Wednesday, July 25, 2007

Defining Self- post Diagnosis

Yesterday, I was talking to someone about redefining myself after Chiari.
Thought it would be an interesting topic for discussion here.

I know for me, I had already had to go through that awkward adolescent phase after I came into recovery for my eating disorder 10 years ago. I had to figure out who I was without the anorexia.

So I thought I was fairly confident in who I was by the time the news of Chiari came.

But once it got to the point I couldn't work anymore, I found myself once again, undefined.

Prior to Chiari, I was a student, a therapist, an intern, and strived to be the best at all my roles.

Then in what seemed like an instant, it all faded. I stayed in school to keep my insurance, but my drive was no longer there and my grades went to mediocre at best.

I had no identity.

I was stripped of everything, and left with only two roles in life; being sick, and a child of God.

And believe me, I wasn't like "WooHoo! It's just you and me God! How awesome!!"

No, I was far from it. Even though I clung to my relationship with my Lord, I still could help feeling somewhat abandoned.

How lonely that time was.

Sure I had a lot of support, and people who cared about me. But I still felt alone inside, not sure of what was to be expected.

And I even avoided the Chiari boards online. I didn't want to know what others were going through because I was afraid to know what my future looked like.

It came to the point that I realized that I had to redefine my definition of self.

Who am I?

Who am I with this?

This started a new journey.

One where I had to define myself my God's standards, not the worlds.

And the Christian community was not always supportive.

There are Christians out there that believe that illness is a direct result of sin, or separation from God.

How bogus.

God made this body, with the malformation.

So what do you do with that?

My redefining came from the struggle of life with Chiari.

I found myself in situations where I had to trust God solely to get me through.

And found through it, that my relationship with Him grew stronger.

I no longer felt alone, because He helped me feel the touches of all the hearts around me wanting to help......

Which I balked at first.

Miss Independent couldn't have someone help her with basic self care.

But I had no choice really.

And out of that lack of choice, I found that I had prided myself on something so selfish. I loved to help, but couldn't receive it. Which, when you think about it is crazy!

Anyhow, I babble sometimes relentlessly.

The point is, that through this process I found myself in a new place where I feel more in my own skin than ever before.

My roles, and who I based myself on before, did not give me the satisfaction that I sought.

But I didn't realize it, until I finally let go.

Tuesday, July 24, 2007

The Big ?: How much hair will they take?

I know when my sister faced a very serious brain surgery (Non-Chiari), involving a good chance of possible death, or further stroking, or rupturing of her anuerysm. She had only one question:
How much hair are you going to shave?

Sadly, this is a concern for many of us. I know it was one of my first questions when I faced my first surgery (decompression). And this concern came from someone who actually shaved her head in college to make a few more bucks for rent.

Surgery is important.

But hair loss is personal.

And especially since it is out of your control. You aren't going to the hair dresser, and saying go ahead and shave it. You are going under, knowing you will wake up with less hair.

It is a legitimate concern.

Experience has taught me, that surgeons aren't into shaving more than they have to.

I am sure the amount of hair is based on the surgeon, and the person......and possiblly based on what kind of mood the surgery prep guy is in at the time of hair removal.

For me it has been as followed:
PF Decompression: on the back of my head from the indent down was shaved.
Shunt: A small patch on the front right side, directly in line with my right eye on the very top of the scalp (it was completely not noticable on me)

Ironically, as I face sugery, I am thinking again: How much hair?

I am scheduled to have the ICT, which means two bolts in the sides of my head.
Then I have the PFR, which is the decompression in the back;
Plus they are using a skin graph, which is going further up the back.
And then they are putting in a drain (which mostly likely will go in the upper right side where my old shunt was, and there is already a hole in the scull)
And possiblly a shunt added to the mix.

It sorta sounds likemy head will be more shaved than not.

Anyhow, I sort freaked out the other day when I realized this could be the case......(when I was already in tears from pain, and pain anticipation, if you read my post on my other blog)

But now I am thinking I might turn this uncertainy around around.

I am asking the docs at TCI how much, and if more hair is being shaved than not, I might have it shaved the day before I go up so the hair could be donated.

It is a meek way to gain some control in the situation I am sure.........but it feels better to do it that way, then to wake up with crop circles.

If the hair removal will be minimal, I will just let my hair dresser deal with it post-op.

There is nothing quite as refreshing as post-op hair cut :) Specially since my hair is usually dry and dull the months after surgery.

Monday, July 23, 2007


ok, so I am starting this blog to create a place to ask questions, get answers, and share experiences.

Feel free to jump in at any time :)

If you would like to be able to submit your own posts to this site, please send me your email address to I welcome Chiarians to do this. It would just make this blog more enriched with ideas other than my own.

about me:

I am Queli, 33 female diagnosed in 1st of 5 surgeries was in June of 2002 (PF decompression), I have had a shunt, and then had it removed. I am scheduled for a revision on Sept 10th at TCI.

What about you?