Charlie

It was now 2005 and the date for my cranial decompression was scheduled for the 7th of March. Now I just had to make it to March. Having a limb (or side of my body or side of my face) go numb was now occurring more frequently. I only ever experienced my entire body going numb once and I am extremely thankful for that. The pain in my head was increasing. Dr B had mentioned that what I was feeling was cranial swelling. The herniation was causing pressure on my brainstem and the pain I was feeling was across between a headache and a mini seizure (FUN!). 

During the month of January, I was growing concerned with two major problems: first and for most was I was going to have brain surgery but more than that, how was my family going to pay for it. We were told that the surgery was going to cost around $40,000 and we didn't have any medical insurance to speak of. I was beginning to panic, both my parents were working but we didn't have this kind of money. Little did I know that there were two blessings coming my way. During this time, dad had been talking to his "Men's Group" about all that was going on. Two members of the group, a father and son, asked my dad if they could start collecting donations from the community. A week later there were cans all over town with my picture on it, asking for help (on a side note: it is very weird to be standing in line at the grocery store and see a can with you picture, a quick explanation and a request for help. Now like I said, everyone in Meeker knows everyone else. This wasn't what was weird, what was weird is the fact that people would put money in the can and then wish me healing. What do you say to that? All I did was blush like an idiot and say "thank you"). The other blessing came around the same time. Mom was told about an insurance organization call "CHP+" (again, this is where I turn things over to the internet and rejoice for copy and paste).

CHP+: Child Health Plan Plus (CHP+) is low-cost health insurance for Colorado's uninsured children and pregnant women. CHP+ is public health insurance for children and pregnant women who earn too much to qualify for Medicaid, but cannot afford private health insurance.

Thankfully I was six months away from being 18. I was approved and there was a peace that took hold in my heart. Help was coming and it wasn't going to destroy my family financially. However, a new obstacle had arisen. The school was not comfortable with the idea of me missing roughly three months of school for surgery and recovery (I can't completely disagree with them on this issue, but come on, brain surgery was not on my top ten things to do my senior year). I remember we had a meeting with the school to discuss this issue. Mom and I sitting in a room with several faculty, the principle, and a few board members. I explained my feelings about the situation and was beginning to grow upset by the conversation. Mom, however, calmly listened and when she noticed I was pushing my very fragile limit she asked me to go wait in the hall (now, my mom is not a woman who yells. I have rarely, if ever, heard her raise her voice. That is not how she works. When my brothers and I were younger, she never yelled at us, but when we got in trouble, she would speak and you better believe we would listen. Usually afterward we wanted nothing more than to crawl under the couch and die from guilt or the impending punishment). When I left the room my mom spoke, calmly but with a very protective and stern tone. I can't remember what she said exactly, all I remember is thinking "glad she's on my side!". After about 30 minutes, she came out and we left. The situation had been resolved and all I could do on the ride home was look at her with a new respect (and fear) and think, "I am never, going to get on you bad side. That much is for sure."

So here we were, the 6th of March had come and mom, dad, Caleb (my younger brother) and I were in GJ and were at Chili's having my last meal before my required fasting hours. I remember sitting at the table barely touching my food, scared out of my mind. Mom was silent, dad and Caleb were eating. All the sudden, my dad puts down his fork, gently places his hand on mine, looks at me with fear in his eyes and  says, "Tim, I just realized, your going to have major surgery in the morning. I'm really scared!" Mom turned to him and said, "WELCOME to the party Jack!" and then began to cry. So here I am, white as a ghost already, mom is crying, dad is freaked out of his mind and this so happened to be the moment the waitress decided to check in on us. She came to the table and said, "How is everything, can I get you anything?" Caleb looked at her, looked at each one of us, looked back to the waitress and says, "I think we're good."

That night I laid in the hotel bed staring at the ceiling. Sleep was not going to happen tonight, there was no way. I remember trying to watch TV just to pass the time. As I sat there, I saw Caleb in the next bed (little jerk, I was going to have surgery in the morning and there he is snoring away! If I made it through, he was going to regret sleeping while I was freaked out!). Actually I remember wondering what would come in the next few hours. I had complete confidence in Dr B. The surgery seemed simple enough but the thought of sharp tools so close to my brainstem wasn't something one can forget easily. We needed to be at the hospital at 5:30 a.m. and it was now 4:00. I got up and headed for a shower. Shortly after I got out I heard a soft knock on the door. Mom and dad were at the door (didn't look like they got any sleep either. At least Caleb did and he would regret it!). The sun was not in the sky yet, but the colors on the horizon alerted us to it's approach. We walked into the hospital and my nerves were getting the best of me. I couldn't stop my hands from shaking. Thankfully, my parents were allowed to be with me during the entire 2 hour prep time.

In no time at all I was sporting the latest in medical fashion: a blue and white checkered gown, leg and foot stockings, wrist bracelet and IV to match (I felt sexy). The nurse that was assisting me and put in my IV was a wonderful woman. She had been doing this for years and she had me laughing and talking up a storm (which by now you can imagine may actually be physically possible for me if you get me on the right rant). And then she mentioned the catheter. Needless to say I was adamant about not having one (I may have freaked out just a little). I explained to her that I would hobble my ass to the bathroom if need be, but I was not going to have a catheter. She smiled at me and said "ok" (Ha! victory).  As time approached Dr B came into the room looking very excited and ready to begin. He told me that it was time to go and I looked at mom and though, this isn't so bad. Either I will wake up and see her and dad or I will take up and see Jesus. Besides, I was already dressed for the part, there was no going back now. I was wheeled into surgery and there I met the nurses and anesthesiologist (yes, hello, nice to see you, how are the kids?). Next came the face mask and I counted down.

The next thing I remember was a voice telling me to open my eyes, that I needed to look at the nurse (my thought was…. NO! I don't wanna) but I finally relented and squinted at the owner of the voice. Then I slipped back into unconsciousness. Next thing I remember was a sharp pain and then extreme thirst. Apparently I had made it and I was in the ICU. I don't remember much of that first 24 hours. I was told later that not only had a few people come to visit but I had also gotten quite angry at the automatic blood pressure machine. According to my mom, I not only expelled a lot of words that she had never heard me say (oops) but also some unfriendly gestures to the machine as well. I woke up the next day and I felt pain. But I also felt something else, I felt…. and I looked…. and there is was, a catheter! (they got me while I was out, sneaky!). Truth be told, I was very thankful for that thing, moving seemed to be quite a challenge. 

Later that day I was hauled up to the head trauma ward. Which seemed appropriate because my head felt like it was splitting open. To make matters worse, I was puking, a lot. I remember that for the next three weeks I would puke at least once (if not more) a day. All I can say is that "percocet, thou art heartless!".  The nights in the hospital were the worst. Most of the time I remember lying there in pain watching the clock tick, waiting for the nurse to bring me my next  batch of pills. I was having a really hard time swallowing, so they usually came crushed up in pudding or ice cream. I remember I would lay there wanting to scream from the pain. I was so nauseous I couldn't sleep. But it was during this time that I realized that my situation (as grim as is was) could have been a lot worse.

The man in the room next door was named Charlie. I asked a nurse about Charlie, I was told that Charlie was lucky to be alive. He had fallen down a flight of cement stairs. He had gone through 14 surgeries, mostly trying to repair his skull and brain. Charlie was now permanently disabled and mentally handicap. Essentially he was now "Rain Man" and extremely intelligent man stuck in the brain of a 3 year old. Every night Charlie had to be strapped to his bed so that he wouldn't pull at his staples or claw at his wounds. Every night Charlie would cry out, "Let me out, please let me out. I'll be good. Let me out!" It was heart breaking to hear the first few nights, but after a few nights of the crying, I couldn't help but want to say, "Let him out. He said he'll be good. Please just let him out!" Sleep didn't come during the nights and time seemed to have slowed to a crawl. 

As I sat here writing this post, I became humbled. Not only because of the collection cans around Meeker, but because I was someone who was blessed enough to just have Chiari type 1 and not someone who fell down a flight of stairs. In the past couple of years I had forgotten about Charlie and I am ashamed of that realization. While I am still in pain and the headaches are increasing again, while I seek for answers to this problem and worry about how I will pay for it, I need to remember Charlie's story. Even though he doesn't know it, Charlie changed my life that night. Possibly more than the surgery did and I need to remember that. I am blessed enough to write this blog. Blessed enough to do whatever I please. But mostly I am blessed enough to remember a man named Charlie. TBall

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

I'm not going to do it!

I mentioned earlier that I misread my schedule and missed a day of work. Let me explain what I meant. This wasn't a quick glance mistake, I would take the schedule down and meticulously follow the days and write down when I was scheduled. Before I would leave that day, I would check and re-check my notes next to the schedule before I left. To me, what I saw on the schedule and what I had written down were absolutely identical. Even when I was informed I had missed a day, I re-read the schedule and still couldn't see what they were talking about (I just wanted to explain that a bit better).

Although I had dizziness and headaches after vision therapy, my reading skills had improved. They weren't going to win me any reading contests, but at least I knew what days to be at work. So my reading had improved and I was ready to start my senior year a new man. I was not expecting to have light become my enemy. Now from what I read, photophobia is an aversion to "bright" light. But to me, all light is bright. The light that a lamp gives off through a lamp shade is just as bright to me as a bare lightbulb. If I am in a room that is all dark except for one light, my eyes still hurt from that one light. Over the past 8 years, I have learned a few tricks but really, light still hurts my eyes (one of my deepest fears is that it always will). 

Do me a favor, look around you right now. Look at all the light sources in the room in which you are sitting. Now that you recognize the different sources, look around at all the light being reflected or bounced off of all the objects in the room. Out of habit, this is what I do in every room I walk into. I quickly assess the light and reflections in a room and choose how to approach it. I will find the sources of the most light or the most painful light and sit in a way to avoid that light. For example: I sat down at my computer tonight with one lamp on in my room. Before I started typing, I looked around and realized that the lamp was reflecting harshly (at least to my eyes) off my water bottle on my desk. So I moved the bottle around until I found a spot in which it didn't catch the light. 

Trying to totally avoid light during the day is right up there with trying to only breath pure oxygen from the air around you (it's not gonna happen). What I do is try to avoid the worst of the light. I wear my sunglasses everywhere, even on dark rainy days. I am never outside without my sunglasses, better yet, I can't be outside without my sunglasses. I wear them inside buildings and restaurants (people look at you as if you are some poser who think's he's bad ass. All I can say is, I don't "think", I "know"). :)

Several days had passed since the room caved in on me and my headaches had increased even more. I no longer recognized them as headaches but rather thought of them as migraines. Reason being is that the pain seemed to be on a whole new level than what I had experienced with all the headaches in the past. Light had become my enemy. It was so intense and leaking into my eyes from all angles. Direct light from the ceiling lights, beams of light coming in from the windows, light reflecting off of any surface, all marching into my eyes and leaving pain in it's wake. During the day there was no way to escape it, it was all around me. 

A few months into my senior year and my eyes were getting worse. My reading began to slip again, I almost always had a migraine, and my mood had become something most foul. I was irritable and angry, I would snap over the littlest things and my mom decided that this was more than just the normal teenager angst. She came to me and asked if I was ready to go back to vision therapy. My reaction was less than calm, I exclaimed to her that I "would never!" step into the man's office again. He never believed me and I was not going to go through that again. She then calmly asked me if I was ready to get a second opinion. I wasn't exactly thrilled with this idea either. What if this second opinion didn't believe me? What if he/she said the same thing, that I was just making this up for attention, I was a teenager after all. I didn't want to face another person that would quickly judge me for my age and maturity without really considering what I was saying.

In the end I realized mom was right and we called a specialist in Grand Junction. Dr L was a specialist that primarily works with vision problems in small children. Seventeen year olds really weren't in her demographic, however, for some odd known reason she said yes and two weeks later we were in her office. By this time, my eyes were quickly failing, my world was getting brighter and brighter. I sat there, having an eye exam (an event that had become common place for me in the last two years) and hoped and prayed that Dr. L would say something along the lines of, "yep, there's a major problem". She sat back from her equipment and turned in her chair to my parents and said, "Well your pervious diagnoses is correct, he has Esotropia and Esophoria. The only thing to do is more vision therapy." My heart sank and I got a lump in my throat as the anger swelled within me. I clenched my fist and said, "NO! I will not do anymore vision therapy. It hurts and I refuse to do it. I can not handle the headaches it gives me!" At that very moment, Dr L turned to me and said, "what?". I said, "it hurts my eyes and gives me headaches. I'm not going to do it!" Without even a blink, Dr L quickly turns back to my parents and says, "We need to schedule him for a MRI as soon as possible!" (Wait! An MRI? That's more than the reaction I wanted to hear!). TBall

And so the journey begins...

So here is how the whole journey started. I was born on May 1st in the late 1980's. It was a rainy day (or so I am told. I don't really remember). Ok that seems a bit dramatic, let's see if we can reel it back in a little bit. The actual journey that would ultimately lead to me writing this blog began in 2001, the year I started high school. It's really weird to think about it being that long (trust me, I did the math twice). 

It was a day like any other, my family and I were at the mall in Grand Junction. I was having an eye exam because I wanted contacts (lest my glasses appear nerdy to my new high school peers). I remember the eye doctor commenting about something and asked my mom to come take a look. Apparently he was showing her that my eyes didn't match up. What that meant and if it was a problem was not expressed, so we went on with our day. That year of high school progressed as any freshman year would. I didn't play any sports because I am a horrible athlete. I can't catch a ball to save my life.

During the middle of my sophomore year, my grades plummeted from a B average to F's in the span of about two weeks. Let me lay in some background info here. Ever since I was little I had troubles reading. My mom actually found out when I was in the 3rd grade that I didn't know how to read at all. I had actually manipulated and guess my way through 1st and 2nd grade reading. When 3rd grade came around my mom started home schooling us (something I don't think any of us enjoyed, including mom). But that left my mom with the task of teaching me how to read. To say that I was a stubborn little…. "angel" is no understatement. I just had the hardest time learning to read. I wasn't good at it, I fought it with mom and I generally would do anything to get out of it. But in time, I learned how to read but it was uncomfortable to do so and I was horribly bad at it. I would take me a few hours to read a chapter of a book, I would have to re-read a sentence multiple times just to understand it. But I learned how to limp along and when I went back into public school in the 8th grade I did ok. This "ok" extended through my freshman year. But when my sophomore year came I started really struggling and misreading everything at school.

During this same time I misread a schedule at work and missed a day. I had taken a trip to Grand Junction to go christmas shopping with some friends. As hard as I tried, I just could't read things correctly. Misreading my schedule did not go over well and it was then that my mom asked me if I though I was dyslexic. I admitted that the thought had crossed my mind. It was time to find out.

Ok, let me take a time out here and explain my hometown of Meeker, CO. This is important to understand the rest of the story. Meeker, is a small ranch and farm style town in the Northwestern corner of Colorado. It is almost dead center between Rifle, CO and Craig, CO. Meeker is known for its hunting. A lot of hunters come from all over the U.S. to hunt in and around Meeker (in fact, Meeker is full of hunters at this very moment). Its a small town where everyone knows everyone and everyone's business. It is a beautiful place and I tell people it's a wonderful place to live and raise a family. To better illustrate Meeker's small town(ness), the closest McDonald's, Starbucks, or Walmart is an hour away in each direction and by hour I mean "winding, deer infested mountain road" hour. Grand Junction, being only two hours away is the largest, closest city. Moving here from Denver when I was massive culture shock.

So it was time to find out whether I was dyslexic or not. There was an eye doctor who's practice was in Craig, the town north of Meeker, but two days out of the week, he would come to an office in Meeker. We scheduled an appointment with him and in a few weeks  that appointment came. The eye doctor examined my eyes and diagnosed me with Esotrpoia and Esophoria. This is where I turn things over to Wikipedia for a moment (and rejoice for "copy and paste"):

Esotropia is a form of strabismus, or "squint", in which one or both eyes turns inward. The condition can be constantly present, or occur intermittently, and can give the affected individual a "cross-eyed" appearance.

Esophoria is characterised by inward deviation of the eye usually due to extra-ocular muscle imbalance.

Long story short, I was going cross-eyed (really? One could become cross-eyed? I though one was born that way?). The eye doctor explained that he had a colleague in his office in Craig that works with patients to fix vision problems such as these with "vision therapy". This meant that for several months, I would have to drive to Craig, an hour before school ended for the day, two or three times a week for therapy. 

During this time I had my driver's permit. Needless to say, most of my hour requirements were met with trips to Craig. Mom and I spent many hours driving to and from Craig, truth be told now (though I would have never admitted it at the age of 15, but those were some of the best hours of my life. Mom began teaching me and showing me who God really was and what is was like to have a personal relationship with him. Outside of church and religions, just a "walk" with God. I remember listening in awe at some of the stories and experiences she would tell me. How she would feel the Lord lead her through a situation or hear the lord speak to her. I remember thinking… "well I want that, how do I get that?" It was then I began my walk with my God). 

So vision therapy began, it was a lot of eye exercises and vision manipulation. An example: one homework exercise was to take this long string with a yellow, green and red bead, tied at different lengths along the string, and tie one end to a door knob. I would then hold the other end to my nose. What happens is that your vision, while looking down the string, will make it appears if there are two stings crossed over one another. I was to force this "crossover" to go through the 1st bead and then the second and then the third (rinse and repeat). Its the same idea as if you hold your index finger in front of you face. When you focus on your finger (you should see two backgrounds behind your finger). Now focus on  the background, looking past your finger (now you should see two index fingers). 

On a side note: I am smiling from ear to ear imagining people reading this and now are sitting in front of their computer staring at their index finger. :)

A month or two into the therapy and I started getting headaches. I would comment (and sometimes complain) about them to the therapist. He would tell me that I should feel "some slight" discomfort but that the therapy was giving me headaches was doubtful. A few months past and I now had my license, it was the summer of 2003, and I was driving myself to Craig for therapy. At this time I was beginning to really hate going. Therapy was getting harder and my headaches were getting stronger… and then the dizziness came. I kept telling the therapist about the headaches, the eye pain and now the dizziness. He would dismiss my comments and act as if I was just being a wimp. 

Junior year had started and I was still going to vision therapy (the bane of my existence at the time). Each session seemed to cause my now ever present headache to increase. One evening as I was driving home, my dizziness became so intense that my vision blurred and I almost drove off the road. When I pulled the car over, I sat there and shook for about 30 minutes before I had the courage to continue home. I told mom about what happened and she decided that she would try and take as many afternoons off and drive me. Some days however, she just couldn't. And I couldn't have a repeat of what had happened last time I went alone. So one day when mom couldn't take me, I decided after my therapy session, I would try and sleep in the car for a few hours and then drive home. I quickly found out that you could not sleep in your car in that parking lot. A policeman kindly woke me up and told me that this was a private parking lot and that I was loitering. So I drove across the street to the Kmart and went inside. I asked to see the manager and asked if I could  sleep in my car for a few hours before I headed home. He said yes but the look he gave me made me feel like a freak. This was the day I became a slave to sleep. 

So this became my routine when mom couldn't take me. After hour and a half of therapy, I would get a headache and become dizzy. I would then drive across the street and sleep in the Kmart parking lot for a few hours and then drive home. This may sound ridiculous but I was told therapy was the only way to fix going cross-eyed. What choice did I have? My parents didn't have much money and the therapy was expensive, I had to suck it up in order to get better, so mom and dad didn't have to spend anymore money. I had to get better! I WASN'T going to be the sickly, expensive, problem child anymore!….. Little did I know what was waiting for me in my future. 

My senior year was about to start and I had finally been freed of the bondage that was vision therapy. I even had a souvenir, headaches (score!). In the middle of the first day of school I experienced something new, as I sat in the classroom and all the sudden all the light in the room exploded into my eyes. It was like staring into the sun, the pain was so intense my eyes began to water. And then just as quickly my head began screaming and my world began to darken and collapse on me. I can't fully remember the rest of the day, I just remember the pain. August 18th, 2003 was the day I became a slave to light. The day that everything changed. 

Its funny, they say that pain fades in time. Mothers can comment about how painful child birth is (reason 4,682 I'm glad to be a guy) but the actual pain seems to fade from memory. I'm not sure if this is true but if pain fades, the emotions during the memories sure don't. Its very interesting and sometimes hard to relive these memories. I had packed them away so that I would never have to think about them again. Like that one drawer in your house that you just shove random or unwanted stuff into, hope the day never comes in which you might have to go through it all. And so I would like to thank you for reading this post, it makes me feel like I didn't have to go through these oldest memories alone. TBall

"Let It Be", I need to "Let It Be"

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

The Symptoms

So I am going to start out by listing my symptoms. Please do not see this as me looking for sympathy, my hope for this blog is to help someone who needs some help figuring out their journey with Chiari. 

So here are the big dogs:

-Hypersensitivity to light or Photophobia: Although photophobia is the medical term, I'm not a fan of calling it that. The word makes me feel like each time I'm around light I scream like a seven year old girl. (Thank you Joe for that mental picture!)

-Eye Pain: most of the pain comes from the hypersensitivity to light, but there is another pain. This one is really hard to explain. At random times in the day, when my eyes can't handle anymore light or better yet for no reason at all, I will have this shooting pain through my eye. Its weird to say but I can feel that pain in the middle and back of my eye. Its like a hot needle being quickly shoved into my eye. Its so instant and so intense and so unpredictable that I actually jerk my head when it happens. When this happens I get a massive migraine/headache. Which leads me to… can you guess?

-Migraines/Headaches: these are horrible. Some have brought me to tears, others have caused me to hit my head against objects to relieve the pain. I have tried medications, sometimes they help, other times… they don't. Its like a pulsating pain that ripples across my head from the back of my neck, like waves crashing across my brain right to my eyes. 

-Chronic Fatigue: Half of the time I sleep to escape the light and headaches. But almost all of my day, I am exhausted. This is a very annoying symptom. When my friends call me, they have all formed the habit of instead of saying "hi" they ask "did I wake you up?" This is not their fault, because 95% of the time they did wake me up. I just can't seem to stay awake and when I am awake there is the light. So I sleep to escape the light. I could, on any given day sleep 12-15 hrs if I let myself. I have to work really hard just to wake up to have a day. Other times, I have accidentally fallen asleep. There have been times where I grab my shoes to go and work out at 7:00 pm and wake up at 2:00 am with one shoe on, one shoe off. Having no recollection of ever closing my eyes.

-Dizziness: for a long time I thought this was just side affects from the eye problems and the headaches, but recently the dizziness happens with or without the eye problems reaching their extreme and sometimes without the the headaches. I am now waking up with dizziness that lasts for a few hours and then returns at the end of the day.

-Chronic Thirst: I am always thirty. I feel like I am always dehydrated. I constantly crave water. Truth be told I fight this one a lot, I have grown weary of having to pee all the time. 

-Brain Fog: this as you may tell is not a medical term but it fits very well. Most of the time I have a hard time thinking through simple problems, I just feel out of sorts. Like my brain never fully wakes up. 

-Neck Pain: I have chronic neck pain in the muscles of my neck. Now whether or not this is just a side effect from the surgery or is its a symptom I don't know. But this pain is a dull grinding pain like a pulled muscle that never goes away. I wake up with it and I go to bed with it. I have to sleep on a tempur pedic pillow or there will be consequences in the morning. But there is another new neck pain. This pain is a sharp pain that sticks every now and again in the center of my neck, below my scar. 

There are a few little dogs as well:

-Numbness: while this one rarely ever happens anymore, it was extremely prevalent before my decompression surgery. At times, either side of my face or body would go numb. Once and only once, thank God, my entire body went numb, fell face forward into the carpet. We scheduled the decomp. surgery quickly after that event.

-Sinus and Mucous Problems: I have been to an ENT, I am barely allergic to anything (Alfalfa and two types of mold with long names I care not to look up and spell were the winners). My sinuses, for all intents and purposes, have no actual problems apart from a deviated septum (I always think those words sound inappropriate). The ENT could not explain to me why my body produces so much mucous. I have to do a sinus flush twice a day to make sure I don't get a sinus infection. Last year I had around 5-7, I actually had two clinics refuse to treat, them because they happened so often, unless I had a note from an ENT.

-Sleep Apnea: both central and obstructive. Obstructive occurs when the soft palette obstructs (no kidding) the airways when one sleeps. Central in a neurological problem in which the brain and heart and lungs get off rhythm.

-Depth Perception and Balance: Now I am the first one to admit I am a klutz (and yes! That took 5 whole minutes of me sounding it out loud to my computer and poking at the keyboard like an ape AND the use of google to figure out how to spell that one! I hate phonics). But there are times when I will fall over on a flat surface or loose my balance for no reason at all. I also have found myself on some days in which I knock over half of the things I reach for. For all the years of my life the world had no depth; I could look at a mountain and the trees all looked like they laid flat on the mountain's surface. I would misjudge distances all the time. No wonder when I play any sport it was a tragic event. I am happy to say that after my decomp. surgery my world became a pop-up book. 

-Skin Problems: well isn't that a generic and vague symptom. I'm not completely sold on this one but for the past two months or so I have been in this epic battle with two rashes from hell. My PCP (Personal Care Practitioner, which I explain because the first time I read that acronym it took me ten minutes to get it) feels it is two different rashes. Odd things about this bad boy, or boys, is it doesn't hurt or itch. Steroids, topical creams, antibiotics, special soaps, and my personal treatment "Neosporin" haven't fully healed these rashes. Plus when you take off your shirt and our parents and your PCP all say "WOW!" at the same time, it might just be a problem. 

-I also can hear a cracking and popping sound when I move my neck but that just may be from the surgery. 

So as I finish writing this I have one thought cross my mind. "Holy Menorah Batman! I'm a train wreck." 

You may see that I am posting this at Midnight Thirty. Which seems hypocritical from me stating that I am always tired and sleeping. All I can say is, this is my favorite time to be awake. Its dark outside and I can control the light around me. :) TBall

The Great Introduction

This is my official greetings to all who read this blog:

Hello!

Epic, yes I know. Truth be told I am a bit intimidated by writing this blog. First off, I am not the best when it comes to grammar. I feel that the rules change way too much, I also have been told I use commas far too often. I hate phonics, ever have since I was a kid. Those rules need to be fixed as well like ("i" before "e" except after "c") except in the word "weird"… enough said. Also as you can see, I tend to rant. So when it comes to my grammar, spelling and ranting, I would like to apologize now. However, if I wrote something incorrectly and it is causing you restless, sleepless nights, let me know, I will fix it.

Now that the formalities are over let me introduce myself, my name is Timothy Lunny Ball. I go by Tim, Timmy, or Timothy. Lunny which sounds like "bunny" with an "L" is a family name. It was kept in the family as my dad's middle name and now mine. In the future I have a feeling if I have a son, his middle name will be Lunny as well. My primary nickname is TBall and everyone is welcome to call me that. My best friend Leisha, however, has I think, somewhere around 6 different nicknames for me, that's how she works. :)

I was diagnosed with Chiari's Malformation Type 1 in the winter of 2004, right in the middle of my senior year of high school. But the story begins a long time before that. But first let me give you the basic idea that I understand Chiari Type 1 is. This is what the Mayo Clinic's Website explains Chiari Malformation to be:

"Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses.

The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood….

Treatment of Chiari malformation depends on the form, severity and associated symptoms. Regular monitoring, medications and surgery are treatment options. In some cases, no treatment is needed."

Thats simple, or is it? So the research continues. I have researched and compared the definitions of several websites but what I needed to hear how other people have dealt with this problem. I have found two other blogs written by Chiari patients and they explain it so much better. The simplest I can explain it is this: Chiari Type 1 is a neurological disease in which the Tonsils of the Cerebellum (yes, you have more than one set of tonsils in your body, congratulations) become impacted between the base of the skull and the brainstem. It is way more complicated than that but thats the best I got.

The main treatment for this problem is to have a surgery that I was told is called Cranial Decompression. I had such a surgery on March 7, 2005. Then why am I writing about this six years later? I have read that roughly 85% of patients that have this surgery for this disease have a greater quality of life. I think I may be in the other 15% group. Don't get me wrong, my life in the last six years has been great, but a lot of that time was spent in pain.

So what I am planning on doing is going through my entire story. The years before I was diagnosed that are relevant to the journey, the story of my surgery and my recovery, some patches of information while I was in college and the past eight months that have been that hardest to live through, though I think its been harder on my parents, most of all.

It will take me quite a while to write all the background story, my eyes (the largest area of symptoms and problems) can't handle me being at the computer for more that 15-30 minutes at a time every few hours. So bear with me. TBall