Ramblings of A Prisoner of Flesh

Screen Shot 2017-12-11 at 4.18.51 PMChronic illness is the forced embodiment of an unsolicited reality

It is detecting the ever-changing direction of the wind,

Nimble focus to which way it screams the loudest

A constant game of tug-of-war

Paralyzed by pain- aching, burning, stabbing

Awake in constant slumber, a fog unyielding

Racing thoughts get lost on the way to the tongue

A prisoner of failing flesh

Always too much, too little

Never just enough…

Once aiming for superlatives, now grounded in indistinction

Unclenching hyper-vigilance and embracing helpless dependency

“Sustainable”, instead of “healthy”, as the label of betterment

Trading existing for thriving

Surviving for living

Understanding for tolerance, and then only sometimes

Living in everyone’s expectation that if they try; at access, at

niceness, then that trying, for us, should be enough

Slivers of doubt become trusted tools

Can I do this? Will they be there? What will be left of me?

Be prepared for anything.

Be prepared for anything…


It’s Only Been 3 Days…

I am honestly terrified for this semester.  In so many ways, this is my last chance to turn things around.  But I am so, so very worn– physically, mentally & emotionally.  Simply getting out of bed or responding to text messages seems too hard some days, nevermind successfully functioning as a student.  I know that worrying fixes nothing, and I’m trying not to get too ahead of myself: it’s only been three days.  But before the semester even began, I felt like I was drowning.  I’m working my very hardest and trying to keep my head up, but I really don’t think I can do this…

Rest In Peace

As the morning light peeks through the window and you stir into consciousness, sometimes for a fleeting second, you forget.

But you are jerked back into reality as your heart begins to pound– head spinning, choking back acid, muscles aching, nerves burning.

Most days, you lie there for a while, trying to breathe through the pain and gather enough strength to go on about your morning routine.

But a big part of you wonders why you bother to get up at all.

You drag yourself from bed to fight the same battles each day. No end in sight, simply running on a treadmill uphill, hoping to maintain an unfortunate baseline.

It all just becomes so, so very tiresome.

Your physical health continues to deteriorate as your spirit is crushed under the weight of a crumbling sense of self.

You know there are people you would let down if you were to leave. There are those who would suffer if you were to suddenly cease to exist.

So you press on, trying to ignore the fact that you’re trapped– fake smile, one foot in front of the other.

As time passes, your increasing inability to keep up with the world pulls you deeper and deeper into the pit of isolation.

People grow up, get married, move away, retire, or simply forget your existence completely.

You watch as everyone you love fades away.

As night falls and you are left alone with your thoughts, your chest aches with the thought of how alone you have become.

You feel the sting of being unwanted, unneeded, outgrown, forgotten, abandoned.

But as the night turns to dawn, you realize there is no one left to let down. Or at least, there is no one who would have life ripped out from under them if you were to no longer be.

Your body is broken– your very being exhausted and worn– but you close your eyes and let out a sigh of relief.

Tears gilde down your cheeks and a smile slowly creeps across your face as you realize you may finally rest in peace.


[Just some musings from a brain and body currently consumed by painsomnia. No worries– I’m not going anywhere anytime soon. Keep fighting, guys.. ❤ ]

No Wonder I’m Exhausted

After a difficult semester full of medical twists and turns, I am needing to request a retroactive withdrawal. To begin the process, I had to submit a statement detailing the reasons why I was needing to withdraw.

I found myself struggling for words and anxious about the withdrawal process, so my mom kindly got on the phone and tried to help me figure out how to phrase the letter.

After rattling off a long list of symptoms, procedures, and medical vicissitudes, she finished with:

“This is something I’ve been dealing with for the past 5+ years…”

Wow, she’s right: 5+ years of this crazy, inconsistent life.

5+ years of waking up to fight fatigue, widespread pain, nausea, dizziness, tachycardia, low blood pressure, vertigo, migraines, dystonia, syncope, anaphylaxis, chronic infections, subluxations, dislocations, cognitive impairment, tachycardia…

5+ years of taking more medications than most 80 years olds. Drugs to treat symptoms and disease processes and then even more drugs to treat side effects of those drugs.

5+ years of needle sticks, blown IVs, invasive therapies, painful procedures; “eating” through a tube in my intestines; relying on a wheelchair (though using it less than I should due to fear of judgement); stabbing myself with EpiPens, grabbing at my throat gasping for breath; faking smiles, forcing laughs and constantly hiding behind an “it’s all good”; trying, and usually failing, to balance health, family and school, struggling not to define my existence by my disabilities…

No wonder I’m exhausted.

Where Was I?

Sometimes I look into the mirror and at the person staring back at me like…what happened?  When did I become an adult?  Where did that little girl go?  Wasn’t it just yesterday that she was playing outside, dancing in her bedroom- dreaming of the independence of the grown-up world?  Where was I all those years?  I would have protected her.  I would have told her that being a grown up is not all it’s cracked up to be.  I would have begged her to stay young.  I would have shielded her from every little thing that stole away her blissful innocence. Those eyes in the mirror have lost their light.  Even when she smiles, she looks so worn.  Battered.  She stares back at me, brows furrowed, as if to say, “Why didn’t you save me?”  I slowly reach out to her, and our hands meet.  A tear slides down her face.  I want to tell her not to cry…that it will all be okay…but my breath is caught in my throat.  Looking into her eyes I whisper, “I’m sorry.”  And then I turn away.  

Post Appointment Thoughts…

I’m really worried about Sharon.  She just seems so stressed and worn lately.  Maybe I’m reading too much into it…I tend to overanalyze people’s expressions, body language, tone, etc., especially when it’s someone I care for deeply.  But she just seems so exhausted. Older, somehow.  I don’t like what this new place is doing to her…

And The War Wages On

I work my very hardest to be “normal” and not to bring anyone down. However, I must say…

It’s indescribably disheartening to sit helpless as a disease detains you in the prison of your own body. You look back at your former life with nostalgic envy, realizing you took it all for granted. From the most elaborate vacation to a simple walk to the bathroom. Every day without pain or fatigue- when you had the potential to say “yes” to every exciting invitation instead of, “No, I’m too sick” to any suggestion at all…so many times that people cease asking altogether.

What I would give for the “normal”- even “boring”- feelings that many my age detest. I would love to get up early to the sound of an alarm clock jarring me out of a sweet dreamland for yet another predictable day of monotony. To get up out of bed, brush my teeth, shower, get dressed, eat breakfast…

To not have to worry about about medicines, treatments, injections, IVs, emergency room visits, hospital stays, dizziness, fainting, blacking out, heart palpitations, dangerously low blood pressure, vertigo, excessive fatigue, weakness, nausea, vomiting, dehydration, migraines, blindness, shortness of breath, tachycardia, hives, anaphylaxis…

To set out to enjoy another day of teenage normalcy instead of settling into the rigor that is the 24/7 management of an unpredictable and all-consuming illness, hoping that my well-disciplined routine will allow me one more day of maintenance and “just getting by.”

I am not seeking your pity- I am incredibly thankful for the life I have, truly, despite my limitations. But I do plead for your understanding.

Please see that I am not my illnesses: I am me…

I’m holding my ground as the army that is chronic illness pushes forward. It may have more weaponry and experience, but I have an amazing team, a little stubbornness, and a lot of untiring faith.

Crisis Center, Round Two

I was escorted into a small, white room by an emotionless face in a white coat. Before I could even turn around, the big, heavy door was closed and, click, locked from the outside. With a defeated sigh, I began to take in my surroundings. White walls, white tile floor, white ceiling with a bright fluorescent light, a thin white blanket and a small white pillow placed in the corner. I walked the perimeter of the small room, running my shaking hands carefully over the walls. No windows but the one looking out to the hallway- the one they’d use to watch me…whoever “they” may be. No doorknob on the inside. No way out. I noted the smeared handprints up the wall and closed my eyes, sympathizing with all the poor souls who has been locked in that room before me. Those who, too, realized they were trapped and at the mercy of an unfeeling population of people who thought of you as little more than an inhuman burden on society. I slowly spread out my fingers and matched my handprint with one of my predecessors. The stranger and I were suddenly one…one single being united under the horrors of this torturous imprisonment. The room became a spinning white blur and I fell to my knees, fighting to keep in what little I ate for lunch. No way out. No way out.

Once the spinning ceased, I crawled to the corner and slowly began to lay out the crumpled blanket. On it were stains of brown, black and yellow. It reeked of metal and a scent I couldn’t quite put my finger on…but at that point, I was too numb to care. I curled up in a tight, shaking ball and pulled the blanket over me. I couldn’t believe I was there again. There- at the Crisis Center- a place I prayed I’d never have to think about again, never mind be held prisoner. Prisoner. That’s exactly what I was- a prisoner once again. But this time? There was nothing to set my sights on. No people to turn to who understood me and who loved me for who I was. No fuzzy chicks that warmed your heart and fell asleep in your hands. No fishing at the peaceful farm, casting all your cares into the still water. No screaming in the car, releasing pent-up anger and worry until you could breathe again. No sitting on the floor in pjs until two am, working to make sense of the world and all it holds. No more laughing until we cried or crying until we laughed. No more heartfelt hugs or empathetic eye-contact. No more inside jokes. No more happy music. No more family. There was no light at the end of the metaphorical tunnel…no. Not this time. I could feel it in every fiber of my being.

Before I knew what was happening, hysterical and unyielding shrieks began to escape my mouth. I pressed the dirty blanket to my lips and screamed until I could scream no longer. At some point, someone switched off the light…from the outside, of course, and I was left there in the darkness of the strange, square room.

Eventually, the screaming ceased. I carefully pulled the blanket away from my mouth, rolled over, and caught my reflection in the light above. I stretched out my arm and tried to touch the face staring back at me. She did the same. Hot, salty tears ran down the sides of my face, soaking the pillow, and she cried with me. We looked at each other for a while. She had a sad, distant look in her eyes…alive on the outside, but dead in spirit. With a heavy heart, I realized that the broken girl in my reflection was all I had left. I whispered goodnight and turned to face the wall.

I don’t remember falling asleep, but I know that I must have, because before I knew it, the girl that once kept me company was replaced by a bright light. Remembering where I was, I groaned and threw my tired arms over my eyes. I felt like I had been hit by a bus…and I wished that I had been.

Knock, knock. In entered a woman wearing bright purple scrubs and big purple earrings. She handed me what I guess was supposed to be breakfast and told me I was going to be transported within the next half hour. I sat up quickly.

“Transported where?”

She shrugged, handed me a plastic spoon, and closed the heavy door behind her. The smell of the contents of the plastic food tray filled the room, turning my stomach. I pushed it away and rolled back into my make-shift bed. All I could do at that moment was pray with all that I had in me that I would be brought back to Moses Cone. At least there I would know what to expect of them and they would know what to expect of me. In a sick sort of way, the nurses, technicians, and counselors there at Moses Cone were my family- Ms. Denise…Ms. Janine…Mr. Jim…Ms. Michelle…Ms. Lorrie…Ms. Bonnie…Ms. Amber…Ms. Janay- the only family I had left. I lied there, praying, waiting for the fateful knock at the door.

Finally, a policeman entered and said, “Someone is here to transport you to the hospital.”

“Moses Cone?” I demanded in a voice I hardly recognized.

“Yeah, I think that’s what they said.”

Tears of relief sprang to my eyes as I got up and followed him out the door- out of my cell- into the hallway. There stood a police woman, blonde ponytail, gray uniform. I put my wrists out in front of me and looked at her.

She laughed and looked me in the eyes. Wait, in the eyes? She could see me? My heart did a little leap. She could see me!

“You ready?”

I gave as much of a smile as I could muster to woman taking out the handcuffs- the first person who treated me like a human since my arrival there.

“All right, let’s go.”

(Written August 2012)