Rock Bottom – Part 2

In my case, it took hitting rock bottom.

Today, my perspective is different than it once was. I used to think that God was punishing me for acts of transgressions. I since believe this wasn’t the case at all.

There are those that have alluded to the notion that my health issues are consequences from decisions I made. They have even gone as far as asserting that my health issues could be due to sins committed by my mother and father. These types of people focus on religion versus relationship. There is no room for legalism in my relationship with Jesus. I was once scared to death of Him. Today, I am not. I am reverent but not fearful. I don’t believe He is sitting around waiting to punish me as soon as I screw up. I feel sorry for those that live day to day harboring that fear. It’s exhausting.

Rock bottom sucks but it was my saving grace.

I was born with Chiari Malformation. It was not thrust upon me after a certain number of sins committed.

I made a deal with God. He heard me. Him hearing me is the ONLY explanation for what followed.

Before the late night come to Jesus meeting and the phone call the following day, doors started opening left and right. Actually, they had been opening off and on for months. I was too blind to see it. Blinded by physical pain and emotional turmoil. Yet, He was opening those doors. If you are lost in my ramblings, please read, Rock Bottom.

Dr. Parrish was booked for several weeks. He wouldn’t even think about seeing me without all of my medical records. Deflated but hopeful, I went ahead and made an appointment for mid August and with the help of a dear friend, started gathering medical records. The medical record gathering that commenced was a huge pain in the butt but bearable with a buddy.

Mid-ish July, just a few days after my unheard of out of network approval, I received a phone call from Dr. Parrish’s nurse, Joni. She asked me if I could come in earlier because they had a cancellation. There was no hesitation. Another door opened.

The appointment was scheduled for July 21st.

Although hopeful, Stuart and I were not setting ourselves up for disappointment. Doctor Parrish was a retired Army doctor and pilot. His reviews, top notch. He had saved my “angels” lives. Surely, he would be able to do the same for me.

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My spinal cord is swallowing my brain. The yellow line indicates what in non-wonky folks is “no man’s land” for the brain.

When Stuart and I entered the room, the computer screen displayed the MRI that a team of the best and brightest Baylor College of Medicine had discussed and conferred over. The very same MRI that led the dream team to derive at the “there is nothing we can do for you” death sentence a few weeks before.

Dr. Parrish walked in. He was very personable and had kind eyes. Two traits that are not often found in neurosurgeons. He shook Stuart’s hand and then put his hand on my shoulder. I remember the conversation that followed as if it were yesterday.

“You had too much skull removed. Your brain is slipping through the hole created down into you spinal cord causing a severe cerebral spinal fluid blockage. There is going to be permanent damage no matter what. I don’t know if what I can do will help you but I am going to to try.”

I’m pretty sure that I almost threw up. He was going to try. That’s all I needed to hear.

He went on to tell me that he would have to install a titanium plate that would act as a cradle, lifting my brain out of my spinal cord. A life saving, brain lift of sorts.

Dr. Parrish told us that he had not seen a Chiari patient in as bad of shape as I was, ever. He said, “your previous surgery was botched and he really screwed you up.” Before we left, he was very honest with us, explaining that the sagging was severe and the duration of the blockage and lack of treatment, detrimental. Those factors are what he was up against. 13718515_10201869532255448_7539775150597947641_n

Surgery was scheduled for August 2nd, I think.

What I hadn’t realized at this point is that God was already using my “wonkiness” as a testimony to His power. It wasn’t my late night conversation full of expletives that moved Him. He was already moving.  For months, I had been posting updates and asking for prayer via Facebook. People from all over the place were reading “my story.”

I didn’t sugar coat anything. I’m not that kind of girl. I tried to stay positive but there were posts were my desperation seeped through. I think that is important to note.

I started asking for specific prayers in December of 2015 when I had to take medical leave from teaching. One by one my prayers were being answered. I would update and ask for another request, specific in nature. God was using me. God was strengthening the faith of the people following my story.

Those following my story had ownership in this journey. It was becoming our story. They checked on me regularly. They shared my story and prayer requests with members of their churches. To this day, I meet people that say, I think you are the woman that my Sunday School class was praying for. I dare to say, thousands of people were praying and witnessing answered prayers. Soon to witness the mother of all answered prayers.

I choose relationship over legalism. I choose to forgo sugar coating for the sake of keeping appearances. I choose to let people see that I’m flawed. I never try to force my beliefs on others. I choose to let people witness the power of my Savior.

My story in progress. To be continued soon.

10 comments

  1. Thank you for this, I know it’s not the easiest thing to do. But for someone like, that also lives with Chiari, I take comfort in knowing, I’m not alone. You’re a fighter Julie! And as He says, ‘God will not give you more than you can handle.’ You’re doing the best you can, and that’s enough. I also had too much bone removed, I found this out when I sought a second opinion, the doctor read ALL my records from my surgery. He said ‘too much was removed and it’s too late to sue.’ Sue, for what?! That won’t give me back time or allow me to live pain free! There was no reason to be upset. Gods got me and that’s all I need.

    • I will say I tried to go after the surgeon. You sign your life away and have no recourse whatsoever. So many incompetent surgeons. If they aren’t sure how to do the decompression they need to say so.

      • You sure do sign your life over. They’ve got themselves covered in all angles. That’s for sure! The surgeon that discovered the information – of what my surgeon had done, said, ‘as much as I’d love too operate, a second surgery is too risky.’ His honesty was appreciated and it’s true, the want to operate so badly but in the end some end up causing more harm than good.

      • I have no idea if getting to Houston is an option for you but I would love for you to talk to Dr. Parrish.

      • Just read a little of his bio online. He does decompression and laminectomy – two of the ones I’ve had done. He also doesn’t accept my health insurance, as far as what’s listed on there. The last team of doctors I found, which did the laminectomy for my Syringomyelia, is a great surgeon – Dr. Green. I recently started experiencing numbness on the left side of my tongue, something I haven’t felt since before my decompression. So, I am scheduled to do an MRI and visit my neurologist again to see what may be going on. At the worst moments, it can get difficult to speak. Ugh! This Chiari life, is a hard one, but I’m pushing through this.

      • Yes mam. It saved my life. Dr. Parrish did it. Had to lift my brain out of my spinal cord.

      • Thank GOD! I can’t imagine what recovery was like. My last surgery was laminectomy, Dr. Green placed a shunt because I had a cyst inside my spinal cord, it was so large, he had no choice but to place a shunt.

      • I can’t imagine what recovery was like. My last surgery was laminectomy, I had shunt because I had a cyst inside my spinal cord, it was so large, he had no choice but to place a shunt.

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