Velveteen Rabbit

Ruffled, worn, and falling apart, the velveteen rabbit rest speechless on the floor.

The trip has been exhausting, and the journey long.

Each gentle guiding stroke, is now obvious from the prevalent bare areas where fur once lay, soft and clean.

The fur that remains is now dull and blemished.

The process of becoming real is not so pretty :(

I can't help but look towards surgery, and be reminded of the velveteen rabbit.

My body is worn, ruffled, and falling apart. And it will only feel and look worse in the weeks to come.

What will come from it though is one more step towards what God planned for me to be.

A lot of people think Chiari falls outside of the grace of God; outside of His original plan for me; not what He wanted for his child.

I don't agree.

Although the journey has been long, and its trials evident in my worn fur.........it has all been a series of AFGOs leading me to the raw realness of who I am to become.

AFGOs for those who don't know me, stand for Another Freakin Growth Opportunity. Ofcourse the original version of that I was given has been cleaned for all eyes and ears to take, but either works.

Life is full of AFGOs.

Ugly, painful, wonderful, AFGOs which both make and break us.

Yes make AND break.

Not either or.

Refinement burns out the ugly dark pieces. It isn't a gentle process that you come out of unscathed.

The breaks and tears are important; they are Gods wind for us, making our root in Him stronger.

Never feel sorry for me for having this condition. It isn't as debilitating as it is abilitating.

It has taught me far more than words or teachings ever could.

It has planted me stronger in my faith, and brought me closer to God.

But don't expect me to face each new AFGO with a grin on my face.

I don't like 'em.

There, I said it.

AFGOs suck!

They are uncomfortable, usually painful, and during undesirable times.

They are meant to shed off that next layer to get to the core. And like an onion, as the layers are removed, tears may result.

And this week(or next, I am sure) "How are you?" isn't the best way to greet me if tears make you uncomfortable.

I am emotional, almost bipolar, in fact, in my degrees of emotion.

I'm am smack dab in the middle of an AFGO, and let's be real; I ain't happy about it.

But I do still have joy. Joy in the knowledge that I am held to a greater purpose than this body can possibly restrict me from.

I know that there is good on the otherside of this mountain.

So a better way to greet me perhaps it to just say "keep climbing".

I am almost at the peak, where I will be able to see the road for miles ahead.

Until ofcourse, I hit the next mountain. Unfortunately our lives are not made of one big test, but a series of 'em....... us humans aren't necessarily the quick learns as we think we are.

So feel free to join me on this journey ahead............just know you might see tears along the way........and that's okay.

I gotta mountain to climb.

Ofcourse, if someone has a drill to go right through it, I will take that too.........

But for now, I'll keep climbing, loosing some fur along the way (Huge hunk from the back of my head to be exact) Each step to becoming more authentic in my walk.

Sorry this blog is so full of metaphors...........just thought you all could relate more than you could to brain surgery. We haven't all had someone drill into our sculls, but we have all been on this journey.

Take care of you,

Q

2nd Opinion

Well I had my consult at Hopkins today.........

I'll just say, TCI makes all others pale in comparison no matter what.

However, the experience was interesting. The guy was double booked every 15 minutes.

So I waited for 2 hours for my, what turned out to be, 5 minute consult.

Unimpressed.

How could I be thought after TCI took such care in making sure they had all the testing done just right, and had an entire Chiari crew.

All in all, I am glad I went today.

It just made me glad I found TCI.

Yeah, the situation about surgery is irking me to no end...... but as far as Chiari, these guys know their stuff.

And something I found out is important when you are having major surgery.........they are human, and treat their patients human also.

Surgery: 2 B or Not 2 B

So I got this letter from my surgeon saying that TCI has decided that before treating me surgically, they have to send Spetzler a letter describing what their impression and findings are.
Then, if HE decides to resign from the case....THEN they will treat me.
It doesn't say they are even asking him to resign.
It sounds more like they are treating it like they are consulting with him.
The same guy who screwed up in the first place.

The message I didn't send let's you understand a little of why I can't stop crying.

First of all, this is what I want you and your partner to understand. Dr Spetzler is highly regarded in the field of neurosurgery. I don’t want to be disrespectful, because the guy does save lives, but that was not my experience. My experience was quite opposite.

I used to cry before having to go see Spetzler. I moved across the US to be able to have the freedom to see another surgeon, because once I stepped into Spetzlers door, no one would even offer second opinions beyond “Well if Spetzler says you need surgery, he would know”
And as naive as I was at that time, I felt safe that everyone trusted him so much.

I am so trusting anymore. Even though I felt very positive about TCI, I am still going to Hopkins to see what they have to say.
And because of that he is.no longer my surgeon.
And whether he has signed off on that or not, it isn’t his decision to make.

What I did end up sending is this:

I don’t understand what the reasoning would be behind contacting the surgeon that screwed up to get his “go-ahead”. I realize there must be more to this that I don’t know about, but I am baffled.
Please explain, or feel free to forward this message to someone who can.

I am such a wimp.

Anyways, anyone ever heard of surgeons contacting the guy who screwed up for permission to take over.
This sounds like the same political junk, that made me need to relocate across country just to get someone else to see me. The only second opinion I have gotten since the day I stepped through Spetzlers door is, "Well if Spetzler say so"

I am devastated.
This guys ego is larger than I have ever seen, and I doubt he would just resign. He would never believe someone else could do anything better than he, The Great Spetzler.

God does all thing for good, for those that love him.

I know this.

But right now, I don't understand

Zipperheads

Check out my new blog at http://imzipped.blogspot.com/

Feel free to send me your email address to my junk email account: queli.is@gmail.com
to become a post-er on this site. Please put Unzipped in the subject line.

Take care of you,
Q

Do the Jitterbug

Did that song have anything to do with the butterflies in my stomach?


So the peace collapsed some tonight. It was weird because the crash caught me off guard. I was fine, and then in tears.

I'm like manic-depressive the days prior to any surgery. Happy and excited at the prospect of hope one minute, and then sobbing the next when I least expect it.

Honestly, I have been shocked by the peace I have had.

I cried at church this week.......because they just happen to have to have an entire series on The Roadmap to Peace, just a month from surgery..........and I was so awed about how I was able to have peace despite the circumstances. Really it is amazing to know that the road ahead contains some serious pain...........but be ok anyhow!

The peace is awesome!!!!

So tears ofcourse floored me.

I was irritated about being in pain.....and then for some reason let the thought of how much pain surgery is (you gotta remember, I had this surgery before, so I unfortunately know this).......and I got scared again.......and that fear came out in streams for a little while.

But they are gone now. So don't worry needing to cheer me up.

As I have said before, I am spoiled, and God doesn't let it touch me for long.

I am just practicing sharing my feelings, like I have been known to tell others to do :)

Anyhow, I have been scoping out the Internet for deals on hotels in the Long Island area, and still have found nothing worth mentioning. I am not thinking that the place I was hoping to stay will work, and I really want someone with me. Why is NYC so expensive?!!!!! Why couldn't The Chiari Institute be in some small town in NC where hotels and food are cheap? At least then, all I would be worried about is what ever the insurance won't pay.

My mother will most likely be traveling between NY and MD most of the time. It is really too long to leave Robin with my grandmother. For those that don't know, that is my sister that had a brain injury a while back due to an aneurysm------and no, I have already checked with my parents; they did not do drugs, nor are they siblings. At least, so they say.......

I am trying to fly my friend Jen out so she can stay with me especially during the time after I get out of the hospital, but need to stay in NY. My mother has to be back in MD the following weekend, and who knows I might be out of the hospital by then and in some hotel waiting to be oked to go back to Maryland.

Anyhow, fundraising ideas.........please start coming. I doubt that many people are going to buy Chiari t-shirts, clock, and mugs.

Luckily, it's a rare condition, so there just isn't the audience for the product. Those reading with Chiari......see the link to the right :)

I have come up with a really awesome idea for the future.....you know after I sell my book, and have the money........I would love to find a house in Long Island and turn it into a place for people to stay while being treated at The Chiari Institute. Not only would it be a place to stay, but also a place to meet others who live with the same condition.

Anyhow, I digress which is most likely why I haven't come up with any new fundraising ideas as of yet. But I will put my mind to it, and get back to you.

In the meantime, if you have any ideas, set them free in a comment or an email. I would love to hear them.

Pray concerns: Keeping the peace in that huge brain of mine that won't stay in place.

Take care of you!

In God's Time

Ok, so this afternoon I decided to update ya''ll (my North Carolina education coming through).

I had just prayed before that, and had decided not to dwell on the fact that I hadn't heard anything from TCI yet.

I was worried that the longer it took, the longer until I have surgery

......which meant more time to get my panties in a knot.

Finally I put my hands in the air, and surrendered the fact that it was to be in God's time, not Queli's.

This verbal admission occured outloud outside on the patio.

Luckily, the dogs already know I am a couple cards short of a deck, so they didn't mind.

All this to say.......so then TCI called.

And God does tell us things so directly sometimes, that we do not understand.

TCI said they would like to see me in a week instead of a month.

The surgery is set at this point on July 23rd. Which means I need to be in NY by the 20th for presurgery junk.

Which means I have no time to plan like I love to plan. And means I don't even have time to worry about the money or how bad it will hurt, or if my living room is adjusted to be most comfortable during post-op.

It is all in God's hands.

From the 19th on, I will most likely finish out July in NY.

So keep these dates in your thoughts and prayers.

Take care of you!

No Date Yet

I have left a couple of messages with TCI's surgery scheduler in the last week, and have not heard back yet.

I am guessing that might have to do with the fact that the place is booming with people from all over the world, looking for someone who truly gets this thing.

Anyhow, so that means I have no clue when my surgery is going to be at this point.

I have not blogged since I have been back, because I struggled with whether I should share my process with you all. I usually figure it all out, then share as needed. However, I did bring you all along for the journey thus far, so is it fair to just leave you hanging?

Perhaps.
Perhaps, you would understand.
Perhaps you could care less.
Perhaps we come from a society that just wants the facts anyhow.

But in the last few days I decided I would at least answer the questions to all that I have received since I got back.

How am I feeling?

Interestingly, the vision of a person whose house has just been shredded by a tornado comes to mind.

Reporter: You have lost everything you own. How do you feel?

So I have an active imagination. Like that is news.

I'm alright. I feel excited, nervous, terrified, and relieved.

My thoughts regarding surgery

The benefits outweigh the risk, as far as I am concerned.

And I know it will be painful, but all great growth moments are, aren't they?

Mother Teresa is quoted saying:

I know God will not give me anything I can't handle. I just wish that He didn't trust me so much.

I couldn't think of anything beyond the surgery when I first came home.

And I was freaking out inside.

However, after spending some time in prayer, I really feel at peace with it all. I am awed by the sense of tranquility I do have right now.

Now this might be temporary....but I am getting things done, and thinking about other things for now, so I am happy.

What will the surgery do for me physically?

Hopefully it will relieve pain and fatigue at some level.

It could make life so much easier.

Sigh.

Anyhow, I will put up more pictures from NY when I get them, and post the surgery date when I know it.

New York

Just had to share this pix with you. This is the beams from one of the fallen buildings that formed a cross they found at Ground Zero in the aftermath of 9/11.

A reminder to me that there is hope even when all seems lost.

I watched this cross from across the road for a long time. Watched people from all religions and nationalities come buy and stare at it in awe......yes, even Muslims.

If you ever go to NY, you have to check this out. Just make a left out of the subway station at Ground Zero, and follow the sidewalk around the enclosed site until you find the cross which has been moved to the church right across the street.

I'm Here

I am in New York learning the public transportation system. It is so expensive, however, I saw parking lots with signs saying "only $9.50 a half hour", so I am glad I decided to fly rather than drive.
Yesterday was spent sight-seeing. I went to Ground Zero. Can you believe that there is still rubble being cleaned up?
If you haven't been there it is definately a must. However, I have to say that going there doesn't help it make sense any....for some reason I think that is what I was expecting.

Today is testing day. Pray I studied well!!!
I will give you a more "Queli-type" update this evening.
Take care of you,
Q

Fear

Things are coming together. I am beginning to watch this trip inch closer and closer, and the first thought or feeling, I should say, is fear.

Fear of what the tests will show.
Fear of what the doctors might suggest.
Fear of possible surgery...
But most of all,

Fear of the unknown.

I wasn't sure if I should share this with you all. But you have joined me in this journey much earlier than I typically invite people in.

I usually have an upcoming surgery date before anyone knows anything is going on....Which is why it is weird to have all of you aware of, and along with me on this journey.

But this is good.

People think I am courageous because I have been through several brain surgeries.

Ha! What a joke! I am not brave. No. not a single bit.

But that's ok, because I don't have to go through it alone.

Not only do I have all of you, who have been awesome in offering donations, support, and prayers........but I also have someone who has been with me through every step of this illness, carrying me all the way.

Some might think this is Jen that I am mentioning. And no, it isn't. Although she has been a big supporter through all of my surgeries, as well as many of my friends back in AZ.

Nope, she has been to all of the surgeries, but the only one who has been with me through every unknown, every fear, and every tear, is God.

When I think of fear, I think of the Psalms. There are a lot of great verses about fear in there. Many of them are written by David. He wrote the one "though I walk through the shadow of death I will fear no evil..."

I used to think that that David was a truly brave sole. However, it occurred to be the other day that he wouldn't talk so much about not being afraid it he truly was not.

It would be a null issue.

So yes, even David was afraid. And God addresses courage in his book also. People of faith should have courage..........which of course is irrelevant without first being afraid.

So yes, I was feeling guilty about feeling fearful, but now I am just accepting it and moving forward despite it.


I know that I will not face a single moment of the days to come alone, even when people are not right by.

So, please don't call be brave. Called me blessed.

But don't say "bless her heart", because we all know that is really an insult. It always is followed by something stupid someone has done..........and yes, I have done many stupid things, but luckily only God knows all of them, and He isn't telling.

Take care of you, and God Bless!!!

Thanks for coming along for the ride. And yes, I do feel all of the prayers :)

Back to the medical world

I have had 5 surgeries since June of 2002, and still have only a basic understanding of Chiari.
Why?
Because until now, most of the medical community I have met, don't know what it is.
Isn't that comforting.
Most doctors run for their medical books when I ask if they are familiar with Arnold Chiari Malformation.
While neurosurgeons can't answer simple questions about Chiari, they are willing to carve into my brain.


I ran away from Chiari a while back.
Unfortunately, I found out you can't run from Chiari----
However, you can hide from the doctors for a while.

I couldn't take the doctor's neurologists, and neurosurgeons (ns) any longer. Med after med, surgery after surgery........no one could mend Q.
You can fool me once, twice...apparently even five times......
But six, nah.
I have wised up by then.

This time is different though. In New York, there is a place where they do not have to look up the name in there college books. They already know what it is. Heck, the place is even named after it: The Chiari Institute.

If you have a chance, check out their website at
http://www.northshorelij.com/body.cfm?ID=6407

I can't even begin to explain how psyched I am to be going. I pray they are God's answers to many long awaited prayers.

A short story: A DAY WITHIOUT CHIARI

The story offers one a glimpse of understanding why the trip to The Chiari Institute is so exciting and overwhelming for me.
I pray that it leads to a continuation of this story.

Monday, September 05, 2005


Songs are powerful on our sensory memory. Think about the last time a tune took you back. The song Wonder does this to me every time I hear it. It takes me to a day so awesome I can’t keep it to myself. It was about a year ago. A blessing, a miracle, an act of God played out on that day.

It Was A Day Without Chiari……..

On Monday I had Chiari w/ hydrocephalus: A chronic neurological illness causing daily headaches, pain fatigue, unsteadiness, and nausea among other things. I had become accustom to my sentence which began with one short phrase from the neurologist:

“We found a malformation in your brain.”.
A what?
Where?

Sure he had a lot of other things to say that day.
At least I think he did.
I did see his lips moving quite a bit
Unfortunately I didn’t hear much through the shouts within my head screaming ‘Something is wrong with my brain?”

All I heard beyond a blurb with the word surgery in it was “blah,blah,blah,blah, blah……”
The jumbled panic-stricken deformed brain could not compute the noises into anything beyond a level of understanding one has with the teacher from The Peanut’s cartoon.

You know I could have misunderstood. Perhaps I got confused about the brain part. I asked the young doctor to repeat himself as I leaned forward, earnestly trying to hear him. He started with the part about a malformation, as he picked up something from his desk.

Crap! That is a fake brain he is holding. This can’t be good. But what is he saying? Why can’t I just shut up and listen? Oh dear Lord, is there something wrong with my brain?

After having him repeat himself about four times, watching him point at areas on a fake brain, I still couldn’t hear a word beyond malformation. My malformed brain, was not going to let me get the slightest knowledge of what was wrong with it. I had to settle with him writing down the name of the condition so I could call my primary doctor at a later date.

When all was said and done, I found myself at a neurosurgeons office. This time, I brought my friend Jen to act as a translator if my mind decided to shut off again. I left the office relieved. Everything was going to be okay. Jen asked my thoughts, and I let her know I wasn’t going to have the surgery he talked about.

“What?” She asked looking alarmed. “Why?”

“He said it was optional,” I answered, watching her face become more confused. “Well he said it was my choice.”

“Yes,” Jen almost laughed “If you don’t enjoy things like breathing or walking, then you don’t have to have surgery.”

Ahhhh! The malformed brain had struck again. Trying to protect its squishy little cocooned world, the little sucker muted out all of that information when I was in the doctor’s office.

Jen reviewed our visit, and explained that I needed surgery to help relieve some of the pressure on my cerebellum- without surgery the pressure could lead to paralysis or death. Not having much of an option, I pushed the surgery out as far as I could… I spent the next two months meeting with my pastor weekly in spiritual preparation for the dreaded brain surgery. I needed to be prepared for whatever laid ahead.



For the next two years I had five operations in an attempt to alleviate the symptoms caused by this deformation which restricted the flow of spinal fluid between my brain and spinal cord. There were plenty of hard times soothed by prayer and the support of my friends, family and church. All across the country, I had friends and churches praying for God to heal me from this condition, for which there is no cure.
And God did use this time to heal, just not in the way that people expected.

I picked up valuable lessons along the way, including the ability to reach out, trust solely God, and the art of sitting still. By the end of the two years, I realized I needed to accept that my life had changed. The pillar of hope that the next surgery would be “the one” had finally begun to crumble. Prayerfully I asked God to help me accept this and move on.



As I stated earlier, on that particular Monday I had Chiari. The following Tuesday, my new doctor (due to insurance changes at the time) called to let me know that the latest MRI indicating the Chiari was shirking. I listened nonchalantly to the nurse’s words and casually hung up the phone.

Before the phone even hit the receiver, I realized what she had just told me…WHAT? I must of misheard.

Calling the office back, I asked if I heard her correctly. The nurse laughed grabbing my chart to read off the results one more time. Confused and breathless, I asked her if this happens. Does Chiari just go away?

“No”, the nurse admitted that it was unheard of, and she seemed as awed as me.

I wasn’t sure I could make sense of what I was told. Was God healing me from something no one has ever been healed from?

In disbelief I called one of my friends. I babbled out the news as I choked back sobs. She, like the next 20 people I called, was shocked, amazed, and flabbergasted ( flabbergasted, don’t you love that word) by my news.

Sure we all believed God was powerful enough and merciful enough to heal- but could this indeed be true?

Were we actually witness to a modern medical miracle done the old-fashion way?

As I called around sobbing my news to everyone I knew they all had varied reactions. Some laughed, some cried, some laughed while they cried, some squealed with delight, and others silently digested the news. No one could grasp totally what was happening, especially me.

I felt like I was having a nervous breakdown of some sorts. I had seen the face of God and the merciful power of his glory, and frankly, I couldn’t handle it.
Unable to even stand at times, I felt weak and unworthy of His presence. I cried continuously throughout the day, amazed that God had chosen me to heal.

Why me?

There are so many others suffering from much worse. My sister suffered from a stroke several years ago. Why wasn’t she the one being healed? Certainly she was much more deserving of His touch. I felt guilty, special, selfish, loved, winded and confused. Several times that day, I barely sat down before gravity took me there; because my emotions were soaring so high I almost passed out.

I actually was not sure I could handle this miracle!

It was too glorious for my body to withstand.

The emotions were ten times greater than as if I won the lottery, because to me this was so much more important. There were other things wrong with my brain that couldn’t be fixed by medical science. And this Chiari had led to other issues with my head.

This disappearance of the Chiari could mean that these things also could be restored. Twice that day Wonder came on the radio, and both times the friends I was with turned it up, blasting the bass so all could hear. My body had become one of Gods great wonders…..

I no longer had to accept being sick, because God was leading me back to the life of the able.

I lay my head down on the pillow that night, exhausted but unable to sleep.

I was being cured!

How was this so?

What grace had been pored upon me!


On Monday, I had Chiari.
On Tuesday, I was healed.
On Wednesday my eyes opened abruptly from sound sleep to devastation.

What if the MRI was being compared to a study from two years ago, before surgery? Then of course the area around it would increase, making the Chiari appear smaller----because they took tissue out of there. Unfortunately, even though I wanted to keep a hold of God’s blessing, I knew that would make more sense than a miracle. Sitting straight up in bed, I felt nauseated as the thought occurred that the radiologist was mistaken Feeling lightheaded, I called my doctor’s office and verbalized my concerns.

The doctor on call confirmed my fears stating that it most likely was a mistake. “Things like Chiari do not just disappear.” The office offered to call back and let me know if it was not a mistake.

I waited all day by the phone hopeful but the call never came.

Drained from adrenaline depletion I picked up the phone and called the band of friends and family I had talked to the previous day.

Everyone insisted that the doctor was just being pessimistic; no one wanted to let go of the miracle.

They weren’t ready to let go. I however, realized by my drained body that I perhaps wasn’t ready for a miracle. With only one day Chiari-free I could barely stand I was so fatigued. I wasn’t prepared for the Milk and Honey, because my trip across the desert wasn’t complete yet and I knew it.

However, I also realized that God can and will cure me one day. However, it will be in his time, after he has prepared me to be able to handle such mercy without turning into a pillar of salt and crumbing from the strength of his grace.

The Chiari didn’t disappear that Tuesday, but a miracle did occur. I saw God’s hand and His power to restore. I saw hope being lifted of those around me in an instant. People forgetting their problems long enough to stop and fall to their knees in the awe of the Lord. I realized that there is a reason we are not always instantly restored through prayer. Our minds and bodies can’t always handle such miracles.
The work we are given in the meantime, prepare us for his awesome grace.

No, I wasn’t cured on that Tuesday, but I was given one day without seeing a bleak future of sickness. When I hear the song Wonder, I remember the miracle God performed that day. One glorious day, which has lifted my hopes forever. I believe this was just a glimpse of what is yet to come………………