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………………