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.) image

Advertisements

11 thoughts on “Out of control.

  1. The strength you possess at your age amazes me… but this is because you have lived a life so much more than many. Don’t you get upset when people complain about simple stuff? Don’t you get upset when people complain about STUPID stuff? Your journey has allowed you to grow, to learn, to prioritize … more than most people double your age!!! Eric and I have been blessed to read and know you through your blog. Eric is now at Silver Lane and I teach at Goodwin. I shared one of your posting with my class recently… they were ticked about an assignment….. thank you for carrying on as the amazing young woman you are!! Isn’t is so true, you never know whatt the next year will bring?

  2. Alex, I have followed your story since your dad first posted about it on Facebook. I voted on the Vote for Alex page daily. I silently cheered for you every day. I still do. The strength and maturity that was forced upon you at an early age you have taken on with unimaginable courage. What you have been through in the past few years most people don’t endure in a lifetime. You are the epitome of brave, courageous, strong, and empowering. You encourage others who read your story to live life the best way they can, do it gracefully, and do it with a smile. I will continue to follow your journey, I will continue to cheer for you, and I will continue to pray for you but most of all I will continue every day to be as strong of a woman as you are and face the challenges with a smile. Being discouraged is normal. Feeling defeated is natural. Being a person like Alex… it’s just remarkable. Stay strong girl you got this.

  3. Alex,
    My son Jackson asked me the other day ” mom, why do bad things happen to good people? I said to him; life happens to everyone. He struggles with his dad ( my husband) having advanced stage melanoma. Every day is a gift I cannot imagine his 15 year old brain and heart trying to wrap around the fact that his father, his best friend may die. Akex, I know you have heard this a zillion times, but I must say it again….. You are just such an example of courage, strength, beauty, ..the list goes on. You are allowed to get mad, and be angry, and scream and ask” why me??? It’s okay. I will never ever say to you ” I know how how you feel” because I don’t! But I do know this. ….. your ability to wake up in the morning, and face another day is inspiring. You amaze me. I watch you, and pray for you always. I really do. Someday, this will all make sense. I promise you Until then….You are beautiful now GO BE 17!!! Love you Alex!

  4. Thank you for sharing some of the deepest emotions you have. You’re right it is hard, and it is ok to be sad and frustrated, but you are also right that it goes away and joy and happiness return. Dreaming and planning and hoping return and life moves forward and you do big things! You have a purpose and you are helping people see the world through a different lens. You are impacting people more than you know. And you are helping me as a mom of a paralyzed beautiful girl. Some day you will be a role model for her. Thank you for sharing, you are beautiful inside and out. I appreciate your open honesty.

  5. Alex, I just found your story and I applaud you for your positive attitude! I had transverse myletis in 2013 right after my mother passed. I’m able to walk but not well and experience severe leg pain. It’s a tough road but you made me smile, thank you for that!! Kelly

  6. Hi there Alex,
    I’m Alex aswell! 3 months ago, December 9th, 2015, Transverse Myelistis took me by my throat and wanted me to drown. Out with my boyfriend, having a great time, I stood up from the restaurant booth, and I felt a sudden pain in my back. It radiates into my arms, they went numb, I lost control, I couldn’t control them, then my legs went. I thought I was dying. I wish i could go back in time and run for just 10 seconds. Feel how cold water feels and feel how the wind on my skin feels. How it feels to be able to move your body the way it always did. I’m 18, I was an active girl who ate well, worked out, and had a goal of getting my personal trainer license when New Years hit. The illness that hit me had other plans. I know your struggle. I’m so sorry. I wish people understood. I know the feeling of helplessness. I know I did. I felt like all my dreams, all my goals have Been taken from me, and I barely turned 18 3 months prior? I felt cheated. For weeks I fell more and more into depression. Suffering from anorexia too, lack of
    Movement and control of my body made me sick to my stomach, and I wanted to scream because I felt myself going mad, unable to move, unable to do the things that soothes my soul. I wanted out. So bad. Fortunately, Someone or something heard my prayers. Maybe I just said enough is enough and that I wouldn’t be a victim
    To this devil of an illness. I tried to flex every part of my body all day every day. I tried to
    Move as much as I can. I pushed myself to grab things and stand even though I had fallen so many times and failed. Mid January i began to walk with a cane. My body began to respond. I felt alive. I felt like I was given another chance.. Right now, I’m still
    In constant pain of aching muscles and my legs burn from all the walking I try to do. My nerves in my legs twitch and jerk and it’s agonizing pain. My
    Left arm still hasn’t caught up with the program but I continue to believe and push myself. I’m so thankful I was given another chance, and in my darkest moments I go online and find people my age who suffer from the same ordeal and see the bravery and beauty like you, and I don’t feel so alone. I extend my hand out to you and wish you the best. I hope with everything in me that you recover more and more. I am in fear every day of my life, that this illness will
    Come and haunt me again. But people like you give me hope.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s