When there's a curve in the road be sure to bend with it

My final epilepsy surgery was competed in February. I had the same team of amazing people rallying around. There were times when I couldn't tell who wanted this to work, more: me, my doctors, my family or my friends. The love and support I felt was overwhelming.

I spent my first night in the Neuro ICU, blissfully unaware of what my head had just endured. The question people ask, most often, is: Did it hurt? YES. I have high pain tolerance, and try to avoid narcotic pain killers, but that was not possible this time around! Being a "neuro patient" I got the joy of being harassed with a neurological assessment every 4 hours! That basically means some nurse would wake me, from my drug induced slumber, by shining a light in my eyes. They would then ask me any combination of the following questions: : "What's your name?" "What's today's date?" Who's the president?  Some questions received some snarky answers. Like: "Even if I did suffer some neurological deficit during surgery I think I would have memorized that Obama is the president based on the last 12 times someone has come in here to ask me, before your shift even started! ICU or not I felt well enough to remain my charming sarcastic self.

By day 2 it was my neurological assessment that I was going through. One of the very first things I established when i opened my eyes was that I could still see ... out of both eye. it sounds strange, and I know that. Leading up to surgery they go over all the risk, and the things you can lose as a result. My biggest one was the vision in my left eye, but I signed all the paperwork anyway! So knowing I could see was, already, a "win." After that I went through the small things: I knew I could speak, my memory seemed fine, I recognized faces and understood English. I was content, but not quite satisfied. I craved further validation. I need to know that as i lay in that bed I was still "smart" I wanted confirmation that I was still going to become everything that I wanted to be, within the timeframe that I had set. And then my phone rang.

My professor was calling to see how I was feeling, and how surgery had gone. He's a Neurologist so the first thing I told him was how idiotic it was to assume you are testing some's neurological function by asking who the president is every four hours! He chuckled and said "Well you sure sound like yourself!" Hmmm does that mean I complain and bitch a lot in my daily life? Then he said "Would you like me to give a quick Neurological assessment?" Oh good god! I thought. And then he started with his questions: "Taniya, give me the definition of phagocytosis." "In the Renal the outer portion of the kidney is called ____." He pulled questions from things that I'd learned over the past 13-16 months. And every time he said right I jumped on my mental pogo stick and went bouncing off into the sunset! That's exactly what I needed! I didn't leave any of what I, quietly, defined as my intelligence on that operating table.

After 3 days in the hospital, and week at home I went back to school. I was jumping right back into my life. If you want to go back to feeling well you have to go back to doing the things you did when you were well (if you are still able.) My doctor urged me to take off the semester off, but I refused. Last year I gave him an entire semester and the seizures came back anyway. I wasn't giving up anymore time. I settled back into my old routine, quickly.

I had been having dizzy spells on and off since coming home. I found 100 of things I could blame them on: I aven't eaten, it's the medication, I'm overtired etc.

Last week there was no explaining things away. Surgery had felt like it was so long ago, so complications were no longer on my radar. I could see, hear, speak and pass any A&P test in my sleep. I was in the clear. Wasn't I? ... Not quite just yet. The thing about "complications" is they can be anything and happen at any point. I always viewed complications as something that goes wrong during or IMMEDIATELY after surgery. I certainly didn't think they were something that would show up almost a month later, nor was it something I was willing to think about.

Post surgery, my body wasn't absorbing my cerebrospinal fluid as quickly as it was produced. Essentially I was accumulating "water on the Brain."  Getting back to the list of risk and complications ... I'm not sure I paid much attention to this one! It got my attention real fast when my surgeon came in and said "I know how to fix this." Note: If a surgeon tell you he knows how to fix something, trust it involves cutting someone open! He said "I'd like to take you to the O.R on Monday, and put in a shunt." I'm sure if I could have sat up I would have yelled something obscene. But I was too dizzy to even be able to sit up. I was disappointed and upset. I saw the one path I was, already, on. The one that had been free from complications and drama, for nearly a month. I didn't want to start over or try again. I just wanted to be seizure free ... and for a month I had been.

Where was this unforeseen turn taking me? I didn't know, but I had no choice but to turn also. My brain was literally drowning in it's own fluid. The world, viewed through my eyes, was constantly spinning. So with shaking hands I chased the signature line around the page, as it continued to spin. I quickly scribbled some version of  "Taniya L. Faulk" that may, or may not have resembled my actual signature.   And with that I went to surgery. That was almost 2 weeks ago.

This isn't the way I want things to go, but looking back all I ever asked was for them to go wee. Thus far they have. I hated the need for an additional surgery. (sure, I'll eventually add it to my tally and feel even cooler!)  However, I had to find a way to be ok with things were going to play out. For me to recover and continue to thrive I had to follow that small bend in the middle of my path.

I don't want to be a muse, and I certainly can't be your "hero."

Since I consented to a second to another Neurosurgery, my life has been a whirlwind: There have been test, request for more test, data collection and data review. The more I'm being taught, in school, the less foreign the language is. I know the law of Neuroplasticity. I understand hyper vs. hypo polarization, and I can interpret parts of my own EEG (not very well but I still got the gist.) There's a certain peace that is lost with gaining of knowledge. I guess that's why the phrase "ignorance is bliss was coined." Because it really is!

The question "why" has been hang off the lips, of just about everyone. Some let it be verbalized, and others just bite their tongue. Yet, I know they all want to know: "You had one failed Epilepsy surgery, why would you try it again?" Because any shot at success is better than no shot at all! I'd rather try and fail, than fail because I didn't try.

The other reason, and the one that is so hard for people to wrap their minds around: I find it so damn interesting! Sure, I'll have another test, but make sure I get a copy of the report. You can put pins in my legs, but I must see the X-rays!  I'm my own "laboratory rat." I've become my own muse. I want to create something beautiful, from my experiences. So yes, when the Neurologists and Neurosurgeon all agreed that they got it wrong The scientist in me said: "OK let's get it right." - I know I'll receive the direct benefits, from this surgery. However, this, all will reach far beyond me: When I can hold a patient's hand and say: "I understand" those words will hold truth. Or the day I put a cast on a little girls arms, and whisper: "Sweetie, I know it hurts." I wont be lying.

On the flip side of that, I'm no martyr. Nor, am I a hero. My professor called me his hero, and that was beyond awkward! That man, and his career inspire me everyday! I've accomplished what you expect most women, my age, to have accomplished.Sure the road I've traveled may have had more potholes than most, but I didn't do anything heroic! I just navigated my road well. When I eventually find the solution to world peace, or cure world hunger ... than you can call me your hero. For right now, just call me some relentless chick who became real good at falling down, and jumping right back up!        

Self talk

It's vitally important that we are careful of how we talk to ourselves. The thoughts that we give a voice to become internalized beliefs and perceptions of ones' self.  I hear it all too often:

-I'm Broke

-God, I'm so stupid

- I got sot so fat over the holidays

- I'm SICK of this or SICK of that. 

-I can't take it anymore.

-This is KILLING me.

This list could stretch for miles. I'm not above any of it. I've found myself indulging in my fair share of negative self talk. We all go through phases where we hate our thighs or get frustrated enough to call ourselves dumb. While that might not be the biggest deal in the world the ideas that can take on physical manifestations are cause for concern. 

I remember, in 2004 the man of my dreams decided I was no longer the woman in his. I did all the cliche things you would expect to see in a Jennifer Aniston movie. There was lots of wine, tears, and moody depressing love songs vibrating the walls of my bedroom. There was also me proclaiming how "broken hearted" I was, to anyone who would listen. Boy do I have good friends because not one told me to shut up. 

Right before his birthday, in 2005 I ended up on an operating room table having my heart "fixed." Coincidence? Now, I'm not metaphysical enough to believe that I actually talked myself into needing heart surgery. However, I do know that the voice that kept screaming "broken heart" knew nothing of the sort, and all it did was make sure my energy was focused on being depressed. After all I was supposed to feel depressed, wasn't I? That's how the story goes right? That's what my voice believes. 

Like that word "suffering" That word is the bane of my existence! I'm a "patient" who has dealt with and fought off most of my medical conditions. But don't ever say that I "suffer" from anything. To suffer implies that you are a victim of. I've never been a victim of anything! 

Sure I have "Brittle bone disease" but I didn't "suffer" over 90 fractures. I broke 90 bones and/or recovered from 90 fractures. 

I don't "suffer" from epilepsy. I have epilepsy and my seizures are annoying, inconvenient, and right now they are interrupting my life. However, I'm still not suffering.

I can't let that voice start talking to me like that. Because the minute I buy into the theory that I'm some "victim" is the minute that I give up control. (Anyone who knows me knows I'm a control freak!) I control my body, I control my health care, and I control that voice in my head! 

It's impossible to turn off that voice, so I say hear it and then ignore it. When you hear something that you don't like you can always turn it down or off. The problem is when you don't actually hear it, you don't realize that it's always on as background noise.   

 

Taniya, when you had the stroke __________?

If I never have to answer a question that starts with "When you had your stoke" that would be too soon.

It was April of 2003. It was my junior year of college, and it was probably the hardest thing that I ever lived through. It was weeks of a psychological minefield. I was dealing with weeks of headaches ... debilitating headaches, which doctors scoffed at. Light was my vicious enemy so I lived in darkness. Just as frequent as my trips to the ER, were the recommendations to see a psychologist. Prescriptions for Prozac were placed in my hands as they patted me on the back and sent me home with "nothing we could find." They made me feel crazy. Until the night of the stroke, and 11 hours of sucking blood off my Brain no doctor believed me.  

As I sit here, ten years later all I can think is "Told ya so!" But of all the things I could be right about. I thought the initial recovery would be the hard part. I didn't know I'd still be answering questions about it. Nor did I know how much of my life would later be impacted. Once all was said and done I thought I was in the clear. I didn't know that two years later I'd crash my car into a tree, and be found unconscious, starting a new flurry of misdiagnosis and insanity accusations. I couldn't have known that, that single event was laying the ground for a path that I would have to continue to walk. I would never have believed that I'd let someone open my head 5 more times, and be considering a sixth.

So to answer the question: "Taniya, when you had the stroke ________?"  I knew it was something, but didn't know it would be all this.

What a tease

I never want to be the woman who whines and cries over everything that's wrong. Things don't always go according to plan, and this past year certainly was no exception.

After living over a year of seizure freedom, the came back. The fear I held deep within me materialized.  I had one solid year of living without that, ever present, looming thought of: "please don't let me have a seizure." I was stripped of that security in October, during a Chemistry test. (As if I didn't have enough reasons to hate Chemistry!) There was one seizure, which I prayed was only a "one time deal" until the next one came, and then the next. Before I knew it I was right back where I started.

I put my life on pause for four months to have this surgery. I lived this full year thinking that I was "cured." The recurrence of the seizures definitely was disheartening. I almost didn't know which way to turn. I knew that my doctors were the only ones that could help, but part of me felt like I had let them down.  It may be my affliction, but we set on this path as a team and it failed ...

I got upset, and "licked my wounds" when I needed to, but I never regretted it. I'd do it all over again if you asked to. In fact, I just might have to ...

There are no definitive answers right now. No one why I'm still having seizures, where they are, now, coming from or if they can be cured. I'm heading back into the O.R. tomorrow for some further testing. Eh, a few electrodes in my Brain for a few weeks ... no big deal! Ok, so it's not quite that simple, but I've undergone a lot more invasive procedures.

I'm not afraid, mad or upset. I'm just annoyed by the uncertainty. I can't live my life in this state of limbo. I don't want to walk on egg shells. I don't want to have to confess to professors "I'm epileptic and stress can trigger me to have a seizure. So don't be alarmed if I start convulsing during midterms!" So if I am "curable" they'll cure me. If I'm not, they'll treat me, and I'll wait for the next scientific breakthrough and see if that helps. But either way I need to know. I need a period at the end of this sentence. The book may need to remain open but we can end the sentence.

Updates to come ...

Just when I thought maturity prevailed

I'm use to walking through crowds or entering a room filled with people, I don't know, and getting those obvious stares. In most situations I don't even notice anymore. Ironically enough, I think, I was stared at less when I was in a wheelchair. Nonetheless, I'm not effected by it. However, sometimes  the people I know and love get angry and offended. 

Just the other day I was walking through campus with a friend, and a group of girls passed us. Once they thought I was out of earshot one of them said to the group "Yo, see I told you there was a midget that went here." A chorus of snickers followed. I rolled my eyes and kept walking. My friend, on the other hand, got extremely upset. She was nearly ready to fight. 

I'm 32 years old, and to even entertain such stupidity is beneath me. I got through most of middle school and all of high school without dealing with that level of immaturity. The last place I thought I would have such an encounter was a collage campus. That's when I realized it's not about maturity. I don't even think it's about ignorance, anymore. (Turn on TLC any night of the week and I guarantee you will see at lest 3 reality shows staring "little people.")

I may stand alone in this, but I think most of it is misguided curiosity and surprise. While most people are not so "vocal" about it, I'm smart enough to know that's probably the internal dialogue behind many stares. "Yo, I told you there is a midget that went here." translates to something more like: Guys there's a little person that goes here. I wonder why she's little. I wonder how she gets here. I wonder how she does in classes. She's smart enough to take college classes? - And that is where curiosity begins to feel like immaturity. These are questions that should be asked to me. The assumptions and the fabricated answers are ridiculous. 

I'm not making excuses for inappropriate behavior. Snickering, and pointing are uncalled for and inexcusable. However, I've been 4' tall since I was about 7. I've spoken to enough schools, answered enough questions, walked through enough crowds and entered enough rooms to know that there's something more than just a bunch of ignorant people in an immature world. That's, truly, why stares don't bother bother me!

And guess what ... I've had moments of curiosity too ...

All that's left is a headache ...

Recovery has always seemed to come easy for me. - Sometimes it, almost, seems too easy. They told me that I'd be "recovering" for 6-8 weeks. Yet after 11 days I was up and ready to return to life. I left the hospital 2 days after the surgery was complete. I'm not easily held down. All that's left is a headache that is controlled with Tylenol.

I've jumped across so many operating tables, that I lost count. Most of my surgeries were considered "elective." If you were to ask me I would have to agree. - Elective yet imperative. I always saw hope at the end of a scalpel. There was always the promise that I could walk. Then came the hope that my heart would function more efficiently, and now the hope that I will spend the rest of my life seizure free. 

For me hope and blind faith are synonymous. Yet my family sees it more as insanity! 

I did wake up with a terrible haircut! There aren't even words to describe what it looked like.  It was clearly apparent that he's a Neurosurgeon and not a hair dresser!!! Until I could get it fully shaved I walked around with this quite interesting "Jekyl and Hyde-esq" do. I didn't try to cover it. At the worst I'd get stared at (like that's never happened before) at best I'd inspire the newest rock star hair trend. Let's just say the later didn't happen! I would have dared anyone to say anything about my hair. I earned it, so I owned it! - I'm happy to report that I am rocking a more sensible hair do, now that I shaved it! 

I'm not immune to being self-conscious. -Sure I want my hair back. I wasn't 100% comfortable sitting in McDonalds with my butchered hair and an exposed scar, that runs straight across my head. But I also wasn't willing to lock myself in my house. I know that less than 3 weeks ago my hair was the least of what was at stake....

The hair will grow back, and scar wont remain exposed. But that scar will be another paragraph in the story of me. And I honestly love that.