Down the Rabbit Hole

If I had a world of my own, everything would be nonsense. Nothing would be what it is because everything would be what it isn't. And contrary-wise; what it is it wouldn't be, and what it wouldn't be, it would.- Alice in Wonderland

To label or not to label? That is the question.

“What labels me, negates me.”
― Friedrich Nietzsche


I’ve currently got my health diagnoses listed in my twitter bio. I’ve included that I’ve got: Crohn’s, Depression, Fibromyalgia. I did this to help others with similar conditions to find me/follow. It’s a great way to connect and is how I met the numerous Crohnies as well as others who are chronically ill. And as I’m learning, twitter is all about connecting/networking. It’s a great tool and I love the many people I’ve met, many of whom I follow for my varied interests (amongst which is health related, but it’s a very interesting and eclectic group)

Anyway, lately I’ve been thinking about my twitter bio and whether or not to remove the labels which identify me as someone who is chronically ill. On the one hand, it is a large part of my focus and what drew me to twitter in the first place. On the other hand, it brings me down each time I look at my bio, as it is a constant reminder of my illnesses.

The twitter bio is the first thing people read when choosing whom to follow (at least, that’s what I do, I read bios, cos I’m nosey like that, Ha!) anyway, I don’t just want to be thought of as someone who carries SO many illnesses. It’s a wonder more doctors and pharmaceuticals don’t follow me. Haha.

Though I follow A LOT of people I try my best to interact as much as possible. It’s a great way to bring myself out of my moods and also to distract myself from my pain.


To label or not to label? That is the question.

It’s all about how I identify. I am chronically ill, but that doesn’t define me. Hopefully by now, people who follow me have seen beyond that. The fact that they continue to follow, must say I’m not all that bad? lol

I don’t know where I’m going with this post. Feels more like a ramble.

I have to think about this more in depth. To get to the bottom (NO pun intended, Ha!) of what is bothering me about the labels/bio. Hmm. I feel it’s too limiting. And the bio is essentially a person’s first impression of me. It’s not until they (hopefully) interact with me that they can get a better idea of who I am. It’s not like I spend the majority of my time tweeting about my illness, symptoms, etc. I *could* just leave the #ChronicallyAwesome hashtag, which encompasses the illness but what goes beyond it. Hmm. I’m so tempted to go and remove those labels. Something to ponder.


I came across the Nietzsche quote as I was writing this:

” What labels me, negates me.”

This is exactly where I was going with the post. It perfectly encompasses how I’m feeling about labeling myself as someone who has SO many chronic illnesses. Because in doing so, I feel that the illnesses overtake me. And in doing that, I take away from who I am (whomever that may be).



For now I’m just Kat. aka. “Alice”.
A girl who fell down the rabbit hole,
got lost in Wonderland.
and is trying to make sense of things.

 

 

 

via: http://aliceincrohnsland.blogspot.com/2012/05/to-label-or-not-to-label-that-is.html

Chaos

Sunday, May 13, 2012


 

Surrealist figurative paintings by Lori Earley
* painting by Lori Earley




“You must have chaos within you
to give birth to a dancing star.”
― Friedrich Nietzsche


I took a break from writing because the tone felt too dark. Writing has been a very cathartic experience, yet it is uncovering wounds which will take time to heal.


Lately I have been feeling so melancholic. Some days I will wallow in the dark thoughts, yet I must remember and try to also look towards the light. I may be a pragmatist but I am also an optimist. While I acknowledge the therapeutic benefit of allowing myself to be vulnerable, I don’t want to just focus on the darkness.


I was inspired both by the painting and the quote, to help me focus on the light as well. I don’t want to get so lost inside myself, that I get lost in the darkness. It’s good for me to get in touch with , and work through, whatever inner turmoil I may be experiencing. I can identify and work through them. The ultimate understanding is the duality: in sorrow, pain, grief, there too shall be healing, happiness. I have to remind myself that how I’m feeling is only temporary.
 

that awkward phone call

Wednesday, May 9, 2012

 







That awkward phone call


that I just received
from a friend
I’ve had since the 5th grade.

Not said out right,
but clearly implied,
was,
” I miss you”.

The irony,
that just hours earlier,
I wrote a piece
about being missed.

So the phone call
was very awkward
and uncomfortable.

It ended awkwardly
with
“let me know when you are receiving visitors”.

Ouch! That really stung.

I was tense the whole time.

She brought up facebook
(on which I have gone M.I.A.
since summer of 2011!
at which point
I ran away to twitter)

You can run, but you can’t hide.
Life exists, and it is calling.

How much longer
can I stay
down this rabbit hole?
I like it down here,
in my world.
It is safe.


But my world
includes the people
whom I’ve excluded
pushed away
Hurt.

Because I am cognizant of how much I’ve hurt people.
And I feel so much guilt and shame over it.

I owe so many people apologies.

My departure was very sudden.

The onset of depression
crept over me
caught me unaware
so that it was a very
gradual process
that overtook me
in which I lost interest
in everything

Speaking to people
began to feel like a chore

So many questions
about how I was doing
every
single
day.

As if my pain
and my condition
miraculously improved
in the course of
24 hours

Then there was the energy
which I did not have
to reciprocate
and get involved
in their daily lives as well
to ask questions
to engage in conversations

I couldn’t engage in life

engaging
was so difficult
that I withdrew

so many unanswered calls
texts
emails

so many people
with whom I lost touch
people
who care about me
and must be feeling
hurt
confused
shunned

when they did nothing wrong


It’s not you, it’s me
it really is me.
Or my depression

Depression
that is like a
captor
that has me locked away
from reality
imprisoned

but eventually the captive
must be freed
if not by will
then by force

I have to fight back
I am fighting back
daily

I give myself credit for that
slowly I am coming out of it
that depression

I am not the person I was a year ago

the person who “ran away” from facebook
and the person I am now
are two completely separate individuals
and yet they aren’t

Is this a lie I am telling myself?

Is it that I am someone different
or that I am denying
and repressing a part of myself
the part
that is too painful
for me to acknowledge

There is a world out there
that I do belong to
whether I choose to accept it or not

While it is safe to be
down the rabbit hole
I can’t stay here forever
it is not therapeutic

I can’t hide behind
my diagnoses

And I realize now
that it is
exactly
what I’ve been doing

Yes,
I have PTSD
but how will I heal
if I don’t address my fears
my triggers

Because the people,
places
and things
which I am avoiding
are
the people
places
and
things
which I need in my life

Maybe this call was a reality check for me
a reminder that I am missed
because I am wanted
and because I want it too.

I want to rejoin the world
I have changed
each day I grow
I’ve met new people
but I can’t erase my past

Most importantly
I am not alone
I belong to a community
to my family
my friends

Even though I get in my way
though I lock myself up
and don’t allow anyone else in

I can’t blame the depression
it is not the captor
rather
it is me

I need to work on
bringing myself out
of this cage
and destroying it
to prevent myself
from feeling tempted

because once I lock myself up
it is so tempting
to throw away the key
and never
let myself out

yet that is no way
to live
and it is not what I want



via: http://aliceincrohnsland.blogspot.com/2012/05/that-awkward-phone-call.html

#WegoHealth: “You think you know, but you have no idea…”

Tuesday, May 8, 2012

#WegoHealth: “You think you know, but you have no idea…”

You think you know what it’s like to live with Crohn’s Disease; a chronic, invisible, incurable illness, but you have no idea.
 
 
You think you know what it’s like to miss me, but you have no idea what it’s like for me to miss myself.
 
 
[Image: 6-piece blue colored background with a Siamese cat. Top text reads: ’I miss you ):’. Bottom text reads “I miss me too”.]
I know that my illness affects other people too, but… come on. What do they expect in reply to this? “I’m sorry”? Folks, I have noticed that I pretty much no longer go outside, no matter how much they worry that I might have missed that fact. Thanks for reinforcing the unfairness of it all!
 
Those 3 dreaded words:
 
“I miss you.”
 
They make me feel resentment and sadness.
Because as much as you may miss me,
I miss myself even more.
 
Most people would feel some kind of relief at being missed by their loved ones and friends. It signifies we are important to that person. That our absence is felt from their life. Because of the positive impact we left on them.
 
But what happens when you suddenly become chronically ill, and who you are, becomes who you were?
 
It’s even more difficult when the chronic illness is also one which is invisible. Outward appearances are deceiving,
yet it is so difficult for so many who know me to grasp.
 
My outsides don’t match my insides.
I may look the same
but inside,
I’m a mess.
 
During this past year and a half I’ve been through a lot.
Much like a soldier who has gone to combat
and returns a shell of him/herself,
I too feel the change in me.
I am no longer who I was.
 
I miss who I used to be.
 
It’s horrible, because I know I can never go back.
I have a hard time looking at pictures of myself,
because I see a stranger.
It’s almost as if I disassociate because,
I know it’s me,
and at the same time,
she couldn’t be more of a stranger.
 
I grieve for her.
The Kat pre-surgery.
Whose life was about to change drastically.
Who was about to undergo
the most traumatic experience of her life.
 
A part of her died.
She was altered
fragmented
into
the before
and the after
 
So when you say you miss “me”
I feel sad and also afraid
because I don’t want to disappoint you.
You may think I’m strong
brave
courageous
cheerful
but inside I’m doing everything I can
to hold myself together
because I’m falling apart.
 
It’s hard to pretend I’m ok
when I’m not.
So I end up avoiding friends and family.
Because it’s too much work
to be pretend to be the Kat they know.
The one they are comfortable with.
The Kat who no longer exists.
 
I don’t want to worry anyone
or let anyone down.
I don’t want anyone’s pity.
So I retreat into myself
and shut myself away.
Because it’s so much easier
than putting on a fake smile,
and say I’m ok.
 
You think you know
what it’s like
to miss me,
as if I’m intentionally avoiding you.
When in reality,
I am protecting you
from seeing me fall apart,
from giving you the burden
of feeling you have to help
put me back together.
 
You think you know
what it’s like
to miss me,
but you have no idea
Because as much as you may miss me,
I miss myself even more.
 

down the rabbit hole of depression

Monday, May 7, 2012

down the rabbit hole of depression




unraveled
broken
sad
depressed
anxious
empty
emotional


I feel myself falling…
down…
down …
down…
spiraling
…out of control…


tumbling down
the rabbit hole
of
depression
















It happened so suddenly
I was fine on Friday.
I was ok Saturday morning.
But sometime later,
the physical pain
also became
emotional pain.


I find myself in this spot.
and don’t feel like talking to anyone.


I’m in my safe space
and I’ve withdrawn.
I feel so empty
sad,
melancholic,
tearful


depression isn’t something that can be easily explained or described,
you’ve either experienced it or you haven’t.
And if you haven’t, then you can’t understand
the agony,
the desperation,
the rawness.


I’m learning that I’m an extremist.
I’m either happy, or sad.
I need the in- between.
The normalcy.
I’d been experiencing a sense of contentment.
What changed?


It doesn’t make sense that I should go from one end of the emotional spectrum to the other.
After all, don’t most people exist in the “in -between”?
In the balance?


I’m not balanced.
I’m not whole.
I am not together.


I am fragile
I feel shattered
broken
lost
unraveled


I feel guilt and shame
So self-indulgent and self-centered
because I can’t give to anyone else
I have nothing to give
I can’t pretend I’m ok
I don’t want to upset others
I don’t want pity
I don’t feel sorry for myself


I would much rather experience the physical pain
at least there is something I can do about it
I know how to treat it




But this emotional pain
is unbearable
it’s got me in its grips
and won’t let go


I can’t distract myself
or ignore this pain
agony




I have this ability to get in touch with my pain
with my depression
I can go inside
and it scares me
what if the day comes when I’m unable to come out of it?




I’ve got a fresh wound that is bleeding
and I don’t know how to stop the blood


I feel dead
unhealable


It’s as if I’ve committed emotional suicide
 
 
via: http://aliceincrohnsland.blogspot.com/2012/05/down-rabbit-hole-of-depression.html

 
 
Can’t find a better way to describe how I’m feeling right now.
This song does it perfectly.

Song: Björk - So Broken (Unreleased)




Lyrics:
So broken
In pieces
My heart is so broken
I’m puzzling


Here I go
Trying to run ahead of that
Heart break train
Thinking
It will never catch up with me


I’m so broken
heðan-biður-afte-care
So broken
heðan-biður-afte-care
heðan-biður


I’m trying to land
This aeroplane of ours gracefully
But it seems just destined to crash


I’m so broken
heðan-biður-afte-care
My heart is so broken
heðan-biður-afte-care
How can, how can
And I sense


All continuity
Has vanished away
At one step at a time now baby, baby


I’m so broken
Heðan-liður-afte-care
I’m-m-m-mmm…so broken
Heðan-biður-afte-care
Yeah, ha-ee, ha-ee, ha-mmm


I’m so
Completely unhealable, baby




I’m so broken
heðan-biður-afte-care
So broken
heðan-biður-afte-care
heðan-biður

 

via: http://aliceincrohnsland.blogspot.com/2012/05/blog-post.html

#HAWMC Recap HAWMC: It’s not the End, It’s Only the Beginning

                                                                              finished  I am sad to say goodbye to April because it’s been a great month. My participation with #HAWMC pushed me to go outside of my self. Pushed boundaries. Helped me expose myself. Feel a little bit more comfortable with who I am and who I am becoming. Gave me a tiny push that has set a change into motion. A process within myself that I feel is taking place. I’m learning to open up more, to be ok with showing who I am to others. It has also been a great platform to get me out into the chronically awesome and health bloggers community.

Writing has been such a great tool for me to cope with my health. I hadn’t kept a journal though it had been suggested to me by my therapist. Having prompts helped in that I had a place from which to start. I don’t have any particular “favorite” prompt. Some were a lot easier to write than others. For example, Day 1: Time Capsule, was hard as it was my first ever blog post. But once I got over that, my writing process was set in motion.

There were a few blog posts which were difficult to write, as they stirred emotions within me. But I never held back. I embraced the writing style which best suits me, which is “stream of consciousness”. I allowed myself to be vulnerable, open, honest. I wrote for myself, not thinking about who would be reading my blog.

Having said that, the most difficult blog post was the Third Person Post: Kat and Sophia. It took me all day to write, because I had to keep stopping. I was very emotional and I even had a panic attack. Lots of tears were shed as this piece was written. This only goes to show that my writing is a great way for me to process what I’ve been through. It has been a very cathartic experience for me.

Participating with HAWMC has taught me that I need to write. Because there is so much I’ve kept inside for far too long. By writing, not only will I start healing, but I will also grow. it is my hope that maybe my writing and my experience will help someone else, to help them see that they are not alone. That there is hope. But ultimately, I will write to help myself. First and foremost. And that is ok. Actually, it is more than ok. It is empowering.

I can’t write this without expressing my gratitude to Jules, for giving me SO much support. She set me up as a “blogger in residency” on her website, What the Jules. By doing this she made it possible for me to have a space on which to write, and she also mentored me. I had never blogged or participated in any type of project, such as HAWMC. When I agreed to participate, I had so many doubts about whether I would be able to do this! And I did! I wrote a blog daily. For a whole month! And it wasn’t as challenging as I thought it would be. Most importantly, I did something which intimidated me. I was afraid, yet I did it anyway. And I can now say that I faced that fear and I survived!

This marks the end of my participation with HAWMC but it is only the beginning for me. Now that I’ve faced my fear, I plan to continue writing.

” I write because there is a voice within me that will not be still.”

I too have a voice within me that demands to be heard. We all have a voice, we all have our stories, and we deserve to be heard. I choose to use my experience as a tool to transform myself and grow. And each day I feel myself growing stronger and transforming into a chronically awesome individual who amongst other things, happens to have a chronic illness. I am discovering my gifts and talents. I have a chronic illness, but it does not have me. And that is a very powerful feeling.

@hipsteralice
Alice in Chron’sLand
April Blogger In Residency for

#HAWMC Day 29: Hipster Alice’s Six Sentence Story

Broken Girl

The girl went to the hospital, where she was told they’d fix her.

But like Humpty Dumpty, once they took her apart, they couldn’t put her back together again.

After two surgeries they were able to patch her up, but inside there was a void that went untended.

The girl who was discharged from the hospital, was unlike the one who had been admitted, because she was now broken.

As the year passed she began a descent down the rabbit hole of depression.

The broken girl got lost as she wandered around, until she met kind people who helped her find a way out.

annadoll2001:

Lukka Sigurdardottirs edible cake dress for Tom Pettys, Dont Come Around Here No More video.
This perturbed me greatly as a kid.

~~~~~~
Hipster Alice
Alice in Crohn’sLand
April Blogger In Residency for
wtj