Rhana.

img_6864
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

 

Old and new. 

A few years back, one of my good friends asked me, what I missed most about my “old life.”
At the time, I didn’t really have an answer to give her. I had always taken everything for granted and didn’t even realize it…
The sunrising everyday was just how it should be and always was. It never even crossed my mind that some people, couldn’t guarantee they’d see the sunrise the next day. I never went to sleep scared of not waking up and I definitely, did not see things the way I do now.

My entire mindset is different. I’m different… so different.
If I could answer her question today, I would tell her:

That it’s hard to remember that there was a time before now. But there was. I could jump up in the morning and I could go to school. I could stand in the shower and feel the cold floor on my feet. I could run down the street just like you. And I would tell her, how much I miss riding a bike.

I would tell her that I wonder sometimes… if I knew then, what I know now, would I have enjoyed those things more?

I mean, who would’ve known that when I got off my bike at 13-years-old that I wouldn’t ever ride one again, like that? I certainly didn’t. That’s just not how we think.
Thousands of moments that I had just taken for granted – mostly because I had assumed that there would be thousands of more. I truly don’t remember when I got off my bike. I don’t remember where I was or who I was even with.

I can’t remember the last time I pulled my leg forward to get off of my bike, that now sits, covered in dust in my garage. It hasn’t been touched in almost 5 years. I would say, I can’t remember the way that grass feels between my toes and that I can’t remember how it feels to run. I can imagine myself running and I have a thousand memories of myself running, but, I don’t remember how it feels. No matter how hard I try to and I would say, that it’s okay that I don’t remember even though I truly wish I did.

And I would tell her that although I miss those things, through missing them I learned that you should always live for the little things. To watch 5am sunrises and 5pm sunsets where you see colors you cannot quite explain. To live for car rides and nighttime strolls with music in your ears and the cool wind in your hair. Live for the days where you’re surrounded by your absolute favorite people who make you realize that the world is not such a cold, harsh place after all. To live for fresh cups of coffee, or the smile of a stranger you pass on the street. Live for the smell of new books and brand new shoes.

To just live for the little things, because one day, I promise you, you’ll look back and you’ll see that they were really the big things. The huge things.

And mostly I would tell her… That from being sick, I’ve learned to enjoy each day as it is. And now, I look up at the sky and all I can think is “I’m alive and you know… that really is a gift.” And even though I miss my old life, this new life has taught me WAY more than my old life ever could have and for that, I thank Transverse Myelitis. It’s weird to say that I am grateful for something so horrible, but I am.

I am so incredibly happy with the person that I am today. I may not have gone where I’ve intended to go, but… I do think, I have ended up where I need to be. Because of having such horrible things happen to me, I’ve ended up becoming a person I never imagined I would be.
If you asked me 5 years ago who I’d be when I was 18, trust me… I would not have said me. I would not have ever thought I would enjoy writing as much as I do, I would not think then, that now, I would want to be in the medical field and that I truly cannot imagine doing ANYTHING else but helping people every single day.

I never ever would’ve imagined that I would be able to say that I’ve had 14 back surgeries or that I’ve flirted with death at 18 years old. I never would have thought that the sad stories on the news would end up being my reality. But, they are. And that’s what makes me who I am.

Thank you, “old life” for the memories, but I’m on to my “new life” now and it’s not going to be spent filled with sadness and longing for you. You were great. But my “new life” is just as great, in a whole different kind of way. This life is the life I was meant to live, I believe that 100 percent and I would tell my friend that even though this “new life” is different, it is better. Because in THIS life, I see color where I once saw none, I hear music in the wind and I feel true, serene… happiness.

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.

2015/02/img_5657.jpg

I’m 16. Not a super hero.

Image

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.

 

 

How I cope.

“How do you cope?”

I get asked this many, many times.. Daily.
The way I used to cope was if something wasn’t going my way, I would stop talking. Ignore everyone and shut everyone out.
Or I would refuse to drink, I have no control and my water intake was my only way of controlling anything.. So I wouldn’t drink.
I would take my anger out on my family.
I would lash out.
I didn’t do this everyday. But this is what I did for about the first 6 months post TM.
I know now this obviously  wasn’t a healthy way to cope.
I didn’t show anyone expect my family that I was having trouble coping.
I’m really different now then I was then.
I’ve grown up.. A lot. Maybe too much.
Now I don’t really have times where I feel like “it’s too much” I know I wouldn’t face anything in life, I couldn’t handle.
The way I cope now, is I talk about how I feel when I feel upset, I write, I call my friends, I FaceTime Kathy, I go on car rides with my mom, I vent to my brothers, I get off of social media.
I don’t tweet, I don’t Instagram, I don’t complain on Facebook statuses. Cause in the long run the way I was feeling was only for 10 minutes then it goes away.
I rarely cry, which I sometimes think is a bad thing.
But when I cry, I let myself.
I know I’m strong and crying does not make me weak.
I wasn’t good at coping with everything before.
I used to just think of everything I lost. I now look at everything I’ve gained.
Sure, I lost my legs. But I didn’t loose my spirit. And I refuse to let anything take away my spirit.
Being a teenager is hard as it is, but when you scramble health problems in there, it’s obviously hard too.
I just don’t over think anymore, over thinking creates problems in my head that don’t even exist. The truth is, we all worry about things that most likely will never ever happen.
I try my best to just be calm.
Yesterday I felt anxious randomly, I didn’t know why. But I just turned my iPad off, I sat back and breathed.. And I felt better.
The more I think of the extent of my surgery the more I get freaked out. So I try to just think of how my spine with be alined. My hips will be even. I will be comfortable.. And that helps me.
I guess what I’m trying to say is, the best way I’ve found to cope is to just stay calm and let life bring you wherever it needs to.
I’m just going to trust my journey.
It’s hard to sometimes, but the more I trust it, the easier everything becomes.
I have to not let little things bother me.
If I just stay calm everything is easier to cope with.
I’m not saying, my situation is easy, because it’s not.
I have nerve damage in my neck, I can’t tolerate the heat. I have very bad sensory problems, my hips hurt, my back hurts, my legs burn and tingle 24/7, I get shaky, I get dizzy, I get sore, I get fatigued, I get UTIS, edema of my legs, I get blood clot scares a lot, I’ve spent weeks in the hospital, I feel weak sometimes..
But guess what? I’m alive and I’m doing the best I’ve done in a long time. And there’s millions of people who have it way worse then I do..
so as long as I live I refuse to let ANYTHING stand in my way of thriving. I refuse.
Sure coping gets difficult, but I’m not going to let the way I feel just 5% of the time dictate how I feel the other 95%..
I’m just going to stay calm..
So life? What else you got?? I know you’re trying hard to kick me down, but it’s not working!!

 

Get back up!

ImageImage

“Fall 7 times. Get up 8”

I’ve fallen.. I’ve cried. 
I’ve wished everything would go back the way it used to be.
When life was simple.
I’ve begged for my legs to work, I’ve cried into them wishing I could feel the ground.
Wishing I could feel my pants on them.
Wishing I could run without a worry one more time.
I don’t wish anymore..
Nothing’s going to change if you just wish.
I plan now.
Nothing happens unless you work.
 
I’ve fallen out of my chair.. A lot.
I fell picking something in my closet up.. So I fell into the closet.
I’ve fallen doing wheelies.
I’ve fallen a lot.
I once took my walker and tried standing up.. I let go….
I ended up on the ground.
I fell in the middle of the street.
But I always laugh.
 
Falling is apart of life.
You’re going to fall down and what defines you is what you do with yourself after you get back up.
And I think the first to pick someone up is the one who knows how it is to fall.
I know how it is to fall..
I know how it is to be confused, scared and angry.
I thought I was going to be mad forever.
It’s all about attitude.
Attitude doesn’t stop bad things from happening. 
But it for damn sure makes hard times way easier.
Laughing is for sure the best medicine.
I’ve taken all the negative people who love to see me down and upset,
out of my life.
They don’t understand my journey, which is fine.
It’s not meant for them.
There’s times when I’ve really been mad at life.
Mad that life kept upsetting me.
In June I got admitted, before then I was doing fantastic and was so so angry that I was back in the hospital.
I was miserable. 
I didn’t talk for a week.
It took me a few months to get over that. 
Now here I am, doing amazing.
And trust me I’ve fought hard to become the girl I am.
I’m not the same person I was a year and a half ago.
I’m so much happier then I ever could have imagined.
My smiles and laughs are genuine.
I try my hardest despite being knocked down over and over.
You just have to get up.. Smile and not let life get to you.
I don’t. And that’s my advice to you.
I know now that I have many hurdles in my road and bumps too.
But you have to jump over them with your head up.
I started this journey not knowing obviously anything..
I’ve learned so many things each time I’ve fallen. 
I’ve learned that you are as happy as you choose to be..
But the main one was “just because you stubbed your toe, doesn’t mean you’re on the wrong path” 
Keep going! The beginning is always the hardest!