Nobody Wins When Everyone’s Losing

You know those songs that just capture your attention, reach into the depths of your soul & shake you to your core?  Yes, that was a very dramatic introduction– I’m aware. 😉 But this particular song, “Not Meant To Be” by Theory Of A Deadman is definitely one of those songs for Keri, Bre & I. When everything was in a chaotic spiral & we would find ourselves so far in Borderland we didn’t know that we’d ever again see the light, there wasn’t much that could help us (or, anyone caught in the path of the storm). But this song– one step forward, two steps back– every single word is/was SO relatable & relevant to our situation. And I’m not sure if it’s that it empowered us or simply validated our feelings, but somehow, singing it always made it easier to breathe.

It’s never enough to say I’m sorry
It’s never enough to say I care
But I’m caught between what you wanted from me
And knowing that if I give that to you
I might just disappear

Nobody wins when everyone’s losing…

[Chorus:]
It’s like one step forward and two steps back
No matter what I do, you’re always mad
And I, I can’t change your mind
I know it’s like trying to turn around on a one-way street
I can’t give you what you want
And it’s killing me
And I, I’m starting to see
Maybe we’re not meant to be

It’s never enough to say I love you
No, it’s never enough to say I try
It’s hard to believe
That’s theres no way out for you and me
And it seems to be the story of our lives

Nobody wins when everyone’s losing…

[Chorus]

There’s still time to turn this around
You could be building this up instead of tearing it down
But I keep thinking
Maybe it’s too late

[Chorus]

It’s like one step forward and two steps back
No matter what I do, you’re always mad
And I, baby I’m sorry to see
Maybe we’re not meant to be…

It’s Not Their Journey To Make Sense Of

“Not everyone will understand your journey. That’s fine. It’s not their journey to make sense of. It’s yours.”

My life went to hell in August of 2012. It had been headed that way for years and years, but August 9th was the day that all was officially lost, with no hope of ever even returning to baseline…

And on that spiraling path to hell, I not only lost my family, my home, my belongings, many of my friends– I also lost my health. At a time in life where most were at prom, doing college tours, vacationing with family and friends, I became sicker and sicker with mysterious symptoms until I was completely disabled.

As time went on, I tried a multitude of medications, procedures, therapies and diets just to be met with more sickness, pain and fear.

I grieve who and what I once was. I used to be healthier and full of energy, able to eat whatever I wanted and do whatever I wanted. I was good in school. I volunteered. I dreamed big dreams and made strides toward making those dreams a reality. Despite a life of turmoil and inconsistency at home, I was able to push through and keep going. My friends remember me that way.

But now this body of mine is limited and thus my life is limited…

Every time life hands me a new limitation, I embark on the path of adapting to a new reality. Accepting new limitations throughout these years has been difficult for me and seems to be even more difficult for my parents.

I suppose I should not have been surprised that my peers and friends struggled with them too…

As I grew sicker, my friends became distant, one by one, until they eventually fell off the map altogether.

Their disappearance was due largely to my inability to keep up– physically, of course…but often mentally and emotionally, too, as life circumstances and the 24/7 nature of chronic illness wore me out so intensely…

I would often find myself feeling sad, guilty, even angry…and always very, very lonely.

Where were all those who I helped in their time of need? Those I had stayed up all night with, holding them as they cried? Those whose aid I rushed to at 3am, regardless of what was going on in my own life? Those who I defended, fought for, even lied for? Those whose children I cared for as my own while they tried to piece their own lives together?

It hurt for my friends to leave me and not support me through some of my darkest days, but I have slowly come to realize it’s really not about my limits but about their own.

We whose worlds are colored by chronic illness and disability are physically limited, but others are limited in their ability to understand and empathize.

At this point, the majority know I struggle with my health…my feeding tube and wheelchair use make it pretty obvious at times. However, when I am around others, I wear a mask I’ve perfected over the years: a smile, a laugh, a “pretty good, thanks, how are you?” I do my very best to hide the truth about the debilitating pain and discomfort I constantly endure. I do this for their sake, sure– but also because I have an EXTREMELY difficult time admitting things are not okay or that I need help (even to doctors and therapists). I am perpetually optimistic, at least outwardly. All of this to say, it is no surprise most have no idea the kind of impact chronic illness has on every part of my life and daily functioning.

Everyone has battles and struggles in this life, but for most, their difficulties do not reside in their bodies. They experience sickness and physical pain, sure– but not in the way we do. Pain is not their constant companion, always lurking in their shadow. They are unable to truly comprehend the realities of a life battling your own body, and therefore they easily dismiss it as an exaggeration, nuisance or simple idiosyncrasy.

I cannot help but feel annoyed, isolated or hurt by the gross lack of understanding at times…I am only human. But I have realized that it is not about me. It’s taken a long time to accept this, and many days I still struggle to…but I am finding strength in my fragility and lessons amidst my pain.

“Not everyone will understand your journey. That’s fine. It’s not their journey to make sense of. It’s yours.”

Keep fighting the good fight, guys.. ❤

Mast Cells: 3 — Cassidy: 0

I have been SO sick these past few days. My mast cells are kicking my butt big time, & I’ve had to use three EpiPens in the past 19 hours alone. I really should stop complaining & appreciate that life isn’t like this every day…but the pain & nausea is crippling & all I can think about is how I want it all to just end…

Catch-22

Well, I am supposed to take an Anatomy & Physiology exam in 4 hours & 9 minutes…but that’s not happening. 😦

My health is much more stable than it has been in years past: I really have no right to complain. But things have declined since last semester & I feel so lousy 24/7 with dizziness, vertigo, nausea, migraines, joint pain, abdominal pain & distention, sharp pins & needles in my fingers, chest tightness, ulceration & bleeding in/around my stoma, feeding tube troubles, anaphylaxis, temperature regulation issues, bladder inflammation, UTIs, blood pooling, weakness, etc. etc. etc.

Academically, I am drowning. Studying for this test, I’ve watched videos, made flashcards, drawn pictures, constructed diagrams, read the textbook, took online quizzes– but NOTHING is sticking. My fatigue has been crippling & my brain fog has been worse than ever before. I am SO burnt out from fighting so hard to accomplish tasks most my age don’t even have to think twice about.

And the most frustrating part of all?

Being sick, taking a billion medications & supplements, doctors appointments, procedures– all keep me from giving 100% in school.

And then, on the other hand…

Being in school, going to classes, doing homework, studying, going to necessary meetings– all keep me from giving 100% to taking care of my health.

It is definitely a catch-22!

Anyway, tonight I made some big decisions about this semester & about my academic endeavors as a whole. I have a meeting with my advisor tomorrow, so we shall see. I am hoping to leave that meeting with a plan & some hope for the future…

IMG_8731
studying the cardiovascular system

Crying Is Not Weakness

It’s been exactly 5 years since I wrote this piece & posted it on my old blog. It’s crazy how this feels like ages ago & just yesterday all at the same time. I’m not quite where I want to be yet…but I have truly come so far.. 🙂

“A few weeks ago, I went to the movies with my friends to see Extremely Loud and Incredibly Close. Everyone around me was bawling her eyes out, yet sitting there watching this heartbreaking movie, I could not shed a single tear. I, too, felt sad…I wanted to cry…but regardless of how my heart ached and my thoughts raced for the little boy, my face remained dry and stoic.
Too many times when things were crazy at my house and the tears would fall down my cheeks, my mom would scoff and say, “I’ll give you something to cry about,” or push me aside with a, “Why are YOU crying, you little bitch? I’M the victim!” I grew up afraid to cry. And not only was I fearful, but resentful. I was angry at the woman screaming in my face- I didn’t want to give her the satisfaction of seeing me break down. I didn’t wanna let her win. I didn’t wanna show weakness. I would do everything I could to act like her actions didn’t bother me. But too many “it doesn’t hurt”s, and “it’s all good”s can really affect a person…

This may sound a little crazy, but one of my most treasured memories is the night I ran away, one of God’s angels (let’s call her R) and I were having a heart-to-heart on the bench in her meditation circle. I had just hung up with my dad…who was yelling and crying and who basically told me life as I know it was about to be over. And of all of the beautiful, wonderful, comforting, inspirational things R said to me that weekend, one that sticks out most in my mind was when she put her hand on my knee that cold night on the bench and said, “Please let yourself cry.”

Please let yourself cry? Please let yourself cry! It finally hit me. I am only human! I am allowed to have emotions…I am allowed to cry. And so I did. I sobbed and sobbed into her shoulder until it was so dark outside we couldn’t see a foot in front of us. And you know what? As broken as my heart was and as embarrassing as it was to have trails of mascara running down my splotchy face, it felt good. It felt really good.

Do you, too, have trouble allowing yourself to cry? Has “crying is weakness” been drilled into your head one time too many? Well, guess what…whoever told you that was wrong. Crying is a sign of humanity, and regardless of what you are told or how you are treated, you have a right to express your feelings just as any other human would. Honest tears cleanse your heart and soul and relieve tension. And crying is certainly not a sign of weakness. Someone really special to me once explained it like this: Nature gave us two ways of showing our emotions, laughter and crying. Crying is not a sign of weakness just as laughter is not a sign of strength.

So, grab the tissue box and let yourself break down once and while…you’re allowed… ❤

With Love,
xLiveOutLoudx”

(February 2012)