Rhana.

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I took this picture above, almost 2 whole months ago. It was September 1st at 11:43am.

This day will forever be painted in my heart, in my soul, I will remember this day… for always.

Rhanas family and friends all gathered for her funeral at her grave site, next to a beautiful body of water.
Let me tell you, it was raining… HARD. Pouring. It matched all of our moods perfectly, I must say.

I sat across from her mom and I was right next to one of Rhana’s best friends, Jody… We held hands. No words were needed. Everyone was standing around a small tent, with big bright umbrellas. All close to each other.
Another one of Rhanas friends insisted that he HAD to hold my umbrella so I wouldn’t get wet. It was an amazing service and about half way through, I see Cheryl (Rhanas mom) look up. Rain was dripping right on her tattoo and then pouring down her spine. The only hole in the ENTIRE tent, just right above her mommas head, perfectly placed.
She bursted out laughing and all of us laughed with her.
Before Rhanas funeral, I had felt very tense, very at edge, just off. I felt sad, and I wanted to sob every second. I wondered why? Why do children die? Why did Rhana die? Why? Her wake the day before, hurt my heart so bad, I wondered why so much more… Then, as I watched that tiny rain drop, drip right down on her mom. I felt a rush of calming, I had goose bumps. The same kind of calming I felt when I first met Rhana.

That rain drop?

That was Rhana.

Fierce like that down pour.
I knew right then and there that she’s okay, and everyone else did too. I’m gonna be okay, all of us are.
I truly do believe that, that she is okay. She is running, skipping and jumping rope. She’s dancing and doing cartwheels. She’s free and she can be anything she wants to be.
I know that you aren’t gone, you are the winds that blow, the sparkles of snow that is yet to come, the sunlight beaming down on my cheeks, you are the gentle autumn rain, you are the soft stars that shine each night. You are not gone, you did not die. You now live eternally within everything and anything beautiful. Just like you were here on earth.

(Rhana had Transverse Myelitis just like I do. She was 15, only 15-years-old. I wish I could bring her back, just give her more time, you know?)

So…I wanted to say this to you.
Dear Rhana,

I think of you everyday, whenever my mind wanders it goes straight to you… Always you. I won’t ever stop talking about you and your life, I will for forever, tell every new person I meet, all about you. I’ll tell them how fully you lived and how you loved so deeply. I wish we could’ve talked more, I wish I tried harder to always be there.
I really really miss you and although we didn’t talk as often as I wish we did, I know you loved me and I hope you know I loved you. I have since the moment I met you at HSC 3-1/2 years ago.

Anyway, I think of you every time it rains (or now snow!) and now, when a rain drop, drips onto me? I hope it’s you. I know it’s you.

I’m going to try to come visit you and your pond really soon and your mom is going to show me around Rhode Island, hopefully before it gets too cold. It already snowed here in Connecticut a few days ago.

I’m sure you already know but… Rhana, you are incredibly missed and I’d do anything for you to come back… as I said before, but it doesn’t work that way, unfortunately.
So l’ll leave it here… as I always say- see you soon, my friend. Until I see you again, I have great peace knowing you’re doing cartwheels and running fast, fast as you can. I know there’s no more pain, no more paralysis, no more hurt, and that you’re painting such beautiful pictures, just as you always did, but now, you can paint with your fingers again!

I am permanently, forever changed by you and the beauty you brought to such darkness. I love you and I always will.

-Alex

 

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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.

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.

 

 

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