9-27-12

Just a matter of moments before it happens. I am aware of everything.
Imagine the life of a puppet. Their body is on strings controlled by a being much stronger than them. Every precious move they make has been decided by someone else. The puppet has no say of the decision of their bodily movements. Instead, they are forced to just hang there and except whatever fate the puppet master chooses for them.

I sit there as my body shakes uncontrollably. Attempting a quick glance down at my hand, I see how deformed and unnatural looking it appears. It’s like looking at a crippled up mummy.

My body feels cold. I feel so cold as if I were lying in an ice bath waiting on my impending death. And as quickly as I was cold I feel hot. The hot sizzling feeling creeps up my neck and around my skull. At any moment my brain could melt and drip out of my ears. My stomach is queasy and the parts of me that aren’t flopping around are as stiff as a board mimicking some kind of living rigamortis.

It hurts.

It hurts to breathe.

The strength of what seems like a full grown man’s is what pushes and pulls my neck in every direction. I’m fighting with myself at this point. Fighting to regain control over my own body.

My eyes hurt and I begin to feel dizzy.

I am.

Aware.

Of everything.

An icy rag touches the bag of my neck and I am comforted by some relief. Slowly I gain control back. Slowly..

As things return to normal I am reminded of the promise that I made myself as a teenager. I then take a look at my sleeping son and daughter and am reminded at why sometimes promises, even to oneself, are made to be broken.

I am sore.

I am tired.

I am wondering how I’m going to do this….. again.
And I’m just taking it one minute at a time.

2012

“You’re such a great little pretender.” My great grandfather Langenburg used to tell me. That is the one thing I will always remember him by, and maybe the best judgment anyone has ever made of me. I’m just a pretender.. And a rather good one, at that. Though, I really wish I never would have subconsciously forced myself into becoming such a skilled pretender.

It’s about damn time I stop pretending. Yes… It stops now. Here’s the truth.
I look in the mirror and do you know what I see? I see an average 22 year old young woman with fair skin and green eyes. I see dark hair and a crooked toothed smile. I am slender but look relatively healthy. I can imagine a person meeting me and thinking “She’s shy, but seems happy.” “Outgoing, but a little bit naïve.”

In a first impression I can only imagine how a person might characterize me. All of which are what I want to be. This is who I have forced myself to look on the outside. You see, I’m so good at fooling you. I’m so good at making you think I’m “this” type of person. That’s right everyone, I’ve been FOOLING you this whole time.

In reality I’m not very shy. I’m not shy at all. I have a shit ton to say but no one who will listen. I’m not happy, I’m thankful. I’m miserable in my own skin. Outgoing? Try bitter. Naïve? I am aware of more than you think….

You look at me and you see the person I have made you think that I am.

I wish so much that I could look the way that I feel.

When you have cancer, you go through chemo. When you go through chemo you lose all of your hair and your skin turns pale. You look like the walking dead and everyone can see your suffering. You walk down the street and someone glances at you for a second, with your bandana tied neatly around your hairless scalp and dark circles under your eyes as if you have become visibly lifeless. At that moment, that person has sympathy for you. They smile at you sweetly as if to say “Stay strong, and God bless you for all you must endure.” They may or may not know the terrible pain you go through every single day of the unbearable treatments that you’re forced to go through but for that very moment they stop and they try to imagine. They try their hardest to imagine what it must feel like for you and how strong you must be. They honor you for this burden that you must carry. And for that moment, they become angry for you. They’re only a stranger but they’re angry for the pain and suffering you have. For the fight that you are so desperately hoping to win. And with those sudden built up feelings, they think for a second… We have to do something. We have to stop this from happening to others. It’s not fair. It’s not fair.

Because you see, it’s really not fair.

And you continue walking knowing the acknowledgment that was given to you, with your head held high and suddenly…. Suddenly you feel pride. You’re proud that you may have potentially given someone the motivation to actively DO something for such a humble cause. That your pain and suffering isn’t going to waste. That, even if you die, you’ll know that you helped someone, somewhere, try to find a cure so that others don’t feel the same ungodly pain that you and many others like you feel.

The life of one who has cancer is beyond painful. They endure so much. I have seen close friends and family members pass from such a terrible sickness. But they have help. They have millions of dollars raised each month for a cure. Imagine having a disease that’s shoved under the rug constantly. Nobody knows what it is, and those who do don’t realize the severity of it.

I’m a great pretender. I’m a fantastically fabulous pretender. As a child I had these hopes and dreams of the person I would become. I had my teenage years all planned out in my head. All of the dances I would go to or the boys I would date. I had my childhood thought out. All of the many things I wanted to say or do. And growing up I have pretended my very hardest to be that person that I so badly wanted to be.

Here’s where you begin to negatively judge me.

Here’s where you wonder: “Why can’t she just be herself and be happy..?”

And here’s your answer.

If I looked how I felt. I would be lifeless.

And for once I’m going to open up and for the first time ever, truly tell this world how I, Megan Marie Mastrobattista (Hunt) FEEL.

I wake up every single morning feeling like I never sleep. My eyes remain heavy no matter how many cups of coffee I drink. With every step I take I feel like my legs are made of broken shards of glass that were glued back together by a 5 year old in craft time of kindergarden class. I pick my children up wondering if my arms are suddenly going to go numb and turn to rubber. If I might drop them by sheer accident.. I can feel the entire base of my spine running down my back as if I were just beaten repeatedly in the back and neck with a spiked hammer. I can feel my throbbing, unstable heartbeat in the back of my neck with my spinal cord connecting the rest of my body to my brain. I can feel my cerebellum, occipital, and frontal lobes of my brain swelling with inflammation causing a constant headache. As of lately I have been wearing my sunglasses indoors almost every single day because my eyes fail to adjust to light causing my constant headache to turn into a daily migraine. With all of the brain swelling I find myself having a difficult time thinking… remembering… gathering the right words to say when I speak and end up making myself look like an unintelligent lunatic.

My vision is constantly blurred. Sometimes it’s better than other times, sometimes I can make out shapes and sometimes I can only see a blur of colors that forms the oceanic view of my world before me.

I feel as though I have pins and needles running through my entire body, constantly jabbing me on and off all over like tiny little knives that are continuously stabbing you.

My mind races and slows down. For instance, today while trying to get the kids packed and ready I found my mind racing.. My thoughts were spinning through my head a million miles a minute, so fast that I couldn’t keep up with them. But through my eyes I’m looking at everything happen as if it is happening in slow motion. I can hear voices slow down and deepen. I watch my kids run in slow motion across the room. With that, I become nauseous and am forced to close my eyes in the hope that things will straighten out before I throw up.

My stomach is constantly in knots. My stomach feels inflamed as if anytime I might vomit up my own internal organs.

I spit up blood from such severe stomach ulcers.

I have chest pains and heart murmurs that come and go as they please throughout the day.

Severe insomnia.

Anxiety attacks.

I have mini seizures that force my body to shake and twitch, usually followed by symptoms suddenly worsening and me balling my eyes out in sheer agonizing pain.

I have fevers of 100 almost every other night due to my body’s failing immune system.

That is the life of someone with Chronic Lyme Disease.

Now that I’ve told you how I feel… I have to tell you. I have to tell you that I feel like this every single day.

These symptoms aren’t occasional for me.

So I tell you, it’s not fair that I look healthy to you.
It’s not fair to me.

Because with that, I am forced to act like the person I would be if I weren’t sick.

Because I make up excuses about why I felt tired or weak while trying to help my brother and his wife move into their new home. It was… Uhm.. Some virus I had recently, I guess I’m not completely over it. *cough* *cough*.. and I’m so damn good at it.

I make up excuses as to why I’m wearing my sunglasses all of the damn time.

Or excuses to my children about why I can’t pick them up right now.. Or take them outside.. Or to the park.

I make up excuses about why I typed something strange or asked the same question 3 times in the last 5 minutes.

I’m a pretender. I will pretend to be the person I want to be. The person I’ve always wanted to be. The person I think you’ll enjoy more.

I pretend because nobody gives a shit about Lyme Disease.

Because Lyme Disease isn’t serious to anyone unless they have it.

With Chronic Lyme Disease people WILL NOT bend over backwards to help you or set you up for treatments. Instead, they will watch you as you die and tell you that you are fine. “You don’t look sick….. Why don’t you go and join a good soccer team with some friends or something?” I pretend because I know I will never get sympathy.. And that nonexistent sympathy will never be used to inspire someone else to bring awareness. Not unless they get it.

With Chronic Lyme Disease you’re forced to LIE about how you really feel. You’re forced to pretend that everything is alright when in reality you’re wondering if you’re going to live.. because quite frankly, you feel like you’re dying. Because you are.

And with this I will say…

I don’t remember what it feels like to be normal.

I contracted this disease in my toddler years. I grew up being sick. I haven’t known anything else.

So before you say “Who are you to have children with being so sick? To add the responsibility of two more lives to care of besides your own? Are you NUTS? To force yourself to pretend to be who you aren’t?”

Is it so wrong for someone to try to live out their dream?

I have always wanted to be the person that I pretend to be. I spent my weekends as a child having sleepovers on pain medicine because I wanted to actually be able to have a childhood. I did my best to get back into public school after my 1st round of IV’s because I wanted to know what it felt like to be a teenager. I moved away with a guy who may never truly love me as much as I’ve loved him because I wanted to know what it felt like to love. I allowed myself to have children because I wanted to know what it felt like to be a mother.

I pretended to be okay because I wanted to know what it was like to be normal.

Now tell me, what’s so wrong with that?