Invisable

It's so hard to feel like "nothing." In a world full of "somethings" I feel like I'm not even seen. I feel expendable. There's a purpose that I severe for a short period of time- when that service is over, I'm fade into the background of life.


Eventually, after years of fading you become non-existent. That's where I am, and who notices? No one! How'd did I end up here? I was some of everything, and suddenly I'm all of nothing.  I wanted so much, but I got nothing. As much as I was sure, I was equally confused. As much as I was confident, I was extremely insecure. I don't know who I am, because of all that I tried to be.


I'm in love with a man who'll never be in love with me. I long for a career, which I've been trying to find for ten years. Those are things I've, almost, accepted I'll never have.  Some might call that "giving up." Some may call it "facing reality." I view it somewhere in between.


How be do you become "something?" College didn't do it. Job after job is not doing it. Friends won't do it. Men won't give me the opportunity to do it. So I do what I do. I chasing the things that seem unattainable. I push beyond my limits. I defy my comfort zone. I make the world uncomfortable, so I can make the world let me in.


I got in. I fit in. Now I just need to be something within.

Personality in waves

I sit here in this hospital room, trying to keep myself awake. Finding myself alone, bored and mentally exhausted.

-This is not ortho
- This is not Heart
- this is not even a true hospitalization. - I'm here being monitored, in the hope of finally getting my seizures under control. Something that has been ever evasive for the past five years. This feels like ghost hunting, of sorts. There is all this technology, recordings in multiple mediums all with the hope of "catching" something.

So I sit and wait. When the waiting become unbearable: I sit and I watch. The EEG monitor is right in front of me. So for hours I've been watching all the peaks and valleys that comprise my Brain activity. I sit in awe as I wonder what each line means. What the spikes and deeps of the thin black like means. I almost wonder if who I am can be revealed in those lines. - I doubt it, but it's still neat to wonder. I've tried altering my thoughts and actions to watch the changes in that rhythmic black line. Needless to say, I have no clue what I'm looking. Like a ghost if it's there I can't see it. - That's the frustrating part of this whole thing ... of my whole life. Never being able to see what was coming next, or what was happening right in front of me. One door lead to another and another and ... before I knew it I was deep in this rabbit hole. A maze of endless tests, medical mysteries and miracles all at the same time.

As I was reviewing my medical history with an admitting nurse here, we reached April 10, 2003 - The day that essentially brought me here. That's a day I celebrate and loathe every year. That was day of my Brain Hemorrhage, and subsequent surgery. - As we reached the end of my tale, she turned and said " You're very lucky. That scenario, typically end well." - She may be right, but there's no telling yet- I am not in my final act. How do we know that, that false ending was not just another door inside my rabbit hole?

I often wonder where my story will end. When will I be out of "war stories" to tell? I want the day when the most exciting story I have to tell, about the prior year, is how wonderful my trip to Tahiti was. 

My Neurologist commended me for "living a normal life" in spite of the threat of having a seizure, at any moment. To that I had no response. A mere chuckle was sufficient. I don't live a normal life, and I'm OK with that. Let's face it: the standard for normal does not entail fighting to keep yourself awake until 4am, while having your head feeling like a sixth grade Science project. 

I go through every day living my life. And today this is my life, and tomorrow may be something else. Good, bad or indifferent, there will be something else. Like the lines on the monitor before me. - The only thing that is constant is that the wave changes - every single pattern, is not a pattern at all. It is more of a rhythmic mosaic. That, almost, poetically sums up my life.

Today it's Brain Waves. Tomorrow it might be a Seizure. Next month it could be a broken leg.

But one day ....

It will be Tahiti 

I got this great pair of heels, the type of heels that everyone notices, and compliments you on. I wore them for the first time today. I felt so sexy, as I put them on and walked out my front door. However, as the day wore on I started realizing just how "unsexy" I actually looked. Every time I caught a glimpse of myself in the reflection on a glass door- I felt ridiculous. I thought I looked great, but I realized that I "waddled." I was walking like a penguin. I don't walk with the most grace as it is and the 3 inch heels just mad that blatantly obvious.

I went from feeling hot to feeling awkward in 15 seconds. And to top it off: the shoes hurt like hell!!

It's been a long time ...

I was in a high school today. It has 15 years, since I began HS and 12 years since I graduated. It was so interesting, to be among that "student dynamic." I don't think, when My life was that atmosphere I knew what my peers really thought. I always, wanted to know what was behind those stares, and awkward glances. I didn't have the guts to ask than.

I'm 30 years-old, and got the opportunity to ask ... there not, my peers anymore, but the questions, thoughts and opinions are still very much the same. I don't set out to be an "inspiration." Although, that comes with the territory. I just like dispelling those myths. I reached those kids, faster and more effective, than ever. I was almost surprised, and impressed by how candid, and open they were. Yet how appropriate they seemed. If you want to see the world with unbiased truth, look at it through the eyes of a child. Ask them what they think. Let them ask what they want to know.

I heard some uncomfortable things today. Much of it I've heard before. But what I know is ... don't ask the question, unless you want the answer. I didn't always feel as comfortable as I do know. I asked, and answered things that I typically don't get asked, and don't address. I hope in doing so the 75-ish kids I spoke with left school feeling much more secure in who they are, and all the things they'll never be.

If someone told me then ...

Osteio
   Osteiogenesis
     Osteiogenesis Imperfecta
             Translation, in it's purest Latin form : Imperfect bones from the beginning.
Layman's terms Brittle Bone Disease. 

What does all this mean? Well who the hell knows. 25 years ago it was as much of a mystery as it is now. I spent more energy, than I care to admit, attempting to turn imperfect bones into a perfect life. Let me tell you how well that worked. I embraced my imperfect bones, years ago. In fact I love the stories it gives me tell, and relish the opportunities when I get to tell them. The doctor in me still thrives on "scar stories." 

If someone told me then to stop chasing perfection, I wouldn't have spent 30 years feeling that I've failed. However, if I didn't spend 30 years feeling that I've failed how would I be in a position to show people that they haven't?

Ressilency

The question I'm asked most often but dread the most is "how do you do it?" The truth is I don't know. I guess, because I always have. I know no other way of life. You just get up and keep going. I guess if I were sitting on the opposite side of my life, I'd want to know the same thing.

There's no manual for life, If there were every one's life would be a hell of alot easier.

So I find it ironic that I've been asked to give of a speech on resiliency. That's something that I can't teach. That's something that can't be taught. It's a form of courage, that you will embrace or you wont.

I threw myself head first into my life, with reckless abandon. Not the kind of recklessness that leads you down the wrong path. Instead, my thought was that not much could really get any worse. I had to do something. So ... I did everything. In the process I broke 91 bones- 91 bones that would have broken anyway.

There's do and there's don't. I often find myself on the side of do.

My body is covered with scars. Each scar maps a  place that was cut into, a place that I handed over to someone, with the hope that it would lead some where "better." If you follow the trail of my scars, you essentially follow my evolution. But what allows you to follow the evolution of my spirit?

I'd rather have my body covered with scars, than spirit broken.- Broken by all the scars of broken wishes, and lost dreams of all the things I never did.

I guess that is resiliency.

There's the world ... There's the home and than thaere's me ...

I just had a dispute with my father, about my desire to buy a home and customize the kitchen, Why is that a concept too hard for him to grasp? I guess my situation is impossible to understand until you live in a world that does not "fit" you.

Everyday I exsist in a world that was not designed for my exsistance. After a day full of climbing and reaching I don't want to come home to a place where I have to do the same. It's exhausting to drag a step stool around my kitchen and climb up and down just to cook a chicken breast!

My life is taking on a new direction and I'm finally starting to feel that there are places where I can "fit"