cannot remember why we had the argument I remember she said
some things that were painful. Florent showed me his video
game yesterday and I started thinking about how awful it was
that he is so talented and yet he cannot get a job with a
video game company because he does not know how to get in.
I have been making a book with Iphoto about Kazantip and managed
to make it so pretty but it does not go into a web page easily.
Then I made a Quicklime movie with Linda Verona singing and
I started thinking about the words and how it feels like Russians
care so much more about life and dealing with issues that
come up instead of ignoring them. I started thinking about
my mom being dead, my sister who doesn’t want to talk
to me at all, my father that blew me off and I couldn’t
stop crying. This is the hardest time in my life because I
know there is something not right with me but I can’t
help it. I didn’t ask to be this way and I would love
to change myself but no one will communicate with me or tell
me how I fuck up
Then I started to realize that this is my life and I am the
maestro.
I
think about how I had my vagina operated on to remove that
Depo-Provera cyst. I want to think that I am stronger. That
I can deal with the pain of living and then I realize I can’t.
I have to be operated on so this pressure will come out of
my skull because it really sucks having this thing doing shit
to my body that doctors don’t understand but I understand
it.
The
arachnoid membrane is fibrous like silk worms making silk
all the fibers inside the arachnoid membrane connect the messages
that go from the brain to the nerves. It carries the electricity
you need to move or think. Moreover, mine is in a bad place
because it is scared and continues to scar healthy tissue
and I can feel it happening and it hurts like hell. There
were many signs pointing to the degeneration of my make up
like walking on a broken ankle and I recall the time my doctor
exclaimed how huge my gallstone was and that I never complained
about the pain until it had me doubled over. I don’t
feel things like I should and the things that I feel are based
upon a pattern that was established in my childhood.
I think about how I basically have been taking care of myself
since I was 8 and we moved in with my father and I had to
wash my own clothes, do the dishes, homework, get screamed
at or be scared that I was going to get screamed at because
my father had a bad day and couldn’t make it work. What
a selfish asshole. I think about how he didn’t want take
me to band concerts and I almost was kicked out of band and
I loved playing the French Horn. I used to take it home every
night and sometime I would practice out in the field behind
our house where we once buried these fish that the game and
wildlife guys brought over but they didn’t make it so
they wound up on the dirt hill behind our house (which was
left there after they dug the basement out). I remember digging
the white fish up and seeing worms crawling all over, it and
I ran inside because I was so grossed out. That was how I
felt when Jen told me that she has someone else’s ligament
inside her. Maybe that was the association I felt to that
fish and to Keir telling me that my mom was worm food while
we were walking near the bikes next to the station in Amsterdam.
The
smell of Jen’s healing flesh brought on waves of confusion
and dizziness. Realizing that my own flesh will be smelling
the same way as it begins to heal after they cut my nose open
so then hopefully I won’t smell Florent’s pu for
a while.
I think about all these complex situations that I am dealing
with and how in the mass of my own confusion I am lost in
a whirlwind of not caring, caring too much, I’m scared
of dying or losing my vision. I watch the screen saver flip
through images I have taken and I listen to music as they
flash before my eyes and I wonder to myself how I have had
the opportunity to live such an amazing life and I can’t
even appreciate it now.
Florent
tells me I am a miserable person but I think I am just going
through a hard time and considering the circumstances of my
life at this moment in time a good cry that would make the
sirens envious was necessary. Even the sea lion was answering
my wails by calling back to me. He told me I was a miserable
person yesterday after I decided to hang up the Christmas
lights that have a control on them so they flash and blink
like the messages that go through your brain. I remember sitting
in the Oxygen bar in San Francisco wearing the goggles and
watching the light through my closed eyes and it stimulating
my brain and that’s one of the reasons I like the flash
of the Christmas lights.
I
wish I weren’t such a serious thinker but then again
I have been forced into this role by my own body because of
the pain of everything that I do and the minuscule amount
of pleasure that I receive from the little things that I can
do.
Alzy
is going into the Israeli army. What a tragedy. I know he
is going to be killed but he won’t listen to me because
he wants that piece of ass over there instead of being with
Jen. Just another thing we can lament over as we age. I hate
being separated from Jen and when I saw her hobbling out on
her crutches, I was both sad and extremely happy all at the
same time. Heidi was jumping in circles because she missed
me so much which made me feel like maybe every once in a while
I do something right.
Wednesday
August 20, 2002
Arachnoid
Cyst
Hello,
my name is Catherine Clay and I have an arachnoid cyst located
in between my optic nerves in the suprasella region of my
brain. I was told that this was probably congenital but
after reviewing several articles I believe I sustained mine
when I feel off a fence and landed on a brick or when I
was in a car accident when I was a child. [PMID: 9917544]
I am led to believe this because it appears that most children
that have these from birth have severe cognitive difficulties
[PMID: 10661787 & 9865542] and I am able to write you
a coherent letter at this moment.
In
1989 when I was 17 we were fixing the garage door when my
mother could no longer hold the door up and it swung and
knocked me out. I started getting headaches after that and
went to a neurologist where I was diagnosed with an arachnoid
cyst. {It is also a concern this deformation can be because
of environment due to the fact that my sister had AML, my
mother had ovarian cancer (did she have ovarian cancer when
my sister and myself were still in the womb?) and several
of our neighbors also died from cancer so I am curious to
see which factor environment plays in causing these as more
and more common.}
There
is not enough research done into the history of AC or there
is not a cohesive body of work that is out there to educate
doctors (being told this was “just a cyst” has
sent me into hysterics on several occasions) or people such
as myself. You can think of these cysts to cancer what leukemia
is to the blood just use it in relation to the nervous system.
The symptoms of people vary however there is not enough
data to help people age with this debilitating condition,
which is a MAJOR concern especially to me because I was
operated on 12 years ago but I still have a cyst and many
other problems.
Being a patient I can tell you first hand what it’s
like to live with one of these things. At 18 I was told
to just “wait and see” how this cyst would evolve.
My mother and I decided that the “wait and see”
approach was not for me (she was battling cancer at the
time) so I finally met with Dr. Herbert Engelhard III who
aspirated my cyst deflating it from the size of a plum to
the size of a grape going through my nose as my mother had
wanted.
Although still suffering from headaches that sometimes changing
with Barometric pressure and taking medications that were
for migraines (which were totally unsuited for my condition)
I still managed to go on to college and get a BA in Russian
and a BFA in Photography adapting a “grin and bear
it” attitude with my Super Mom fighting cancer, teaching
school, raising teenagers and on chemo 10 years straight
cheering me on.
The evidence I hope to present you with “does not support
the generally held view that such cysts are benign in nature
when ‘asymptomatic’” [PMID: 11694796 PubMed]
and that these dangerous fluid filled sacs can cause extreme
nervous system dysfunction to organs and limbs if not treated
aggressively.
In December of 2001 at the age of 29 I realized this cyst
was causing problems with my central nervous system. I was
admitted to UCLA because I was paralyzed from the neck down
for 4 hours. I could feel my nervous system dying [PMID:
11252085] and it was quite honestly the worst pain I have
ever experienced. The pain I have on a daily basis is unimaginable
because it hurts to walk, breathe or basically just live.
Typing these words sends back messages of pain to my brain.
Caresses jolt back to the brain as pain. I feel that this
is a connective tissue disease [PMID: 7666235 & 9315140]
where the cyst pulls on the healthy tissue around it causing
adhesions. Air Travel and Scuba diving have made me aware
of this feeling because of the high-pressure changes how
it pulls on the root of my nervous system. I feel the arachnoid
membrane serves as web of itself seating not just the personality
but carrying the neurons of the brain to the spinal cord
through its fine connections. When these connections get
stuck a patient may not communicate effectively due to the
messages being blocked by a cyst and if these messages get
blocked long enough it starts to degenerate the tissue surrounding
it (including the root of the nervous system) because that’s
what electricity does. If there were a way to see the fibers
of the arachnoid membrane and we could map them out we would
jump light years ahead in technology because we would be
able to map which fibers connect the brain with the central
nervous system what they control.
I believe that when an arachnoid cyst (or any infliction
of the lepomenges) is present it also acts in suppressing
the immune system allowing other damaging viruses to eat
the arachnoid membrane. At 15 I had a case of shingles,
Mono at 19 and removal of cysts located in my vagina at
22 and 23. I had a gallstone so big when I was 27 that my
family doctor that had been treating me for years remarked
how she couldn’t believe how large it was and I never
complained of the pain until I was falling over. She also
mentioned at one time that I might have Chronic Fatigue
Syndrome. I have attempted suicide 3 times. Taking pills
and once even taking a razor blade and slicing the back
of my head open because my head hurt so much. I broke my
ankle in Russia in 1996 and walked on it broken only occasionally
ever stopping for the pain. I have burned myself on several
occasions understanding that it was supposed to hurt but
not feeling the sensation of pain not to mention the bevy
of bruises that I can not explain how I got.
It seems that I have a very difficult time controlling what
I say whether in a business meeting or in intimate surroundings
I say EXACTLY what I think. I cannot control my mouth.
Weight issues seem to be a problem which may be due to Hyperinsulinism
[PMID: 10834520 & PMID 10640898] and there are other
endocrinological disorders that may surface such as diabetes
[PMID 10702732]. Epilepsy was never discussed as a possible
cause to some of the neuropathic pain I endure but the use
of Neurontin has causes the tingling and numb sensations
to subside [PMID 9744627] however there is still a core
pain running down my spine to my rib cage and when I get
cold the nerves start to constrict around my rib cage causing
difficulties in breathing. Not to mention that when I forget
to take my medicine I start to feel my nerves electrocuting
me with some days jolts of electricity running up and down
my right calf. To imagine what it’s like think back
to the first time you touched an electric fence then imagine
that you could never take your hand off that fence only
it started running through your whole body day after day…
night after night you suffer. It tells your stomach it’s
sick and it chokes you around your neck. You can’t
wear a bra because the weight of your chest is too much
for your shoulders to bear.
Fatigue is so permanent because you are trying to fight
the pain from controlling your body that nothing else around
you matters. The dishes don’t get done not because
you are lazy but because it hurts to move. Going to the
grocery store is an adventure and hey who doesn’t love
those hours wasting away in a doctor’s office. And
can we mention how great it was to be a boom for the Internet
industry and then not finding a job in time then being unable
to afford health insurance so it lapses and when you try
to afford it again you can’t have it because of a “preexisting
condition” and not signing up for some kind of disability
help because you don’t know who to turn to or you just
forgot because you are brain damaged and fighting pain.
I have problems with feeling as well as problems with temperature
[PMID 10640898]. When I get too cold a wave of unexplainable
malaise washes over me and the only thing I can to is lie
down and be still until heat begins to warm me up once again.
If I get too cold I just lay there and suffer wishing I
were dead because no one can tell me what is going on with
my body and the only thing I know is what I can feel.
Symptoms:
Pain
Memory problems
Headaches
Easy to bruise, hard to heal
Visual disturbances
Sensitivity to light and bad smells
Emotional problems
Irritability
Irritable bowels/Incontance
Hyper/Hypo
Sexual
Vomiting
Nausea
Dizziness
Balance Problems
Epilepsy?
Hot Flashes
Numbness and tingling
Memory problems
Overweight
Fatigue
Neck Pain
Problems thinking and concentrating
I am currently being seen at Harbor UCLA for evaluations
of having brain surgery. I hope that the connective tissues
of my brain can somehow regenerate or heal once the cyst
is aspirated and the electricity inside my head finds a
safer target instead of attacking healthy tissue that surrounds
it causing further root damage and psychosis. It’s
bad enough just being a Clay.
Catherine Clay
PO BOX 66820
Los Angeles, Ca 90066
310-827-7033
Friday
August 23, 2002
I
have done nothing today.
Unless
you count going to the sauna. Nothing at all. I slept and
slept and when I woke up I called Buzzy and she had also just
awakened from our outing. I don't think anyone could ask for
a better friend. She brought fresh OJ, Croissants, Peaches
and beets. It was a nice way to start the day I must say!
So
I woke up this morning in so much pain. It was horrific. It's
left me in a state of numbness but I was happy for the sun
and warmth which was unexpected when I unsealed myself from
my slumber. I was lying outside naked wondering who was going
to see me first, Thomas the bum whose boat is anchored near
the break wall. They towed his motorcycle yesterday because
he was evicted from the property. Then there is our next door
neighbor that always bangs on the door wanting to use the
phone. I didn't think he was going to be such a fucking pest
but yesterday he started screaming at Florent to get off the
phone and then stood around expecting him to get off the phone
and when he didn't he finally went away.
But
it was Buzz that got the full derrière. She giggled
when she saw me in all my glory. I did too.
Florent
gave me a lecture about spending time with the "bums"
and then when they were going to tow the motorcycle he ran
out to meet him with the dingie and then paddled his way back
here in the canoe. Then he told me that his heart was too
warm when he got back.
I
feel bad for Thomas and him being down on his luck but then
again he did it to himself. I can't help him anymore no matter
how entertaining he isn't. He's a windbag and talks and talks
and talks but sometimes he will listen. The other day when
they caught that Mako Shark 20 miles out he took me to the
dock so I could photograph the Shark. It was pretty amazing.
So
I have spent all day on the computer. BIG SHOCK! By the way
I finished a project at purephotography.com.
I bought arachnoidcyst.org
so I am gonna make something out of that.
No
bath. I know my breath reeks. I took half an elavil earlier
to see what would happen because after mind blowing sex last
night... wait... let me set the mood.
First
you have to understand the anatomy of a boat. My "bedroom"
is in the V-berth which is right under the bow or from of
the Sailboat. Florent has free reign over the rest of the
boat. I can see the TV and VCR which is off in the cubby hole
of the outside seat. His computer and his mess is out in the
living/dining area.
The
other day I was sick of Florence telling me how I was a miserable
person so I put my Christmas lights up and it's really nice
to be able to see everywhere now especially in the kitchen.
So I was all hot and steamy from the sauna/pool/Jacuzzi that
Buzzy and I did yesterday and I came in ready for action.
I started by licking along his hip muscle which is cut and
defined. I tickled him with my tongue on both sides. I was
fresh from the shower so he couldn't tell me no when I asked
for him to service me with his lips. It was so nice to feel
that kind of pleasure for a while. He was very excited when
he found the grape condom about 3 weeks ago and he always
knew it was there but I ignored him for the most part that
day. I did my deed and then I had the music, I turned the
lights on so that they matched the beat of my heart and then
we deavled into one another's bodies. The most pleasure might
have been when we finished and fell into each other's arms.
I crave that sensation most of all. The feeling of surrendering
and intimacy was nice on both our parts.
Sunday
August 15, 2002
It
was a most fabu day today. I went to the Farmer's Market with
Buzzy while Florent fixed a Mac. It was like St. James Art
Fair only it's every Sunday. I figured out that after getting
gussied up and going to dinner at Buzzy's we should spend
some time on the old Walk of Fame. It was fabulous. So fabulous
that I lost track of time and it was 1 am by the time we settled
down in the boat.
We
are starting to get along again. I am so happy. Buzzy made
this chicken that was to die for. She used some kind of special
recipe and soaked the chicken just a couple of hours. Naturally
there were these wonderful organic golden beets that we love
so much. Just a little sweet.
I
feel like the life I used to know is becoming a fading memory
as the new me is being born into this amazing creature. I
thought about it long and hard and I think when you have this
wiring problem in your brain it tends to make you flash back
and have hallucinations. I think it's a lot like being on
acid just a little bit all the time although I have never
been on acid so I don't really know.
I
am full of beets. And turnips. Florent went to the market
the other day and bought this exotic food he had never eaten.
I boiled it up with the beets that are just so yummy. Florent
told Thomas to quit taking our dingie. So at least now he
might become more of the gray ghost and leave us the fuck
alone so that things don't look so suspicious.
I
went to Miss Buzzy's today and she asked me if I wanted to
make a mosaic pot and I whipped one up by sundown. It has
3 flowers on it made from purple mirrors and then some china
and lots of lower pieces and a butterfly. I love it so much
I can't wait to grout it and finish getting it ready.
I
came home and rode the dingie out while the sun was setting.
I took photos of boats. It's a bittersweet symphony called
life...
Monday
August 26, 2002
I
am sure everyone dreams about a friend like Buzzy. I sit and
listen to her old rock and roll stories and sop them up with
a biscuit. To have lived through the whole Haight Ashbury
scene and having a daddy that was starting rock and roll is
something unimaginable even as I hear the words fall from
her lips. Looking at the photos with superstars amazes me
but what makes me even more happy are the little things that
Buzzy does to make my life more precious just because she
can.
It's
very hard to find people on this earth that truly care about
you like you were one of their own and I have found in Buzzy
one of the most honest, sincere and decent people that I have
ever met. She the one that plans the event and it all weaves
together like a silken rug on the rung of life. She's the
one with the bright colors to let you know that these times
are the best times because we are living in the moment and
that moment is more precious in time because it's a fabulous
moment to share because there are surfers pealing back a layer
bearing the supple fruit of flesh on a very muscular body
that takes half a parachute with a board and wind surfs with
the waves acting as a skateboarder's rail. Dancing, dancing,
dancing in the wind careful not to go too far but diving with
the dolphins.
The
beach was divine even though it was late in the day. Isolated,
30 miles up PCH right above Malibu is where we found some
solace from LA. Things so far apart. Me thinking my mind is
playing tricks on me and her being right about being able
to make it just a little further finding seashells and glass
to use on our pots. Seeing the half-naked, luscious surfer
boys with bleached out hair and Adonis bodies sent quivers
up and down my spine.
The
old me quickly becomes aroused knowing that one of them could
be mine for the night.
The
new me, the one that realizes that once upon a time when I
was more sane I married Florent for a reason and although
we go through hell (knock on wood not lately) I still think
back to the time when I used to be more like an adult and
have adult conversations instead of being the insipid idiot
I have become. I know I am still in here like one of those
boogie board body surfers waiting for the next big wave to
roll around in but most of the time it's too hard to come
out and I don't know if it's because I am frightened or just
waiting to be better.
Then
she said it to me and it fell on my head like a ton of bricks.
"You know just as well as anybody" which kind of
shattered my false sense of insecurity. I do know what's right
for me better than anybody and there are things that I sense
that other people ignore and life isn't about living in the
nicest house or knowing the most famous person because the
thing I have discovered about LA is that if you wait long
enough... something will happen but maybe it's not what you
expect but it will happen.
I
sat there and thought about a lot of things today on the beach.
I have pretty high values I like to maintain for the most
part but sometimes it comes into question and since my judgment
is off (something my mother always used to love to tell me
what was wrong with me). Thinking about how special Buzzy
is topped the list and even though she feels like she has
done some "questionable" things I can still see
that her ethics and moralism in dealing with people and how
she adds magic to their lives is a gift that should be treasured
more than she even gives herself credit for.
Now
she's not perfect because she can be hormonal like the rest
of us and she does not bullshit (one of the finest qualities
I find in a person) because she doesn't need to and "keeping
up with the lies is more work than telling the truth"
is a motto I have had to live by as well. But anywhere she
leads I will follow because I know she is a very strong woman
that I admire that can pour the goodness of her heart into
you whild kicking you in the ass right where you need it the
most.
I
think of all the fucked up relationshits I have had and how
friends I have had for years don't even care enough about
me to even e-mail me back to say fuck you or good bye. Just
"I know I have been a lousy friend" blah blah blah
blah blah. I've never met a stranger that helped me spend
all my money. Only Friends. I think about Jen and how of all
the people I thought I could trust the most while the Bodkin
is still embedded in my heart from her betrayal. I symbolically
take it out slitting my fingers, loving my blood understanding
that the kinds of friends I need are becoming shadows of a
past that is forgotten except to those that lived through
it or those living in towns where such relationships are still
an everyday part of life.
I
think that's why Tyler works so hard to keep his "friends"
involved in his business. I want to tell him that it might
blow up in his face but figure he'll ignore the warning considering
the source.
I
wrote a bunch of drug companies and asked them what kind of
drugs they are developing for my condition. I don't think
they like it when a consumer challenges them but I might as
well start somewhere.
I
think I might write a congressman or something while I am
at it. Become a disabled lobbyist on the steps of the capitol
building or a thorn in everyone's side until them shut me
the fuck up or I die first. It's not so much about me anymore
but everytime I read about one of the babies that has one
of these things in it's poor little head my heart stops because
I don't ever want any of them to have to suffer through this
much pain in order to build some semblance of a life just
to have it shattered again with lots of morons telling them
that an obstruction inside their head is not the reason they
have a pressure headaches and that certain foods and over
hydrating yourself can bring on more cerebral spinal fluid
which causes more pain.
I
don't think it will be cool for kids down the pike to lay
there wondering what is wrong with them when doctor's tell
them everything is OK when their bodies tell them something
else. Or even better I don't like the idea of anyone having
to suffer like I have suffered because there is no treatment
out there for this condition.
I
don't know what we are going to do but it looks like we might
be moving over to Hawaii each day. I don't need a hot and
happening life style with people that do not have the conception
of friendship. The bonds that I have been making are with
people that have their feet in the earth and heads in the
sky.
Matt
and Sue might be heading that way next year. I have met a
couple of people out there and I even have an aunt, my Grandfather's
sister who lives out there. Hopefully after my surgery I will
go back to being the person I was before this nightmare that
started over a year ago began. It would be nice to be able
to do things to return the kindness that is being poured into
me from people that show they care more than just by being
there. I know in my heart through that I can't be as good
a friend to Buzzy as she is being to me right now. It means
more to me as a woman, artist and friend because she just
keeps pouring more fabulousness into me and some days I have
to lament that I am not worthy even though deep down in my
heart I know I am because I fought so hard to this point in
life which is so precious to me, sloppily savoring memories
voraciously.
