July 11th came and went without me even realizing the significance of the day. I had, however thought of it numerous times before and many times since. July 11th marks the moment in time that my life changed, forever.
Stuart was working a twenty-four hour shift. I got up and met two beautiful ladies for breakfast at Cracker Barrel and ran some errands throughout the day. That evening I visited my granny and celebrated my uncle’s birthday. Regina made a rice casserole that was to die for.
Two years ago on that day, I asked God to let me die.
I had been suffering from vertigo for months. This particular go round was relentless and exhausting. I had spent all of May and June arguing with the insurance company about my need to see a specialist outside of the Kelsey Seybold network.
Chiari was slowly killing me. It was doing so physically and mentally. I was diagnosed in 2004 after headaches, balance issues and vertigo had consumed my life.
Twelve years later, I was worse than I had ever been. Too much bone had been removed during my second brain surgery, leaving my brain a sagging mess, sitting on top of my spinal cord.
I spent months being carted back and forth to neurosurgeons and ENT’s in Houston, only to be let down time and time again. I can’t tell you how many times Stuart and I heard, “there is nothing that we can do for you.”
Corey, 22 at the time, spent most days emptying my puke bowl and picking me up off of the floor. That is a story for another day. A story that deserves it’s own chapter.
Stuart would come home from work everyday to find me in the same spot he left me that morning, sitting on the couch with Nana, my head in a plastic bowl. Even when I wasn’t puking, that plastic bowl was like a security blanket.
Via a Chiari Facebook group, I met two ladies who had the exact same saggy brain delima. Like me, their delima’s derived from the incompetent hands of a surgeon. Meg and Ashley were sent to me by God. I believe this with all heart. These two women highly recommended that I see Dr. Parrish at Methodist Hospital because he saved their lives. They are my angels.
Weeks before my come to Jesus meeting with, well, Jesus, I spent hour upon hour crying to a Kelsey Seybold representative, pleading my case. Begging to get in to Dr. Parrish who was an out of network neurosurgeon. I was denied.
The morning of July 11th, we met with the head of a team of neurosurgeons from Baylor. I was so excited, I knew this was going to be the news we had been waiting to hear. Quite the opposite. The team had studied my case, conferred and came to the conclusion there was “nothing else that could be done.” The head guru went on to say that the part of my brain that was sagging was “God’s territory.” Basically, they were sending me home to die.
At this point, the spinal cord compression, visible on the MRI was wreaking havoc on my body. The pressure headaches made my world appear as if I were on a merry go round all day every day. The pressure had moved into my ears and throat making it seem as if I were being held hostage at the bottom of a swimming pool. I felt as if my ears were going to explode. My gag reflex was gone. I couldn’t form a sentence without stuttering. My eyes twitched nonstop. The fancy medical term is nystagmus. I was losing feeling in my right arm and leg. When I walked, I looked like a stroke victim. An intoxicated one at that. Passing out or drop attacks occurred throughout the day. Needless to say, I was homebound. More like couchbound. I depended on my family for everything. I was a burden.
On July 11th after hearing the news from that team of the seven neurosurgeons, the best and brightest in the country, I was at rock bottom. Through tears and with eyes that I am sure appeared empty and cold, I begged Corey to make sure all of the guns were in the safe. I didn’t trust myself. I sat in the same place and cried for hours. Every time Stuart or Corey walked by me, I reached out my arms muttering, “I want to die” with what little energy I had left. I was sick of being dizzy. I was scared that no one could help me. This wasn’t fair to them or Casey. I was a burden.
Around 11:00 p.m. I was watching Fox News through swollen eyes that had not stopped crying since we got home earlier that afternoon. With Nana curled up in my lap, I muted the TV and yelled at God. I yelled a lot. Thankfully, He is a big boy who can handle our true feelings and loves us despite us. I prayed and yelled and prayed and yelled, until the early hours of the morning. Then I started bargaining with God. You’ve all done it. Don’t judge.
The one-sided, condensed conversation went something like this, minus the expletives: “Ok, God. You can either let me die or open doors. I want to die. Please, let me die. I can’t be a burden to my family anymore. It’s not fair. Why are you letting this happen to me? What have I done to deserve this? Is this punishment? If you open doors, I will give you the glory day in and day out for the rest of my days.” Again, this is the clean and condensed version but you get the point.
I fell asleep just as Stuart was going to work and the sun was coming up. Around eleven, the morning, of July 12th, the phone rang. My Kelsey Seybold case manager was on the other end. She told me I was approved for two visits and a surgery, if need be. She went on to say that I was the first to get an out of network approval for Dr. Parrish and that there had been many requests pass her desk over the years.
God heard my yelling, my cursing, my pleas and my desperation. It was my turn to make good on my end.
Rock bottom is where I found the relationship I didn’t even realize I was missing.