Why Not?

Muscle biopsy at age 8. Diagnosed with Muscular Dystrophy.

First wheelchair at 10. It was pink.

Back surgery at age 11, where two metal rods were wired, bolted and otherwise screwed to my spine. I was under for over ten hours, and can no longer bend my back. Lost ability to walk.

Kidney stones at age 16. Would not wish on anyone.

Diagnosed with Bipolar 2 disorder at 18.

PCOS at 19

Confirmed FSH MD via DNA test at 20

Possible heart attack at age 26. Admitted to ER with blood pressure of 160/135. Not sure how I didn’t explode.

Another ER visit for pain from a cyst in my hip. Overdosed on morphine, went unresponsive. Woke up talking about the catch rate of poke balls. Age 29.

While in the hospital at that time, my kidneys broke. Was on dialysis for two weeks.

June 23, 2016. Admitted for pneumonia. Stopped breathing. Now trache/vented. Developed pressure sores. Malnourished. In hospital close to six months.

May, 2017. Per my chart:

Discharge Date: 6/10/2017

Brief summary of your inpatient care: You were hospitalized on 5/25 for an elective IR procedure. You were admitted to the PCU for acute hematuria from a complicated procedure. You were admitted to the ICU the following day for suspected sepsis. You were placed on broad spectrum antibiotics for sepsis suspected new pneumonia. You were found to be fungemic and antifungal medications were started. PICC was removed and replaced a few days later when blood cultures cleared. Urology was consulted and CBI was started for hematuria. Infectious Disease and Nephrology were also consulted during your admission.

I used to steal chalk in high school. I have no idea why, I guess I’m a bit of a kleptomaniac. I kept it in my purse, because hey, you never know when someone might need chalk.

Then one day over the summer, I was at a class in Upward Bound, and there was no chalk in the room. I felt like a hero hahaha.

That was awesome enough, but then like two weeks later (it was a six week program), a student came to the room from somewhere else on campus to ask if I had any chalk because their room didn’t.

This is about the time I died, told through my mom’s point of view. I also posted it to reddit.

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“Rapid Response Team, room 612. Rapid Response Team, room 612,” the overhead speaker crackled. The nurses pushed her into the hallway as a gaggle of doctors and nurses burst around the corner, rushing into the room. They shut the door. Tears in her eyes, she stared through the window at the figure lying on the bed, connected to the ventilator. She clenched her fists in frustrated rage. She warned them! Why hadn’t they listened?!

When the nurses came in to clean and redress her daughter’s bed sores, she warned them that they had to move her slowly to avoid causing her pain. They dismissed her words, quickly flipping the girl onto her side. The ventilator hissed as she looked up to her mom. “Mama? I can’t breathe…” Seconds later, her eyes fluttered closed.

In their haste, they had done worse than cause the girl pain – by moving her too quickly, they dislodged a mucus plug. She watched helplessly as her daughter coded, despite the team’s best efforts. Thirty seconds. Sixty. Ninety. Two minutes. Three. The team shook their heads. Anguished tears spilled down her cheeks.

Suddenly a young man skidded around the corner. She recognized him as a PA who had taken care of her daughter during a previous hospital stay. He exploded into the room, pushing team members aside and continued their abandoned attempts to resuscitate the girl. The door remained open.

Four minutes. Four and a half. Five.

She could see sweat beading on his forehead as he pumped her daughter’s chest.

Six minutes. Six and a half.

Weren’t the chances of success ridiculously slim? Despair clouded her vision. She was going to lose her only child because of a nurse’s impatient ignorance.

Seven minutes. Then, a breath. Then another. Her eyes wide, she held hers.

The PA straightened triumphantly as the girl shuddered, her breathing erratic at first. He stroked her hair, speaking soft nonsense words of comfort as the ventilator worked to smooth her inhalations. Then her eyes opened. And the girl spoke.

“What the fuck just happened?”

I wrote this over a decade ago, and while I’ve graduated school and no longer drive, it’s still relevant.

I was born with Muscular Dystrophy, a disease that slowly wastes away the muscles of the body. I fight every day for my strength, and my sanity. And it is this battle that shapes my destiny.

I've been thinking lately. I finally decided what I want to be when I grow up. I want to be an inspiration.

How does one become an inspiration? The answer is quite simple. Never give up. Stand your ground. I think that's why I like that song so much.

See, Ed, one of my professors, wrote an article about me in the paper that he is the editor of. It was all about how, yes, I'm in the chair, but there's so many things that I've done that are simply amazing for a person like me.

I drive a car. I go to school, and get decent grades. I have dreams that are attainable.

I want to be a writer. I’m in school now, majoring in Journalism, and I’ve found that I love it more than creative writing.

I celebrate family functions and holidays. I go camping with my parents. I fish with my grandfather and uncles. I frequent amusements parks, and absolutely love roller coasters. I hang out with my friends on a regular basis, and laugh at the people who stare because I’m different.

To me, this is what I'm supposed to do. But I realized today that these so-called normal things aren't things that many people in my situation would do. Almost everyone I meet, after telling them about myself, they tell me that if it were them, they would have given up long ago.

That's not an option. It never was.

I have come a long way from the child I once was. When my doctor told me I was to be confined to the wheel-chair, he also told me that “It’s not the worst thing in the world.” In fact, being in the chair may just be the best thing that ever happened to me. It gave me a fresh new look on the world. It opened my mind. It opened my heart.

In some ways, I believe in vakakari: an ancient Irish war cry that means "I would rather die than surrender."

But dying is too easy. And I never do things the easy way. I think I like the other meaning better: "I refuse to give up."

Someone I know once nicknamed themselves the “Angel of Hope.” I don’t know if they still call themselves that, but to me it feels like I’ve taken over that role. I’ve always known that I was created this way for a reason. And now, entering my 20th year on this Earth, I’m beginning to figure out what it is.

So what if I can't lift more than five pounds without struggling. So what if I have a hard time getting things up off the floor. So what if I can't reach things that are on high shelves. Most of my friends have that problem too, and they stand on two legs. So what if I need help getting out of bed in the morning, and getting dressed. So what if I have to take the elevator, rather than the stairs. I have something that so-called "normal" people have given up on long ago. I have hope.

I was watching some home videos

Of different things.

My third birthday party, and fourth,

Innocently playing on my swing.

Then came my Halloween parade

When I was about eight

I dressed up as an owl, dreaming,

Knowing that I couldn't wait.

Bouncing around at my Communion party,

The Twist, and the YMCA.

Dancing on two legs,

God, I miss those days.

Because now, I'm a freak.

At least, that's what people think.

Being in a wheelchair is fun.

(At least, that's what I tell them.)

Granted, I was only ten,

Had not yet begun to live,

But who would have known that my life

Would take as soon as it'd give?

Now I admit, I am lonely

Not many would be my friends.

Although there are a select few,

Our relationships will not end.

So I guess these tapes will go

Where they belong: on the shelf.

But yet, the memories remain,

I wrote this when I was in high school, about my best friend.

My feelings go unsaid,

As the days go by.

This love I feel is true,

But I can't live this lie.

I know that we are friends,

But I've something to say:

I think about you all the time

I just can't live this way.

I've tried to tell you how I feel,

But I clam up inside.

I tell myself this is so real,

This love I feel inside.

So forgive me for not telling you

Just what I'm thinking of.

This is all I wanna do:

Give you all my love.

These words aloud I'll never say

But they're all that I think of;

And I'll be thinking every day

Song by Linkin Park

Story by Viari

Depression. Since school started, it’s been all I felt. But the thing is… I don’t know why. I started cutting, finding release, hell, relief in the feeling of the blade slicing through my skin. With my razor, I know I can feel something other than depression, or worse, numbness… even if it is pain.

My friends know. They think they can help… but they can’t. No one can. I see the questions in their eyes as they talk to me, I can see their eyes wandering to the scars I haven’t hidden… and the scars I have. They know they’re there, and when our eyes meet again, they’re silently screaming “Why?” But I won’t break; I won’t let them know how much I hurt inside. I won’t bring them down with me. They’re too good for that… too good for me.

I know I shouldn’t do this. I shouldn’t hold in my hurt, my pain, my sadness. I should find some comfort other than the blessed blade. But after days like today, there’s no hope. People don’t realize that I’m not as hardened as I play to be. The whispers, the stares, I know what they say about me behind my back. Loner, outcast… freak. They don’t know how much their words hurt, more than any incision I ever made.

Memories consume

Like opening the wound

I'm picking me apart again

You all assume

I'm safer in my room

Unless I try to start again

My friends say I think too much. They say if I just let go of things and move on that I wouldn’t be this way. They could be right.

I don't want to be the one

Who battles always choose

Cuz inside I realize

That I'm the one confused

I don't know what's worth fighting for

Or why I have to scream

I don't know why I instigate

And say what I don't mean

I don't know how I got this way

I know it's not alright

So I'm breaking the habit

I'm breaking the habit tonight

I get myself in situations that are way over my head. Arguments with my parents… saying things that I know hurt them. Screaming, yelling “I’m sorry I’m such a bad kid! Maybe it would be better if I wasn’t here!” Because of this, they search my room, finding all my blades… except one. After school, that lone blade will be my salvation.

I won’t kill myself. Unlike most depressed people, I’m not suicidal. No, I won’t give the world that satisfaction. I won’t let them know they get to me.

Cultured my cure

I tightly lock the door

I try to catch my breath again

I hurt much more

Than anytime before

I have no options left again

Maybe my friends are right… I do have a pretty fucked-up philosophy on life. Maybe this one time, I won’t cut. Maybe… just maybe…

I don’t want to be the one

Who battles always choose

Cuz inside I realize

That I'm the one confused

I don't know what's worth fighting for

Or why I have to scream

I don't know why I instigate

And say what I don't mean

I don't know how I got this way

I'll never be alright

So, I'm breaking the habit

I'm breaking the habit tonight

The phone rings, and I can hear them downstairs, yelling. Bottles fall, glass breaks. I look at my mirror, seeing myself inside, seeing what the world sees: an outcast, a loner… a freak. It’s too much, I can’t take it. I punched my mirror, tears flowing freely down my cheeks, and grab my razor. Steeling myself, I slowly, deliberately slide the blade along my inner forearm, between my wrist and my elbow. The pain is rapturous. I can feel the blood surfacing, spreading over my skin. This cut’s a little deeper than I normally go, but that’s okay. The pain is worth it. I never let it bleed too much… never enough to lose too much blood… but enough to scar.

I'll paint it on the walls

Cuz I'm the one that falls

I'll never fight again

And this is how it ends

I don't know what's worth fighting for

Or why I have to scream

But now I have some clarity

To show you what I mean

I don't know how I got this way

I'll never be alright

So, I'm breaking the habit

I'm breaking the habit

I'm breaking the habit tonight

...since I posted anything. I’m sorry for that but holy shit has it been an eventful two years.

Last June (2016) I was home and my Nana came to visit. She made me dinner and said that I didn’t look very well. Did I want to go to the ER? I said yea, and that’s the last thing I remember until I woke up two days later as a nurse was washing me.

Apparently I had sever walking pneumonia (which is funny cause I can’t walk lol) and became unresponsive after they admitted me. So they shoved tubes down my throat to help me breathe. That lasted another two days til I became unresponsive again, and they cut a hole in my throat and put a tracheotomy in me. Now I had a ventilator breathing for me because my lungs were so weak.

I spent a few weeks in ICU until they wanted to move me to a long term advanced care (LTAC). I had a choice of going to a local one or one an hour away. I chose the local one so I could be close to my family. It was the first of many things that went wrong. While I was there, I developed pressure sores that soon became infected. One was so big and deep that Donnie could have put his fist in it. So after a month, they moved me to the LTAC that was an hour away. I’m not going into details because frankly I don’t remember much and what I do remember is painful to think about.

I was in that place for over two months while they took care of my wounds and my trache. At first I was so drugged up that I had extremely vivid hallucinations (which is a topic for another entry), and I couldn’t tell what was real and what wasn’t.

Finally they sent me home with the promise of nurses that would take care of me. I was home a week then had a mucus plug and panic attack which sent me back to the hospital. I was there for about two weeks.

Sometimes the top panel is said in the same mind, but even when it comes from another person…it makes it hard to speak up. Especially if one comes from a good life, and doesn’t have “anything to be depressed about.”