Why I’m here.

It’s an odd feeling strolling into a children’s hospital and thinking… “Wow 5-1/2 years ago I never even thought about this place, never even step foot into this place. Not even once. Not to visit anyone, never.” Weird? Yes! That is the understatement of my life.
Kids just simply did not get sick in my world.
And, I’m using past tense very STRONGLY with that.
It was a place that used to seem so big, so confusing, so bright, just way different than all the movies, so much scarier.
This place I never knew of, is a second home now, it’s where I feel at home, oddly enough. It’s where I’ve spent months, days on end in, hundreds of days thinking I would never go home in, filled with people I’ve come to adore. I can’t be in the hospital for longer than 5 minutes without seeing someone I know. A patient, doctor, nurse, a visitor… It doesn’t really matter. They all know me, as I know them.
I see kids parents, patients I know. Parents I’ve seen roaming the halls, looking down at the cold bright tiled floors wishing, just wishing they were anywhere but there.

I go through these halls and I realize how accustomed to the babies crying, the blood curdling screams I’ve become. You hear it for the first time and you sob silently. Then you become, sort of numb.

When you circle the inpatient floors and you glance into each room, you can tell… You can see who is there WAY too often to say. They don’t wear hospital clothing, they’re comfy in their bed, watching TV. They aren’t scared. They know how it goes here. They’re alone a lot- unfortunately, because when your kid is chronically ill you can’t be with them 24/7. You just can’t, it’s impossible. But, you really don’t even have to. We know the nurses. We feel comfortable with them. It’s a good thing, but on the other hand, also very sad.

On TV, you think that a children’s hospital is filled with children with bald heads who laugh, smile and skip through the halls. You think it’s getting gifts, and attention. But… It’s really being forced to move in your sleep, forced to get your vitals taken, you’re forced to go to the bathroom, you’re forced to be poked with needles at 5am when you’re half asleep, in a haze, all for your own good, you throw up, you shake and you cry because you just simply hurt and want to be in your own bed.

You’re forced to eat, to drink, to breath deeper, to sit up, to move around, to describe everything you ate, what you drank, how you felt, and “1-10 what’s your pain?”

I’ve lied in my bed on the 6th floor and just kept my door open. For hours. I’m nosey and I’ll be the first to admit it. I close my eyes and hear the sounds, the sounds I have blasted in my head for life, sounds I can hear in my dreams. You hear distant beeping, you hear the nurses talking, talking on the phone, laughing with one another. You also sometimes see them running, that’s not usually good. You watch them be completely still, serene… Then bolt across the unit. You hear babies crying. You see kids strolling the halls. Just as a hospital should be. Quiet. Relaxing, almost. Then you hear “Code Blue, room 6–” and…

Oh… That’s why it’s quiet. All of the nurses are jam packed into one small room, saving a kids life. Right there. Right in front of you.
I’ve seen kids have seizures while I’ve passed their rooms and it felt like all the wind was hit out of me with a baseball bat. I’ve watched a 5-year-old boy turn blue and stop breathing and without any thought, I immediately went to move a little 4-year-old girl who was in the hallway with me so she wouldn’t see. She shouldn’t see that, but here, I was, only 15. I shouldn’t have either.

I’ve straight up heard parents sobbing in the middle of the hallway, sitting on the ground, covering their wet, hot face with shaky hands, and yes, sometimes it was MY parents and my family too.

They look at their child everyday and they smile, they hold in the tears and as soon as they turn around to leave, they lose it.
But..?
Then I remember, I’ve also seen such genuine happiness, the sound of clapping because someone was going home… Home!! after long, hard months of being confined to a hospital room that feels so small once you’re in it for so long.
I’ve seen such positivity where you’d think you would see the opposite. I’ve hugged 3-year-olds and laughed with girls and boys my own age.
I’ve hugged my nurses who are more like my friends, to nights I couldn’t sleep and they let me vent and I’ve thanked my doctors who tell me “no need to thank me, it’s what we do.”

I’ve laughed strolling the halls and I’ve watched snow flakes fall from the windows, I’ve done photoshoots and cried at romantic movies with my night nurses. I’ve built crafts with my nurses while they also did charting, I’ve sang the Full House theme song and Moanas “How Far I’ll Go” so loudly, and I’ve gotten gifts from people who work to save us, who never ask for anything in return, I’ve held hands with nursing students and taught them all about how it is to be the patient. I’ve baked cupcakes with my physical therapist, my physical therapist would bake amazing sweets each week and always saved me one and I’ve had hour long heart to hearts with doctors. My orthopedic surgeon has brought me donuts because he knew I loved them and we thought it was funny. All of my doctors, PA’s and APRNs HAVE and will do anything to make my day just a little better.

Anesthesiologist have held my hands in pre-op because they knew I was afraid and felt all alone. I’ve joked and laughed right before I’m sedated for surgery with residents.

PCA’s have spent hours washing my hair and getting huge knots out, from lying in bed for weeks straight and they even laugh so hard with me watching reality television each night.

It’s not all bad. It’s not all screaming and sadness. I promise you. It’s true selfless love for one another. It’s where I’ve seen how much complete strangers can care about you. It’s tight hugs and wishes of good luck. It’s where kids are saved and where sometimes, sadly they aren’t/can’t be.

But that’s what makes this small hospital have such a strong, close bond.

From the security guards and people working at the desks, to the kitchen staff who would do anything to make sure I was eating, to the nurses who braid your hair after you just got throw up all throughout it, to my favorite child life specialist who I can laugh with for hours, to my Hole in the wall gang camp friends.

It is home. My heart is with Connecticut Children’s Medical Center.
Why? Why do I love a hospital, you may ask? It’s a relevant question for sure.
It’s because, of all the times I could have died or could’ve crashed and didn’t. Because, doctors have fought tooth and nail for me, my life and most importantly the quality of it. It’s because when I asked one of my favorite nurses “am I going to die?” when I was in adrenal failure (addisonian crisis) and she looked at me with the deepest of sorrows and said “not on my watch, not today!!” And to just recently having rapid responses way too often, but I knew I was going to be okay because my nurses who know me better than I know myself would never let anything happen to me, if it was up to them. Watching them care SO much, try so hard, taught me…. from that day on?

I learned, I realized that, that is what I want to do. I want to look deep into scared faces and tell them it’s okay. I want to hug happy families and I want to squeeze sad ones. I want to share the burning love I have for something more than myself.
Because of doctors and nurses and modern medicine, I’m alive. Without that, I simply wouldn’t be. And, I truly want to be the future of that. In the last 5-1/2 years of being sick I have learned and I have witnessed with my own two eyes that the best way to find yourself is to lose yourself in the service of others. The amazing people at Connecticut Children’s Medical Center show me everyday that your greatness is NOT what you have, it’s what you GIVE.

Rhana.

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.

Self-love

 

I look at where I was in the two left pictures and it physically pains me to even simply look at them.
Those smiles you see? They were NOT genuine, I was absolutely miserable in my OWN SKIN!!!

How crazy is that?
Crazy to think I would cringe looking in the mirror. I would want to cry whenever anyone said to gather in for a group picture. I knew I couldn’t hide from life, as much as I really wanted to. I had to face the shocked look on people’s faces when they saw how much heavier I had gotten.
They thought I couldn’t tell. That I didn’t notice. Oh, I did. I noticed immediately.
I had to deal with people I’ve known my entire life snicker to each other as I rolled past. I had to deal with my own inner demons and I felt like I was a huge black cloud over my once sunshiny self. I wasn’t myself anymore and gaining weight from medications, inactivity from back surgeries and depression made everything just that much worse.
I never wanted to die but I didn’t want to feel like I did then, ever again. I was stuck in a deep, sad, dark hole with the pieces slowly falling in on me and crushing my chest, making me so out of breath.
Now, the two right pictures are recent. My smile is genuine and I have a sense of self love that I never thought I’d ever have.

I don’t cry when I look in the mirror anymore. I look in the mirror and I do my makeup and I do my hair, and I sing loudly to the songs that I love oh so much.
I jump in on group pictures now and I smile when I look at them. I don’t pick out every thing that I wish I could change about myself.
I don’t want life to pass me by, I want to jump right in on it and live it up, right along with everyone else. I don’t want to hide anymore.
The truth is, we all want to change something about ourselves.
But… I spent so much time trying to break off pieces of myself and form myself into a shape that I didn’t even recognize. Your whole life you’ll be too much or too little of something, for someone.
I can do lots of things, but being anything… but myself?
I.. just can’t do.
I am perfectly made up of flaws and I love me. I may be beautifully broken, but that’s okay. Everyone is broken, in someway or another.
I’ve learned that weight is not what makes me, me.
Although, I’m still learning to love the parts of myself that no one claps for.
I learned that I am SO many things, I love to write and read, I love my best friends with my whole soul, I like to think I am a sincere person, I love pictures and the beach, I could ride in the car with no destination for hours, I absolutely adore dogs and I will stop my car just to pet one, I love movies and I could shop all day, everyday, I sometimes snort when I laugh and most of the time I’m being sarcastic.
I am not my weight and I’m definitely not what I look like.
I love myself, not because of how I look… I AM happier with how I look but I most of all am happy with WHO I am. It’s taken me so long to love myself, and I definitely am not going to waste my life trying to convince you, to love me.
The difference between the pictures is not just weight. It is pure joy. It also, shows what depression does to you, it shows how much burden one small person can hold all at one time.
I am so happy I got out of that deep, sad, dark hole. I now feel the sun and wind on my face again, and my smiles aren’t forced and boy, let me tell you… it feels good. It feels so good.

There will always be someone who doesn’t see your worth, don’t let it be you.

Out of control.

People ask me how I stay positive all the time… I never know quite what to say to that statement.
First off, I am not positive all the time.

No one can be.

I especially have NOT been that positive this past week.

I have really struggled emotionally, as well as physically.

I recently found out that  I need another back surgery. This being the 4th in about 2 years time. (exactly 2 whole years in January 2016.)

This last week was spirit week and on Friday it was pep rally at my High School that I hardly go to anymore, and honestly… it was really hard to see all my friends post pictures and videos. They all were dressed up in our school colors, laughing, dancing and just having fun. It was all about the seniors and “was the best pep rally that there EVER was at my High School.”

I should have been there. Wearing black and gold.

Instead- I was at physical therapy and then I was talking with my surgeon about the extent of my next surgery.
And on Saturday, it was homecoming. Our last homecoming. I didn’t go because I couldn’t buy tickets because I am back on homebound tutoring, unfortunately.

And, it was also Halloween… Halloween has always been really hard for me, since I’ve had Transverse Myelitis for some reason. I did go to a party last year, but it just never is as much fun as it seems to be for everyone else. I got invited to a party but it was on the 2nd story of this guy I knows house and being carried is not my favorite. Being dependent on someone, anyone.. Isn’t my favorite.

It’s just hard sitting back watching my friends go through life like I wish I did.

My hope for this school year was to be able to make it a full year in school, and not need homebound tutoring. To just be a senior. Healthy as I can possibly be. To go to school and be tired from homework, to not feel like I was on the outside looking in, on everyone else. I hoped and I prayed for normalcy. This obviously did not happen. Not one bit. I’ve definitely let myself down. I know none of this is my fault, but I definitely expected more. I don’t really know how to word it.

What I’m getting at is… I do not feel positive and I do not feel strong right now. I feel defeated and oh, I feel tired. I’m 17 years old and I want to be doing what everyone else is doing.

I don’t want to be the sick “fragile” Alex Berube anymore.

Maybe the hardest part is watching my twin brother do all these things and have so much fun doing it. We used to do everything together. Always.

I love my life. I honestly do. But, I can’t help but feel sad and just confused. I know that people have it worse, I know. I see it everyday and I feel horribly for even complaining at all.

It’s like I miss something I never had. A life that wasn’t ever even my own. It’s like I have this “idea” of how my life should have or could have went.

When I was 3 years old I had an imaginary friend.
You’d imagine she would be the same age as I was.. She wasn’t.                                                                     She was a teenager.

For as long as I can remember I have always dreamed of being a teenager with a cute red car, driving to school, singing to music on the radio with my friends. I honestly thought for so long that my life would be like that. I thought I was just going to always be “normal.” I always fit in. I didn’t get stared at, and I just looked like all my friends.

Being different isn’t bad. Not at all. But, for me… I was so used to being regular. Average.

I was used to not sticking out like a sore thumb, I was just used to blending in.

I just am feeling defeated right now. I don’t want people to tell me what I should do, or how I should feel.

Yes, you see what I post but you don’t know how I feel. I am terrified and I can’t do this, but? I’m doin’ it anyway… somehow. I have no choice.

You have to get up every morning and smile because you’re alive. You are breathing and that is a gift. You just have to.

I’m writing this to show you all that I’m not perfect and I am not positive 24/7. I am a real person. A teenager. Teenagers lives are dramatic and hard as it is, but then you have me. Maybe I’m just throwing a pity party. And maybe… that’s okay.

I’m not going to act like I’m fine with just watching everyone’s lives go by me, while I talk to my doctors instead of being at a football game, because to be honest… it’s not okay! It’s wrong.

While I may feel like this right now… I know it always passes. I always feel better after I write. Always.

I will definitely be working on NOT comparing my life to everyone else’s.

Because we all have our problems. Everyone’s problems are the worst possible thing to them, it’s different for everyone. Everyone’s journeys are different. We all struggle, every single one of us do. I really can’t compare anymore. It will drive me crazy, it IS driving me crazy.

My life is different and I’m not like every other teenager, I know that. I just am not and I simply can’t be. And it’s okay, most of the time…

It’s okay because the times I do get to be a regular teenager, are so very cherished.

Some days are hard. They just are. Looking through my room and finding wound care products, dressings, leg braces, compression stockings, wheelchair parts, sliding boards, so many different medications, boxes full of catheters…

Things I wish I didn’t need, but I do. Even though it’s hard and unfair… It is what it is. Right?

I can’t change the fact that this is what my life is like. I need to let go of what I can’t change. It’s not helping me. And I’m working on that too.

I don’t have ANY control over my life. None at all. The only thing I can really control right now is how I react to things I cannot control.

Such AMAZING things have happened to me. This one bad thing isn’t and shouldn’t take away my happiness. And even though it’ll be hard not to feel sad and confused. I will try to be as happy as I can. But, if I want to cry and be sad, I will. Because that is okay and I’m going to be okay. Everything will be okay.

(This “feeling bad for myself.” Is over. This pity party is over. Starting right now. I wrote everything above yesterday! I found, I don’t even feel like this anymore. Sadness and pity go away. I need to remember that my sadness and hardships aren’t ME.

I am me when I am happy, laughing, planning and living. And when I am sad?
I just have to remember it passes. It always passes.
I am okay. I promise.) 

Sinking, then swimming.

One year ago, I was very depressed. Not for any specific reason. I just simply hated myself.

There is really no other way to put it. I have been “skinny” my entire life, and after my surgeries last year I gained a lot of weight. More than I’d like to admit. It was a combination of a lot of things (medication, eating, not being able to move well, fatigue..)

I felt disgusting, gross, fat, ugly and just completely sad. I didn’t want anyone to see me. All the things that I had loved, I absolutely hated doing. I didn’t want to see my friends, go outside, swimming, no where at all.
I wanted to sleep, eat and repeat. That’s all I wanted to do. My legs were swelling very badly, my compression stockings were too small so they caused deep tissue wounds behind my knees. (You could see my tendons.)

It wasn’t good. I wasn’t healthy. I was pale, swollen, uncomfortable, tired and miserable.
I can blame me being, depressed on lots of things, but I’m not going to. It wasn’t because of just one thing. It wasn’t because of me, being paralyzed. Not at all.

It straight up had to do with myself. I would look in the mirror and cry. I would wonder “where I went?”

Where did that happy girl go?

My spinal fusion, at that point had “ruined” my life. I couldn’t move well anymore, and most of my medications made me constantly starving.

I wasn’t depressed in the way of crying constantly, not talking to anyone kind of way. It was like I was drowning and no one could help me, no one saw me. I was alone and I couldn’t see which way was up. But I knew I could swim but I was too weak to move.
I was never suicidal and I wasn’t alone. I had hundreds of people to talk to, but I felt like maybe I was just tired, or I was being over dramatic.

It’s hard to describe how I felt then, it’s not like how everyone describes depression to be. I was never clinically diagnosed, I never saw a therapist. I wasn’t constantly crying, or in my bed, I actually didn’t really cry, ever. It wasn’t like the commercials. I just simply hated myself.
But, one day I woke up and decided it was time to breathe. I realized everything is a gift, and so am I. I realized, I am not defined by my weight or how I look. I realized I could’ve been dancing all along. I just had to get up and slowly but surely love myself again.
I look back at a year ago, and I’m proud of myself. I recovered all by myself. I never took any medication, I did it. “I was heart broken, scared, I was worried, I felt weak, and I had no idea how I was ever going to come up with the strength. But I just closed my eyes, and took a blind leap. I knew I had to get out of there.”
Lots of people saw me as a perfect, positive, “role model” but I wasn’t and I’m not. Although I’m not depressed anymore, I’m a real person who gets sad and afraid. But it’s not constant anymore.
Now I laugh, I laugh for real. My family tells me my light in my eyes are back again. My eyes twinkle and I smile and I fall back laughing. I look up at the sky and thank God I’m alive. I’ve come out of a lot of darkness.

But, you need to go through some dark times to see the light. And that’s exactly what this last year has taught me.
I found hope. I got up and started eating healthy, I started hanging out with my friends, I go outside as often as possible, and I enjoy life again.
I wouldn’t say I gave up, I just was a little down for a bit but I got through it. I’m not broken. I did it, And so can you. Little by little, day by day, I saw the sunshine, I loved Monday mornings because no one else does, I hugged my brothers tighter and I loved myself and everyone else deeper. One day at a time, I found myself again. And I can truly say I missed her.

I might not be able to change the entire world, but I can change the entire world in me. I realized worrying, won’t stop the bad stuff from happening it just stops you from enjoying the good. And let me tell you, there is so much good.

 The left pictures are last summer, and the pictures on the right are now, 2015.

I’m not broken.

And this is me. The real me. The person not everyone sees.

I sometimes go to sleep way too late. My favorite food is sushi and pizza and I love my 3 brothers with all my heart.

My dog is my favorite and I love the sky.

I want to be a Child Life Specialist and I love kids.

In some aspects I’m just as I always was as a little girl.

My favorite color is purple but sometimes I like blue more.

I live for Sunday morning breakfast and singing Taylor Swift in the car with my brothers.

I love to dance, even if no one else but me can hear the music.

I don’t claim to eat only kale and that I work out 24/7.

I’ll eat french fries from McDonald’s because you only really live once.

I’ll eat chips and cookies and sometimes I’d rather sleep than workout.

I used to be the shortest in my class but I’m 5’6 now.

I love donuts a whole lot and I’d eat them everyday if they weren’t horrible for you.

I have scars because I have a history.

And I sometimes talk too loud..

These are the things that I don’t think anyone remembers about me. I’m not a wheelchair. I’m not a disease. I’m not the 24 screws in my spine or the rods throughout my whole back. I’m not that “girl in a wheelchair”

I’m me. Alex. The 17 year old girl with a whole lot of baggage. I’m also pretty weird and geeky.

My whole life I’ve wanted people to see me. Not just glance at me.

Looking at me; you see a wheelchair. And I get it, but I’m so much more than that.

My wheelchair is my legs. It’s how I get around. Plain and simple. A chair with wheels.

Yeah, I get tired faster, and I have more pains than an average teenage girl but that’s really all that it is.

Don’t look at me like I’m broken. I’m actually more together than I’ve ever been.

I’m here to show you that against all odds that flowers grow in hell.

I’m more than what you see. I’m all my dreams and everything I aspire to be. I’m Alex. My name isn’t “that girl in the wheelchair” it’s Alex. Call me Alex.

  

You can’t control the climb.

Your whole life you want control. You want things to go your way. Sometimes they do, and sometimes (most times) they don’t. It’s taken me my entire life to realize that. To realize, I can’t control everything. I can’t choose where life brings me. You can’t either. Life is 10% of what happens to you and 90% of how you react to it. Yes, life is hard, scary and rocky and just goes plain wrong sometimes. 

But NOTHING ever goes as planned. You can’t control the way life goes for you. You can’t control how long you’re going to live. 

You never know. I don’t know, and you don’t. 

So If you sit in your bed and feel sorry for yourself, for your situation, what is that going to do? Is it going to help? It’s just going to make it worse. It’s gonna hurt way more each day, that you sit inside and think about how bad life is. You’ll just be wasting your life away. Your life will pass by you. You can’t get it back. If you believe life is horrible then it will be. As I said, you never know when your last breath is. You never know where life will bring you.

Life is absolutely beautiful. You just have to open your eyes. You have to look up at the sky sometimes and just take a deep breath. How can you look at a light blue sky, filled with puffy soft looking clouds and not feel like everything’s going to be alright? Being around sick children in a hospital, lot of the time, I’ve learned things I can only even TRY to explain. I’ve learned how infectious laughter is. I’ve learned how each day is a gift, and should be lived that way. Go on walks with no destination, bring water to a homeless man on a warm afternoon, dance to really loud music and sing even if you’re alone. Just do anything that makes you feel alive. “I will love. More. So much love that no one will have any idea what to do with me. They will watch with a confused look and wonder why I give so much and do not ask for more in return. I will give it because giving is getting and there is nothing quite so important as emptying your heart every single day and leaving nothing undone, no declarations of it unsaid. 

I will not only stop and smell the flowers, I will plant them myself and watch them grow old with me. I will pull over and dance in every single rainfall, and I will make snow angels even when there is hardly any snow left for the wings.” 

That’s what I’ve learned from little kids. Sick children. Kids who have every right to be mean and bitter but are the total opposite. They do not have much control. But they can control how happy they are. And they choose to be as happy as they can, as much as they can.

I’ve learned that you get one life. Life is short. Not everyone’s life is the same. We are not given a good or bad life. We are given a life. One life. It’s up to us to make it good or bad. Life is confusing, hard and just completely cruel sometimes and you can choose to let every little hard thing knock you down or you can choose to let these things help you grow. 

The thing that has screwed me up for years is the idea of what my life should or could be like. I’d lie in bed and wonder how’d I be, who I’d be, if I never got sick, never became paralyzed. I would wonder who my friends would be, what I’d like to do, would I love the sky as much as I do now? Would I dance like no one was watching? Or would I be like every other teenager: confused, trying to figure myself out? Who would I be? I always would wonder.. I would even dream about my life. An easy, regular, normal life. A life where I had control. 

Then I stopped, I took a second to sit back and realize, I don’t have to be doing what everyone else is doing. I can NOT change that I’m paralyzed. There is no point in focusing on what could’ve been. My life is how it is. I’m in a wheelchair. I’m not like every other 17 year old. I’m not confused, I found out who I was 3 years ago. My life isn’t easy, or regular and I have absolute no control over what happens day to day. But I can control the way I react to it. I’m me. Alex. I love the sky, and I love dogs, I love music and books, I love dancing in the kitchen with my brothers, I love hanging out with my mom, I love my best friends with my whole heart, I go visit my grandparents every chance I get. I laugh, and I mean, truly laugh. I like getting good grades. 

And I’m not “normal” but really.. Who is? 

When you’ve seen death up close and personal, you get so much closer and in love with life. I don’t know how to explain it other than, life’s what you make it and it’s a crazy ride with lots of bumps and bruises but one thing is for sure. The view sure is great.   

 

It’s not over.

Almost 3 years ago a girl that I’ve known all my life said to me, “you know… you will never drive. You can’t do anything really. That must really suck to think of, huh?”
At the time I was brand new to being in a wheelchair. I knew she was wrong, but I just didn’t say anything. I just looked at her until she realized what she said had hurt me.
Little does she know how big of a fire she lit in my heart.
She has no idea what I’ve done since that day. I have exceeded all expectations. Even my own.
I have lived a much more full life in a wheelchair then I ever did walking.
In the last 3 years I’ve done multiple 5ks, one being a run or dye, I’ve went swimming in 15 feet water, I’ve lied on a beach, went down slides at the park, went on the swings, have been on hikes, I’m learning to drive very soon, 2 weeks ago. I went zip lining, I have been on TV, on the radio, swam with dolphins, I have danced more passionately than ever, I have laughed so hard and have loved so deep.
And through this all, my mind has always come back to the girl telling me “I can’t do anything.”
Something she has completely forgot she said, is drilled in my mind and motivates me every single day to GET UP and get pushing.
I thought I couldn’t go zip lining. That it would be too hard. It was difficult, but that didn’t matter the second I let go and went with no help, by myself, free.. Free, something I haven’t felt in years. The feeling of being free is an emotion, I can’t quite explain. It was a feeling that caused a huge lump in my throat, and happy tears. I went and did something that I thought was completely out of question for me. I am the first person in a wheelchair to ever zip line in Oahu Hawaii.
I love when people underestimate me, seeing the looks on there faces after they see what I can really do is priceless.
I can choose to let Transverse Myelitis define me, confine me, outshine me, OR refine me.
I can also choose to move on from my struggles and leave them behind me. I won’t forget my past, ever BUT I will GROW from it.
Next I’m planning on going either bungee jumping, sky diving or even rock climbing. I plan on living my life the fullest I can possible, despite ANY setbacks. I promise you, at the end of my life not one person will say I missed out on anything. Ever.
Without my Make A Wish trip I would’ve never of gotten the opportunity to go to the most beautiful place on earth, Hawaii. I wouldn’t have swam with dolphins, or went zip lining. How do you thank someone for that? For helping me more than anyone else could have.
Through out my Make A Wish journey I have grown so much as a person in just a few short months. I had been in a rut for a few months, I was in pain everyday and I didn’t have much motivation, I still did what I had to do and laughed often but it wasn’t anything like I am now. Even though I am in pain everyday, I learned I can push through it. I can do it. I have so much motivation now. I have almost all A’s in school, I just want to do everything I have ever wanted to do now. I learned that I 100% want to help other people. I want to help other people feel the joy I do when I do things I never thought I could’ve even dreamed of.
My trip may be “over” but it’s not really. My journey is only just starting. I never really thought of the future. I was scared to. I didn’t know what would happen day to day. Now I’m so excited for my life to begin. I’m so excited to have more laughs, have more adventures, to drive, to go to college, to have a beautiful house one day.. To just live and be so overwhelmingly happy. Even though I still don’t know what is going to happen tomorrow, I can still live for today. Because everyday that I am alive and well is a great day.

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.