Things happen and at the age of 34, I found myself the sole supporter of a family of four. I had no education, no work experience, and more fear than I knew I could possess. I grabbed the proverbial bull by the horns and did what any Mother would do. I got a job and supported my “babies.” I swore then that I would never be dependent on another human being as long as I lived. I would never find myself in that place again. Yeah. Okay.

About a year after working, I realized that I was surviving, but that I was really getting no where without an education. So, I went to school. Five years and two degrees later,  I still wasn’t where I wanted to be…so I applied for Grad School. That brings us to where we are today…just without all of the details in between. Details like…having an accident at work and finding out that I have a Chiari I Malformation…something I was born with but had basically stayed asleep until I fell and woke it. Details like…quitting my job in North Carolina and packing up and moving to Georgia to be closer to my family as my condition has progressed steadily…even rapidly at times. Through all these details…I’ve maintained my independence. That has been the only constant in my ever changing world.

Today, nearly three years after I woke up that sleeping beast Chiari and fighting brain surgery with everything I’ve had…I’m at the end of my fight. My hard drive has failed. What does that mean? In my attempts to educate myself and understand what Chiari is…that’s been the way I’ve had to think about it…just to help me comprehend it. It is a VERY complex and confusing disorder which is probably why finding a doctor who understands it and knows how to treat you is like finding that ever elusive needle in a haystack.

A computer has a hard drive. As long as it is working properly, all of the hardware and software applications work properly. If your hard drive fails…your monitor won’t display…your Operating System won’t boot up…your keyboard and mouse are useless…your speakers won’t work. Not only that…but you can’t click and open your iTunes…you can’t open up a Word document and start typing text…you can’t plug in your camera and upload pictures and edit them. You can’t surf the Internet and watch videos on YouTube. Your entire computer is worthless without a hard drive that functions properly.

Chiari is the same thing.  Imagine your brain stem being the hard drive. It controls everything your body does…both consciously and subconsciously. Imagine everything else…your heart, your limbs, your eyes, your ears, fingers and toes, bladder, bowels, and all of your other various organs and body parts as hardware (like your monitor, keyboard, mouse, etc.). Imagine then that every bodily function…breathing, swallowing, your circulatory system, digestion of food…things you have no control over…those are your software applications (like iTunes, Word, Excel, FireFox).  Now take it one step further…imagine what would happen if your hard drive failed. If you can imagine all of that…then you have successfully just imagined what it is like to have Chiari. Now, you know what I mean when I say that my hard drive has failed.

I’ve been trying to operate at full capacity for weeks, months, even years now with a failing hard drive.  I’m having increasing difficulty getting my Operating System to even boot up anymore.  Luckily, I’ve got one of those jobs where there are absolutely no expectations placed on me. I just sit there for 8 hours a day. But I’m having difficulty even managing to do that. I can’t help but think that this is God’s funny way of breaking the news to me gently since hitting me over the head with forty tons of bricks has proven time and again that I still don’t pay attention. After all, when I got slammed to the concrete floor, broke my tailbone, fractured my pelvis, and suffered brain damage…it never even slowed me down.

I’m paying attention today. That’s all I can really do at this point and time. I’ve spent the past few days looking at where I was even six months ago compared to now. I’m not going to get better at this rate. It doesn’t take a rocket scientist to realize how much worse I am today than I was then. Or even how much worse I am than I was a month ago. I’ve been fooling myself. I must be the most stubborn human being on the planet. Sometimes, I make myself crazy with my hard headed ways.

I called my Mom yesterday on my lunch break. I was having a really difficult day at work. Sitting there. I couldn’t stand sitting there. It hurt. I was hysterical. I couldn’t figure out what sort of loser I was if I couldn’t even sit there for 8 hours and get paid for it. She told me the exact same thing that the doctors I saw a couple of weeks ago told me. It’s time. It’s time for me to take care of me. It’s time for me to swallow my pride and realize that sometimes, it’s okay to need help.

So…here goes the next chapter of my life. I’m scared to death. I’m angry. And I’m sad. I’ve been at my current job for four weeks. I have now called out twice which means that I will more than likely not have a job by the end of today. I’m in mourning. For the life I want. The life I had. Please pray for me. Not only for my physical well-being, but for my emotional well-being, too. Mostly for my emotional well-being. I’m 42 years old and I am about to move back in with my parents. I’m about to surrender all of my independence. I’ve fought it for almost three years now. If I put this much energy into getting better, I should be better in no time at all! I have drive, passion, and determination. It just needs to be refocused into something that will benefit me instead of hurt me. Fighting against the inevitable is getting me no where fast. If anyone could ever really take two steps forward and end up three steps back…I think this is probably what they are talking about.

And for the record and just so my friends, family and people who love me know, I’m going to need lots of support and constant reminders during this transition of being completely independent to becoming a totally dependent, non-productive member of society. Remind me that this is only temporary. Remind me that this is what is best for me. Remind me that I have to take care of me now so that I can be here later. Remind me that I am going to be SO much better in the long run. I hate being so needy, but the way I see it…no one can know what I’m going to need if I don’t let them know. My plan…should things go the way I hope and pray…is that in a year from now, I will be fiercely independent once again and better than I ever was before. I’ve decided that I am telling myself through all of this that I’m not losing my independence…it’s just getting an over-haul. That’s MY story and I’m sticking to it!!

I knew that when I got face-to-face, I would ask her if she could repeat it again in hopes that if there was a problem or issue, I could read her lips and catch it. I did this and sure enough, it was not correct. Whether that was my fault or hers, I do not know. What happened next, however, there was no denying who was at fault. I explained politely that the order was wrong and I began slowly repeating the correct order. Before I could finish, she stopped me and began screaming at me. What she said, I have no idea. But from the tone, she was berating me for correcting her at the window instead of paying attention and correcting her when I first placed the order. I sat there in silence. A bit stunned. My entire life did not lead up to this moment so I could deal with a surly drive thru McBitch. OR DID IT???

Recently, I have had a lot of problems with depth perception. Especially when I am driving. When making left hand turns, I cannot tell how fast cars are approaching me. I often sit there for entirely too long trying to ensure that I have ample time to make my turn to avoid being hit by an oncoming vehicle. It first started at night. The headlights blinded me. Over time, I have begun to notice that it happens during the daytime now, too.  I’ve been known to drive past the left hand turn and turn around and come back just to avoid it altogether. Sometimes though, I just shrug it off and remind myself that it is better to be safe than sorry. I figured it isn’t the end of the world. And it isn’t like I sit there for an hour waiting for the perfect opportunity. I simply do not take the chances that I once took when I had better perception.

Since moving to Atlanta, I’ve noticed that I have begun to catch a lot of grief from other drivers. They lay down on their horns, yell, and throw up hand gestures. The other day, I was sitting in the turning lane and had a car literally swerve close enough to rattle my nerves and yell something out the window. Luckily…I am hearing impaired which I mentioned earlier…and that helps because I am clueless when it comes to what is said. I sat in that turning lane for a few more seconds trying to regain my composure and I thought to myself…my entire life did not lead up to this moment so I could deal with this impatient jackass. OR DID IT???

About a week or so ago, I was standing in line at Walgreens to pay for the items that I had run in to get. I had patiently waited my turn while in line. It was rather busy that day and there was a line formed behind me. When it came time for me to pay, I struggled to get my debit card out of my wallet. I was struggling because my fine motor skills aren’t what they once were and my fingers have a mind of their own. They do not always work the way they are supposed to and they usually do this at the most inopportune times. This being one of them. I got frazzled and this doesn’t help my cause any either.

Being my own worse critic, I was already chastising myself in my head. My hands began shaking and that made things a hundred times worse. I apologized to the cashier and to the people behind me. I saw the sympathetic smiles that I got in return. They didn’t help. Then I heard it. A guy somewhere behind me let loose on a tangent. About that time, I had gotten my debit card free and swiped it as quickly as I could. I was so shaken that it took me several attempts to get my PIN number correct. All the while I could hear this guy behind me huffing and puffing and grumbling. I was embarrassed and ashamed. I had a similar situation at a gas station a few days before then when I was having difficulty grabbing coins out of my wallet. My fingers chose again that moment to quit working. And again, I dealt with the groaning and moaning of a guy who obviously had more important things to do than to show someone a little patience and understanding. Both of these times, I again realized that my entire life did not lead up to this moment so I could deal with indignant oafs. OR DID IT???

The answer to this question for all three of these scenarios is an emphatic “YES!” I was born with a birth defect although it took me 40 years to get a diagnosis. I have a Chiari I Malformation. I was born this way. After suffering a catastrophic injury, I sent this disorder into a progressively worsening symptomatic status. In addition, I suffered a severe brain injury. My brain has shifted into one side of my skull. My brain stem is tilted and the tonsils of my brain have become deeply impacted in the opening at the base of my skull and laterally across my brain stem. This is the reason for my hearing loss. This is the reason that I do not have the ability to determine depth perception. This is the reason that my fingers don’t always work the way that they are supposed to work.

These are only a few examples of the kind of stuff I deal with on a daily basis. It’s enough for you to get an idea although I could sit here and type out dozens of scenarios. The reason I believe people are so harsh is because people like me do not look sick. I look just as normal as the next person. Therefore, I do not look “brain damaged” even though I could show MR images to prove otherwise. I could show reports that detail the extent of the damage. I don’t carry these around with me, nor should I have to go to such extremes.

Life has taught me that I simply need to forgive these people because they do not understand. I cannot hold a grudge. I cannot get mad. That hurts no one but me in the long run. At the end of the day, these people don’t care what I think about them. They probably never give me a second thought after they have behaved badly and have gotten on with the rest of their day. I doubt that lady at Mickey D’s went home and lamented over me not getting my order right. The jackass that scared me on Roswell Road by swerving like he was going to hit me probably didn’t give me another thought after he’d traveled a mile down the road. The guy at Walgreens and the guy at the gas station had probably already forgotten about me by the time I reached the doors of those two places and walked through to my car.

I thought about it though. For days. For weeks. For over a year. I am still thinking about those situations I found myself in. Not because I am angry but to remind myself that I have a brain disorder. I’m not as good as I once was. I need to learn my limitations. Most importantly, I’ve learned that I must forgive. If I can’t forgive these people, then Chiari wins. The brain damage wins. And if that happens, I lose. I become a bitter, nasty, angry person. My entire life DID lead up to these moments. My entire life I have been learning and gathering the tools necessary to learn how to cope in situations just like these. I have spent my entire life becoming who I am today. How I deal with moments like this prove my character. And it proves to me that I am in this to fight. Chiari can take away my hearing, my vision, my ability to walk, talk, and use my hands…but it can’t take away me. I won’t let it. I’m in this fight to win. I will never settle for less than that. Ever.

My lesson to others: Learn a little tolerance, people. Embrace differences. If we were all the same, what a boring world it would be. Learning that not everyone is the same should be easy, but I have found that isn’t true. Don’t believe me? Look around you. There is more intolerance, hate, and prejudice around us than should be. If we all learn to try and understand this one thing, it would be a much better world for all of us. Learn that you don’t always know what is going on with another person. Learn that tolerance will make your day brighter. Tolerance will decrease your stress levels. It will make you a kinder, gentler person. A little tolerance can go a long, long way. Remember that.

There is no worse feeling than being ashamed to exist. That’s NOT OKAY. Sometimes, I feel…wait, NOT feel…I am very aware, that everything I do or say has the potential to piss you off and aggravates you to no end. I am all too aware of my numerous flaws and knowing that, I try to circumvent my own BS  so that I am not too much of an aggravation. I try to balance my own shortcomings with thoughtful and good things just for stability. I have had relationships with people who are generally like me, and there is just acceptance, acknowledgement, and a sense of humor: “Sheesh…here I go again…putting the MORE in Moron!!”

Being in a relationship with an earthling, when you are me, is always a minefield. Judgement. Usually mine. Judging myself. Frustration. Legitimate frustration.  On their part. Then you have to separate what is your BS and what is their BS. And honestly, a shitty day makes everyone crankier, intolerant, and frustrated. However, I have learned that I did not get out of my incredibly toxic, effed up marriage so that I could go through life on my knees apologizing for my existence. I can only keep trying to improve, having learned that comparing myself to “normal humans” is not only a huge wave of shittiness and SO incredibly unhealhy, but ultimately it becomes self destructive. Major conflict there. I can only compare myself to myself, where I used to be. Many feel this is a cop-out or excuse. I have been taught that with effort, practice makes PROGRESS. I really hope this works out.

What do I like about me? A whole bunch of crap.  How much about me is a pain in my own ass? A whole bunch of crap. There you have it.

Shame and guilt. These things will absolutely kill and devastate a person. Most reasons we do anything is because “It seemed like a good idea at the time,” or “It eased the unbearable pain.” So, I reason with myself. At least I try. I tell myself every day, “Please try to be compassionate toward yourself. Much like you would to someone you care deeply about. What you say to yourself would be considered abuse if you said it to someone else.” In my experiences, I have never seen hammering someone’s flaws has ever done anything but tear them down. I try to build people up, not tear them down. Why is this concept so difficult to remember when I am dealing with myself?

Enlightenment. I care less about being normal than I do about being healthy, happy, and GOOD. This entails swimming upstream a lot of the time. Hard. Not easy at all. And definitely not comfortable. But I know what I know.

I have much more experience at being crazy than I have had at being well. And whole. Strange? Maybe. But that’s between me and me.

Is it worth it? DUH! You have to learn. And build a core. A self. But HELL YEAH! It’s worth it.

I try to understand these things to help my own peace of mind (such as it is), and 99.9% of the time, it is absolutely true.

People just don’t know how the hell to act sometimes; they just do what occurs to them in their head to do. And many times, people feel shitty about themselves. Truth.

Any time you invest in working on yourself, it pays off a thousandfold. A MILLIONFOLD. And you can learn…learn how to deal with people pleasantly and effectively. Especially when dealing with self. And when you try, you see it works.  Very well, in fact.

Just reflecting.

Because people really act like total wackjobs sometimes. Myself included…or maybe that should read “Myself mostly.” One of those.

I’m really glad I have the ability to learn and apply these things. Now, I have to work on doing it. 

Reality bites. Self actualization is a process. This is truthful. At least for me.

Here’s hoping…hoping this will help shed some light on why I am who I am. Me, in general.

But funny thing about it…not about life, but about me…I’m way too strong to get hung up on anything. Any obstacles that get in my path, I just jump over ‘em and keep on walking.

What doesn’t kill you makes you stronger. It also makes you a helluva lot smarter. One stupid decision can bring on a whole load of great ideas and motivation.

So life, though you may be a funny little bitch, you ain’t got squat on me. Cause whatever you try and throw at me, I’m gonna deal with it and always come out on top.

~Another deep thought by Danica. Putting the sync in idiosyncrasy since 1968~

I wrote this in April of 2009. Little did I know then how much of a challenge it would be staying true to myself and these words over the course of  the past two years. Absolutely amazing.

I’ve heard it said that ignorance is bliss. I truly believe that. It was a year and four months after my diagnosis of having a Chiari I Malformation that I wrote those words. Little did I know the challenges I had met were mild in comparison to those that would come soon thereafter.

Here I sit three years and four months after my diagnosis with less questions and more answers than I started with, but I do not feel any wiser…nor do I feel any better. Instead of dwelling on those things; however, I do feel stronger, more informed, and better equipped to handle what life throws my way.

I’ve lost friends along the way. I’ve managed to strengthen other friendships. And I’ve made tons of new friends. Life is a funny bitch. No doubt. I’ve heard it said many times that the friendships lost as a result of my disorder weren’t really friends…I am not sure if I buy that. I think some people are so insecure with themselves that it is impossible for them to understand the idiosyncrasies that evolve within people like me…people with brain disorders. I wish that knowledge was enough to make the pain less painful, but it isn’t…I just simply try to move on…and I often reflect on the emptiness left by those who made an obvious impression on my life. I am grateful for the good times and grateful that some how life seems to sort out the people who should be in our lives and those who shouldn’t. No matter how much pain it causes, I know deep down that the people who have chosen to no longer be part of my life because they couldn’t handle me at my worst…really have no business being in my life. And it’s okay to miss them. It’s okay to long to have them back. What’s not okay is trying to force them back there. I’m glad I know the difference.

Today, I am sitting in a totally different state…in a totally different city…in a totally different life than I had three months ago. The changes and transformations in my life over the past three months have been monumental.  Not only physical changes and transformations have occurred. There have been major emotional and mental transformations as well. Yep. Life is a funny bitch. I knew each day where I was going, what was going to happen, when I would arrive back home, and who would be there waiting for me. In other words, there were rarely any surprises. Today is full of surprises though. Each new day is exactly that…brand spanking new. I have no idea what I’m doing, where I’m going, or what is going to happen. I only know that in the end, I’m going to be okay. In other words, I know me.

So life, I know you’ve got me down right now…and I’m gonna let you have your fun. Just remember, it’s ME you are dealing with…The Divine Ms. M. Remember, I’m entirely too strong to get hung up on anything and whatever you decide to throw at me…any obstacles that get in my way, I’m just gonna jump right over ‘em and keep on walking…looking back only to laugh at your stupidity. As long as I still have a morning to wake up to, I’m going to take the punches and learn from them because it IS true that what doesn’t kill us does make us stronger and it makes us a helluva lot smarter. I’ve made plenty of stupid decisions, but I know that from each of these stupid decisions that I’ve found plenty of motivation and I’ve gotten tons of great ideas. Remember life, you ain’t got squat on me…those words were true two years ago and they are true today. Whatever you try and throw at me, I WILL deal with it and I will ALWAYS come out on top!!

In 1697, William Congreve wrote The Mourning Bride. An excerpt:

Musick has Charms to sooth a savage Breast,
To soften Rocks, or bend a knotted Oak.
I’ve read, that things inanimate have mov’d,
And, as with living Souls, have been inform’d,
By Magick Numbers and persuasive Sound.
What then am I? Am I more senseless grown
Than Trees, or Flint? O force of constant Woe!
‘Tis not in Harmony to calm my Griefs.
Anselmo sleeps, and is at Peace; last Night
The silent Tomb receiv’d the good Old King;
He and his Sorrows now are safely lodg’d
Within its cold, but hospitable Bosom.
Why am not I at Peace?

The Mourning Bride can be attributed to a couple of famous quotations that you have heard although most often these quotations are really, in fact, misquotations. From this particular excerpt, “Music hath charms to sooth the savage beast.” is quite obviously a misquotation once you have read the original. In this same play, “Hell hath no fury like a woman scorned” has also been misquoted. The original quote was actually “Heaven has no rage like love to hatred turned, Nor hell a fury like a woman scorned.”

Well, there is your English Lit lesson for the day. My point is this…heaven may not have a rage like love to hatred, nor hell a fury like a woman scorned and music may have charms to sooth a savage breast, but I, for one, know that music also has an unparalleled ability to sooth the savage beast within me.

When I’m down and I am in enormous amounts of pain…whether that be physical or emotional pain or even a combination of both…I can load up my iTunes or plug into my iPod Touch Me Not…turn the tuneage up WAY loud and for a moment, I can escape reality. I can listen to Mark Knopfler and for a moment, I am able to remember that there should be laughter after pain…there should be sunshine after pain…these things have always been the same…so why worry now?

No two Chiarians share the same story. No two Chiarians are the same. This is MY story. This is MY Chiari journey. It is my hope that through sharing my story, you will know that you are never alone.

Before Diagnosis…

I lived my life for 40 years without ever knowing that I had been born with a birth defect. To me, that is one of the most incredible parts of my story, which holds true for most Chiarians. The not knowing will forever blow my mind. I had headaches my whole life and I honestly believed that everyone had headaches so that was never a red flag that anything was wrong with me. I can remember as a little girl telling my Daddy that my head hurt. And my Daddy being the silly guy he is would always respond, “If I had a head like yours, it would hurt, too.” I would always laugh at the silliness and that is probably what helped in not making me too concerned with having headaches. After all, if it were truly a bad thing, my Daddy would have been worried about them and if he and my Mom weren’t too worried, then I must be normal. So, I’d take baby aspirin, Tylenol, ibuprofen…over the course of the years, the treatments offered for headaches would change and I would adapt and take whatever was available in the family medicine closet to try and get some relief. Rarely did over the counter medications work, but eventually, the headache did go away, so no harm, no foul…life goes on.

Before adolescence, my pediatrician diagnosed me with scoliosis. I saw a specialist at Emory until I reached the age of moving on my own. I never gave the scoliosis another thought for over 20 years. It was a mild case and the only treatment had been regularly scheduled appointments at Emory to keep an eye on it, so there was no reason for alarm. Even today, I only mention it because it is part of my story. I still don’t know if it is a relative piece to the puzzle. It’s definitely not the most important piece, but it is a piece all the same.

Over the course of my first 40 years, I lived a pretty normal life. I had some issues during my child bearing years which resulted in the loss of five pregnancies; two of these in the first trimester, two in the second trimester, and one ectopic pregnancy which resulted in a ruptured fallopian tube. At one point, I was diagnosed with hormonally induced migraines and endometriosis. I was told that I might want to consider a hysterectomy. I had recently divorced and decided that at the age of 35, knowing that God had blessed me with three of the most amazing daughters, to get the hysterectomy. Honestly, the headaches did get better. I rarely had them any more. Now, of course, when I did have them, they were horrible. But going back to everything I believed growing up, every one has headaches, so this was of absolutely no real concern to me.

They say that hindsight is 20-20 and I believe no truer statement has ever been uttered. Some of the other things I had sought treatment for such as unexplained, violent vomiting which resulted in major weight loss (over 30 pounds) in very short amounts of time (less than three months) had scared me into believing I was REALLY sick and dying on multiple occasions. I went through nearly 20 years of various testing and diagnoses…CAT Scans, depression diagnosis, thyroid testing, diagnosis of depression, diabetes testing, depression diagnosed, spastic colon, depression, irritable bowel syndrome, depression, panic disorder and, of course, depression…the list goes on and on and on. To this day, I’m not sure how much of any of it is real and how much was merely grasping at straws to figure it all out. I do know that I ignored so many telltale signs that my body was screaming for me to look at, but life with three children who were born within three years of each other was so overwhelming that I ignored myself. One of these signs was a hearing loss that worsened over the course of 20+ years, but I will tell you about that in a little bit.

The Defining Moment…

Act I.

PROLOGUE.

Two offices inside a thriving business located across the hall from each other.

The time was August 2007.

An accountant who had no idea she was a walking time bomb

She lived her life to the fullest and knew not her limitations

She rose to every challenge and fought with great courage and tenacity

A co-worker had suffered a terrible stroke

This left the accountant with double the duties and responsibilities

What began as just another end of month closing for the accountant was anything but normal.

She never knew that life as she knew it would change forever in the blink of an eye

Scene 1. Two offices.

Enter the accountant into office one. She had begun busying herself with the typical end of month closing activities that were her responsibility. Once the processes had begun, fade into office two where she began the responsibilities of her absent co-worker. For the next three hours, the accountant was running back and forth between the two offices running various accounting closing functions on the computers located in each office. She began having difficulty maneuvering around office furniture and in an attempt not to cause herself harm from continuously tripping over the chair at the desk, she slung the chair in office number two across the room. Several hours had passed and she was getting close to accomplishing the monumental tasks she had set out to tackle. She had a phone call.

The Receptionist: “You have a phone call. Which office should I send it to?”

The Accountant: “Send it to Dianne’s office!”

(phone rings)

The Accountant: “Hello? Oh, it’s YOU. Thank goodness.”

(Realizing she could take a break from her frenzied routine for the day, she decided to take a load off. She could have sat down slowly. Maybe even gracefully. But she sat as though she was a woman with a purpose. A purpose to finally rest a minute. As she began the decent downward, she realized, the chair was across the room. She didn’t stop until she met the concrete floor. She never missed a beat with her phone conversation, but inside her mind, she knew something was terribly wrong. Tears flooded her cheeks. The person on the other end of the line never knew anything had happened. Her ears were ringing loudly. Her body was screaming from the trauma. Her pride refused to allow her to stay there on the floor and she quickly crawled to the desk and pulled herself back to her feet. She finished her phone conversation and pulled the chair back to the desk and sat there. All the while knowing something was wrong. Terribly wrong. She chalked it up to embarrassment. After all, who wouldn’t laugh at someone who missed their chair? She finished her work day as though nothing had happened.)

Scene 2. Home.

By the time the accountant made it home, she was hurting terribly. She crawled up the stairs to her bedroom, took 800 milligrams of ibuprofen and went to bed. The next morning, she couldn’t move.

The Accountant (screaming loudly): “Can somebody PLEASE come help me!!”

Her daughters: “What’s wrong, Mom?”

The Accountant: “I don’t know, but I cannot move.”

(Her daughters helped her out of bed. Once standing, she realized that she couldn’t lift her right leg off the ground. Her daughters helped her get undressed and into the shower. She showered quickly and the daughters helped her get dried off and redressed. She then drove herself to the Emergency Room.)

Scene 3. The Emergency Room.

The Accountant explained to the ER staff what had happened. X-rays were ordered.

The ER Doctor: “That must’ve been some fall you took!! It’s no wonder you are in so much pain. You have a broken coccyx (tailbone) and a fractured pelvis! I’ve written you a prescription for pain medication and here is an inflatable doughnut for you to sit on. It will help disperse the pain and keep the pressure off your coccyx until it has time to adequately heal. This process can sometimes take as much as a year to completely heal. You should take it easy and get plenty of rest the next few days.”

Fade Out.

What Happened Next…

I did take it easy for a while after that painful adventure and the doctor was absolutely correct, it took months for me to heal. I got SO sick of hearing jokes about my booty and being asked how my booty felt, I could have screamed!! That’s probably the main reason that I ignored things that were happening inside. I didn’t want to draw any more attention to my booty than had already been drawn.

A year and a half goes by and my booty has fully healed; however, I began having some other issues. Severe pain in my neck that I had at first attributed to sleeping wrong, which couldn’t have been the case after it happened for more than six months straight. I mean, who can sleep wrong EVERY single night for more than six months??? There was also a nagging pain in my lower spine that hurt all the way into my butt and hips. My pelvic region began going numb as if it were asleep. Sometimes, it even had that tingling feeling like when your foot goes to sleep. There were other things happening as well. I began having severe balance issues. Staying on my feet became a challenge. Headaches increased in severity and in frequency. I began having vision issues…things such as depth perception, floaters, jagged, bright lights jumping around. I was nauseous most of the time and eventually began vomiting almost daily. My feet had become numb, yet they ached and hurt, too. This made no sense to me. I couldn’t understand how something that was numb could hurt. There were many other things; however, they were not nearly as alarming to me as these that I’ve mentioned.

That’s when I began doing my own “research” on the Internet and had convinced myself that I had Multiple Sclerosis. It was the week before my 40^th birthday and I scheduled my yearly physical examination. It was also a year and four months since my fall. I never even put the two together in my mind. I know that sounds like it would have been a given, but I figured I had completely healed from that, so whatever was happening was new. So, I made an appointment with my family doctor.

At the time of my appointment, I explained to the doctor my concerns. She dismissed it all. She was standing behind me pressing that cold stethoscope on my back and telling me when to take breaths and I wasn’t cooperating. I couldn’t hear her commands. She walked around to the side of me and got my attention and asked me what was wrong. I was a little confused and just looked at her. She explained that she was telling me to take deep breaths and wanted to know why I wasn’t. I told her that I hadn’t heard her and that I was sorry. She became immediately alarmed at this statement. She began asking questions about how long I hadn’t been able to hear. I told her that my hearing had gradually gone over the course of 20 years. I didn’t know why and no doctor had ever seemed to think it was a big deal, so nothing had been done about it. She referred me to an ENT immediately.

The appointment with the ENT was the week of Christmas… Christmas Eve to be exact. After about two hours of testing, it was determined that I had a total hearing loss in my right ear and approximately a 40-50% loss in my left ear. She stated that I was “legally deaf” which made me laugh. I was grateful that if I had to be deaf, at least I was legal instead of being illegally deaf. Wouldn’t that suck to go to jail for being illegally deaf?? Okay. Bad joke maybe, but bad jokes are what get me through. Believe me. The bad jokes only worsened from there. The ENT explained to me that she believed one of two things were happening…I either had a brain tumor or else the main blood vessel in my brain was kinked like a water hose and that was causing my hearing loss. Merry freakin’ Christmas!! I somehow managed to make it through Christmas that year with my sense of humor left in tact; however, I only shared the news with my daughters. I figured they needed to know why I was in a haze during the holidays, but I didn’t want to ruin anyone’s Christmas, so we kept it to ourselves. Humor got us through. For the next week, I blamed every stupid thing I did on my “brain tumor”…bad parking jobs, forgetfulness, and anything else that suited me.

The ENT did send me for an MR of my brain. Within that week after Christmas, I had this MR done and I returned to her office where she greeted me with the best news I’d ever heard. She told me that I did NOT have a brain tumor and the main blood vessel in my brain was fine. Instead, I had a Chiari I Malformation. She explained that I was probably born this way. She didn’t know a lot about it, so she referred me to a neurosurgeon at Duke University. She said he was “the best” in her opinion and that I would be in very capable hands. I can remember almost skipping to my car after that appointment. One year later, I reflected on this moment and realized that the old adage “Ignorant is bliss” probably came from a moment exactly like this one that I was experiencing.

I went to my appointment with the neurosurgeon who I will affectionately call “Dr. Clueless.” He ran a battery of tests on me during that appointment and he explained to me the best he could what a Chiari I Malformation was and what it meant for me. He told me that I had “a great story” and that he would “love to do my surgery” and he explained exactly what this surgery would entail. Brain surgery???? Seriously??? A week before I had been skipping to my car and now I was hearing brain surgery??? I was stuck in a REALLY bad dream. I told him “Thank you, but no thanks.” I thought the entire thing was absolutely ridiculous. After all, the ENT had told me that I was probably born this way. And I had only heard the words “Chiari I Malformation” the week before for the very first time. There was NO way I was letting anyone crack my head open like a coconut. I had gone 40 years like this…why brain surgery NOW??? Then, to make matters worse…he had told me that there was “less than a 20% chance of fixing me”??? Umm. NO!!! That was my final answer.

He told me that I needed to stay under a doctor’s care and said he would refer me to a neurologist in his practice. I called every week for several months and I never got that referral. So, I began going through my provider directory and quickly discovered that as soon as I mentioned “Chiari,” no one had any openings. I was down to the last neurologist in network and finally, she agreed to see me. I have affectionately named her “Dr. DumbAss.” I only saw her twice. These two visits cost me literally thousands of dollars. She was trying to diagnose me with Lupus and malnutrition. She wouldn’t even talk about Chiari. She said that I had something going on, but there was no way that it was Chiari. I truly believe that had I continued to see her, she would have spent however long I allowed racking up tons of bills and coming up empty handed. Luckily (and I use that term somewhat loosely), I had lost my insurance at work and it was replaced with a Catastrophic Comprehensive Coverage only policy. That was my last doctor appointment for over a year.

What to do, what to do…

I spent the next year or so educating myself as much as I could. I made some GREAT friends along this journey who have helped me to understand this condition. I soaked up information like a sponge. All the while, I had problems that were progressing rapidly. I made several trips to the ER for headaches, rapid heartbeat, blood pressure issues, blue-ish purple legs, back pain and came up empty handed. In one ER visit, the doctor kept calling it my “Chianti” and it was then and there that I realized, I was screwed. I was on my own in trying to get treatment, but luckily God had placed a whole bunch of people just like me on my path to cheer me on, offer encouragement, share in my fear of the unknown, and to simply love me. I learned quickly, in this life, that’s all you need. A good support system. And I have the BEST. No doubt.

The only thing that was keeping me down was lack of insurance. I struggled with this for over a year. Even if I did come up with answers or even a game plan, how in the world was I going to do anything about it?? I figured I would cross that bridge when I came to it. What else could I do?? I continued on my journey and then, the most miraculous thing happened. I heard of a doctor who was close enough for me to get to, I only had to come up with the money for the initial examination. $900. Wow. It may as well have been a billion dollars, but I was determined. I knew this was my only hope. I had to get in to see this miracle man that one of my Chiari friends had dubbed “The Brain Whisperer.” So, when I filed my taxes this year, I knew where that money was going. No doubt.

The Brain Whisperer…

I made an appointment to see Dr. Rosner on Valentines Day this year. I was SO excited and anxious and nervous, but for the first time since this had begun nearly four years ago, I had hope. Hope for answers. Hope for a game plan. It came to be and for the first time since my original diagnosis, I received ALL of this and more.

Dr. Rosner was everything I had hoped for and so much more. He only sees new patients on Monday mornings at 8:30 a.m. What I didn’t know was that he only makes one appointment for that morning. Monday, February 14^th, I was that appointment. He spent two hours with me. He was incredibly thorough and validated my thoughts, my feelings, and my symptoms. That was worth more to me than I can even find the words to describe. I was validated. I wasn’t crazy. I wasn’t depressed. I wasn’t a hypochondriac. I have a Chiari I Malformation and for the first time, I finally knew what that meant.

I have a 7.5 mm herniation. Most people’s skulls and brains are symmetrical. This means that if you were to draw an imaginary line down the middle and fold it in half, they would be identical. People with Chiari do not have symmetrical brains. Not only is my brain not symmetrical, neither is my skull. One side is much larger than the other…even though, in reality, my skull is not large enough to hold my brain. When I fell, my brain shifted into the larger side. My brain stem is now tilted. My brain tonsils are also falling out the opening at the base of my skull (the foramen magnum). My tonsils are deeply impacted within the foramen magnum and laterally across my brainstem. My right tonsil is much lower and larger than the left.

I have intermittent weakness in both my upper and lower extremities that have increased over time. I also have difficulty with memory and cognition. Dizziness and balance issues are always present. If I stand up too quickly, I black out. If I bend over, I black out. Please keep in mind that by “black out,” I do not mean pass out. I mean that literally everything goes black. I, personally, have never lost consciousness. Doing simple mundane tasks such as laundry can cause black outs and severe nausea. The act of simply bending over to empty the dryer and standing up to hang up piece by piece can ruin my entire day.

In addition to the issues I mentioned earlier in my story, I also have bladder and bowel incontinence issues. Embarrassing? Yes. Most definitely. Especially since I am only 42 years old. I had no idea these were related to my brain issues. I have intermittent abdominal pain and cramping accompanied by either constipation or diarrhea. Females need to be aware of any changes during your cycle. I thought because I had a hysterectomy that I would be immune; however, I still have my ovaries. And although I am single, I’m quite certain that if I were sexually active, I wouldn’t be able to reach orgasm due to the paresthesia  in my genital area. Dr. Rosner agrees with me. One of the questions he asked me was about my sex drive. I explained that it was non-existent which is a stark difference from where I was even two years ago.

The official diagnosis:

1. Adult Chiari malformation with multiple neurologic findings and symptoms.
2. Neurogenic bladder secondary to #1.
3. Sympathetic dysautonomia/NMH/orthostatic intolerance secondary to #1.

The game plan:

1. Craniovertebral MR scan with quantitative views of the cervical spine
2. Thoracic MR scan to rule out syringomyelia
3. Flexion extension cervical spine films to establish craniovertebral and cervical stability
4. Refer to urology for urodynamic evaluation
5. Refer to cardiology for tilt table evaluation of orthostatic intolerance

Once I’ve accomplished these given tasks in my official game plan, I will meet with Dr. Rosner again to discuss brain surgery. It is my understanding that if I do not get surgery; I will only get progressively worse over time. This time, I feel confident in my neurosurgeon. This time, I feel better educated and equipped to make this sort of decision. This time, I will be getting brain surgery. There is hope for Chiarians. There are good doctors out there. If you read nothing else in this enormously long story of my Chiari journey, PLEASE read this…don’t let the doctors choose your treatment if it doesn’t feel right to you…don’t let them decide what’s best for you if you don’t agree. Educate yourself, find a support system (even if you have to create it yourself), look for me on Face Book (Danica Grider Martinson) or comment here and I will put you in touch with the BEST people on the planet. This is YOUR life. YOU be the one in charge.  No one knows you like you know yourself. Remember that. And most of all, listen to your body. I ignored my body for entirely too long. This made Dr. Rosner’s job much more difficult than it had to be. I’ve had to promise him that I will pay attention and listen. And remember that no two Chiarians are the same. We are each unique and different. We each have a story. This is simply mine.

Until We Meet Again…

As my Chiari journey continues, I will update my story. But I would like to leave you with links to my greatest sources of information thus far…

www.conquerchiari.org

www.ASAP.org

www.wacma.com

After spending over a decade in an abusive relationship, I learned not only about physical, sexual, and emotional abuse…I learned something new…a term called financial abuse. What this term means is this…when one person with the income controls everything, the dependent one is locked into a situation…most often this person has children like me. The dependent one begins to believe that because they do not have any money, they cannot leave because if they do…they will face homelessness and potentially lose the children to the controlling one with the income. If there’s anything at all that I’ve learned in my life, it’s that you can only feel comfortable about defining your boundaries and laying down your law when you have your own financial means. Every single workday…without fail…I spend a lot of time bitching and moaning about my job. However, I do this with a smile on my face. The reason why is because that job and the ability I have to work buys me a whole lot more than a roof over my head, a car to drive, or groceries to feed my family. That job buys me my life. It buys me myself. It buys my decisions. And it buys me my boundaries on toxic people.

Learning to be independent is a long journey, but eventually you realize that you’ve tried every other way imaginable and in the end, you’re left with yourself. And not only that, when you become self-sufficient, approximately 95% of your aggravations go right out the window. And for the record, I am not talking about being ALONE. I’m talking about when you know that you can stand alone. It’s then when your relationships become about love and no longer about power or contests. You realize that you are with people because you want to be, not because you HAVE to be. Then and only then can you begin to appreciate what other people bring to the table. It gives you an identity. It gives you self.

Through this self-actualization process, I’ve learned that sometimes I just have to say, “This BS is going to stop RIGHT NOW!” Independence, freedom from tyranny, is a beautiful thing. Thank you, Founding Fathers, for saying, “Oh HELL naw!! Screw THIS shit!” It set an excellent example for me.

As a general rule, once I decide it’s time for bed…I do not allow myself to get back on the computer until morning. That’s mostly because I have Chiari, because honestly, Chiarians either dont’ sleep at all or they sleep all the time. In an attempt to give myself some structure and some semblance of normal and being the highly-trained and uber self-disciplined individual that I am…I cut out any and all sleep distractions right off the bat. Tonight, I failed.  As my mind was racing while I was lying there…trying to go back to sleep, I realized that I didn’t have much choice but to jump on here and bore myself to sleep. So yeah. There’s that. And as a side note…it appears to be working.

Let’s see…what else could be keeping me awake? Hmmm…it could be that I am less than a week from my baby, K-dawg, turning 18 years old and that makes me feel ancient. Or it could be that we are about a week away from the 4th of July which happens to be the holiday that causes me the absolute most stress and worry. Which is funny because it hasn’t always been that way.

Technically, six years ago…the 4th of July took on a whole new meaning for me. I had never been completely independent in my entire life. Six years ago, I gained my independence for the first time. I signed my first lease and moved in 4th of July weekend…paid all my deposits on utilities that were actually in MY name…and began a new chapter in my life. A chapter which has allowed me to learn from my mistakes, grow and build my character, and the best part, I formed my very own identity. For the first time in my life…I was me and not simply someone’s sister, or someone’s wife, or someone’s mother. Not that those things aren’t wonderful and fulfilling. I REALLY needed an individual identity and I got that.

Fast-forward two years and subsequently after the 18th birthday of my first born daughter, Pig. Pig decides to become a pyrotechnic. My sweet little angel girl wants to blow things up. Professionally. Honestly, she’s never been wired quite right, but I still held up hope. She’s always been one who would have rather played in the grass looking for bugs, playing with black widows, and snakes and every other creepy, crawly, disgusting creature on the planet than to ride her bike, play hide-and-seek, or those other things kids do. Yep. She makes me proud. She’s an AWESOME kid. Who now wants to blow things up. Professionally. And she did.

Then, two years later…my second born daughter, Gabs, decided she wanted to blow stuff up, too. I’m starting to question a potential genetic mutation by this time. We’ll probably find out years from now that there really was something to that Chemtrail Conspiracy Theory after all. So yeah. The past two years, the gruesome twosome has lit up the skies over Raleigh, NC with great fanfare and they have made me unbelievably proud each and every time. It appears this year, the North Carolina State Fairgrounds will be their canvas again. However, one thing will be quite different.

My youngest daughter, my baby, turns 18 years old on July 1st. Guess who’s joining the party? You’ve got it. No doubt in my mind. When those planes are flying overhead…for God’s sake, unless you want your children to grow up and blow things up…professionally…get them inside!!

Here it is an entire week away and my heart and my stomach have already managed to make their way into my throat. Every year, I tell myself that this will get easier, but it doesn’t. I know I’ve gotta let them spread their wings and fly…but do they REALLY have to blow stuff up while they are soaring? Seriously.

Mission accomplished!! I’m officially sleepy! G’night, all!! Sweet dreams!

To take this whole parenting philosophy a step further, I have gone to such extremes as to recruit chosen members within our “family and friend circle” to teach my children the things that I am not good at doing. I want my children to be well-rounded. I want them to know just how huge this world really is so that they can dream the biggest dreams for themselves and their futures. I want to give them a network of people who believe in their dreams just as much as they do…just as much as I do…and have the ability to help propel them in the direction of fulfilling these dreams. Or to simply cheer them along their way.

We should also contribute to the various cultural experiences that can broaden their thoughts and expand their horizons. As a human parent, we also know that we are far from perfect, so we tend to really push those areas where we believe that we excel. For me, this area would be the area of fine arts; including, but not limited to music, dance, theater, painting/sculpture/pottery/etc, architecture, literature, and food. However, last night was an exception.

Last night, we ventured to McDonald’s for dinner. Before we left for our dining destination, my youngest daughter (a.k.a. K-dawg) announced that she was going to have a McBitchin’  for dinner.

After 20+ years of parenting experience under my belt, I also know that we can learn a thing or two from our kids. I was enlightened last night beyond my imagination. Today is your lucky day. I’m going to let you in on McDonald’s best kept secret…The McBitchin’. Remember, you heard it here first, folks. And McDonald’s…FYI: I will set up a designated education fund for my child…you may deposit her royalties directly into that. Thank you in advance. And you are welcome.

Okay…The McBitchin’. Apparently, in order to enjoy this fanciful culinary delight, one must have at least two dollars and some change for tax. The required ingredients are one (1) McDouble and one (1) McChicken. My daughter ordered these plain. Condiments can be chosen based on individual taste. Once we reached our table, K-dawg began constructing her masterpiece. I observed. She opened the McDouble first and separated it into half pieces at the position between the two patties. At this point, she inserted the McChicken where there was now a meat patty, slice of cheese, and top bun portion on top of the McChicken and a patty and bottom portion of the McDouble bun was on the bottom. She mashed it down really hard, and then offered her sisters and myself a bite of her creation…The McBitchin’. Honest opinion? It wasn’t half bad.

So I guess my point is this, even though it’s often a necessary requirement to keep introducing our children to new things and to offer them chances to expand their horizons. Sometimes, it’s okay to take a break and let them take the proverbial wheel for a minute. See what their minds are doing. It can oftentimes cheer you up when you are having a down day. Kids are funny and their brains are in overdrive. Stop. Listen to them. You might just learn something. Even if it’s about McDonald’s best kept secret…The McBitchen.

I’m feeling the tug more and more to write. Lately, I am craving it. I really want to write a book. Seriously. I have so much to say. I don’t know if anyone really cares, but there is only one way to find out. Before I get started though, I need to buy a book. A dear friend of mine and fellow writer suggested that I read Stephen King’s book, On Writing: A Memoir of the Craft. I plan on making that purchase soon and reading it as soon as possible. In the interim, I was thinking that it wouldn’t hurt to get back in the practice of writing.

For me, writing has always been therapeutic. And believe me when I say this, when you are ME, you need all the therapy you can get. Seriously. Being me has been the craziest ride ever! I have a million stories. As long as I have the ability to type, I hope to get as many of these down as humanly possible.

I have no idea what to talk about or what anyone is interested in hearing. I do get these great little statistics with this blog though and sometimes those are quite enlightening. I have the ability to see what search terms are used when my page is accessed. These are the search terms that someone puts into The Google or some other search engine and they find my blog from the results provided. Lately there have been some searches that have made me a wee bit paranoid.

First of all, I have a Chiari I Malformation for those who do not know. This is a neurological condition caused from a birth defect. I was born this way. Essentially, my skull is deformed. My brain is falling out the bottom and is compressing my spine. This causes a wide array of issues. There are over 200 symptoms associated with this disease. My entire central nervous system is compromised. The worst part is that The Google knows more about this condition than any doctor I have seen so far. That’s scary!

Now, the reason I have been paranoid is that lately there have been a lot of searches for things like “Chiari grumpiness rudeness” and “does chiari cause irrational thinking.” Then today on my FB page, a fellow Chiarian and I had a discussion about how we feel completely crazy sometimes. I had actually described how my bad my behavior is at times and how I even surprise myself with how bad I can get. I called it “borderline schizophrenia” and I was not over-exaggerating or being funny. I get nasty. When I saw others searching for the same thing, I knew I had to write about this.

For all those searching for medical answers, I do not have any. Based strictly on my personal experiences, I believe that Chiari does cause this to happen and it makes total sense to me how it is able to happen. It would explain many of the irrational things that I have done that have been so completely out of character for me. I went psycho crazy on four women in a parking lot one time. With my kids in the car. I was so crazy that I scared them into their car and out of the parking lot. I was CRAZY!!

It’s a long story and not very entertaining however. Just know that a few hours later, I couldn’t believe that I had behaved that way. That sort of thing has happened quite a few times. Not the trying to get myself killed thing, but the bad behavior. The sad part is that I usually take it out on the ones closest to me. I’m not sure if I do that on purpose or if it’s because I have isolated myself so and they are the only ones around. Either way, it is incredibly upsetting to me. Luckily, the people I am surrounded by love me and they understand. I could not imagine if I were in a position where people were not supportive and understanding.

If you happened to run across this blog because you were trying to find out if Chiari causes irrational thought processes, it is quite obvious that you are looking for real answers. I hope I have not disappointed. If you want more details, just ask and I can give specifics. I do not mind. The stories are embarrassing, but that is nothing if I can help one person. It’s nothing if one person can find peace knowing that they are not alone. Don’t ever think you are alone. You’ve always got a Chiari friend here. Always. Remember that.

To my friends and family, thank you for loving me. Thank you for being so patient, kind, and understanding. Thank you for standing by my side and being so supportive. Thank you for lifting me up in prayer. Thank you for the encouraging notes, text messages, and emails. As long as ya’ll stay in my corner, I can beat ANYTHING life throws at me!! I love you with all of my heart!