1,576,800+ minutes

3 years. 1095 days. 156 weeks. 3 years since I’ve been able to run, jump, skip, feel the earth underneath me, stand in the shower, walk to school, run down the stairs and kick my brothers…

1096 days ago I was untouchable. I was healthy, I could walk, run and there was never anything that could ever make anyone think otherwise..

1095 days ago the “sad story on the news” Became me. The “random, rare neurological disorder stricken teen” was now me.
I was walking that morning and next thing I knew I was in the hospital getting MRI’s, lab work, central lines, plasmapheresis, lumbar punctures, IVIG, being catheterized, having blood clots, getting IVS, wearing compression stockings, leg braces, spending weeks on end in the hospital, Physical therapy, Occupational therapy and the things I could do without thought, now took more thought and energy than you could ever imagine.
The day before I could sit up, then the next, I needed 2 people holding me up from the front and the back of me. I needed a tilt table to even stand upright. I needed a wheelchair to move around.

My entire life changed in 5 minutes and that little innocent 14 year old girl had NO idea.
She had absolutely no clue.
She wasn’t even scared. She didn’t even KNOW. She was confused. She was angry but not scared..She thought it was temporary. Why wouldn’t it be? Why would she be paralyzed for more than a week?
“Doctors can cure anything” Right?
Why would she need a wheelchair as her way to get around?
She was perfectly healthy?
She was ALWAYS safe?
She was in gym class, just yesterday?
Why would something ever bad happen to her?
What’s a paraplegic? And was she one?

I can talk for hours about all that I’ve lost. I can talk about all the pain I’ve felt, all the things I’ve seen on the 6th floor of Connecticut Children’s Medical Center and all that I’ve been through but I don’t want to remember this day as a “bad day” this day isn’t bad. This day is the day I became who I’ve meant to be.

Transverse Myelitis : you have tested my entire being. You have tested my faith, my strength, my patience and everything in between. You have hurt me not only physically but mentally too.
You took my legs, you took the freedom of standing and running.

But you NEVER touched my soul not even slightly, you NEVER took my happiness. You didn’t ever take my smile.

You tried to ruin my life, but all that you really did was change me. You wanted to change me for the worst. But you sure didn’t.

Because of you, I look at this world so much differently. I go outside and breath in the air so much more deeply than before. I appreciate the colors of the sky so much more. I enjoy the sound of laughter and the smell of grass more than anyone ever could. I wake up everyday and take a deep breath and say, “Thank Goodness. I’m alive.”

You brought the people to me that I’ve always needed.
You’ve given me opportunities that I would never of dreamed of without you.
Because of you, I’ve become who I was always destined to be.

Thanks to Transverse Myelitis, I’m me. I’m a 17 year old girl that can’t walk.

But I CAN do so many things.

Transverse Myelitis.. You thought
you could take away my light… But all you did was give me my chance to shine brighter than I ever would’ve been able to without you..
So joke’s on you. You didn’t ruin me. You formed me. Thank you for the horrible days. They only make the wonderful days ten times better.

Transverse Myelitis, I thank you for letting me get here.. 3 years, 156 weeks and 1095 days later. Stronger and brighter than ever.

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What are you waiting for?

Many people out of curiosity, have asked me if I’m scared to die.

I used to be. I was absolutely terrified of the thought of death. I used to be afraid all the time, constantly.  I can’t lie and say I haven’t been afraid to close my eyes.
And, I’m not going to sugar coat it.
I’ve had times where I thought I would never wake up and smell the fresh breezy air ever again.
The thing is, I am not that afraid anymore. I’ve realized that even though I could possibly die, so can you. Why should I be any more afraid than any of you? I shouldn’t be. And guess what? I’m not terrified anymore. I’m not scared.

I’ve realized that, I can’t live my life in fear AND also be happy. So I chose to JUST be happy.

Anyone can die, at anytime. It’s the only thing that’s certain in this life.
I truly believe, every person has a certain amount of minutes on this earth. The minute you were born, you were given a certain amount of time. I believe you are not taken from this earth on accident.
The truth is everyone and anyone can get sick, they can randomly get diagnosed with cancer, or even get hit by a bus.
That’s why you can’t take life too seriously.

There isn’t always a ‘tomorrow’
Everyone seems to wait for Friday, for summer, for Christmas, for ‘tomorrow’. But you just can’t live like that. So, why do we all live like that?

Life is so very short, fragile and so precious.
Everyone takes life so serious. For what reason? No one gets out alive anyway.

Flipping out over a dirty dish, yelling at your daughter for not eating her broccoli, getting mad over the mess your kids made in the kitchen, is it really that big of a deal? No. It’s not. We really all do know that it’s not, but we all seem to get mad, flip out and yell over these tiny itty bitty things.

Every now and again, I think you should all step back and look at the sky, look at how the leaves blow in the wind, watch your kids chase after each other in your front yard, see how happy your dog gets when you just throw a stick for him, listen to your neighbors mow their lawns, hear the laughter around you. Step back and realize life isn’t about working till you can’t anymore, it’s not about money, and it’s definitely NOT about materialistic things.

We shouldn’t dread to hear our alarm clocks go off in the morning. We shouldn’t hate school, we shouldn’t hate dealing with certain people. We shouldn’t feel like we have to “deal with people” at all.
We shouldn’t dread life. We shouldn’t have jobs we hate.

It’s not about that.

It’s about loving so deep, it’s about late night laughter with your mom, it’s about reading books you won’t have to be tested on, it’s about hugging your best friend so tight after not seeing her for 6 whole weeks, it’s about having to leave your dog home all day long, but they still get so excited to see you, it’s about baking cookies with your brothers, and eating the dough, it’s about spending time with your family and making memories, it’s about sunrises and sunsets. It’s about smiling big and laughing as hard as possible. Till your stomach hurts. That good hurt.

We all get so caught up in life, the worthless petty drama, money and our jobs that we all seem to forget how beautiful this life we live is.

Life is so short…in a blink of an eye you’re 85.
Don’t hold back. If you love someone tell them, if you love cupcakes so much, but you’re on a diet just eat it!

And, if you want to dance, dance.
Work well, not hard. Try to smile every chance you get, find the good in everyday. Kiss your kids, and hug your parents.

We all have struggles, we all have hardships and ups and downs.
That’s what makes the good things in life even better. Yeah, bad things have happened to me. Bad things happen to everyone, everyday. But that doesn’t make life bad.
We all fail, we all cry and we really all don’t understand why.

We only have one life, we only have now. You never know when that bus is coming.

Outside.

I’ve sat in my chair and just stared outside.
I hadn’t been outside in weeks. I was too sick. I couldn’t even leave my hospital room at some points

I would watch people walk fast to get to work on time, I would watch people talk and eat and just live.
I longed to go outside where these people lived.. How were they living, so easy?
And I wondered.. How do they not notice what’s happening in the 9 story building right beside them. It’s all you know. How could they not?

How could they not know what was happening in between my 4 walls? And the halls around me? How could they not hear the screams that I could hear every time I closed my eyes?
How could they not hear the loud piercing beeping noises that sounded more like music to me and each monitor and IV pole had there own beat. How?
How come everyone else was outside just going on with life while it seemed like on the inside everyone’s life was slow motion?
I could sit at my window for hours.
Watching snowflakes fall, rain drip, sun shine, the bright moon, and the way the stars sparkled, I would watch the sun set, the colors were so beautiful despite how ugly the world could be.
Still no matter what the weather was, what was happening around me, these people still all had no clue.
No clue a 16 year old girl was staring out her window watching them live, while just a week before she was so sick unable to even sit up.
No clue that 4 stories of a children’s hospital were filled with kids staring, wishing, pleading to live just like them.
Finally I went outside.
And I let out a huge sigh of relief just as I was wheeled out into the sunshine..
You don’t realize that outside is so breathtakingly beautiful until you go months of being confined to the same 4 walls.
You learn to love the warmness of the sun on your face, the breeze of the wind in your hair, the smell, the crunch of leaves, the coldness of winter, the smell of rain, the colors of the sky that makes you thank god you’re alive.

1/19/98

For the last two and a half years of my life, everything about me has been based off of numbers, percentages and statistics. 1/19/98, 16 years old, Female, Transverse Myelitis, complete paraplegic, that’s how I’m remembered, or at least in the medical world..

The statistic of – 1/3 with Transverse Myelitis recover practically, 1/3 completely recover, and the remaining 1/3 show no recovery at all.
That’s what I would get told if I asked if I’d ever walk again.

My parents, doctors, physical therapists, the nurses and neurologists, or really anyone for that matter, would all have this look, that they didn’t know if I’d ever walk again..
At 14 years old, I just wanted reassurance but they unfortunately couldn’t give it to me.

Or the statement that still chokes me up every single time.
– “Generally, people who experience a rapid onset of signs and symptoms have a worse prognosis than those with relatively slower onset.”
My onset was in 5 minutes..

1 minute I was hurting, 1 minute I was in a ball shaking thinking “I’m pretty certain I am dying” 1 minute I was walking and the next I wasn’t. The thing I spent my first 3 years of my life working to master, was gone. Just like that.
I couldn’t move my legs, I couldn’t feel them, and I couldn’t walk.
And that was the last time I could, the last time I could stand without thought, the last time I could feel my hand against my thighs, the last time I could dance freely, the last time I could just simply jump out of bed, it was the last time I was innocent, the last time I had no worry.

February 2nd, 2012.. 7:15 AM was the last time I thought I was untouchable.
Who really remembers what they ate, what they said to their family, what they watched on TV, how they smelled, what they wore and what they thought of from over 2 years ago?

I remember it all too well, the look my twin brother gave me, I remember he was just as confused as I was.
I remember him sitting next to me on the freezing bathroom floor holding me up. I couldn’t sit up anymore. How could that have happened to me?
All I remember thinking was I had to keep my eyes open, and if I closed them, it could have been the end.
And I didn’t want it to end. I was only 14 years old!!
I hadn’t really lived yet, I hadn’t loved and I hadn’t even graduated the 8th grade.
I remember my dad frantically running away from me to call my mom. I will always remember the crack in his voice, as he told my mom that I couldn’t walk.
I remember the car ride so very well, I looked at myself in the mirror and I don’t really remember what I thought.
I wish I could of told myself “hold on, it’s gonna be a rough ride”
I also, remember my dad running through the house trying to find his keys, I remember him running down the stairs and jumping into his truck and going as fast as he possibly could go, to get me to the hospital.

I remember it being silent. You could hear a pin drop.
I remember very clearly, my dad telling the lady in the emergency room, “she can’t walk, she can’t move her legs anymore! Do something!”
I remember throwing up, I remember being calm from spinal shock I believe.
I still kept telling myself that I really had to keep my eyes open, and every single time I’d almost fall asleep I’d wake myself right back up again.

And from that day on, I became a number, a date, a barcode, a statistic, and a percentage.

I know that I seem kind of unlucky.
I know I’m looked at as a “sad story”
I know I’m looked at the unlucky one who didn’t get a recovery like she wanted.
I’m looked at as someone who doesn’t get a break, who is different, who goes by her own books.

And that’s why I know I’m not a number, a barcode, I’m not. I’m a person. I’m not a disease, disorder, a syndrome or whatever you want to call it.

I’m not my birth date, I’m not my age, I’m not my weight, or the color of my hair. I’m all the books I read, all the words I speak, I am my smile, I am the small dimple in my left cheek, I’m the sweetness in my laughter and I’m the songs I sing so loudly and proudly, I’m the places I’ve been to and the one I call home, I’m  all the things I believe in, I’m the people I love, I’m the pictures in my room, and I am the future I dream of.
I’m not Transverse Myelitis.
I only have Transverse Myelitis, but it doesn’t have me..
I am not what you see, I’m not my scars, I’m not a wheelchair, I’m not a diagnosis, I’m Alex and I’m not part of a 1/3rd, I’m not just a name in a computer, I’m not just a patient, I’m not just a student, I’m not just another sad story.

I’m Alex and my story isn’t sad, it’s beautiful.

Dreaming.

I go to sleep excited, every night in hopes maybe I’ll dream that I’m dancing, running, jumping, skipping, laughing, on a beach perhaps.

Sand between my toes, cool water on my arms, warm sun on my back, slight breeze on my legs.
No worries, just the sound of the waves crashing against the shore.

When people say you don’t realize what you have until it’s gone, I never knew what that truly meant. But now I really really do.
You live your life thinking it will go one way.
You plan and you prepare.
Because really, who thinks anything bad happens to THEM? Bad things only happen to other people, on TV, on the news, in the newspaper, but never to you.
But then all of a sudden.. YOU are the “other people” you are the story on TV. Your story is on the news, and you’re in the paper.. Then you realize bad things do happen.. everyday, to anyone, it doesn’t matter who you may be, how old you are, what you look like, if you are rich or poor, or how smart you are. It really doesn’t matter.
I knew people got sick, I knew people were in wheelchairs, I knew. But why would I ever be one of them?

I was always safe, I wore my seat belt, my helmet, I looked both ways when I crossed the street, I was always the careful one in my family. I was the healthiest, I was the innocent, carefree, “in her own world” kinda girl.

I was untouchable.

So I thought..

I was walking one day, then the next I wasn’t. It’s that simple.

I went from hurting thinking it was the flu to being paralyzed within minutes.
When that happens.. What do you do? How are you supposed to live? How are you supposed to have kids? Live alone? How are you supposed to live without your legs? How do you get by when half of you is always missing? This isn’t how my life was supposed to go, I was untouchable, right?

If I could live my life over, I wouldn’t change that I was so unaware, I wouldn’t change that I was innocent, I would not change a single thing. No one can take away the dances I’ve already had.

But now since I AM aware, I can only make everyone else aware too.

So here’s the only advice I really have for you,
Dance, dance until your legs hurt.
Run, run for those who can’t.
Love, love with every ounce of your being.
Laugh, laugh so hard you can’t breathe, laugh until you cry.
Don’t be too serious, I mean..No one gets out alive anyways.
Go on vacations, you can always make money, you can’t always make memories.
Don’t forget.. Kindness is free.
No matter how you feel, get up. Dress up. Show up. And never give up.

NOTHING EVER happens how you imagine it will.
And whatever is good for your soul? Do that.
Even if it is just dreaming.

Dear, Transverse Myelitis

Before I had Transverse Myelitis..

I never EVER heard of it, now I can’t EVER unhear it.

It is plastered in my brain forever.

An only 18 letter word ripped a 14 year old girl from her perfect life and threw her into a crazy one, ripped her apart, took away her legs, her freedom, her 8th grade school year, changed her whole life as she once knew it.

Just a 18 letter word that dictated my future, dictated my hopes and dreams.

An 18 letter word has changed thousands of people.

I don’t want anyone to feel the pain I’ve felt, the pain my family has felt. I don’t want anyone to know how it feels to not be able to walk, to look at your legs and they don’t even feel like your own and they just don’t work no matter how hard you try, they just don’t. You can stare at them for hours, but they won’t move. No matter what you do.

This 18 letter word has changed my lifestyle, my abilities, who I talk to, who I love, who I trust, how I think, how I feel and who I am.

This disease has made me become who I always have wanted to be, but never really knew how to become.

I didn’t know what I wanted to do with my life, I didn’t know how I was going to help people but I knew I wanted to, I didn’t know how I was going to change the way people think, but I knew I HAD to.

I had so many thoughts and ideas but used to be SO AFRAID of what everyone thought. Terrified and self conscious.

I was afraid they’d not agree with my thoughts, I was so so very afraid. So, I didn’t ever, not even once speak up.

This 18 letter word taught me how to speak up, even if I was afraid, even if everyone laughed, even if no one agreed with me.

Transverse Myelitis, taught me that even if you’re scared, you have to do it anyway. You’ll regret not doing it and you may never have another chance to do so.

This 18 letter word has made me KNOW I want to work in the medical field, with children.

Now I know that I have a voice and before, I just never knew I did.

This stupid 18 letter word isn’t who I am, or what I am. Not one bit.

It’s a tiny part of me, this 18 letter word has made me become me, and even though I truly do hate TM with a burning passion..

I do have to thank it for teaching me so much, for showing me- my thoughts matter, teaching me to always live each day as if I’d never have another, showing me what’s important, showing me that it really doesn’t matter what everyone thinks, it only matters what YOU think of yourself, and if YOU love YOU, nothing else matters.

So..

Dear Transverse Myelitis,

Thank you. Without you, I wouldn’t know who I am. Thank you for the lessons, thank you for showing me that walking isn’t everything, thank you for showing me my real friends, thank you for making me brave, thank you for giving me the people that I’ve needed all along, thank you for keeping my life interesting, thank you for knocking me down but letting me get back up again, and finally, thank you for being so horrible.

Because you taught me that there is so much good in the bad, nasty and horrible, you just gotta find it.

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I’m 16. Not a super hero.

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People often tell me “I’m wise beyond my years”
I never really knew what they meant.

I mean I was a completely normal innocent teenage girl who was in school one day then I was scooped up & put into a hospital full of adults, full of adult things the next day.

But what people don’t know, is that I know how to talk to doctors, I know how to talk to parents, I know how to act in front of different people.
But if you put me in a room full of other 16 year olds, I would be just like them.

People forget that..

They forget that I’m just a 16 year old girl.

People often times expect me to act a certain way or be a certain way..
They expect me to be strong all the time, brave all the time.
I’m not, I cry just like everyone else.
I’m not brave all the time, or strong all the time either.
I’m human.. Not this super hero..
I cry, I scream, I fall apart.
I have days where I really feel like I just need to cry..

I’m just like every other teenage girl. I like makeup, magazines, I like shopping, I love to have fun, I’m a little boy crazy sometimes….

I’m not an adult like people portray me as.
I’m 16.

I know how to act adult like though, I know how to talk to adults. I’ve been around very adult things and I’ve heard and seen things that make me able to talk like an adult.
And I’m mature because I’ve had to be, I know a lot of adult things & I know things most teenagers do not.
I’m more like an adult in the way I look at problems and situations, I’ve found myself when other teenagers haven’t yet.

I just don’t want anyone to ever ever think I’m strong all the time or I never cry or I’m “so perfect” because I’m not.
I cry. I fight with my brothers. I’m not perfect whatsoever. I sometimes block people out if I’m sad,
I cry when I’m mad. I don’t handle everything perfectly and I am not all sunshiney all the time. I roll my eyes, I shrug my shoulders, I act like a teenager. Because I am one.

I don’t want anyone to treat me differently because I’m “wise beyond my years”
What I mean by this is, I don’t want to be talked to like I’m an adult. I’m a kid. Just a kid. I may be different than some teenagers, but I like to be treated as I am.. A 16 year old girl.

One time I was having a melt down and someone made a remark something like this.. “After all she’s been through… She’s crying over this!?”

I can cry when I think I need to! I sometimes actually cry over really dumb things…what human doesn’t cry!!!? 

I usually cry over things that are small.. But when it comes to bigger things I don’t cry.
I don’t want to be looked at as a super hero.
I’m a regular person who just deals with this life I have.. That’s all, really..

I can’t make Transverse Myelitis to away, I can’t make my legs work, I can’t make my adrenal glands work, I can’t make my back healthy, I can’t stop these things from happening..

 I can’t make this all go away..As much as I’d love to, I can’t.. All I CAN do is just keep living my life as I am. 

I’m the same Alex I’ve always been.. The weird, quirky, “won’t stop moving”, loud, dramatic, laughy girl.. I’m still me.

I’m just like you..
I just get around a little different, this doesn’t make me a super hero.

I have no other choice but to just keep moving along and keep dealing with all the things I’m given. It’s that simple.
I’m 16. Not a super hero.

 

 

Update!

I know I’ve neglected my blog..
So here’s I am! I’m back.

My surgery didn’t go the way it should’ve.. But.. As Kim (pt) says “why did we think this would be easy.. I mean you ARE you..” I don’t exactly do things as expected.

SO the actual surgery went fine. I needed a blood transfusion but that’s normal. I woke up SO SWOLLEN. I had to have 4 liters of fluids.
I woke up in agony. (This may be dramatic!)
I woke up in tears and to have 3 nurses measuring cuts on my face that were dripping blood. Fun? And I was so confused haha.
I was in so much pain that I was hyperventilating (making my heart rate & blood pressure go up.) the I got very calm once they let my family come in to see me.. I was on a lot of medications so I kept forgetting to breathe.
But finally after 5 hours I was stable to go to a floor.

I had so many lines, drains, leads and wires..

Then I did great! But I couldn’t eat. I was too nauseous. So I got a piccline for TPN (IV nutrition) & lipids (IV fat)

Then a few days later my back started draining. It was draining because I wasn’t getting proper nutrition for a week. So my surgeon, put a small wound vac on at my bed side (I was awake..)

Then on January 19th it was Matt and I’s 16th birthday 😀

And on January 20th I went BACK into the OR for my back to be reopened & get my back cleaned and then a HUGE wound vac got put in. Keep in mind my back was open but was held together with the wound vac. So it drained a lot into a drain thing.

It’s like a vacuum.
Then I needed 2 blood transfusions. My hemoglobin was very low.
I was so pale.
Then 4 days after I got my wound vac out. I had just a drain.
After my wound vac was out, I was doing good. My wound “infection” was good.
I got my piccline out as well & started eating well!
I had blood sugar problems but I was good..
THEN. On February 9th
I began having fevers. I was put in isolation, which I do not like.
I was short of breath and in a lot of pain. I got a CT scan with contrast.
It showed 2 pockets of fluid around my spine & my lungs looked fuzzy.

I am a very hard IV access so I got another piccline put in.

 I got SO MANY X-rays of my piccline and my chest!
So I was on every IV antibiotic ever. And we found out I have some type of an adrenal gland problem. I don’t produce the steroids my body needs. So I have a possible Addison’s disease diagnosis.
And the fluid pockets were a “hard ware infection.”
I was really really sick.
Isolation sucks..
But then after I had my infection, I was really weak.
When I started PT again, they tried helping me sit up but I needed 2 people to get me up. I was using all my arms to hold myself up. And I just felt heavy & tired.

Kim (pt) walked in my room and was like “only you..” hahaha.

But I had to get strong again. Which took 3 weeks. And now I’m home.
I was in the hospital for 2 months.

I’m slowly getting back to me again. Even though I have the Addison’s disease lingering.. I have to just keep going.

It’s a lot. I’m not going to lie to you. I’m not gonna sugar coat it.

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The running dream.

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(Pictures of me before TM.)

“If you can’t run with your legs, run with your heart”

This is my favorite quote.
A specially  for today.
I had a dream last night that I was training for a run that was coming up. And I was doing step ups on bleachers at the middle school I went too. Which kind of freaks me out since, 2 days before this happened I did that in gym and I felt unusually tired and my legs felt shaky. (This was probably due to TM, but I obviously had no idea, and didn’t think anything of it!)
 
My friend, Jyselle has a video of me and her and our other friend Sarah, dancing and jumping everywhere that day too. 
So this dream really freaked me out.
 
So back to the dream,
I was doing step ups and burpees in the gym, all alone.
But, I wasn’t walking how I used to. I used to walk with my right leg and foot turned in a bit and I never really walked anywhere. I danced, skipped and jumped every where, all the time.
When I was doing the step ups, I looked fine, but once I stopped I limped really bad and I would almost fall over.
 
As I was leaving the gym, I went into the hall way where the locker room and gym met and I picked up ARM CRUTCHES?!??? 
 Blue ones.. The exact ones I use in physical therapy.
 And there is stairs to go back down into the locker room.
As I was walking to go towards them, I waddled down them slowly. I walked into the locker room where there was a mirror and I saw that I had short leg braces on too.. (AFOs)
Then as I went up into the main gym all my friends were clapping and everyone was so happy.
I didn’t understand why…
Then my physical therapists Rosie and Heather come running over to me.. WEIRD?!! Right.. But they said “you’ve tried so hard for this.. You finally are walking.. You did it!” I then hugged them with both of my arms and my crutches fell to the ground.
 
Then I woke up..
I woke up with tears and I was shaking. 
 
This was the most real dream I’ve ever had. It was so vivid.. So real looking..
 
I’m still in shock..
I tried going back to sleep because I so badly wanted to watch myself walk again..
Even though I wasn’t walking easily or “normal” I was walking.. Pretty good.
 
So even though I can’t run right now, I can run in my dreams and with my heart.
I don’t know what this dream means but I really am confused by it..
 
But I can’t explain the feeling I had when I woke up..
This year is starting off with a lot of hope..
This year is gonna be a good one.
 

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