From A Wheelchair To A Rock Climbing Wall

Good evening folks! I thought I’d share a piece of writing more like what will be in the Sickybeat book!

My 2014 rock climbing adventure follows. Longish post, so you have been warned

            When people see me pass by in the mall or grocery store, I can nearly guarantee they don’t think, “I’ll bet she likes rock climbing!” the boxy walker I stand inside virtually assures my guarantee to be accurate. But, I DO love rock climbing, and I’ve climbed more than one wall. I had the assistance of two friends, and my heart was pounding in a way I’d never felt before or replicated in the years since, but the exhaustion was liberating.

            Co-dependence has been much of the story of my life, Cerebral Palsy can do that. Day-to-day life is enough work that caregivers don’t have energy left for their own self-care let alone the adventures I dream of undertaking. However, I’m a dreamer, a planner, a problem-solver, and a doer; there is nothing I have wanted to accomplish that I have left undone. When a hospital employee I walked the halls with talked about her rock-climbing hobby I knew I wanted to try it.

            When my hall walking buddy suggested that we could go to a local rock gym together and that she would help me try out climbing, I had my doubts. Nonetheless, I threatened to hold her to her word. over the next few days this friend was my nurse’s CNA, and I was eager to solidify details of our plan. My surgeon confirmed that it should be safe for me to go climbing if I waited six weeks after release so that my stomach was fully healed from the surgery I’d undergone.

            Afraid my friend would forget about me, I convinced her to send me an email with the covert intention of saving her email address in order to remind her of our agreement after I’d healed. One by one I counted the days as they rolled on back home. My surgery had failed before the requisite six weeks passed but rock climbing couldn’t make the pain any worse, it wasn’t possible. Thus, I began a persistent game of email-tag to pin down a date for climbing.

            The fact that my friend had a life, and a job really got in the way of my desire for an immediate climb. I am not a patience person, that’s why I was born at twenty-four weeks, the point in my life at which I wanted to rock-climb was a particularly patience-restricted time. I had no life to speak of; everything fell into one of three groups, food restriction, calorie burning, and burning calories as I paced around whatever hospital I was in at that moment. This would be the first time in a year that I’d happily participated in anything with friends. Sure, it would take a hell of a lot of energy, but the activity was done for fun, not any of my punitive ritualistic marches et al.

            I was awaiting the letdown. She would put off and put off until we lost contact, that was my base expectation of the large majority of people. When she agreed to meet me at a rock gym the week after I’d emailed her about it my anxiety didn’t subside. As was my M.O. I began to worry anew; something would happen to stop our plans. I could get immobilized by a puking bug; she could get in a car crash! Anything would stop my word from spinning.

            My sense of panic only lowered when I was at the rock gym, with momma and not just one friend from the hospital, but another gentleman I knew as a CNA. Getting into the gear, I felt alive, happy, and playful, it was almost foreign. One person climbed up behind me as I tackled the first wall, he had to lift my leg from one “Rock” to the next, most of the way up, and he did it so that most of the work was still mine. I pushed and pulled my body and lifted my foot as far as I could get it to go, before he pushed it the last inch. Or two, maaaybe. I hadn’t climbed half way up one wall before I felt compelled to turn my head and look down at Artemis. “I hate admitting you’re right mom. But, with as hard as my heart is thundering right now, I probably didn’t need to take that forty-five-minute walk before we got here. This is definitely a workout.”

            My tiny heart’s pounding didn’t stop me from forcing my seventy-five-pound body up two full walls before calling it a wrap.  I needed to have one victory during the year. I was twenty-four and adults are supposed to accomplish things.  While I was getting help to de-strap I had a sense that it was possible to conquer all things, even the demons that drove my illogical and unhealthy behaviors. For that day I was human again.

            The song in my soul would not claim freedom for six more years, but those rare shocks of “Happy-Dance-Enthuisiasm” were enough to energize me to continue climbing back into myself.

Unexpected Bitter Appreciation

I was dead for a decade

I was living death out

I hated what I knew

With corrosive passion

Because I didn’t express pain

Until it was crushed out through my dense and boney presentation.

I was afraid of what you readers would do.

In the name of what I have, and thus, who you thought I was.

I was afraid of me, because I was taught by so many to see the cracks I bare,

Rather than how to mend what I could.

Or that people have that ability,

And that I could paint the world with the perspective of the things I learned from the unfixable.

It took the slowing of the world,

Illnesses, and a pandemic, to solidify my hard earned truths

at the same time that it held me away from everything that I healed for.


In my most recent post I said that there would be a follow-up! This piece is short, and please enjoy, and leave feedback!

Tugging at a Trigger

Two hands,

two feet

enhanced dexterity

A mother’s twisted love

and a trillion triggers

the weight of my short note

sets off the illogical verbal barrage

and she runs in circles to escape her own bullets.

How is one to realize

“ I love you, Mom.”

is a damaging phrase.

Or was it my smile

on video chat,

meant as a light,

which lead her demons home

defining boundaries is simple for me,

because I never shared her house

without an escape route

and an alley in the field.

But, I not everyone has escaped.

And I wonder,

how many times

my reaching out in good faith,

pulled a trigger.

Toppled Tables

Someone in my family suffers from Borderline Personality disorder. Most of us have distanced ourselves to a degree in order to keep our lives moving forward.

I reached out yesterday, and this person was sweet and silly on video chat. When they sent a message this morning the difference in thinking was unbelievable. If I didn’t know better I would have said it was a different person.

But, I DO know better, all of my life with them has been filled with mood swings, fear of being alone, cruelty to those she loves,  and paranoia. It’s hard enough to handle on its face, but knowing that not everyone can create a safe space (those under 18) is even more difficult.

I move slowly around this person. Because, despite my best attempts at mindfulness about what may trigger them, I never have any real certainty about it. My actions affect their trigger, and they unknowingly hurt still others.

What’s more, if I write about this person, even with the acknowledgement that it is one perspective, it could have ripple effects. The last time I wrote about them, I went about it in a spirit of anger and pain. I didn’t reach a capacity to let go of my hurt for almost a decade more, and today it feels wrong to document only what I see of the person, I love cautiously. With patience, compassion, understanding, and an open mind i can see the beauty that they seem to try so hard to hide and protect. It may be that the efforts to protect takes so much energy there is no time for the rest of life.

Long and short: no matter how kind or helpful we may think an action, we will likely never see all the ways it reverberates. –reflective poem will follow 😊 good night

In Honor of My P.I.T.A

I recently brought up the severe hip pain that I had been dealing with from the 26th of July until last Sunday. I’m still not 100% sure why it started or why it stopped, but I do know what it felt like. So, and this is the important part, I decided to make something useful out of the sensations:

Sèid Hip

It was a knotted roll of barbed wire

underneath a magnifying glass in the sun

and it protested near an ally

who knows how to cross wires

she screamed like skin,

as a whole,

being ripped into mosaic octagons

attacked with a two inch long needle

it paused, for a moment.

But vengeance can hold consciousness

and wait.

Not afraid of halting a broken system,

they push on, as the buildings begin to tremble.

Not only was this entertaining to write, it helped me engage my critical thinking in a different way but, it gave me power. I DEFINED my suffering, I came out on top and I celebrated my victory.

Do you have was that you define the parameters of the experiences you have little control over? How do you celebrate so that echoes of suffering don’t follow you into the future?

When You Just Can’t Win, and the only quitting allowed, is tantrums

Everyone who reads this blog knows i have many health issues. For over two weeks I had severe joint and muscle pain in my leg. Sleeping hurt when I could manage to drift off, I would wake up by 2:30am. That combined with my low energy normal and I was running on empty.

Last Saturday, after grocery shopping I was leaning on my mom just to get back to my room. When I felt normal ish for the first time in two weeks and a usless hip injection i was ecstatic. And cautious.

I went to sleep last night relieved and happy, only to wake up so nauseous and sick that I crawled back in bed before breakfast.

I tried to rise around 11am and was weak and having cold sweats and nausea, i had to get help back to bed again. I slept 3 more hours and laid in bed even after waking.

I cannot rush and push my body, or I’d be back in bed AGAIN. I NEEDED the rest i lacked for two weeks, and my body was going to get it by force.

When I relented, healing came quickly, food for thought

Why People Mourn, or Not

When I hear an idea that strikes me and gets my mind turning I hold onto it. If that thought comes back to me repeatedly in the following few days, I write it down and keep writing about it until it feels done.

Most of my poetry takes the above path of creation. Tonight I wrote a poem based on a quote from Commander Riker on Star Trek: The Next Generation.

“Maybe if we felt any loss as keenly as we felt the death of one close to us, human history would be a lot less bloody.” ~ William Riker

I wrote this poem in correspondence with that quote:

We barely flinch for dead bodies.

We mourn the losses of what we see is ours

Our nation,

but only in large numbers that we can’t distinguish ourselves from

our city,

because the people across that line in the ground

like different teams

Our schools

because we are taught more truth

Our Colors,

because novelty

is a virus

Our spirituality

because our peace is so much purer

While we dissect ourselves into identity groups

No one mourns

as the blood of an entire species spills red

In the history of time,

we proceed into memory,

as nothing but bones of possibility

The stain of humanity

has left little reason

for the future to mourn

a fear so virulent it embodied us

when to our death, we misinterpreted

the warning of caution, for that of danger.

Help -I’ve Fallen and I’m Trying to Minimize my Public Profanity!

I wanted to let reader’s know that I’m still writing. I’m in pain right now ( I DIDN’T fall!) I’ve had a strong and pretty constant hip pain which has affected my ability to work as efficiently as I would prefer. Related, I also need more sleep. And, yes, I contacted my doctor long enough ago that I will be trying again tomorrow.

As a thanks for your patience I will share a poem I wrote, and then read, for another event on zoom last Sunday, enjoy!

A three year old, holding a pastel pink two cylinder bottle,

small fingers griping at the center gap

I was a “double fister,”one might say.

Looking at the hole in the wall,

I feared snakes, I knew there was no escape.

I was imagining -for the first time-

preparing for the life I didn’t know

that life of complex,, trauma

I knew it when I was berated for pretending, hands-to-myself.

She opened the car door, where I sat alone,

telling myself a story out loud to pass the time

as she packed that blue Chevy-Nova.

“Don’t do that!” she spat, you sound Fuck’n crazy.

Before taking five young kids into hiding,

based on a delusion.


Orange shag carpet

in the middle of a living room

Compassion and fear battled as I crawled around saving people

because, that is what makes me human.

In this real family home, safe to be weird.

When scarily fragile started to stick to me,

when “in-need” was spit-balled in my direction,

I laughed, at what people imagined.

And raged in the privacy of what could be,

what would be, and what was.

Imaginations so shriveled

egos with cracked armor.

I was protected with imagination,

Imagination crafted a shield of empathy and understanding

though sometimes difficult to wield,

and occasionally cracking

In the face of death, I imagined the pain to bear,

Looking inward, I lost the song of my soul,

I made death give me a new one for the price of my company.

I am alive now, because I became a bored hunter,

preferring protection against the strikes of enemies

over the ability to strike them down,

like a knife, the weapon fear can sever

and it is only the strength of a target

that can defend against it.

Sometimes while crossing over.

If I must pay the price of fear,

or the price of change,

you need not imagine

my choice.

I will pay for change, in any life I am given

I won’t imagine any other option

The Writer’s Nightmare!!!!

So, I finally get up the moxie to write a short piece of fiction for a contest. But, what do I write? I have a long running story in my mind, this story has been evolving with me since I was a very little girl. I was so young when I started working it out in my mind, that I would act it out crawling around on my living room floor and speaking each part to myself. I’m so close to that story, I won’t let it go! (Yet.) So, what else?

I have had other ideas for fiction, but they seem to be something more apt for a novel. Using my imagination as the backbone for a creation makes my throat tighten, and my head spin. This is not a good long term state to be in when you are on a 30-day deadline!

Did I panic? Yep! I haven’t written a short (fiction) story since age 7, (it was called “My Window.”), and at the time I didn’t care about specifics or rules. It was just FUN.

I know that controlling my panic is possible, so I stopped to stretch and slow my breathing. The idea that came to me is so simple it almost hurts. Create a fiction about what I know; what will my future be like if I….

I know me, I know my goals, and I know a lot of people, but I don’t know the future. If nothing else, acting as though I am the protagonist, instead of an omnipotent narrator, I can live out what might happen in any situation and exist fully there until I am finished writing. What mindset do you get into writing fiction? I really want to know!

When Feedback Comes, at a Trickle; How to Keep a Story Alive.

As I wait to get writing feedback from some of my potential audience, it’s hard not to want to shout “Hurry UP!” and let loose a deep sigh.

I can only do so much with the book as I wait on other eyes. I feel strange without a writing project in the works, but if I started a second I would feel horrible for it because the first is incomplete. I’m liable to trip myself if I multitask in that manner. Props to writers who can do it well, honestly a true talent.

So, what do I do? I don’t like killing time, I’d rather be a vampire sucking all the life I can get out of time, and leave time to go on undead. (There I go with metaphors!)

What I do with my bits and pieces of feedback is practice polishing my weak skills to buff them up! In my last post, I talked about a short story contest so that everyone else could enter if you so desire. I’m entering to see if I can be as concise as a short story requires and keep my voice and imagery. If I can put together a decent story that’s vivid without meandering quite as much as I catch myself doing, that will be victory for me.

I’m improving, with the edge brought on by a little competition, and making myself a little less comfortable. Greatness, in its true form, doesn’t come comfortably.