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. 


  

Packing ...

As I take a break from packing I can't help but wonder why I'm not nervous. I feel like everything in me should be in knots: Like I should be a huge ball of fear and anxiety. Yet, the only emotion I feel is "excitement." . I want to be on the other side of this, so badly. I've actually waited, this past week, like a kid waits for Christmas. Doesn't that sound weird?

People keep asking me: "are you scared?" With all honesty I can say no. There's a sense of calm, that feels so unnatural. Maybe it's people's reactions that make my feelings seem so unnatural - I remind myself that I've done this before. I woke up in a bed and learned that someone had successfully "tinkered" around in my head. Maybe had that not been part of my past, I would been terrified.

Is terrified even an emotion? It's an amplification of fear. Fear and terrified are not mutually exclusive. Of course I have fears ...

I fear this wont work...

I fear that I'll wake up a year from in the middle of a seizure...

I fear that all the work, obstacles, annoyances, and blind faith will bring me nowhere...

I fear that  all those who questioned my choices, and didn't "back" me will be right...
 There is something I am terrified of .......

Hearing: "I told you so!"
 
Back to packing -

7/21 = 7/4

I was born three weeks after independence day, and I find that so fitting. I feel like I'm always emphasizing how independent I am, and how hard I had to work to get there. I don't do it to be one of the obnoxious people "showing off." I don't want to be the the poster child for "look what I can do!!"

I Seriously don't think people care, nor do I want them to, that I can: drive (anyone over the age of 16 can do that.) cook my own meals, graduate college, work and all the countless mundane things that amaze people. I never understand when I get that collective gasp, when I tell my kids any of those things.

I'm human: I falter, I fall, I crack, I bleed and I cry. It's in those moments that I need reminding of the road I've traveled, and all the speed bumps I went over at full speed. Many of which, were to my detriment. ( It's not easy to tell your mother you just broke your ankle rollerblading, when you both know you can't walk!) I've broken bones, I've crashed cars, I chased away the love of my life, by clinging so tightly, believing he was the ONLY one who see me. I've fallen down stairs, I've had seizures in public, I've failed test, I've lost jobs, I've burned rice (ok that really doesn't fit in this list, but it happened.) Yet, I navigated all that. I got to the other side with a few breaks, bruises and tears. But I got there.

When people ask me what scares me about this surgery. the answer is simple: it's losing all of the hard work I've invested in my life ... permanently, or temporally. I know all the risks, and understand all the medical jargon. However, in layman's terms I know what I'm surrendering, and what I could lose. I'm jumping in head first with the blind faith that on the other side of this speed bump ahead is just another bruise. (a bruise and a little less hair.)

I'm giving up, most of my independence for a year. I'm leaving school for the fall semester. I wont be allowed to drive for a year. That's my freedom, on four wheels.  As if it's not bad enough that I live with my father ... The idea of confinement is already giving me anxiety. I wont be allowed to use my step stool, for fear that I'll have a seizure, fall and hit my head. I break both those rules now, but once my dad sees it in print he'll be a speed bump that I'll have to take a sledge hammer to.


The idea of ASKING someone for HELP will nearly break me. Asking someone to take me to Starbucks, waiting for someone to make me food, or wash my clothes. I'm 32 ... the needy, helpless phase of my life is 12 years behind me!!

 I'm willingly saying:  OK I don't mind being dependent. I don't mind putting my social life on hold. School can be pushed aside for a year. I'm ok being imprisoned in a house (oh, how Ashley and I will end up fighting!!) Essentially, I'm putting my life on hold ...

I've lived this long breaking rules, pushing limits, doing things people said I couldn't, shouldn't or wouldn't ... I'm not so sure this will be any different...  The help wanted sign on my forehead will probably only be there until Christmas - If I let it stay that long!

8/27/12

I booked my surgery for 8/27 ... I wish I could say it was a hard decision, but it wasn't. Most of my family doesn't support me in this. My dad even said "Is this really necessary?" Necessary? Is he serious?

Unless you've been held captive by a seizure, there's no way you can comprehend how "necessary" this is. The fear that, at any point in your day, your Brain can become incapable of control is intolerable. The fear is almost worse than the seizure. The seizure last 90 seconds at most. The fear goes  on all day, everyday. Everything I do, or place I go can turn into an extremely dangerous and/or embarrassing experience. It's like walking around drunk all day. Your liable to say or do anything.

When I was first told about the surgery I said "HELL NO!"  After all, my seizures didn't start until 2 years after the hemorrhage. Even than they went "away" for a year. Even when they came back they were mild. I was on 2 anti epileptic drugs, and was doing fine. Why go cutting into my head if I could maintain on 2 medications? and then ...

My seizures got worse, and more frequent. To combat that my medications got increased, and new ones added. I went from from 4 pills a day, to 16 pills a day: Totaling 4,600 milligrams of anti-epileptic medications. And even now, there's still a risk of me seizing. Looking back I wish I had have done the surgery then. If I did this whole fiasco would be over.

My surgeon asked me, yesterday: "If I do my job right, what with your life look like a year from now?" I couldn't say anything. (In spite of the weird neurosurgeon humor) I burst into tears. - If it looks better than it does right now than I win! That's pretty much the answer. If I can have that Margarita, without the risk of a seizure. I win! If I can drive without a lecture, and the risk of losing my license. Then I win! I I can lower the medications, to the point, where I don't forget that I left my car running in the driveway. Or when I can study for a test, and not score a 68. If I can be a 32 year old adult, and not need to sleep 15 hours a day. (and I'm not allowed to drink coffee.)

That's right ... life will look like life - It will look MY life again. Once I'm no longer an unwilling participant in this dance with seizures, I'll tell him he did his job right!

This surgery is not only necessary ... it's VITAL!

Purging

If you, take a moment, to think of all the things you don't need, you will see how empty your life truly is. We fill our lives with "things" and people that we no longer need. We never take the time to remove what is no longer beneficial. We pretend we a are living fulfilled lives. However, there is no room for fulfillment, because we retain what keeps us "content."

Don't get me wrong, it's perfectly ok to always remain "content." However, I believe there is so much  more than that. We become so scared to move on, and get rid of what is safe. It's so scary to say: "my life is full, but it's not full of what I want. We are terrified of drawing that "line in the sand" and admitting that we want and require more.

The word "selfish" has such a negative connotation with it. It's socially unacceptable to be "selfish." However, "selfish" and "stingy" are two different human traits. I agree that it is unacceptable to be unwilling to give or to share. Yet, what can you actually give or share if you're deficient in what you need. You can't share what you, yourself, don't have. ... in that is where the problem lies.

We give what we don't have, and the recipient ends up with "junk." - How do you inspire someone when you haven't been inspired, yourself. How do you make someone feel special when you haven't special in years? -simply you can't That's when it feels "mutually beneficial." We accept what the other has to give, no matter how much, or little that is, and we pass on what we are left with. Thus we both feel content.

I've loved, and been liked in return. I've cared, and been adored in return. I've cried, and had my tears dried, instead of the pain being eased.

Many of us fill in the missing pieces with things. My mom died, and I brought a brand new car. My forever came to an end, and went on a 2 month shopping spree. My car doesn't love me. My clothes are inanimate, and my forever could care less.

So it's time to let some friends walk, get rid of many things, let go some old memories (no matter how cherished I thought they were) . it's time to truly purge and turn the page, from content to fulfilled....

Again ...

I got a call today, from my doctor's secretary. She wants to schedule a consultation with "your Neurosurgeon."  Yes, she actually called him MY Neurosurgeon.... Slow down people! I didn't sign any paperwork - YET.  I'm confident that this is the route I'm going down, but it's happening on MY terms, in MY time! - The first Brain surgery I had, was not within my control.


I woke up 5 days, after the fact, with a shaved head and my eyes swollen shut. I only know what happened based on stories I've been told, and follow up appointments I had. 4/10/03 is so surreal, and such a foreign memory. This time it's a reality and a decision. A huge part of me is so thrilled, that this is a choice I get to make. I feel so in control right now. But an equal part feels lost, and unsure.


I hear my doctors say: "we'll just remove the original plate, and that will give us access to the affected tissue." Holy shit, I have a plate in my head! - Oh yea, I've been down this road before. That was just a circle, because I'm here again!!! - Seizures were the souvenir from a "near death experience." That once felt like such a small sacrifice. That was before they started to screw with my life. That was long before I started forgetting everything, failing test, and having seizures in my sleep, taking 5,500 mg of anti epileptic drugs daily, and just feeling stifled in my own life.


I'm not afraid, as much, as I am worried. I'm worried about my memory. Memories of my mom are all I have left. I'm worried about my personality changing. I'm finally the woman, I love who I've grown to be that can change. I'm most nervous that all the key players aren't around: It's a brand new team of doctors to put faith in. My mom's not here anymore. She was my security blanket through all my surgeries. She was always the first person I saw as the Anesthesia wore off. - I'll actually mess all her over protective tendencies. Who will stand in the driveway, disapprovingly, as I drive off in my car post recovery? 


As stupid as it sounds: Ryan wont be there. Who will look at me bald and swollen, and still call me beautiful? Who else can I get to write a song about me, to lift my spirits? (ok maybe the song isn't that important!) But I felt: protected, safe, and cared for when I was outside of this house, with him. (much to Alex's dismay!)  Niki worked hard to make me feel like I still had it all together. She fought Jack, so that I could still feel part of "Anything Goes." She made sure that I didn't feel all the work I'd put into that show wasn't forgotten. 


The few original players that remain will greatly needed. (Ali, that means I will probably proclaim "you are the only person I wanted to see!)




Like all great revivals: the come back, years later, with a brand new cast ... 

You can't apologize for a qustion

I went about my morning, like any other morning. However,  I do know that my mornings will never be like yours. Yet they are normal, and mundane, just the same. - A quick cup of coffee, at the house, a stop a the bagel store, a fill up at my local gas station and a 45 minute commute. 


Thursday was just a little bit different. I looked at the alarm clock, and wonder why I was getting out of bed? I had spent the night before studying (AGAIN) for a test I didn't want to take. I had no reason to stop at the bagel store, because I was anything but hungry. Coffee is a luxury that I enjoy in secret. On Thursday I felt compelled to follow my doctor's orders. Maybe caffeine was to blame for all my, sudden, educational problems. Maybe if I bypassed my cup of morning Joe I could, once again ace a test. - It was at least worth a shot. 


Bleary eyed I walked into the bagel store. If I couldn't have coffee I needed to eat, something. A hush fell over the morning crowd of scrambled egg eaters and coffee drinkers. I wasn't in the mood to be the center of attention, even though I knew I was the cause of the sudden silence. Suddenly a little boy broke the, thickening, quiet.  "Mommy, is that a little girl." I was praying that mom would give a half way decent answer so I could take my bagel and run! - She didn't!! "No that's a grown up. No shh!" (Please tell me why the word "that" often replaces "she.") The theatre voice in me said: "Action, Taniya you're on!" And as if on cue, the little boy said "well what's wrong with her?" And the monologue rolled right off my tongue. "Ah I just have short legs!" I said. "But why?" he countered (OK it wasn't really a monologue, because this kid was relentless!) "Because every one's built differently." I told. This went on for several minutes. The whole time mom stood frozen like a deer in headlights. Out of nowhere this 4-year-old hit me with a question that left me speechless. "How do you drive?" You could have heard a pin drop in that room. I was stunned for two reasons. 1) He never asked if I COULD drive. In his world everything is possible. He was curious as to HOW. He was smart enough to understand that my height must impact my daily life some how, but didn't see an interruption. 2) He was 4 years old and had the bravery to ask a question that everyone in that store was curious to know. There wasn't one person that didn't listen, to the answer. once I told him I had long pedals  he shrugged a returned to his plate of eggs. 


His mom looked at me, and could not have been more apologetic. "He does this to me all the time." I desperately wanted ask her: what is "it"  that he does to you? She apologized profusely. I told her not to apologize for having a child who is inquisitive. Her son did something few PEOPLE do: He treated me with dignity, and respect. He asked the question that he was curious about, and let me answer. He acted with maturity far beyond that of a 4 year old. And most importantly he was brave enough to ask. At 4 years old he opened a forum for me to educate a room full of people, without any of us realizing it. He'll probably never think of me again, but hopefully when he sees someone "different" he'll remember that "everyone is built differently." 


As I got in the car I was asked how I drive, I thought: I'm heading to take a test when I have all the education I need to do what I'm meant to be doing. I'm meant to be speaking to people. My career was always meant to have an audience ... since my life always has been.

The C word

Giving up has never been my thing. It's what I preach against, to everyone speak with. "Never say you can't." Don't give up, and all the over used euphemisms I can think of. Yet, here I sit, ready to quit! 


I'm not sure about this school thing, anymore. I'm not a "C" student, yet suddenly busting my ass leaves me marginal at best. Between having seizures, and medications that cause me to forget everything; studying is proving to be useless. There are times, when, I'm surprised I remember who I am. I asked my doctor about the changes in my memory and she said it's partly the medication but mainly a result of the "brain damage." 


"Brain damage??" WOW Why is a stupid Brain Hemorrhage, that happened in 2003 wreaking havoc on my life life now? Almost 10 years and worlds later, I feel like I'm starting all over. 


I would never throw around the "fair " word, because I'm smart enough to know life's not fair. However, I know paid a huge price, when this disaster happened. I walked through hell and back in 2003. I don't have it in me to fight this residual crap that decided to come back and haunt me! Seizures weren't part of the deal; nor were medications that left me feeling like a zombie. 


My natural instinct is to fight back. But I can't fight against my own Brain. This isn't like fighting the way I think, or do things. This is fighting the very energy that powers my own "self" How do I fight back against that? 


So here's where I am? Do I throw my hands up, and say I can't do this anymore? Do I give up and say it was a nice try, but it's not working out. Or do keep at it? Do hold in the uncertainty? Stuff down the fact that I'm not sleeping? study information that I wont remember in an hour? Or do I find another path to try walking down? 


I gave this a shot, but I'm not sure that I can see this through ...

It could always be worse ...

At least that's what I tell myself when I feel I've found the bottom of this bottomless hole. They say you find a point where you hit "rock bottom." I've never found that true. Bottom is an illusion. Bottom signifies a finite end to something. - I'm not sure anything ever ends. The entire world, as we know it, is a cycle of repetitions.

Science tell us that energy cannot be created or destroyed. Therefore the essence of energy just lingers until it is reclaimed by something, to be used again.

So do I, naively, believe that I can put an "end" to all the rapid, electrical energy that causes my seizures? I've been told that the electrical surges in my Brain run too fast to fully be controlled by drugs. But I struggle with that concept. Is it possible for anything, about the Brain, to run too fast? I talk too fast, I think rapidly, I think too much, I can create and analyze at the same time. I have anxiety, born out of a desire to be perfect. I knowingly, take on more than I can juggle.

Good bad or indifferent that's who I am! And I wouldn't change that. The biggest concern, about this damn surgery is that it might change "me" in some small but significant way. Yet, one by one these seizures keep coming, and I desperately want to end that. Here's my question: where will all the extra energy go ...