Before I start telling the story that has lead to today, I first want to explain why my blog is titled "I have Chiari Malformation Type 1" and yet the header of the blog says "Let It Be". A few days before I started this blog, my life came to a crossroads. All the events that have transpired since February began to intensify and overwhelm me shortly after I graduated from CMU in May. My symptoms were also increasing in intensity and the pain was escalating, again. Being a control freak I am not happy with my situation. Thoughts were beginning to surge through my mind, overwhelming thoughts that were pushing me into a really dark place. I couldn't help but think of everything at once:
"It shouldn't be this way."
"I've already had the decompression surgery, I was told that it would fix the problem!"
"Maybe I'm wrong, maybe I need to just suck it up, maybe I'm just being dramatic."
"I guess I'm not as tough as I thought I was."
"I feel like my future is nothing but a joke."
"I was ready to go on with my life, go to grad school, but those dreams have eluded me, all there is now is pain."
"Why won't all these specialists believe me that I hurt?"
"I wish I was healthy or strong enough to just get a job."
"I can't believe I just spent all of my savings to see these specialists without getting a shred of hope."
"I don't want to move back into my parents house, but what choice do I have?"
"All I am is a burden to my parents."
"My loan payments start in a month, it is wise to defer them; if not then how am I suppose to pay them?"
"My eyes hurt!"
"If I have to have another surgery, how am I going to pay for it. I don't have insurance. Mom and Dad don't either!"
"There is no money!"
"I don't want to die, but I'm not too excited about being alive right now."
"I just want to escape. I need to escape."
"What am I going to do?"
"How do I get help when all the specialist have no answers."
"I have to change this. I need to control this!"
"My head hurts."
"I have to get away!"
"God, where are you? Why can I not feel you? Why can't I hear you? What have I done?"
I sat in my room with these thoughts churning in my brain. I felt hopeless, my future seemed to be crumbling. Not even 7 months ago I was planning on going to grad school, moving to another state, establishing the next phase of my life. Now I was broke, living with my parents in Meeker, eating their food and using their money to see doctors. I felt like my faith was withering, a faith I had spent many years and obstacles cultivating with God. A faith that was my own personal walk with Him, turning to dust before my eyes. My head was pounding so strongly I had to stop and get ready for bed. Sleep has always been my only escape.
So I got up and when to the bathroom to brush my teeth. It was about 11:00 pm and I knew mom and dad would be in bed. I walked up the stairs and I saw the faint glow of the computer from the living room. They must have forgotten to turn it off. I walked towards the living room and there sat mom at the computer. She was desperately searching the internet, looking, searching, hoping to find an answer. I watched her look at a website and sigh when no answer was to be found. She would then try another and then another, she wasn't going to give up.
This is not one of the most masculine moments of my life but here we go. When I saw my mom at the computer, it broke my heart. She should be in bed, peacefully sleeping before work in the morning. Not trying to figure out how to help her "broken" son, searching for hope in the darkness of the night. I got pissed! This may not be fair for me, but this is certainly not fair for her! I turned right around and went to my room and sat down at my computer. The cursor was blinking in the search bar on google. But I couldn't think of where to start?
I realized I couldn't stomach another search that entailed my symptoms. According to the neurosurgeon and another neurologist, these symptoms that I was experiencing were not connected to my surgery or my diagnosis of Chiari Type 1. They felt that the surgery had taken care of the Chiari problems and had nothing to say about the symptoms I was experiencing now. I took them for their word, that somehow I was at fault here. I was making this bigger than it was, that there was not actual problem, I was just a wimp.
These thoughts fueled my anger. So I searched for Chiari patients and what their experiences were like. That's when I found a blog "My life with Chiari Malformation Type 1". The author, Jenn Ann told her story from the moment she was diagnosed all the way through her recovery. It was very comforting to read about someone who went through what I had gonenthrough. But more importantly, there was a key detail to her story. She had her surgery performed at the Chiari Care Center at The Medical Center of Aurora. (WHAT!? You have got to be kidding me! There is a clinic in Aurora that works almost exclusively with Chiari Malformation. But more importantly, it is in the state that I live in. How did I not know about this?)
Well its simple. I was 17, in a tremendous amount of pain and when I was diagnosed back in 2004. I was told, "this is what we are going to go", "this should fix the problem", "and we are performing the operation right here in Grand Junction (a city two hours away from Meeker)". I was so ready to be pain free I was trying to put on a gown before the doctor was done talking. :) So yes, I will admit, I didn't do one ounce of research when I was diagnosed. I was so happy there was an answer after two years of searching. I wasn't going to rock the boat.
So, by the time I found Jenn Ann's blog, my most recent MRI (I still don't like being shoved into a tube, but the music through the headphones helps) had been taken and the report stated that "everything looks fine". I had to disagree. Currently I am running for mayor for the town of "I Hurt" which is found at the crossroads of "I'm Not Fine" street and "Something is Wrong" avenue. But there was now a chance again. It was time to call the Chiari Care Center.
During all of these events, the questions I mentioned earlier were still ever present. I felt an anxiety building within me. I was being sucked into a vacuum of darkness and anger. I had to figure out how to clam down or I was going to loose it. Then I remembered my best friend Leisha. Before I had to move back to Meeker, she came to Grand Junction for work. While she was here, she planned on getting tattoo. She planned on having "Let it be" tattooed on her foot. I asked her why "Let it be"? She told me the story of her learning to "let it be" when she had her daughter Piper. I knew the story she was talking about, we had talked about it several times. Leisha and her husband Ray went through every expecting parent's worst nightmare. Leisha was having complications and it only by the Grace of God that Piper is with us today. This event has forever changed Leisha and Ray, and from that event Leisha had learned to "let it be".
So there it is, I realized what Leisha meant a few months back. I (the control freak and perfectionist) need to learn to… Let it be. But only through this entire 8 year journey could I have learned just what "let it be" means to me and my life. TBall
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