Wednesday
December 5, 2001
"Jen's
coming home today! Jen's coming home today!" Where's your mommy?
Where's Jen?" I torment Heidi. She knows Jen is coming home
today and she is just the saddest thing I have ever seen.
I feel so fucking special I don't have words to express it.
Joe is here now and then Josh and Tanya showed up last night.
I started crying. They will be here soon so I should go bathe.
I want to write some of the horrible symptoms I am having but
I am feeling too good about myself to know that for some strange
reasons for the first time in my life a lot of the people I
truly care about are all going to meet today and that's kind
of strange in and of itself.
Poor, road weary Tanta. It's so nice to see her and Josh together.
It really makes me feel like I did something right... no...
something extraordinary.
Friday
December 7, 2001
So I have been shuffling the deck of cards for a while now,
putting all the symptoms of my disorder into place.
I had a lower GI to find out why I had blood in my bowels from
the time I was 18 until I was 20. I did not know this was a
symptom of Syringomyelia. I didn't know that my central nervous
system was dying and that's why I couldn't really feel it when
I broke my leg in 1996. I didn't know that the reason I had
"carprel tunnel syndrome"
Saturday
December 8, 2001
I woke up this morning like an angel. Jen bought me an electric
blanket. She came in the other day and she asked if I was here
and I had just quit my job at the tamale shop and I was laying
on the bed because I couldn't move.
Tamara came up to the store to relieve me. I couldn't do anything
at work. None of my regular duties and come to think of it I
haven't been able to do it right from the start but for a while
I could fake it. Not anymore.
Jen and Joe bought me that blanket. I told her I couldn't get
warm. I saw one at Costco and it was $80.
But ever since I have started to feel like I am not dying in
my sleep life has improved.
Florent and I made love this morning. It was sweet. I wish I
could have gone into more details about our love life. But...
some things I have kept to myself and others I have hand written
in a sex journal I wanted to give to him.
I have gone through a lot of emotions this last week. The feelings
that hurt the most are not only the ones that make me feel betrayed
by my doctors. I mean if you find a pocket of spinal fluid in
someone's brain where did it fucking come from? Their lungs?
No the thoughts that hurt the most are thinking about how much
it's going to hurt Florent. I would have NEVER gotten married
or done half the shit I have done if I knew I was truly endangering
my life, take scuba diving for example. I would have paid people
to move me no matter what.
Florent
crying telling me he was hurt. "Baby, you never told me you
were sick!"
"I
didn't know! I told you I had brain surgery!"
"Yes
you told me you had brain surgery but you said you were better!"
It's really hard to deal with that kind of stuff. It really
hurt to lay there crying out to Jen that I was dying from this
dreadful disease and looking at Charles telling me not to freak
out when I know I can tell my nervous system is dying. I don't
know how in the hell I have taken care of myself, ever.
I also hate it that I am going to have to become so dependent
on all my friends for different things.
I hope to god this gets published so someday people realize
how much it sucks having neurological problems and how you can
never really relate to healthy people because you know how sick
you really are.
So I have been thinking about how much money I hope someone
gets because of all this trauma I have lived through. I hope
to god I can sue some of the doctors that took care of me because
I ruined my husband's life.
Buddy had a party last night. I am starting to wonder more and
more about my ability to keep it together. Some times I hear
things that people didn't really say. It's really starting to
disturb me.
I am beginning to think it's not so important if I become famous
before I die because all the people that have touched my lives
will be better off. I need to start printing my own work while
I still can.
I need to go through my diary and clean it up. I need some time
to myself just to calm down a little.
I talked to Granny the other day. I told her I was sick. I told
her how I was sick and that I thought I was never healthy. I
don't think that surprised her. I think Thomas has the same
disease. I think it's hereditary from back when the Clay's married
sisters and those cousins had babies. Maybe it's not such a
bad thing. Maybe it just stimulates a different part of my brain
and makes me use more of it.
That's something that scares the living fuck out of me. What
happens if they cut my head open and I lose my intelligence.
I understand that right now that if I have a Chari Malformation,
which I think I do, it feels like it because there is a constant
stabbing in the back of my head and my shoulders constantly
burn as if there were microscopic needle burrs running down
my arms and to my hands and through my neck.
I don't think I am going to talk about it anymore. It seems
that everyone gets really fucked up and no one wants to hear
about how I truly feel. I guess I can write about it but I feel
like everyone around me not only doesn't want to believe this
but they want to pretend that I am like they are.
I guess I have my husband and he can share my misery and for
everyone else I will just act like I am fine like I always have.
Hey maybe if I live in denial too I can live a normal life and
act like everything is just going to work itself out.
I feel pretty much alone but it's not like that is anything
new.
Sunday
December 9, 2001
I realize that I am freaking out. And there right now there
is a 50/50 chance I'm just panicking but when I am laying in
my bed and I can't move it makes me suspect there is really
something wrong.
But then I stop and I start to allow myself to FEEL what's going
on and the lies I have told myself disregarding what's going
on with my body. I know that I am not always this sore. I know
I am not always this tired. I know that when it gets cold, it
feels like every part of my body is clenching up.
I know I let people take advantage of me because I am in so
much pain all the time that it's easier to be taken advantage
of then it is to fight because I am fighting for my life on
a daily basis. Fighting to manage the excruciating pain that
is becoming unbearable to control anymore. The "tendonitis"
that hasn't gone away in 2 years and the "carprel tunnel syndrome"
have been my nerves dying.
Not to mention that it's becoming harder and harder to hold
my own head up. When I get cold I feel like a baby because I'm
paralyzed.
Unfortunately Joe was here to see all this and I was not my
stellar hostess that I usually am. It makes me sad that I couldn't
do many of the Hollywood things that are fun although we did
go to Muholland Drive and stare at the sign.
Last week when he was here I would just crawl into bed and melt
into the mattress losing consciousness into a comforting coma
sleep that has been eluding me. Jen thinks it's all because
they took my car away. That I have been under so much distress
that it all started there.
I looked at her and said "When mom was sick and Anne was sick
and I was sick, that was stress. I promised myself then that
I wouldn't stress out about BS because nothing can compare to
that kind of stress."
And I don't stress as much as I think other people do. Yes I
did cry when they took my car away but that was because I had
done EVERYTHING they told me to. I was playing by the rules
and trying to be a decent person and it didn't matter because
I was still fucked.
Wednesday
December 12, 2001
God... this is getting creepy. I know I updated yesterday but
for some reason...
Oh well. I am soooooooooo sick right now.
Diana is the only person to actually read the description of
this disease and say "that sounds like you" instead of "wait
until you get a diagnosis."
Excuse me but I am living in this body. I don't think I need
a fucking doctor to tell me that my god damn nervous system
is dying. I keep going back in my head over the *sure signs*
like walking on my fucking leg broken. Then there is the gall
stone I had. That mother fucker was so big my family doctor
couldn't understand how I could bear the pain.
That's because I can't feel it. But I can feel myself dying.
I think I took the razor blade and cut the back of my head when
I was 18 because I could tell that's where the pain was and
NOBODY did FUCKING JACK SHIT ABOUT IT. No one checked my spine
even though I had 4 CCs of fluid INSIDE MY FUCKING BRAIN.
I don't think I am being irrational. I think I am being the
most rational person considering I know what it feels like to
die this horrible painful numbing death that is not understood.
This morning I woke up because my electric blanket went off
and I got COLD and I couldn't warm back up. I had to jump into
a hot bath.
Florent tells me that I have lizard skin. He wants me to get
better because he doesn't like making love to a lizard (he said
it jokingly) but I understand his point. I don't sweat like
normal people. I dont' think I ever have.
If you don't want to be depressed I think you should quit reading
for a while because I am going to go down into the abyss with
this so that people fucking know how horrible it is to have
your body dying from this disease.
Friday
December 14, 2001
I'm going through heightened states of demitia now. The moments
that are lucid are saved for working hours. I go home and sleep.
I slept almost all night last night only waking up long enough
to get a new electric blanket at K-mart in Inglewood because
the other one from Costco went off in the middle of the night.
It's a shame because that one was so soft but this new one has
heat settings up to 22!
I have health insurance starting tomorrow.
I feel like I'm starting to contort my body to the left to somehow
control the pain that my back is putting into me.
I must say it's nice to feel loved. Especially from my family.
Anne was telling me how we needed to e-mail each other more
often. This was the last response I got from her.
YOU
ARE NOT A GOD DAMN DOCTOR
-----
Original Message -----
From: catherine clay
To: Anne Clay
Sent: Wednesday, December 12, 2001 3:17 PM
Subject: Re:
dont
be scared
what is the worst thing that can happen
hmm...
my spinal cord could be melting away, my nervous system could
be dying, I am going to have to have brain surgery again and
what if I don't recognize my husband or my family when I wake
up. What if I die from this horribly painful death before I
am 30. I think I can forget about ever having kids because my
spine is barely supporting me. I can't work out because I'm
afraid that if I life something or sneeze or cough the wrong
way I'll become paralyzed. Then I won't be able to kill myself
because I'll be a crip. (Gee, if I have this disease at least
now you will all know that when I tried to kill myself the first
time it was to spare myself this agony) I could never ride a
horse again, a roller coaster, a bike, I shouldn't ride in a
car in case someone hits me and takes 3 years off what little
life I have left.
(it
gets a lot worse but since you know just a little bit I'll spare
you the absolute horror)
when
you answer that
then think of something comforting
Well
hey, I always wanted to be a morphine addict. And let's face
it, I can't wait to shoot dilauded. And hey... I never knew
that having my diapers changed would be a fetish.
that
fear.......it is like a big wave for me
and i ride along side it
and it makes me stronger
Nothing
is going to make me stronger until the doctor tells me I do
have this disease because then I am going to unleash what fury
I can while I'm still physically able.
do
not be afraid of what you do not know
just remember
it could be anything
It's
not anything, it's my life. It's been my life all the time.
How else can you explain walking on a broken foot in Moscow
or having a gallstone so big Dr. Little was amazed that it didn't
bother me sooner.
I'm
scared Anne because I can fucking feel my nerves dying and it
HURTS LIKE HELL and there is NOTHING ANYBODY can do to stop
it. There is no cure for this. They maybe operate and relieve
the pressure in your brain but the only thing they can to *possibly*
do to treat this is stem cell research. Maybe they can inject
cells into my spinal cord so it will regenerate and that's the
most we can hope for. Otherwise it's time to spend a lot of
fucking time together because it's better to do things while
I still can.
So years from now when someone knows they have this disease
they can know they are not alone in their absolute feelings
of loneliness and inadequacies. The hardest problem I have ever
had is making someone fucking believe there was something seriously
wrong with me so hopefully next week I can either be in a real
emergency room and getting the care I need before this disease
progresses any further.
I just want the fucking headaches to stop. I can't imagine what
it's like to live a life free from this kind of pain.
* * *
I am trying to think of how I am going to describe this disease
to my new neurologist. I read through Dr. Simon's notes. She's
such a stupid cunt. There are several years where I was complaining
about the pain in my neck and she never did anything about it.
I am the embodiment of Syringomyelia. You can go through my
diary and read when things started to happen. I'm glad I kept
my own little notes to go along with hers. I think I have to
do some research so I can match my notes to hers and see what
I wrote about the days I went to go see her.
I just don't have the strength to do much of anything these
days.
Sunday
December 16, 2001
I'm
really sick. I have no control over the things coming out of
my mouth now. So it's a really tough time. My vision goes between
being extremely blurry to 10/20. My head hurts all the time.
It hurts to type. I'm always cold and Florent is constantly
bitching at me.
He told me tonight that I embarrassed him tonight in front of
everyone. I asked him to let me sit down and he wouldn't. So
I sat on him and somehow ended up hurting his hand. I was trying
to be a smart ass but it escalated into this weird bad feeling
I have in the pit of my stomach. Maybe it was better when I
didn't talk about what I am going through. Maybe it was just
easier for people to ignore because I still participated and
now it's obvious that I can't.
I woke up this morning and was delirious. Too tired from Christmas
shopping yesterday with Jen. It was nice to get out for a change
but still it left me feeling like I was dragged through a pool
of mud. Not to mention today is the worst day of my cycle.
I have no energy. I'm losing my balance. I can not support my
body anymore. I should be in a wheel chair already because it
takes too much energy to move my body. I don't drink anymore
because it takes too much energy to even drink a glass of wine.
I can't recover it.
Coke and coffee are the only things that make me feel awake.
I can't stand watching TV so much anymore. I really miss my
laptop.
I'm sad for Florent. I'm sad because I know how awful it is
to be married to someone with neurological problems. I am never
the same person. I'm always changing my mind. I'm having a hard
time taking in new information so I am not over stimulating
myself.
I
am very fragile right now. I made lasagna tonight. It was from
mostly organic items. I hope I get to see a doctor this week.
I can't take much more of this.
Thursday
December 20, 2001
I was paralyzed from the neck down on Monday. I just got out
of the hospital today. Lots of morphine later... there is something
seriously wrong with me.
Friday
December 21, 2001
I'm dying.
I'm dying and there is nothing anybody can do to stop it. I
don't know if I have Syringomyelia anymore but it's more feasible
to believe I have Arachnoiditis.
The paralysis, the pain that caused me to try and kill myself
when I was 19 and slash my head open when I was 18... those
things aren't in my head.
Josh has a friend here, Marshall, who came by last night. We
were talking about things. I know I haven't progressed as far
as I can. I know I can get a lot sicker but I am pretty sick
now. I can't hold my life together. I can't remember things
or I have conversations that I had with people that didn't really
happen.
This morning I was having a dream. It was such a great dream.
Marshall said he was surprised I wasn't depressed.
I'm not depressed. Even though I know I am dying, I fucking
feel it, I remember that I have tried to live my life in a manner
in which people can look back and have mostly nice things to
say about me. I have tried to live a Christian life the best
way I could. Sometimes you have to use the tools you have got.
I am in so much pain I can't stand it. When things are quiet
usually after Florent and I have argued and I think about all
the hell I am putting everyone thought right now I think about
dying. In a way I am hurt because Florent is so busy dealing
with all the shit that he forgets I am still here and I have
feelings that I can't express because the pain is just too much
to express.
I never thought I would be like this. Creeping closer to my
death day by painful day closer to being paralyzed from the
neck down.
I guess it's not too bad that I become paralyzed because at
least then I can't feel the pain. But once I start to come out
of my temporary boughts of paralysis the pain is blinding exquisite.
Florent is taking care of me. I've turned into a helpless child
who is losing my mind.
Saturday
December 22, 2001
I am a vegtable. I cut myself this morning using a knife trying
to make myself some juice. No more sharp objects. I'm humiliated.
At least I can still wipe my own ass.
I can focus long enough... I need to start videoing my diary
or recording it because it hurts to type. It's like I push down
on the keyboard and that hurts and then the nerves send back
pain so it's like I'm hitting myself and then I'm hitting me
too.
After that I sat in front of the heater for a while and when
I couldn't hold my body up any longer I came to lay down. I've
been in bed ever since except to go to the bathroom.
I see the reflection of a wraith when I look in the mirror.
I don't know how I can be losing weight laying in bed all the
time.
I can't bear Florent's weight on top of my body and he only
wighs 125 pounds. I can't think clearly. It's like every thought
I have is layering on top of a previous one and I have to fight
to maintain this much. I close my eyes and all the thoughts
become voices representing me at different stages of my life.
That is very painful because there is no clear thinking. I know
I have become subhuman in a way because nothing coming out of
my mouth is real.
I woke up from my nap today and the deamons spewed forth with
a fury unlike before. I feel sorry for Florent. I can't control
anything anymore.
Oh well. I guess I got the best out of life when I had the chance.
Now I'll end up on a Morphine pump for the worst of it and I'm
not even 30.
Monday
December 24, 2001
I've actually been adding things to my web page.
I usually like to make a Christmas
present every year. So I added that.
We had lunch with Jen and Charles today. She's upset because
I lost her Eurail ticket and they found it at Bob Howard but
then "someone threw it away". She said she really wanted to
be mad at me. She told me Jenna was getting pissed off at the
e-mails I was sending her so when she left I just sat here and
cried.
I cry all the time. Especially when I am alone. I don't know
how my mom was so sick for all those years and she wouldn't
sit around and cry but I don't think she hurt the same way I
do. There is no relief.
I just want to crawl into a hole and forget about everything
going on around me. People smile on TV and live their lives
with something of an empty soul but mine is still burning bright
and strong even if I can't move or think properly anymore.
Diana thinks I should call my dad. What do I say? "Hey, Merry
Christmas, I'm dying?" Florent is home so I have to quit crying.
* * *
We just had our Christmas. I got him a punching bag and now
I have a cordless mouse and keyboard. God I love this.
I just took some Aleve and Robitussen. The Robitussen is doing
wonders. I don't feel like my brain is choking now. It's like
the immflamed tissue has settled down a bit and now my body
is sighing relief because it can breathe.
I don't feel so stupid now either. I don't know how long this
cure is going to work but I feel like a wave of relief has just
washed over my body. I feel like I can think clearly now too.
This is so weird.
I don't know what I would do if I were stupid and didn't read
and read and read. I can't imagine how other people suffer this
disease without any relief because it sure doesn't seem like
the medical community knows how to deal with this disease.
This is the first time in weeks I have felt even half way normal.
I feel like I have been clinging to life all day. I was sad
earlier because I didn't want to spend my Christmas in the hospital
and now maybe I can build my strength back up a bit more.
You just have no idea how wiped out I get when that membrane
becomes inflammed.
Tuesday
December 25, 2001
Holy shit I'm going to live!
You have no idea how close to dying I was. My body was shutting
down. I couldn't feel my body around me because my brain was
being deprived of oxygen and nutrients. I couldn't talk right.
Before Jen left yesterday she looked at me and told me to go
lay down in my bed because "You don't look so good."
I don't think that I am 100% and there is certainly something
wrong with me but hey, I feel like participating in life again
where as yesterday I couldn't even think about leving the house
to even go see a movie.
Life is fucked up and medical science as far as I am concerned
is still in the dark ages.
I have never felt so close to death before in my life. It was
like I had this echo in the back of my head screaming "you're
dying" until it was so loud I couldn't feel anything else but
that.
Florent made me feel bad. He's really good at that lately because
I was describing how I felt last night to him and he stopped
me and told me that he didn't want to know.
God, I can't describe the difference from yesterday. I really
felt like I was a goner and I know even though I found a remedy
that doesn't mean that everything is ok but at least now maybe
I can participate in life a little more. Or maybe I should say
at least now I have some time to make some kind of impact. And
maybe I am still dying but at least the pain isn't intolerable
now and I actually have some hope where as yesterday I was taking
each day as it came.
Saturday
December 26, 2001
What it feels like when the pain goes away.
God... I feel like an open wound right now. I have read and
read and read about Arachnoiditis and I know which ever disease
I have is incurable.
And that all these years of me smoking pot and taking vitamin
B6 have made a huge difference.
I lost some brain power. I'm thinking clearly but at the same
time I can tell there is something really wrong.
I feel like the reeper had his bony fingers on my spine and
in my brain yesterday. When I drank the cough syrup it immediately
took the inflammation down. And I can tell when I need to take
more because I start feeling woozy.
It's
actually still Christmas but I wanted to write something and
I doubt I will have the energy to do so tomorrow because I will
be tired from working. I called my Granny. I called my sisters.
We all chatted about what's going on in our lived.
My brother in law had back surgery so he's really sick right
now. I bet he has the same disease I do. I'm beginning to wonder
if mom was maybe exposed to something in the military while
she was pregnant with me. Or if she took some strange German
drug that might cause this affliction.
I read about a mother who did a test and they found an arachnoid
cyst in its brain. I started to write her a long letter about
what it does to your body. I sent it and was very happy to have
it bounce back to my mailbox.
Right now my vision is weird. I feel very strange.
So this disease... it's in the purest part of your body. The
arachnoid membrane is what carries all your messages to your
brain. It's the root of who you fundamentally are. They have
debated for years where your personality starts. I can guarentee
you it's in the arachnoid membrane because this disease effects
everything I do from typing to eating to thinking.
Some people get adhesions in this area and that's what starts
to cause problems for us when we are old. For some of us, it
affects us when we are younger. I think everyone might have
a mild form of this disease that you get just from the normal
wear and tear of your body.
I was so close to dying. I can't believe fucking cough syrup
helped the inflammation. I can live with the pain for now.
I have kept this diary to show in a way how far back I started
to lose it. I think when I am just reporting on the condition
of things I wasn't feeling well and it was just easier to write
about nothing. No substance. No umph. No life. I hope it's apparent
when that happens.
So this disease... It effects everything. All your internal
organs everything that makes you you.
I feel like the puzzle that has been my life is finally starting
to come together. That all the things I did I did for a reason
and that reason is that I am worth every letter, every phrase,
every emotion, everything you have read in these pages comes
from someone who had a taste of her own mortality when she was
18 and lived a life where I can look back and say "I was good
to people and I had a positive impact on the people I touched."
That's what life's all about in my opinion no more and no less.
I must say that I think I picked the right husband. I felt like
a modern day princess whose prince gives her the magic exlir
to keep her from falling into a deep, deep sleep.
We spent the earlier part of the day caressing each other's
bodies. It was very nice to be intimate and have a screaming
orgasm since there are no room mates and Buddy is gone.
We laid around and talked for hours. I'm very lucky Florent
loves me so much.
I feel in a way like this fog in front of my consciousness has
been lifted and I am thinking more clearly even if I repeat
myself. Got to love that.
I have been thinking about the time I have had between now and
when I tried to kill myself and I am very happy that I got my
little fairy tale. Even if the princess is demented.
Thursday
December 27, 2001
I know I must seem crazy these days but it really sucks not
having any info about what an arachnoid cyst does to you as
you age. I have heard all kinds of things lately like cancer
is wrose than this but I started reading more and more about
the brain.
The arachnoid membrane is the most pristine part of your body.
It's what all your electriacal messages must pass through in
order to make you walk, talk, breathe and what have you. It's
where the roots of your nervous system are.
So I'm thinking that if the cyst used to be 3 cm by 3 cm where
did all the extra tissue go? And what did it pull on while it
was shrinking. Plus where this cyst is it sits right on top
of where my spinal cord meets my brain.
I talked to a nurse from the NIH today and told her the difficulties
I was having.
I'm going to send my scans and medical history to them to see
if someone will study me because I am honestly not happy with
"I don't understand why you still have headaches." and people
not knowing what this thing is going to do as I age.
I'm fasting now trying to get all the junk out of my system.
I am going to try to start all over again in a week and switch
to a vegan diet. I think that the hormoanes they put in cattle
and chickens and stuff are toxic to our systems.
So right now at least I don't feel like I am dying.
But my spine hurts a lot.
And I think that they don't know what's going to happen to me
but I have a feeling this is a degnerative disease and if I
am feeling strange symptoms now and I'm not even 30 then as
I age I will certainly end up in a wheel chair.
The hardest problem I have had lately is with the pain. Nothing
takes it away.
I think my lifestyle is going to change dramatically as well.
I'm not going to do things I don't want to do.
Friday
December 28, 2001
I've been working from home the last 2 days which is a total
god send. I can lay in front of the computer Florent built me
and work and work and work. It's nice.
I'm still fasting although I broke down and ate a mango today.
I think they are right when they say that fasting brings you
peace of mind. The other day when I awoke from the fog my brain
was just like "get the shit out of your system."
I'm very goal oriented and I am being positive by thinking that
once it warms up some more I will start to feel better. I hope
to god I can spend next winter somewhere much warmer if this
is the case because I honestly can't deal with having my body
react to the cold in such a manner. It's horrible and tragically
enough it's not that cold here in LA.
I can't imagine right now what it's like to run powdery snow
through your fingertips. Just the thought of it sends chills
up my spine.
My grandfather is very ill and can not dress himself. I wish
I could go out there but I'm doing well enough to take care
of myself and I honestly can't take care of myself myself anymore.
Florent is doing all the housework. I'm not cleaning or washing
or anything. I barely get out of bed but I think this is the
best way to come out of this thing.
I am being forced to take care of myself and I hate it but in
a way it's nice to relax.
I have come to the conclusion that all doctors are complete
morons. They see you for 10 minutes and you tell them what's
going on and they made an immediate assessment of you and don't
contemplate the changes that might be going on in your body.
I know I am not crazy... well not in the sense that is typically
so but more in the sense that I have certain neurological difficulties
that I am finally starting to recognize.
Maybe Dr. Bergandi was right and I should go to school to become
a psychologist or something. I think that if I am ever incapaciated
or paralyzed that wouldn't be such a bad goal to obtain.
And
maybe I am not happy about some of the things going on in my
life right now which could lead to another reason this all started
to happen. Maybe I have a problem when I am under too much stress
it zaps my head and makes me freak.
I dunno. But I do know that I am working on becoming healthy
unlike I have ever done before.
