Dear Transverse Myelitis

By Alex B., patient at Connecticut Children’s

Transverse Myelitis is a rare inflammatory disease causing injury to the spinal cord that can leave sufferers with permanent disabilities or paralysis. 17 year old Alex B. shares her journey with TM, what she’s learned and how it’s helped her discover who she is. To find out more about Transverse Myelitis or to follow Alex’s blog, please visit https://alexandherjourney.wordpress.com/.

02-03-15-1Before I had Transverse Myelitis… I never EVER heard of it, now I can’t EVER unhear it. It’s plastered in my brain forever.

An only 18 letter word ripped a 14 year old girl from her perfect life and threw her into a crazy one, ripped her apart, took away her legs, her freedom, her 8th grade school year, changed her life as she once knew it. Just an 18 letter word that dictated my future, dictated my hopes and dreams…

An 18 letter word has changed thousands of people.

I don’t want anyone to feel the pain I’ve felt, the pain my family has felt… I don’t want anyone to know how it feels to not be able to walk, to look at your legs and they don’t even feel like your own and they just don’t work. No matter how hard you try, they just don’t.

This 18 letter word has changed my lifestyle, my abilities, who I talk to, who I love, who I trust, how I think, how I feel and who I am.

This disease has made me become who I always have wanted to be, but never knew how to become.

I didn’t know what I wanted to do with my life, I didn’t know how I was going to help people but I knew I wanted to, I didn’t know how I was going to change people’s thoughts but I knew I had to.

I had so many thoughts and ideas but used to be SO AFRAID of what everyone thought.

I was afraid they’d not agree with my thoughts. I was afraid… so I didn’t ever speak up.

This 18 letter word taught me how to speak up, even if I was afraid, even if everyone laughed, even if everyone didn’t agree with my thoughts…

Transverse Myelitis taught me that even if you’re scared, do it anyway. You’ll regret not doing it and you may never have another chance.

This 18 letter word has made me KNOW I want to work in the health field, with kids.

Now I know that I have a voice and I never knew that.

This stupid 18 letter word isn’t who I am, or what I am.

It’s a tiny part of me, this 18 letter word has made me become me, and even though I hate TM with a burning passion…

I have to thank it for teaching me so much, for showing me- my thoughts matter, showing me to live each day as if I’d never have another, showing me what’s important, teaching me it doesn’t matter what everyone thinks, it only matters what YOU think of yourself, and if you like yourself it doesn’t matter.

So…….Dear Transverse Myelitis,

Thank you. Without you, I wouldn’t know who I am. Thank you for the lessons, thank you for showing me that walking isn’t everything, thank you for showing me my real friends, thank you for making me become brave, thank you for giving me the people I’ve needed all along, thank you for keeping my life interesting, thank you for knocking me down but letting me get back up again, thank you for being so horrible..

Because you taught me that there is so much good in the bad, nasty and horrible…

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Dear Transverse Myelitis

By Alex B., patient at Connecticut Children’s

Transverse Myelitis is a rare inflammatory disease causing injury to the spinal cord that can leave sufferers with permanent disabilities or paralysis. 17 year old Alex B. shares her journey with TM, what she’s learned and how it’s helped her discover who she is. To find out more about Transverse Myelitis or to follow Alex’s blog, please visit https://alexandherjourney.wordpress.com/.

02-03-15-1Before I had Transverse Myelitis… I never EVER heard of it, now I can’t EVER unhear it. It’s plastered in my brain forever.

An only 18 letter word ripped a 14 year old girl from her perfect life and threw her into a crazy one, ripped her apart, took away her legs, her freedom, her 8th grade school year, changed her life as she once knew it. Just an 18 letter word that dictated my future, dictated my hopes and dreams…

An 18 letter word has changed thousands of people.

I don’t want anyone to feel the pain I’ve felt, the pain my family has felt… I don’t want anyone to know how it feels to not be able to walk, to look at your legs and they don’t even feel like your own and they just don’t work. No matter how hard you try, they just don’t.

This 18 letter word has changed my lifestyle, my abilities, who I talk to, who I love, who I trust, how I think, how I feel and who I am.

This disease has made me become who I always have wanted to be, but never knew how to become.

I didn’t know what I wanted to do with my life, I didn’t know how I was going to help people but I knew I wanted to, I didn’t know how I was going to change people’s thoughts but I knew I had to.

I had so many thoughts and ideas but used to be SO AFRAID of what everyone thought.

I was afraid they’d not agree with my thoughts. I was afraid… so I didn’t ever speak up.

This 18 letter word taught me how to speak up, even if I was afraid, even if everyone laughed, even if everyone didn’t agree with my thoughts…

Transverse Myelitis taught me that even if you’re scared, do it anyway. You’ll regret not doing it and you may never have another chance.

This 18 letter word has made me KNOW I want to work in the health field, with kids.

Now I know that I have a voice and I never knew that.

This stupid 18 letter word isn’t who I am, or what I am.

It’s a tiny part of me, this 18 letter word has made me become me, and even though I hate TM with a burning passion…

I have to thank it for teaching me so much, for showing me- my thoughts matter, showing me to live each day as if I’d never have another, showing me what’s important, teaching me it doesn’t matter what everyone thinks, it only matters what YOU think of yourself, and if you like yourself it doesn’t matter.

So…….Dear Transverse Myelitis,

Thank you. Without you, I wouldn’t know who I am. Thank you for the lessons, thank you for showing me that walking isn’t everything, thank you for showing me my real friends, thank you for making me become brave, thank you for giving me the people I’ve needed all along, thank you for keeping my life interesting, thank you for knocking me down but letting me get back up again, thank you for being so horrible..

Because you taught me that there is so much good in the bad, nasty and horrible…

Share This Post

Newsletter Sign-up
Want our latest Blog posts sent directly to your inbox once a month? Sign-up below.
* indicates required
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