Welcome to my other blog. I started this one shortly after graduating from the C.I.A, to differentiate between my food and my other thoughts. It's a cozy little place with frequent weird but real, honest thoughts.

There's really not much more to say here, as anything mildly interesting is either down below or written in my Armadillo section above.
Hope you can relate to some of my thoughts and situations, even if they tend to be strange sometimes

Friday, February 21, 2014

Pink Freckles

So, I was going to do a post tonight about Neurofibromatosis. I really was. I started to look back at old posts and I realized I haven't anything new to say. Other than one thing.....

I am almost 30. My NF has been mild. Never really paid attention to it. But I'm almost 30. This is a progressive disorder. I am starting to notice things.
Like how I'm getting a new "pink freckle"  (apparently called benign melanocytic lesions, in my case a "classic spitz")  One of at least four. Which is worrisome, but normal with NF. But still something to look out for; since it could be just another pink freckle or melanoma. 

 I can say nothing new than what I've said now. But I still want to empathize how Neurofibromatosis is serious. It's progressive. We've come a very long way over the decades in trying to find treatments. And by that I mean in another decade or two we might actually have something we can use. We can cope. But that's about it.

Please, just allow that to sink in. Just for a moment. You can treat cancer. You can treat diabetes. You cannot treat this. It's going to progress and once it does, it will spread and take over and you cannot stop it. 

Anyway. That being said, here's a post I am pretty proud of. Read it if you please. Or don't. It wont make NF go away. But maybe awareness will make a difference.

Sunday, May 1, 2011

Secrets; Neurofibromatosis Awareness Month

 What kind of secrets do you hide? An embarrassing story? A difficult past? 
Some secrets are fun; like what you're getting your fiance for his birthday. Some can be like burdens.. Thinking about the freedom of giving them all away.
For years and years my secret was my Neurofibromatosis. It was never something people needed to know about me. Classified information. A need-to-know basis. 
To doctors, I had a neurological disorder (most of them had no understanding of it anyway). But to everyone else I was just a weird outcast.  They didn't know the splotchy spots on my skin were cafe au lait spots, so normal with nf. They didn't get that I had poor fine motor skills, giving me terrible hand writing and even worse knife skills. That my speech impediments and difficulty with speaking is something I hardly can control.

Neurofibromatosis (NF) was my secret. I never felt ready to share it with anyone. The few friends I had didn't know, though I'm sure they knew I was some sort of freak. 
But I've gotten to the point in my life where I need to let it stop being a secret. To own it. To be able to explain myself to people. I don't care if people know, but at the same time, I do care. Letting people in can be dangerous. Letting them in on such a big part of you? Should everyone be privy to such information? To trust someone that much with something so personal can only just end up hurting you in the end. So why the hell bother, right?
What would they think of me? A disorder no one has heard of. That not even doctors can understand or even explain. A disorder I can barely begin to explain to people who don't have it.
Those who do have it and families understand. It's a common neurological disorder that has so many variances and so many degrees of mildness and extreme. Some people may never experience the symptoms another faces every day. One person's massive tumor is another person's nerve pain or itching. Someone's learning disability is another person's curvy spine. One person's bumps is another person's vision problems.
It's aggravating and frustrating. My NF community ranges from large tumors, to constant pain to debilitating learning disabilities. Every one of us is entirely different but completely the same.
It's funny. I feel like I belong and don't belong in my NF community. I'm the weird one, even in my own disorder. Ha. I'm the freak in my own community of odd symptoms. Typical. 
My case is mild in most ways but normal in others. The pain I feel is fast and infrequent lighting bolts of nerve pain. My blurry vision is triggered by extreme light is more inconvenient than a problem. My curved spine, weird bones and over-active senses. I have small bumps on my head, shoulders and back but aren't something I'm overly worried about. I have dark circles under my eyes; something I've noticed in many of my NF friends. It's funny how such strange things you don't even notice are common with my NF friends. It's a little comforting, knowing you aren't the only weird one. 
It's the whole freak part. My issues you can't really see. Not physical. I'm insecure and self-conscience from years of bad motor skills, learning disabilities and A.D.D and failing, failing, failing.Years of bad school experience, both from the class room and from torture from students so bad it kept me up for days of sleepless nights. I went to an entire different school district to escape.
 It's made me untrusting of others; wanting to reject them before they reject me. I want so much to be helpful and friendly, empathetic, but never wanting to invest too much into friendship in case I'm rejected. I'd like to have friends, but am so used to not having them I can't identify what it would be like. 
You start to feel like people are being nice to humor you. Being nice to the weird one. The stupid one. You become suspicious and defensive. All the time.
My emotions are extreme and uncontrollable and explosive at times. I get frustrated and discouraged so easily. And you want to express all that, but you talk so fast and have so much trouble verbally articulating. Here, I see my words and can tell you exactly how it is. But talk to me to my face, and my verbal skills go down by 70%, and I find myself over explaining. Being unintentionally defensive.All of it stemming from complications that NF has brought into my life. It's a struggle to not let it own me. To break through the insecurities and difficulties NF brings and enjoy a productive and happy life, instead of always having that level of mistrust in the back of my head. "Don't let them know too much about you. It's only going to screw you over in the end". So, for years it's been a hidden aspect.
NF is my secret. It's the reason I am the way I am. It's not something I can cure or even manage. If I'm going to get a tumor, I'm going to get a tumor. If  it decides to grow into massive disfigurements, and they are about 75% likely to be un-removable, that's just what's going to happen. No amount of wishing, hoping, exercise or healthy eating is going to change that. Nothing. Can I stress that enough? Nothing.  It's a progressive disorder. I'd rather not know when it's going to hit me. Getting pregnant can exasperate the disorder. There's better things to worry about in life than worrying about something that might not even happen.
That's just what we have to deal with. At this moment in time, I say "If it's going to happen I'm going to deal with it when it happens." but if and when it actually does happen, I'm not sure how I'd feel. I have so many friends who either have NF themselves or have children with it. We all kind of feel the same way. Dealing with doctors, MRIs, symptoms. Wanting answers and solutions but rarely never finding any. 
NF is incredible. You can't control it, or treat it, or manage it. You have to mange life with it with  pain pills and coping. It can either challenge you to accept it and embrace life, or to deny its existence.While I haven't "denied" it, I've kept quiet about it. If you didn't know about this before this post, don't take it personal.
May is NF Awareness Month. I'm kicking it off with this very personal post. Essentially giving away my secret; albeit it's mentioned on both my blogs. It's something so deeply personal. It has made me into this different person. Different. Not less
I hope those of you who don't know anyone with NF take some time this month to research it. But no amount of research can make the impact that talking to those with it can do. We can tell you of our spots. The tumors. The frustration. The feeling of hope and hopelessness. We're the only ones who can control our future, and our children's future where we may have a shot at finding a way to deal with this progressive, spastic, most common neurological disorder.  
We have NF. But NF does not have us.

Tuesday, February 4, 2014

Middle School Misery. -Or- This post is about you. or- Letting go and making peace.

"Make peace with the past, so it wont disturb your present"

I've been thinking about this post for a few weeks now. Letting it knock around my brain and maybe turn into something worthwhile.

I wondered how this post would be received. But I really don't care. I'm pretty sure the only person who reads this is me and Matthew. So what the hell?

This really isn't meant to be a bitter post. Or a resentful or hateful one....But it probably will be....But really, it's.... Just honest....Or a calling out, if you will.  I don't care if the intended people read this and I don't care if you like it.

It would be an understatement to say that middle school was "difficult" for me. It was 3 years of indescribable pain, loneliness and hopelessness. It was every bad made-for-tv-movie about bullying. I will always carry the mistrust. I will always have trouble making friends. I don't know if I even know how to have friends anymore.

If you went to middle school with me, make no mistake. This is about you. We were in girl scouts together, school plays together, and later, Confirmation Class! For the literal LOVE OF GOD! But I'll get to that later.

I don't even know how it began. One spring we were graduating from the 5th grade. The next fall, my best friend moved away and I knew...I just knew deep down that my life was over. I knew people left me alone because I knew her. I knew that protection would be gone.  I cried and cried when she left because I knew I'd be alone.
But I was more than alone. I was alone, tortured and ignored.

What did I ever do to these kids. What the holy Hell did I ever do to you?  These kids were everything I was not. Pretty, popular, athletic, smart. Was that it? Was my hair too short and my teeth too crooked? Was it my stutter? Why did those things matter then and did not matter in grade school?
But what did I ever do to you? You didn't even know I had NF. You just knew I was a freak.

What did I ever do to not only be ignored AND made fun of so badly I was on sleeping pills in the 6th grade? Where, even on them, I couldn't sleep for days.
To be taunted and stalked and harassed on such a daily basis that I'd hide in the resource room at lunch, because no one would let me sit with them. Nobody.
To be under so much stress that at 12 years old my blood pressure got so high I couldn't see straight. 
The internet wasn't really a common thing back then, but if it was you'd probably all anonymously torture me there, too.

But what did I do to have my stuff stolen? My hair pulled so much that I cut it off, rather than try to look normal. To cry every day. To be terrified to walk home, because I worried that since you were all so bold to be cruel to me in school, that you'd be worse outside the halls.

I don't mean this to be bitter or angry. Just trying to be honest. I know this was roughly 17 years ago. I get that. But I want to make peace with all of this. I'm just so tired. So exhausted, you know? From being terrified of people. To have anxiety about social events.  I'm tired of feeling this pain and hurt from something that happened so long ago. I want to let it all go. And to do that, I need to tell you all my past. Which kinda sucks; opening it all up again. Dredging up 17 years of anxiety and repressed memories of these people I'm now facebook friends with....But probably not for long. I'm so fucking sick of all of you.

Well, to be honest, I sort of hate you. I hate you for being in girl scouts with me, and then just......standing there, laughing with friends, saying scathing remarks about my hair, my teeth, my clothes, my spots, my stutter. Look, I get it that I wasn't the coolest person, but I guess I owe you thanks for pointing it out to me....Everyday.

Man. I remember my lowest point. I had this friend. This sweet girl who had the coolest hair. Tiny braids. I suppose she was catching a lot of shit for being friends with me. One day before class I sat down next to her and greeted her cheerfully.

She did not look up from her paper or her book or whatever she was doing. But she spat "I don't want to be friends with you anymore! Take the HINT!" My whole world, my whole universe shattered like glass before my eyes. My head spun. I was stunned and confused and hurt. I was utterly heartbroken. I felt abandoned. My very last friend in the world. I sputtered a meek "Okay" before taking a seat further in the back. Keeping my head down and my eyes averted, trying so hard not to attract attention and trying not to cry. I didn't understand.....but I did, you know? I was the biggest loser in our grade. Possibly our school. Truly the biggest loser. Why tarnish herself? The whitest white girl in the school hanging out with a pretty, smart, cool girl like her? It's funny. Thinking about it now, how clearly I remember the pain. Even though we made up during Nature's Classroom, it still hurt like hell.  Why do these things still hurt almost two decades later?  I was terrified of our relationship after that. So afraid to put a foot wrong.

I'm not saying I'm not without sin either. Angry, hurt, constantly humiliated, I did what any angry-hurt-humilated girl would do. I found a common target. Another few kids they were mean to also. Middle school is survival of the fittest.  There was this one girl. We were best friends almost a decade earlier, in the early, early 1990's.  But we grew up in different school districts and suddenly I see her in Middle school.  I was over come with terror. We were best friends in Special Ed. Me because I had NF, and no one knew what to do with me. She for what I can only guess was severe learning disabilities. I was absolutely terrified. Terrified she'd seek me out and tell everyone we were BFFs...from Special Ed. Everyone knew she was in the extra help classes. And I was just so awful to her. First chance I had I pulled her aside and demanded she never tell ANYONE how we knew each other. I know you wont probably read this, but I know the last time we saw each other I told you how sorry I was.  I'm just so sorry. I was cruel and hateful and scared and a mess. I took out my pain from others out on you and it was a shitty thing for me to do. I am just so ashamed and so sorry.
But there is another, more terrible story.  There was a boy. And we shared a mutual hatred for each other. Why we hated each other so much I have no idea. But we loathed each other. He was nasty to me and I was nasty back. He was the only person I did not take shit from. I wanted nothing more than to see him expelled.  God, I was awful to him. Everyone was. People called him terrible names. But  I didn't hate him because he "Acted gay" or "Was gay" or anything related to that. Everyone else did, though. And I just added to the hate. For no reason. I had no reason to hate him, only that he hated me. And in Middle School, that is usually enough.
I'm so sorry I was cruel to you, too. It wasn't because you were gay, or black, or any other shallow reason. I was just alone and hurt. I was trying to deflect bullying away from me. It is so excuse. It is a cowardly one and a shameful one. But I was so sorry then, and I am so sorry now. I was the worst kind of bully and I am just so ashamed of it.

All of you have been friends since Kindergarten. I had to go to a different school district to get away from you. All of you.  You are still friends. I will never have that. And yeah, if we're being honest, I do sort of resent you for it.

The only thing that kept me going in middle school and into high school was The Culinary Institute of America. I found out its existence in the 5th grade and made it my life goal to go there. I knew college was a paradise of oddballs and acceptance and friendship. Where it was okay to be a little weird.  I'd be with  peers who loved to bake and cook and learn about food as much as I did. It kept me going, it really did. When things got rough I'd close my eyes and picture myself at school, with a boyfriend who cooks. With friends at lunch. Learning how to make chocolates and pastries. It was my sanity and my peace.

I am internally grateful I did not have to go to school with you people. But at the same time I was annoyed I was sent to a Catholic school. Worse still, I had to go to confirmation class in the 10th grade. I was furious that I had to go to Catholic school with nuns who hated me. I was furious I was forced into Confirmation Class. When I protested, my faith wasn't even up for discussion. I was so angry. Forced into a religion I didn't know if I wanted to be apart of.
I had deep anxiety seeing three of the kids I used to go to school with. I hoped we were all a little older. A little nicer. The guys weren't outwardly mean to me, but they weren't exactly "civil" either.
My faith was never more shaken and my relationship to God was never more broken. Throughout Confirmation Class and High school I was confused and angry. Furious I had no choice in how or if I had a religion.
There's this line in the book Cut me Loose that seems to fit my feelings perfectly: "I think you can't really love God if you haven't turned your back on Him first"

It's so true and fitting. It took years to get me back to that place. But that isn't what this is about.

But while we're on the subject of high school.....The bullying stopped for the most part. Girls were still mean and catty to eachother in general. It was an all girl's school. That stuff was gonna happen. But there was this girl who I realized wasn't great when it was too late. It ruined my high school potential for friends. My freshman year, this girl and I did something awful. We online bullied a girl. I knew it was bad and I wasn't for it. I was in a new school and I really wanted to try and make friends and start fresh. But we did it anyway. God help me, we did it. Of course it was all over school. Girls hated me. And rightfully so. I think I've spent the time since then overcome with guilt. I'm so sorry and she knows how sorry I am. I want to spend the rest of my life making up for it.

I just want with this post to let go. To give it all up and just move on. I don't want this anymore. I'm just so damn tired. Tired of the fear of friends, tired of social anxiety. I feel like I've been carrying this for so long. I don't want to hate anymore. This wont make me like you more, or hate you less. I just want to let go of this blob of distrust and the burden of bullying. It sticks with you. It stays and festers. It never heals. It never scars. It's always an open wound. Always in the back of your mind. Never wanting to get too close or be yourself because you are a freak show. And if 100 students hated you and taunted and harassed you, who's to say they are wrong?

I'm putting this out there, because I'm done. I'm almost 30. I'm married. I own my car and have a job I really like with people who are so nice it actually makes me nervous sometimes.  I'm done with this part of my life. I need to let it go of my past so I can have a normal present and a fullfilling future.  I'm tired of my past. I'm tired of hating others and tired of hating myself for my wrongdoings. I'm tired of dwelling on my mistakes and the mistakes of others. Tired of wondering why. I just want to be normal. Close to normal as I can.

Be kind to each other. There's so much hate and pain already. Why add to it?