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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19 thoughts on “1,576,800+ minutes

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  1. Alex, you are the most AMAZING, STRONG, INSPIRATIONAL person I know & have ever met. Having been in the medical field for more than 20+ years..I have crossed paths with many people..you are so wise & see the good when faced with pain & obstacles. You bring me to tears as I read.You are beautiful inside & out & I love you!

  2. I’m coming up to my 2 years annerversiry in April and I know exactly what your going through,I’m only 12 but I miss my old life so much.I’ve met some amazing people but life’s just not the same anymore,so many things have changed I love reading your blog.your such a good writer and reading it is like reading my life, I’m glad you do write it because you give me so much inspiration x

  3. Thank you! I’ve dried my tears so I can write this reply. Your words touched me in a way that is hard to describe. With the exception of a few days, I’ve felt the way you do. But I could never have put it in to words the way you did. My heart breaks that this happened to you at such a young age. I had 57 years before TM entered my life 15 months ago. I felt ashamed for taking so much for granted and not appreciating everything I had. The list of “can no longer do” is very long. But I am working hard to have the “can do once again” list grow longer. Your parents should be very proud to have raised a young woman with such a positive outlook on life despite so much adversity.

  4. Alex I could say you are an inspiration, but you hear that anyway. What I can say is that you’re an amazing writer. Truly gifted and in great need of a publisher. I’d love to read your book. Your experience in many ways similar to Rhanas. I think she felt much like you did that first week. I wish you love, peace and most of all happiness. Thank you for writing your blog. I’ll never stop reading it.

  5. Alex, i am soooooo in awe of the way you are looking at the world now!! i do not know that any other person could be as strong & courageous as you are!! You are an inspiration to all!!!!

  6. Hi. Just read your post and just wanted to let you know what a ray of sunshine you are. Your post brightened my day. It amazes me how strong, courageous, positive people like you exist. Hoping to see more posts from you in the future 🙂 keep writing. xx

  7. You are the most courageous person I know. You are strong, smart, beautiful, inspirational, a superb writer…honey I could go on. I hope you know this! I want to hug you and kiss you and snuggle you. I want to take the pain away. I want to twirl you around in your chair and dance with you! I want to embarrass you…hey aunties are supposed to do that, I could take you to the mall and get some really cute guys attention then sing and break dance then you’d tell them you were taking me on my weekly outing so they would feel bad for you having a crazy auntie!!! Anyway I love you so much. You are my sunshine!

  8. Did I tell you how beautiful you are??? You are So beautiful to me can’t you see? Singing like alfalfa! !

  9. Like others, I had to wipe away the tears first. Your writing is intensely expressive, and at the same time incredibly beautiful. I have been absent from the internet for six months, yet thought of you with fondness every single day.Your presence in the world enriches my life beyond measure, as I know it does for countless others. Simply put, to know you is to love you. It is as inescapable as the brightness with which you shine. Thank you from the bottom of my heart. ❤ ❤ ❤

  10. a couple months ago I was scrolling through Instagram and I happened to come across your page. I’m a 16 year old from Ohio and I just wanted to let you know how much I look up to you in so many different ways. Youve gone through so much in your life yet you still have a positive outlook. you’re amazing Alex!! you’ve got people from all over the country rooting for you! 🙂

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