Man, did I feel stupid.

It's interesting… this journey has allowed me to watch and learn a great deal about the medical community. My only experiences with the medical community were few appointments and such every now and again (vision therapy doesn't count in this thought). Up until my appointment with Dr L I hadn't realized how many people were sick and in need of care. Even today, it is crazy to see how many people are in need medically. 

All I can say is… thank you to all the doctors, nurses, medical staff and everyone who works behind the scenes when it comes to the medical community. I have really been able to peek into your world, a world that I fear many people forget about. You all work very hard and help so many people, and I know that people are not at their most patient or kind when they are sick or in pain (myself being at the forefront of that little group).

I first got a glimpse into this world when we scheduled my MRI. As far as I remember, it was roughly a two or three week wait. When we asked if there was any earlier appointments, the reply from the receptionist was that the radiology center was booked solid. So two or three weeks passed and my parents and I drove to Grand Junction. I was terrified! I remember that I was so freaked out about having to get a shot (or worse, have to wear a gown!). The radiology techs were awesome and were a lot of fun to talk with. Then it was time to be inserted into the tube. Ah the tube… (everyone strap in, it's rant time). If any of you have been blessed enough not to have an MRI let me tell you a bit about it. On my list of things to do, this doesn't even make the cut. Now the techs work their hardest to alleviate any anxiety or nerves you may have (though, this may be for their sake. Having a patient screaming bloody murder from the tube may not be on their list of things to do either). But this thing is still intimidating. The machine is not small. You lay on this narrow table as the techs put on a pair of headphones on your ears, put a towel over your eyes (it helps you keep your eyes closed and for your eyes not to move…. I asked), then they slide this cylindrical, plastic guard (or case or whatever, it is like a part of the table that keeps your head in place) over your head, then the table starts to raise and then it starts to slide into the tube (oh, have I mentioned I'm claustrophobic? No? That's because I didn't know this until now! Great! Now I have to make sure I don't "man whimper" for the next hour and a half).

The tech comes over the headphones and asks if you are ok (my brain wanted to say, "well let us talk about the definitions of OK. Pull me out of this thing and we can have said discussion!" But instead I just squeaked "yeah"). Then the tech says, "Ok, we are about to begin, try not to move" (Really? You had to say it? Now my nose itches… and my hand is cramping… and we haven't even started yet.) And then the MRI begins, to say that it is loud is nothing close to the correct statement. They should tell you, "this machine makes the worst sounds possible. Please realize these sounds are not sirens, machine malfunction indictors, or the global alert of the zombie apocalypse. This is just how the machine sounds" (really, this machine makes the kind of sounds that we associate with run and flee! And yet, I was in this tube, with my face covered, and they had to raise the table to get it into the tube. It could be a fifty foot drop for all I know. Oh Lord, I am going to die in this tube! Death by MRI). And then the music comes over the headphones. The techs said it would help and they were right, it was helping… a lot (I had chosen the soft voices of Disturbed and Linkin Park to be my vocal guides for the next 90 minutes). If you focus enough, you can actually calm down (though my nose still itched). I was even starting to feel a bit relaxed. Then my mind started to wander and I began thinking of what could they possible need me to get an MRI for? How many people laid here thinking the same thing? How many people got good news? How many didn't? How many would remember this event as the beginning of the worst phase of their life? How many hadn't made it? That's when it hit me that there could be a major problem.

The ride home was quiet, facing one's mortality is not an easy experience. We wouldn't know what the MRI said for a few days, but still I was scared. Being that Dr L ordered the MRI, we would be returning to her office to hear the outcome. A week later we were back in Grand Junction (or GJ) and walking into her office. I remember that she was on the phone with someone saying, "Look! It's right there, he has it, it's right there!" I was preparing myself for the worst. Dr. L looked at us and said, "Timothy, you have a neurological condition called Chiari's Malformation. I have referred you to a Neurologist who can explain everything better." That day the ride home was even more quiet.

A couple of weeks later, we were headed to GJ (yet again) to meet with the Neurologist, Dr B. He was a really nice guy and we had a great time talking with him. He explained the condition, that I would require surgery (Cranial Decompression), what the surgery would entail, and that looking at the severity of my symptoms, that the surgery needed to happen sooner rather than later (At this time I was in tremendous pain. My head, not for one moment in the day, would stop pounding. I would go to bed with the pain, walk up in the morning with the pain, and even wake up in the middle of the night from the pain. My eyes were also failing. I was actually loosing my sight, my world was not becoming dark, it was bleaching out. I couldn't handle coming out of the basement for very long, I was even wearing my sunglasses at night because the streetlight's light was so intense). Dr B said he would like to schedule me for the decomp. in February. I said no, with as much time as I was going to be in recovery, I wanted to graduate high school first. Even though I had completed my entire year's of work incase I had to have surgery, I wanted to walk with the rest of my class. Dr B advised against it but he agreed that we could schedule the surgery for late May.

As December of 2004 approached, my symptoms began to worsen even more. The pain was actually causing me to not think clearly, I was slurring my speech, and parts of my body would go numb randomly (there is now way to recover gracefully when you fall on your face because your leg instantly goes numb). The pain had become so unbearable I was staring to become frantic and angry. I had no clue why God deemed it necessary for me to be in so much pain. (Now I know, Dr B said the surgery needed to be done soon and that I had said no, I wanted it later. Graduating was very important to me. I had worked so hard to overcome my reading problems and vision therapy and pain for three years, there was not way I wasn't going to graduate. I didn't want to wait a whole other year to graduate. I just needed to make it to May and then I would do whatever I needed to, to become healthy). 

But the pain, it was so strong. I had lost most of my vision (being an artist this was almost worse than the pain). I was so angry, I remember I was in my room in the basement, middle of the day and I was hiding from the world, sitting in darkness with a throbbing head. I was so angry I was shaking. I remember saying to myself, "God, I hate you. You are more cruel than you would like people to think. You are a wicked and vile creator, wanting nothing more than humanity to think you are mighty because you are so pathetic. I will not be one of those people, I curse you God. I curse your existence and I will never seek help from you again. YOU ARE NOTHING TO ME!" I had never been so sure of something in my life. I stood up and walked to the door. As I did so, my entire body went numb. It happened so quickly I couldn't even inhale. My body just crumbled to the floor. I remember feeling the carpet fibers burn against my eyeball but I couldn't even will my eye to blink. I know this wasn't a very long occurrence because I didn't loose consciousness. But to me, it felt like a lifetime. My mind raced in panic. I remember I started to weep, as the tears and snot ran across my face into the carpet, but I couldn't wipe any of it away. "NO" I screamed in my head. "No God! Not this way. DON'T let me die this way! Don't make mom find me like this! She can't find me like this! PLEASE!…. please………..please."

I couldn't tell you how long I laid there (probably only a few seconds) but I suddenly inhaled and blinked. When I regained feeling in my arms, I scooted next to my bed. There, all I could do was shake and sob. I cried so uncontrollably I had a hard time breathing. I wasn't thinking a single thought, I just sobbed. While I did so, a calmness suddenly overtook me and I heard myself speak inside my head, though it wasn't my internal voice but a voice none the less. It spoke with a sternness that terrified me and yet made me feel safe all at once. "Do NOT ever think that I don't love you! You are mine and I love you more than you can imagine. Do you think I do not share in your pain? Do you think it is nothing to me? I have claimed your soul as mine! This and my love you can NEVER escape." Man, did I feel stupid. 

I remember mom running down that stairs and come bursting though the door. She must have heard me sobbing. The look of fear on her face is something that will always be imprinted on my mind. I told her about my body going numb and that it scared me (I didn't mention the other part. I still was confused on what had really happened. Had God really just spoken to me? I was expecting something more to do with clouds rolling back and trumpets from angels. Not a voice that wasn't mine in my head). Mom checked me over to make sure I was ok and had feeling back in my limbs. She helped me up the stairs and then was across the room (with lightning speed) and calling Dr B. The surgery was going to be scheduled for the soonest day possible. 

I wanted to take a moment and talk about this last post. I was absolutely terrified about writing this chunk of the story (and it took me four hours to do so). Even knowing that I would have to write this part, scared me so badly I talked myself out of creating this blog three or four times. I have mentioned God in previous posts, but not like I did in this one. While I fully understand that my body going numb was a result of the pressure building from the herniation in the back of my skull, my heightened emotions, my extreme anger, and ignoring the advice of my neurologist, the event with God happening at the same exact time was not a coincidence either.

God is so intertwined to this story and to my life personally, that to try and write Him out would be ridiculous. That being said, I am not here to preach. I am not here to tell you what you should believe. That is not my place and it is not the purpose of this blog. I am telling my story, as closely as I can remember it. My walk with God is unique to me and it's a huge part of my journey with Chiari. It is not my intent to offend anyone or make them feel as though I am shoving my beliefs down their throat. TBall