Down the Rabbit Hole

I've had a number of people asking me to start blogging my life experience because the last 3 years in particular have been so far from "normal" perception that it holds interest, but part of the problem is that I have trouble actually talking about it for very long and for curious people that's apparently somewhat frustrating. I'm a curious soul so I can relate, and this is an effort to indulge those like myself in that regard. I found out recently that there's a word for my trouble talking and it's called Dysarthria, it's part of a group of communication disorders known as Aphasia. It makes conversation a lot more work than it used to be. Explaining things in text is just easier. Nobody cares about the long pauses. My train of thought is hard to lose while writing because it's right in front of me. Recently we put the last of the large pieces of this very complex neurological puzzle together, and since I have a pretty good view of the Big Picture now, and things make more sense, it seemed like a good time to start writing about the 3 year journey to the virtual hilltop where we can finally see the forest AND the trees. But 3 years covers a lot of information so it will have to be done as installments.

In October of 2005 I had an accident at a fully socialized kennel, where I worked. "Fully socialized" means that the dogs are temperament tested and allowed to run loose together in large enclosures and not stuck in kennel cages. In true California style, it was very "progressive". Almost all our dogs were repeat clients so we knew them well, knew what kind of behavior to reasonably expect from them, and it was really a ton of fun. Most of the time it was a "dream job" for a lifelong dog lover, even though it had nothing to do with my degree work, and I felt very lucky to get paid to have so much fun! The dogs had 2 acres of hillside to run on, an in-ground pool to swim in with supervision, a 10,000 square foot enclosed gravel yard to chase balls in, play stick games, and wrestle with each other and lounge in the sun, and numerous couches to nap on together inside when it was raining. It was a home away from home for most of these dogs and it was usually wonderful for them because there was rarely any of the stress in this environment that there normally is in traditional kennels, and it was a godsend for people who worked long hours but had a dog with a high energy level and needed an outlet for it to curb destructive behavior at home. However, this socialized environment also put a greater stress on dogs to "know their own language", so that their vocal and body language communications didn't confuse other dogs.

One sunny October day, 2 of us had taken about 10 or 15 of the largest dogs down the 2 acre hillside for a run, because tired dogs are usually good dogs. This is Southern California and fire ants are common. One of the sweetest dogs had apparently gotten a fire ant in his paw and he was yelping and crying and carrying on like somebody was trying to cut his paw off, and he would not stand up on his feet to walk. Although it was against my own personal safety rule to attend a hurt dog in a crowd of other dogs this dog was being so pitiful that I immediately knelt down in a fit of compassion and took a look at his paw. A very tall Newfoundland dog innocently gazed over my shoulder in curiosity to see what I was doing and that's where the trouble started. In a dog or wolf pack, this is an act of domination. A boxer dog was out with us that day and he was a regular client, very well trained, temperament tested and passed, but we all knew he had a little bit of a short fuse. I presume in defense of my authority, he launched an attack on the Newfoundland from the opposite side of me, and he thoughtlessly went over my shoulders and skull to do it, pushing me to the ground. A huge dog fight started on top of me and it was absolutely a trainer or kennel tech's worst nightmare. I'm sure had it been filmed it would've been one of those drama video's you see on "Life's Scariest Moments" or something where the dust clears and you are on the edge of your seat going "Are they dead??"

I got up after the fight was broken up and dusted myself off, and I was remarkably okay. No broken bones. No bad cuts either. But my ears were really ringing loudly, my head felt weird, my neck ached, and I knew I was probably going to have some whiplash and a mild concussion. I'd had concussions before, and whiplash, and I had been a nurse so I assumed I had a handle on the situation and a trip to the doctor was going to tell me nothing I didn't already know, and there was nothing they could do for me that I couldn't do for myself. I am stubbornly independent that way. I went home early with a headache, which I expected to last maybe 3 days until the concussion resolved. A week later everything was worse, not better. I couldn't move my neck at all. So I went to see my general practitioner, asked for help, and the medical adventure began. The next month a Neurosurgeon told me that I had had a concussion, and whiplash (No, really? lol), and I also had been born with a mild cerebellum problem called Arnold Chiari Malformation, and perhaps that complicated my concussion a little bit. Oh, and I had migraines. He excused me so that he could attend to a burger and fries that were calling to him from the next room. But I still had one last question, so I called him back and pointed at a white spot in the center of my spinal cord on one of the Open MRI films and asked "What's this?" He says "Oh, that's a Retained Central Spinal Canal, from childhood. Nothing to worry about." Now a soft drink was calling his name too, so I let him go.

My gut instinct was telling me he was missing something. I had no solutions for the problems that weren't going away and I was having a really difficult time talking about it. I don't mean emotionally, I mean it was difficult to put a sentence together and get it out right and be understood. He did refer me to a pain specialist for my migraines. When I told him I had migraine aura almost all the time for the last couple of months he enthusiastically asked me "Oh, you mean like psychics see around people?" and I thought, "Uh, was that supposed to be funny? Oh no, I think he's being serious. That's frightening.", and I excused myself. I gave up on the doctors for awhile and decided I just needed time.

The line was drawn for me one day a few months later when a piece of grooming equipment wouldn't work and I unplugged it from the wall and thought "Oh my! Wow, that is one broken cord! Plugs don't break like that every day!" One of my coworker/friends was standing beside me looking at the same plug and she didn't look surprised at all. Now, if she was seeing what I was seeing she should've had some sort of reaction, a shocked look, a gasp of surprise, something. After all, the prongs were broken off of the wall and stuck in the cord instead of the other way around like they were supposed to be. And there was a very long silent pause while I took a moment to figure out what was wrong with this situation. How could this not be as obvious a surprise to her as it was to me? (insert Jeopardy! jingle here as the moment ticks by). My brain reeled as the incorrect perception slowly reversed itself. It dawned on me what I had expected to see as a "correct" cord was prongs sticking out of the wall, and an empty socket on the end of the cord, completely opposite of how most of the electrical cords in the world work, including this one. There was nothing actually wrong with the cord at all. Was I losing my mind??? Is this how the little old people get the gas and brake mixed up and end up plowing into an open market? What's wrong with me??
My friend asked if I was okay and my very honest answer was "No. I am definitely NOT okay." but I couldn't explain what was wrong. I couldn't explain what I had seen either, not until later. It was very much an Alice in Wonderland type experience but not the type they make into a fun park ride. This scared the hell out of me. I prayed this was a one time deal but deep down I was scared it wouldn't be.

I spoke about this to one of my new friends with Chiari who told me that this definitely was NOT a chiari symptom and that Neurosurgeon had obviously missed something important. She had met another Neurosurgeon recently and had a lot of respect for him and she got me into see him. He turned out to be a brain and spinal cord injury specialty Neurosurgeon and he had some real answers, which will be the subject of my next post.