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.. ❤

October 18th

One thing that used to frustrate us the most about our mother was her obsession and hang-up over dates.  I never quite understood why, for example, we were expected to behave a certain way on the anniversary of one’s death.  Don’t we miss the person the same that day as we did the day before?  As we will the day after?

However, October 18th is always a day that will always elicit a moment of somber reflection.

On this day 4 years ago, my sisters and I became wards of the state of North Carolina.  That crisp October morning, we were summoned to a meeting that consisted of our parents, grandparents, family friends, social workers, counselors, psychiatrists, and school principals.

We entered that room with fears, doubts, and heartbreak, sure…but we went as a single unit:

Hand-in-hand.

Three as one.

United by a lifetime of hurt and violent chaos, but also by a fervent hope that somehow always managed to sing its quiet song amidst the storms we weathered…

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October 18, 2012

But we left that meeting completely different people.

We were forced on yet another dark and winding path, but unlike the roads we had travelled in the past, this one split in three.  We were all forced to navigate alone- stumbling along scared and blind- with no hope of getting back to where we started and no promise of an end.

We would never again be the same…

Fear.

bipolar disorder.

manic crisis.

emergency.

i’m on my way.

daddy, are you in there?

daddy, please.

unrecognizable.

fear.

screaming.

wild eyes.

frothing mouth.

it’s a coin toss.

she’s pushed against wall.

pull him off.

back again.

he’s so strong.

fear.

nudity.

i’ll remove my hands.

violence.

out on the deck.

cool breeze.

hot breath.

penis against my back.

fear.

so loud.

where’s the dog?

fist fight.

neighbors scared.

quiet scheming.

police.

yes, we are safe.

lying through our teeth.

fear.

psychotic break.

smile and nod.

where is this coming from?

don’t take it to heart.

feel so shattered.

no sleep.

how many days has it been?

fear.

hushed whispering.

tiptoe.

crushing drugs.

spiking drinks.

laugh or you’ll cry.

share a blanket.

now he’s coming.

pretend you’re asleep.

fear.

sexual advances.

heart is racing.

vivid flashbacks.

PTSD.

not taking no for an answer.

daddy, please stop.

fear.

you don’t want to hurt her, daddy.

you don’t want to hurt me, daddy.

bruises.

run away.

no shoes.

hiding.

fear.

sobbing.

begging.

screaming.

please don’t leave me.

praying.

cursing.

is this really happening?

fear.

flashing lights.

police.

well-practiced lies

please see through us.

are we doing the right thing?

secret recordings.

so much unknown.

fear.

trapped.

no way out.

hopeless.

don’t touch her there.

don’t touch me there.

can’t breathe.

hold my hand.

white knuckles.

fear.

torn clothing.

haven’t showered in days.

mascara streaks.

scraped up knees.

red eyes.

trembling lips.

fear.

confusion.

pleading.

gotta reach him somehow.

it’s me, your daughter.

i love you, daddy.

bruises around my neck.

fear.

car rides.

alcohol.

trapped.

please don’t look.

don’t look away.

can we do this?

patient shows up.

no hiding now.

fear.

shattered glass.

my body, a shield.

please, daddy, stop.

don’t hurt him.

don’t hurt me.

please leave.

i don’t need your help.

fear.

911.

EMS.

strips down naked.

sir, please cooperate.

mom sent away.

daddy, i’m here.

daddy, i’ll stay with you.

daddy, please trust me.

fear.

raspy voice.

shake my hand.

talking in circles.

ambulance ride.

front seat.

monitoring his vitals.

god, can you hear me?

fear.

ER.

he pulls my hair.

grabs my arm.

just a rag doll.

stay calm.

steady voice.

talk to doctors.

fear.

 

(To be continued…)

One Small Step

Yesterday, on a sunny, clear-skied afternoon, a member of our Wolfpack family took a step that ended his life.  Joseph Alexander Banks, or “Joey,” trekked up to the tall balconies of Dabney Hall and fell nine stories to his ultimate demise.

Today I sat in a private memorial.  On a swing outside of Dabney, I looked to the roof, closed my eyes and said a prayer.  

For him and for everyone whose existence was ended so violently.  

For everyone who has looked or will look up to the rooftops wishing they, too, could take the leap.  

For everyone whose voice has been stolen, the stigma around mental illness binding them in silence.

For everyone who has fallen or will fall victim to the darkness.  

For everyone who slipped through the cracks, pushed aside until it was too late.

For everyone who envied the dead, feeling the wait for the end was far too long.

For everyone whose soul was so heavy, they could not feel the warm sun and cool breeze on their skin.

For everyone out there who feels they are past the point of saving — too far gone.

For a suffocating brokenness.  For a fallen word.

People like Joey are not as rare as some may like to believe.  They are all around us…in our classes, in our streets…perhaps even in the mirror…

The difference between Joey and I is one small step. 

One step from the top to the bottom.  

One step from life to death.

One breath.

One decision.

One final goodbye.

Just one small step.

One small step can end a life…but not all hope is lost.  One small step can save a life, too.  

A smile.  A conversation.  A kind heart.  An open mind.

Will you be that one small step for someone?  

Reach out.  Be a friend.  Love your neighbor.  Step outside of your comfort zone.  Stop the stigma.

Take the time to help someone take a step back from the ledge — I dare you. 

This Is Not How Life Is Supposed To Be

There are so many things I should be doing, places I should be exploring, and memories I should be making.  But instead I lie in bed, writhing in pain as hot, salty tears soak my pillow.  My body feels heavy, my chest feels hollow, my thoughts are all over the place, and my head feels like it might explode.  I am merely a shell of my normal self.  Most all of my “friends” no longer talk to me or even care to acknowledge I still exist.  This is NOT how life is supposed to be.  I can’t stand living like this.  I am a prisoner of my body and mind…on the outside looking in as my peers reach milestone after milestone, leaving me in the dust.  It’s hard not to become grossly depressed.  But I promise you, this will not be how my story ends.  I am so much more than my life circumstances, more than these illnesses and more than this pain.  I may not know what will come next, but I am still in charge of my life.  That shred of power, although small, gives me hope.  I am sick…I am hurting…I am exhausted– but this cannot be forever.  This, too, shall pass…