Writing in the midst of it

The reason I moved my writing / thinking over to my blog (unused and out in the wilderness) was to have some venue for making observations that didn’t have to be de-personalized to fit the kind of dialogue style I sense is appropriate for “public” consumption. So I need this place for myself and am not sure why, but will wait for that to develop.

The main “problem” I’m experiencing is a sense of disappearing as preparations are being made for my 4th major surgery in the last 7 years. The surgery itself is scary enough though maybe more frightening is the banal assurance from the medical people that everything is fine. To their thinking, and based on their experience, this may be entirely true (as far as truth goes between people). So why do I feel like they are not talking to me but to themselves or some simulated “concerned patient” model from their text? Or why should it matter (the big question) why should it matter to ME that I exist as something unique?

As the title says, I’m in the midst of an experience and emotionally all over the place. This is causing me to be unfocused and have ridiculous textual tantrums like declaring I give up or being inconsiderate to family members and my friend Carrie who was trying to be helpful and just got snapped at me in my over-heated mood. Sorry Carrie.

My project here is to explore an intense feeling of being regarded as “not there” by the medical system–who I believe are my model of the world that I feel has abandoned me. Why is it important that there is a “me” inside my body that seems to be breaking down on a regular basis? I’ll try not to overdramatize this but the personal is after all, the personal.

More later.

Post a comment or leave a trackback: Trackback URL.


  • crumphelen  On May 27, 2014 at 10:13 AM

    Just to let you know someone is out there, listening.

  • VanessaVaile  On May 27, 2014 at 2:20 PM

    My mode is less acute…more like fading than shredding. Raggedy Anne with a hole in her heel and the sawdust is running out. The advantage with progressive over acute is that there is less point in major intervention and careful management can one away from the medical types who feel entitled to take over control of your body without having personal interest in it. As long as I can live more or less independently I can keep that control. That’s my goal. It also calls for a modicum of family deception.

    I’ve been worrying about you in the clutches of the medical. Some people can let themselves submit to it without qualms. You’re not one of them. The very least your should be able to do is talk to you, recognize you as a person. I’d tell you how to make them do that if I knew how. Too many of them are either not persons or turn the person off when on the job. I hope you find a person in there somewhere. There are a few.


    • scottx5  On May 27, 2014 at 10:47 PM

      Hi Vanessa, I’ve met a few at the ward level in my medical travels that strike me as geniune people. ICU nurse who worked both the adult and children’s cardiac units who talked about Christianity (religion has always interested me) in a way that embodied living care for others. No slogans or judgments. Another was an aid in my ward who had taken the Health Care Aid course I did the editing on for 6 months. She was a grumpy person and kind of rough but very strong. She cared for me during the hallucinations stage and the tattoos on her arms became complex characters that I built a neat story around before I could actually see them clearly.

      I was going to blog on being appropriated by the needs of the medical system to be their project but I think your use of the word “submit” nails it. I’m an awful patient, I fight and yell. I was tied down for getting up and falling face down which disconnected my life support. They had to plug all the surgical drains, air supplies and IV inlets and mechanically lift me into bed again like I was a big slippery just-born whale pup only to have to do it again after I sweet-talked the shift change nurse into untying me. When I was first admitted I woke suddenly with the idea that my wife had left me with the wrong doctors and stopped breathing to end all the bullshit only to be revived, now with a broken sternum.

      Looking back at it the antics and craziness seem childish but something keeps me in rebellion against the easy death of a silly old person who “passed away” in hospital. My Grandmother and her Sister lived downstairs in our house when I was kid and both were taken away to the hospital to never come back. In a strange way this seemed convenient or efficient. It shouldn’t be easy like that.

      This new thing is cancer so the dance slows down from crisis to a grimness, but they are sill in control. At first it seemed good to be quiet to conserve energy. Then I decided to freak out which get people pissed off and leads nowhere. So it’s back to participatory medical craziness. No more breath holding though. Who knew a person could forget to start up again? And on the serious side, I think it’s important to study the effects of silencing and the many ways it appears. It hurts that people betray themselves to misery for the convenience of others.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s


Be well, be edified and enjoy!

No more small talk

“Follow your bliss and the universe will open doors for you where there were only walls.” — Joseph Campbell


Conquering Kids and cancer

the best liar you know

my life with chronic illness


Yes I am the Cancer Curmudgeon


Reconstructing A Purposeful Life

Debs OER Journey

A blog about my open learning experiences ... and a few other bits of ordinary life


Creativity for Learning in Higher Education

Music for Deckchairs

"In shadowy, silent distance grew the iceberg too": universities, technology, work and life

Almost There ... Virtually Connecting

Enhancing the virtual event experience


Rhizomes and knitting

Should I blog?

Everything you want to know about blogging your cancer journey

Nancy's Point

A blog about breast cancer, loss & survivorship

Full Circle Associates

connections for a changing world, online and off...

Digital Writing Month

a 30-day adventure through the world of digital narrative and art


International Network of Educators

%d bloggers like this: