Can you imagine?

So many people have told me how lucky I am.

Can you imagine it?

Imagine having all the free time you could dream of. It sounds like a dream come true, doesn’t it? Can you imagine?

But at the same time you’re always tired and never sleepy. You’re always exhausted and you’re either sleeping forever, or incapable of sleeping.

Can you imagine?

You have all that free time and the world is your oyster… but yet you’re in too much pain to pick up the TV remote to turn on Netflix.

Can you imagine?

I have NF1

Today is NF Awareness Day.

Even the city of Minneapolis  has decreed it so.

Can you imagine?

Imagine being fucking terrified every time you go into the simplest doctor’s appointment, because you never know if another surgery is on the table. Imagine your blood running cold the moment your body has decided that one again, you’re atypical and body, you REALLY should read the textbook because you’re doing the things you shouldn’t do and I don’t WANT A TUMOR, dammit!

Imagine it.

Imagine having no cure. No treatment. Just random drugs or surgeries or therapies thrown at your body like a game of Russian roulette. If you’re lucky, it works like a charm. If you’re me, it works with side effects.

Can you imagine?

Imagine over a dozen medications running through your veins to keep you alive. Not pain free – no. You are in pain every day of your life. You don’t know what it’s like to not have pain. Imagine even more comorbid disorders.  Just imagine it.

Can you?

Am I so lucky now?

Am I so blessed to have all these free time when it’s because of my disability?

Imagine being called amazing. Inspirational. Incredible. For doing things that non disabled people do. Can you imagine it? Can you imagine crying yourself to sleep at night, because you’re TERRIFIED of your next visit to the doctor? Can you imagine dreading getting out of bed, because you’ve finally gotten somewhat comfortable but you know the slightest movement will bring all your pain back?

Can you imagine doctors not knowing what the hell you’re talking about, despite the fact your genes are one in every 3000 births? NF is more prevalent than  cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s Disease combined.

Am I so lucky now?

I would be honored if you made a donation in my name to help fund NF research. Every dollar is matched during NF Awareness Month

If you are an Aussie, you can donate here. If you are in the UK, you can donate here

The day it all changed

There’s no cutesy graphic to go with this post. No Pinterest-worthy picture. My words are messy and garbled. I’m far from eloquent – not like I’m always an award winning writer. But lately, I’ve been reflecting on the day it all changed. The day everything I knew fell out from under me. The day where my hopes and dreams were shattered.

May 9th, 2011. Almost five years ago. My first back surgery. July 9th, 2013. The second back surgery due to complications from the first. But the May 9th surgery shattered everything. It changed. My life changed. My world was turned upside down. 

My life became more pain. More questions. Less answers. More specialists. I have an impressive scar down my back and a straighter spine but at what cost? 

Three years later. May 9, 2014. It was supposed to be the best day of my life. My college gradatuon. Didn’t happen. Due to that back surgery. 

And now. Two years later. 

I am broken. 

I am hopeless. 

I have no college degree despite spending six years in undergrad. I am drowning in debt. I’m trying to get them forgiven but loan people are butthippos. 

I am trying to find a purpose and meaning in my life. Is it my blog? Is it activism? Is it being an advocate? Is it anime conventions? 

I was a semester and a half away. 

I graduated high school ten years ago as of June 2nd, 2016. I expected to be drowning in debt but in a Ph.D. program. Nope. 

Instead here I am. Ten years. Five years. Two years later. Trying to aimlessly find a meaning. 

What I Want You To Know

What I want, no, need you to know about how my brain works.

What you should know is that when I play with my phone while you’re talking to me, it doesn’t mean I’m not paying attention. It doesn’t mean that I don’t care about what you have to say. It doesn’t even mean I’m being rude. By playing with my phone, or sometimes iPad, I’m keeping myself grounded in a world that’s scary to me. I’m stopping the thoughts and obsessions from spinning in my brain. I’m stopping the sounds and noises from pulling me away from reality.

What you need to know is that I am not lazy. For most people, going out and about is no big deal. But for me – it engages all my senses. I have the unfortunate combo of hypersensitive hearing in one ear and hearing loss in the other. It makes it easy for sounds to overwhelm me. Lights hurt my eyes. Everything hurts. Certain sounds even hurt my ears.

What I want you to know is that some of my interests are childish, despite being 28 years old. It doesn’t mean I’m childish, it merely means that this is something that comforts me in a scary world. Yes, I’m 28 with no kids and can sing a lot of the songs from Daniel Tiger’s Neighborhood and countless Sesame Street jingles. What of it?

What I so badly need you to know is I’m not flaky. I’m not lazy. I’m not unreliable. If you knew me, you’d know I’m loyal, almost to a fault. Ask my best friend about the impound lot adventure from hell. If you need me, you bet your ass I will be at your side. But sometimes, even often, I cannot function. It doesn’t mean I don’t love you. It doesn’t mean you aren’t important. It does mean that my body just sucks and sometimes decides to go on strike or stage a mutiny. Or both, I guess.

What I need you to know, with all my heart, is how much it hurts me when you judge me. When you cast me the side eye for not being disabled enough. When you look at me funny for using the motorized cart at Target. When you judge me and my friends when we park in the handicap spots at Noodles & Company. I wish with all that I am that it wasn’t like this. I wish with all that I am that it was different. But it’s not.

I need you to know so that you can be my friend and that I can be your friend.

If only it were a choice

Image is of me wearing my reading glasses, plopped sickly on the bathroom floor with my golden torbie-kitty Athena plopped on my back.

Image is of me wearing my reading glasses, plopped sickly on the bathroom floor with my golden torbie-kitty Athena plopped on my back. This picture was taken in May.

Soon, I will write about my trip. Soon, I will share pictures of my trip. But today, today I am sick. Today I am in pain. Today I feel awful.  Today, I want to badly to feel normal. More than anything, I crave normal.  More than anything, I crave living a life without pain. Right now? Right now it is 5:54 am. The medication I need to feel human, the medication I need to not feel as much pain, the medication to stop the swelling form my bug bite, the medication I need so I don’t cough when I lay down, that’s across the room. And even though it’s only ten steps away, right now it’s far. It might as well be ten miles. It might as well be forever away. And that’s just the physical side. Emotionally and mentally, the energy is gone too. It’s so much more than physical. It’s so much more than being thirsty. It’s not being lazy – I hate the lukewarm bottle of water beside me. But I’m too sick to get up and get some cold water.

This life isn’t a choice. I can’t count the number of people who have told me how lucky I am. How nice it must be to be able to sit around and do nothing all day. To watch all the Netflix I want. To play all the video games I want. But my life? My life is hardly doing nothing.

I won my battle with social security. Victory number 1. I am fighting for my Medicaid and Food Stamps back, thanks to a screw up I made (I flipped my housing and Medicaid deadlines). My days are spent making phone calls, avoiding phone calls, sending emails, avoiding emails, shuttling to doctors. And trying to actually enjoy life in-between. Doing the things outside my apartment, hell, outside my TOWN that I love doing so badly.  But right now?

I can’t even get up to get my own medication and water. I can’t get up because it hurts too much. If I move ever so slightly, oh, holy ow.

If only it were a choice. If only I could choose to be happier. If only I could choose for the pain to go away. It would be so much easier, wouldn’t it?

But that’s not how my life works.

*insert a witty remark about ableism here*

I was recently told that “My partner’s niece has CP and is in a wheelchair! She doesn’t let it hold her back. I sense that same grit in you.”

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Well then. I guess it’s true, to an extent. I am fiercely stubborn. I am fiercely determined. I don’t let the fact that there is no cure for my disorder mean there is no hope in my life. But the thing is, it isn’t always that simple.

Some days, I’m in the emergency room, like this day back in late May. Other days, I’m in bed in pain. Some days I do incredible things – not despite my disability, but because of it. Because I’m living with it. Because it’s who I am. But it isn’t a choice. I live with it – I move on because I have to. Life can’t stop because I’m disabled. But it doesn’t mean I have to be your inspiration. It doesn’t mean I have grit and determination just because I am disabled. It’s just all a part of who I am.

I kNow a Fighter

Photo on 3-2-15 at 7.58 PM

You held me down, but I got up
Get ready, ’cause I’ve had now
I’ve seen it all, I see it now
I’ve got the eye of the tiger, a fighter,
dancing through the fire
Cause I a champion, and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am the champion, and you’re gonna hear me roar.

This year’s campaign with the Children’s Tumor foundation is I Know A Fighter. I don’t know life without NF. I was diagnosed at three years old. I’m turning twenty-eight this summer. I’ve known had to say my disorder from that age. Apparently it’s cute to hear a three year old rattle it off.

I’ve never known life without NF. But perhaps someday I will. Perhaps some day I won’t see my doctors yearly , afraid another tumor has grown. Some things cannot be repaired – my dural ectasia cannot be fixed, my vertebrae cannot regrow.

But it doesn’t mean it’s hopeless. It doesn’t mean things won’t ever change. But until then,  I’m a Fighter. Until then, I fight NF. I fight the internal and external signs. And I keep on living.

We all sing with the same voice, and we live in harmony

This is what sick looks lik. This is what sick IS. I don’t look it? You don’t realize that my body is fighting itself. You don’t realize that I’m allergic to four antibiotics,  an asthma medication that would make my life a lot easier, and a food allergy. You don’t realize that I have an autoimmune disorder, a neurological disorder, rods in my back, an eating disorder, PTSD, anxiety, and a non verbal learning disorder. You don’t realize that I have a balance disorder, that I have a crapload of medications surging though my body. I don’t look it, but you know what? This is what disabled is. 
 You see people like me every day, everywhere. You see people with disabilities everywhere you turn. We are people, just like you, and we have feelings, too. I understand it can be awkward at times when you come across someone with disabilities, but never fear! I’m hear to help you out and avoid awkwardness. NOTE: These are tips from MY personal experience. Other people with disabilities may have different feelings and a different take on life.

1. Never, ever ask me “What happened?” or any variant there of. If you want to know more about my disabilities, there are better ways to phrase it. It’s awkward for both of us when I explain it’s lifelong, and it’s chronic. Trust me, you’re not going to get an epic skiing accident story.

Nothing like that, I promise. You may think it’s making friendly conversation, but you’re really not and just making everyone uncomfortable. Also, don’t ask it while I’m clearly struggling to walk or with a door. I’m really not in any shape to answer you then, and you’re more likely to get a slightly rude come back. It’s rude to ask a stranger these type of question. Get to know me for me. And then ask your questions. I’m more than happy to talk about my disorders with you, as long as you are respectful.
2. For the love of peaches, NEVER ask me “can I ask you a personal question?” This is a good analogy:
It’s never okay to ask a random woman if she’s pregnant. Same way, it’s never okay to ask me if I’m able to have sex, if people want to date ‘someone like me’, if my husband/spouse/siblings are also disabled. YOU DON’T KNOW ME. YOU JUST MET ME ON THE BUS. It is NOT the time or place to ask me a “personal question” because generally? They are rude and disrespectful, and I am a human being, just like you. You wouldn’t ask someone without a obvious physical impairment these questions, so why the hell is it okay to ask me?
3. Don’t give me your home remedies. Don’t tell me such and such person.  Don’t tell me how if I do x, y, z I’ll do better.
Don’t tell me if I do crossfit, if I go paleo, my health will get better. I’ve already given up gluten for health reasons. I don’t need your ‘quick fixes’. My doctors and I have gone through many of these things. It isn’t helpful for you to throw this at me, despite your good intentions.
4. Oh my god, don’t play the Jesus card. You will seriously incur my wrath if you do.
If you say or act like that, I will get angry and upset. I have prayed so many times. I’ve wept to God to heal me, and he hasn’t, for whatever reason. God has a reason for leaving me disabled, and I’ve come to terms with it. Please don’t tell me to just pray. Please don’t tell me if I just trust God, he will heal me. He hasn’t chosen to heal me, for whatever reason. I don’t know what that reason is. I don’t know why I was chosen for this path, and why I’m destined to live a life of physical pain. But you know what? It’s just the way things are.

Now, I do sometimes want to have this reaction to people who are stupid about disabilities:

Really, I just wanted an excuse to use this picture

But you know what? We are people too. We are just like you. We laugh, we play, we cry, we sing. We weep, we rejoice, we bleed, we heal. We do things differently. But we all sing with the same voice, and we live in harmony.

you give and take away…

I haven’t written in awhile, so midnight while watching Soul Eater is the perfectly logical choice, right? Of course. As I’m curled up here in bed, wishing my summer had taken an incredibly different term, the start of school just days away (f I can afford it, but that’s another rant for another day), not knowing how my life is going to play out, it’s sort of terrifying watching where my life is going.

On July 9, I had repeat back surgery, this time to do a partial hardware removal. Things were expected to be fairly uncomplicated. Two day hospital stay, sent home to recover, not a big deal, right? Well, I should have known better. My two day stay turned into a nine day stay, as I developed hospital-acquired pneumonia, diagnosed the night my fever hit 104.7 degrees (highest fever of my life, man). Nearly a month later, I still have a Foley in. Walking is incredibly difficult, as my high school knee injury decided to completely flare up and crap out, so I have a very attractive full leg brace. I knew at one point I may need a full leg brace, but it was a hard  pill to swallow alongside the back surgery.

The surgery also gave me wicked insomnia. I’m able to sleep, some nights, but not others. My primary (who is named Happy Thanksgiving… yeah… really…) prescribed Lunesta but my insurance is denying it and we’re having to fight for it. Le sigh. Just like my Lyrica fight and that took a few weeks to get approved. It’s hard, man, it’s hard.

The simplest trips exhaust me, the most basic chores make me feel like death on a stick. I’m struggling with recovery, and it sucks! It’s been a rough, rough road. I just don’t know how I should feel about it, even. Should I feel relief that I’m recovering? Regret that things have turned out so poorly? Thankful that, for the most part, my doctors finally got their heads out of their asses are and trying to help me?

I find myself terribly angry at God. While at one point, my faith is keeping me going, another part is filled with rage and anger. Why did He let things turn out like this? Why can’t He just freaking HEAL me already? He’s God, right? Surely He can make me better and take away my pain. But at the same time, He’s not. And I can’t understand why. I can’t understand what lessons He wants me to learn from this.

My life has become a whirlwind of appointments, and when it’s not, doing some simple picking up and laying in bed playing Persona 4, Final Fantasy, or Zelda. Or watching Netflix. It sucks that this is what my life has turned into. It sucks that this is how I’m spending my summer. Not having fun outside, not having fun with my friends… but laying around in pain. I mean yes, good things are happening this summer, but at the same time, so much not good is happening. I’m watching my health fall to shambles, and not a single thing can be done.

I just wish there was an option to make it easier. I just wish there was an option to make this pain go away. I just wish there was an option to make things better.

Jesus loves me, loves me still, though I’m very weak and ill

I feel like my world has been shattered and turned upside down. I knew going into my appointment today that there was the chance I’d need another back surgery, but  now it’s facing me dead on and I’m scared and I don’t know what to do.

I went in for my two year followup today (two years is tomorrow. I graduate a year from that. Cool).

I looked super classy, man, super classy.
And… they don’t know why I’m in so much pain. They don’t know why the facet blocks failed, why physical therapy is failing, while I am just suffering at the moment. There is no answer. The doctor is considering removing some of my hardware, but it doesn’t come risk-free. At the same time, leaving them in doesn’t come risk-free. So do I put myself through another surgery? Or do I just live with the pain? Do I do a surgery that could cause possible future NF complications, or do I continue with the way things are, suffering?
The doctor can’t give me clear-cut answers. There are no clear-cut answers. I have to make a decision, and live with the ramifications of it either way. I wish I did have a clear neon sign telling me which choice to make, but there aren’t any of those. 

Because reason says I should have died three years ago

I am told that it is nothing short of a miracle I am alive, be it by the circumstances of life or be it by my own hand. I am told that many other people in my shoes would be homeless, would be drug addicts, would be drunkards. That I shouldn’t be alive due to medicine mixups, ailments, and various things I have.

At the same time, I’ve been told that if I just had more faith I would be healed. If I just believed I could overcome, things would be better. The truth is, I’ve accepted things to be the way they are. It doesn’t mean I don’t channel my energy in recovery. What it does mean is like in the serenity prayer, I accept the things I cannot change and must have the courage to change the things I can.

Oh look, I can climb the twisty thing!

Just because I’ve accepted my disabilities, I feel, doesn’t mean that I’ve let them pull me down. I’ve really beaten incredible odds. I’ve overcome so much. I still have much to overcome. I know that due to genetics my general health will continue to demolish itself. I know that if I try to push myself, believing if I just do a little better I can overcome, I will wind up making things a bazillion times worse. To focus on what I cannot do would be foolish. I can play on playgrounds, I can wade in the water. I can take walks. I can so much! Why pull myself down by  bashing myself?

I can play in the water!

I can’t control what my father did in the past and I can’t deny the impact it has with me today. I can control how I choose to act on the result. I can’t control the fact that I’m disabled for likely life, but I can choose to accept it and make the best of my life, no matter how long or short it is. The important thing is that I keep on keeping on, and instead, continue to defy odds. Continue to shoot down the ones who say I can’t make it. You know what? I may not make it in the traditional sense. But it doesn’t mean I have to give up hope, that I have to quit at life. Instead, it fuels me to go forward, propels me to keep swimming (even though, well, I can’t swim) and gives me a reason to survive.

And if you care to find me, look towards the western sky
As someone told me lately, everyone deserves a chance to fly
And if I’m flying solo, at least I’m flying free
To those who ground me take a message back from me!
Tell them how I’m defying gravity, I’m flying high, defying gravity…
Wicked – “Defying Gravity.”