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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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.

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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.

 

 

Being happy is enough.

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A lot of people think I live to walk again. I don’t.

Sure I would love to walk and it would make life simpler but I don’t live to walk. I just don’t. 
I know one day that I will be able to, maybe with equipment or any  new research.. And I also know that TM can recover years and years later. I will always have that faith.
But I’m not going to spend my life wishing and wishing.
This doesn’t mean in any way that I am not going to continue to try to walk and give 110%. Because as long as I live,I will.
That’s for sure.
I just live my life how it is. So how it is right now, I’m trying to make it the best and easiest I can.
 
I can’t change it.. I don’t stress things I can’t change. I’ve known since the beginning that nothing changes unless you WORK your butt off.
You can spend years wishing.. But that unfortunately isn’t enough.
You can say “I want to go to college” all you want.. That’s not going to get you into college.
You need to plan.
 
I PLAN on getting as strong as physically possible even if I can’t use my legs. I have my arms and that’s ENOUGH.
I PLAN on going to college.
I PLAN on having as much fun as I can.
While I’m in a wheelchair I am going to play adaptive sports. They’re fun and I never want to regret not playing them.
I don’t wake up and think “I want to walk.” 
I get up and go get into my chair and get going with my day.
You need to believe. And I do believe. 
I’ve had people tell me they want to walk but it’s too much work.
YES it’s a lot of work. 
I will always be working on my goal : to walk.
But if I never get there I won’t beat myself up over it.
I can live in a wheelchair.
I can do everything I could if I could walk.
I’m not unhappy because I can’t walk.
Of course I will always have hope that I will walk one day, but if that’s not today, tomorrow or next year I won’t be upset.
 If I don’t walk. It won’t be the end of the world, I will be fine, I promise. You may not think so, but I know so.
 
I just don’t want to get older and reflect on my life and see that all I didn’t get as far as I wanted to.
Because the truth is, if you always want more and more, you’ll never realize what you DO have..and nothing will ever ever be enough.
You just need to be grateful for what you do have, I never want to realize that I just spent my live wanting to walk and never realized there’s more to life then walking.
I’m happy, I’m independent, I’m determined, I have my ARMS and that’s completely enough. I don’t NEED to walk for my life to have purpose. Walking is overrated.. 
Being happy and grateful is enough for me.
 
 
If you can’t stand up.. Stand OUT.

Get back up!

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“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! 
 

I’m different.

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I’ve always known I was different. I really didn’t know how.. Or if it was a bad different. I was 8 years old when I met Chris, he’s amazing. I love him so much, he’s taught me so much without knowing. He’s in a wheelchair too. At 8 years old I knew that bad things happened to people, I knew that if someone “looks” different it doesn’t mean they are. I knew what paralyzed meant at 8 years old.

Fast forward to 5 grade. A boy liked me a lot, he was super nice. He was mentally impaired. I didn’t care, I was still his friend. Everyone would make fun of him, and it would make him cry and I would always tell him it’s okay, I’m different too. He would write me love notes, get me small gifts. Keep in mind I was in 5 grade I still thought boys were gross. I would get made fun of because of being his friend, but he didn’t have anyone else. I didn’t want to be his friend because I felt sorry for him. I was his friend, because he was different. Like I knew I was. He was genuinely nice also. He wrote me a letter right when I came back to school after I got TM. I still have it. His mom didn’t tell him what happened to me, she was afraid he’d be so upset. Which he was, I didn’t explain what happened. He didn’t care he still thought of me as me.
So now I’m in 10th grade I KNOW I’m different.
I’ve seen things and been through things kids don’t.
I know that I’m not untouchable. I know bad things happen for no reason, to healthy people. Accidents, tragic things. I know kids die, I know kids live  in hospitals.
Most teenagers think they can do anything without anything happening. But you’re not safe. My body attacked ITSELF. I did nothing.
I’m also different because I see things differently.
I’m not like every 15 year old.
I can’t be, I don’t want to be.
I know when people are lying to me, I’ve always been able to know.
If someone’s mean to me, I’m not mean to them. Kill them with kindness.
Sure there’s people I don’t like, but it’s immature to argue with people.
“You’re wise beyond your years” I get told this everyday, multiple times.
I appreciate everything, sure I complain. I can do that.
But I appreciate the small things. I think before I say something about another’s feelings. Not everyone believes what I do, thinks like I do, seen things like me. Once you realize this you’ll get along with more people. What I’m trying to say is I know I’m different. I’m loud, wise, sassy, I speak my mind, I’m honest, I try my hardest. I know reality. I face it everyday. I wake up and my chairs next to me. I don’t remember what it’s like to get up and walk. To feel my legs, to do things without thought. This isn’t a bad thing, I like challenge. I like being different.

(sorry this is all over the place!!)

FAQ!!

🏃

  • What is your full name? -Its Alexandra Renee Berube. I just like being called Alex though.
  • Birthday & age? -It’s 1/19/98  that makes me 16.
  • Favorite color? -purple and orange!
  • Grade? -10th.
  • What is Transverse Myelitis? -A neurological disorder where there is inflammation across one or two segments of the spine. In my case, two. Here’s a link for more info.. http://myelitis.org/symptoms-conditions/transverse-myelitis/
  • Siblings? Yup… 3 brothers (Matt,16 (he’s my twin) Nick, 19. Perry (PJ) 23)
  • Mom and Dad? -Jeff and Rena
  • Can you walk at all? – Nope, just with leg braces. But I can’t get up and walk around.
  • Where do you live?? -Connecticut.
  • Sports? -Tennis, swimming.

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