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. 


  

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 ...