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.

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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.

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!!

 

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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