Tag Archives: contradiction

Another change

This changing my mind thing is a continuing feature of this blog (and my life) so if you’re tired of it stop here.

To avoid being treated like a useless nothing it came to me that I should detach myself as much as possible from the medical system and step one was to embark on an unscientific study of what happens when I reduce my meds to prolong the periods of time between trips to the doctor to get my prescriptions filled. I know this sounds stupid but going to the doctor has become a declaration of total failure of myself as a person. What other type of person would submit themselves to the care of  people who have no use for who you are–and in fact insist you admit your worthlessness and inability to understand the world to them personally and in a couple of cases have blandly pointed out that if I don’t like it, it’s no worry of theirs if I just walk away.

It would be paranoid to say directly that since there is only ONE health-care provider in the whole province of Alberta that offering walking away as an alternative is to say I’m welcome to go and die somewhere. That, well, does seem a bit extreme–even if it does feel like the truth. So lets just say these people are so tired of sickness and the way it twists a person around that they are no longer willing to “put up with it” and if you want help you’ll get the same treatment a clerk at a hardware store would give to an unreasonable customer. And accept it because that’s all there is.

Since I believe I shouldn’t have to debase myself in order to stay alive, my strategy was to detach but the prescription thing needs to resume. My heart, in spite being scar tissue, implanted valves and surgical mesh is still vulnerable to stopping and starting at will without meds. Strangely, headaches, ringing ears, dizziness and even arthritis in my hands and joints came back almost immediately. All of this is normal, but much enhanced by lack of medication.

So, always full of plans and schemes, the next play is to stay on the meds, endure the useless check-ups once every 3 months and pick-up my prescription renewals. The 3 month cycle is mandated by the insurance company that covers my medication costs and not based on some sort of care plan. IF I ever bother to bring up a problem there’s no time to investigate and if there are messages from my specialists that haven’t been lost, I always get them months too late to act on anyway. This streamlined scheduling has advantages in that I can substantially reduce the physical pain at a small investment of time while enduring the minimal amount of disrespect the system seems unable to resist delivering.

What amazes me is given the high level of training over a long period of time going into medical education, that being a caring person isn’t considered a necessary prerequisite to medical school. Sure, it’s a shame to turn away all that tuition money by rejecting someone who’s only limitation is lack of empathy–it’s a lot of money I hear. And maybe that’s the point? Medicine is just a business in the unique position of having customers who must put up with whatever service level medicine feels like offering? Add to this the pressures of work overload that medicine appears to value as a proof of expertise more important than care and it’s not surprising that medicine fails to support human needs.

Inspiration for my Blogs

As mentors over at the Should I Blog? mini-course on blogging for people with cancer we’ve been asked to reflect on what inspires us to write out our thoughts and experiences.

This a tough one for me as I feel nothing inspirational about my treatment as a rural cancer patient in Alberta, Canada. All I feel is alone and cut off. In fact, my emotional response to the machine called “care” here has gotten me pushed away form what minimal services are on offer, so I’ve just gone silent.

One of the worst comments I get is some variation on “these people are wonderful and you are the only person to EVER complain about them. So now I can add “ungrateful”, “mistaken” and by implication, “unworthy” to the list of my failings as a human.

I wonder if people realize how incredibly isolating it is to tell someone their perceptions and feelings are mistaken? Or to reduce a sick person by judging their manners as unacceptable when they are desperately asking for help?

Now I hear people protesting that not every person in the cancer industry is uncaring and hard. Fair enough, I can’t claim hurt by being labeled as a person who throws around generalizations without saying I also know there are good people on my care team. But I do claim the right to be treated as a whole person.

What inspires me in an odd way is how people enact imaginary roles and are unaware of how disconnected from reality THEY are. Writing about this helps me understand things that are not exactly happy things but puzzles that could swallow me right up.

 

 

 

 

 

Not Resolved

Find myself unresolved recently, right when I need to reinterpret things, my words fail. For Maha I promised a blog on a picture she commented on and need to find my notes from a class called “Writing About the Intangible” taken years ago at SFU in Vancouver. For the moment I’ll let someone else speak here:

From “Men Explain Things to Me” by Rebecca Solnit quoting from To the Lighthouse by Virginia Woolf:

“For now she need not think about anybody. She could be herself, by herself. And that was what now she often felt the need of—to think; well, not even to think. To be silent; to be alone. All the being and the doing, expansive, glittering, vocal, evaporated; and one shrunk, with a sense of solemnity, to being oneself, a wedge shaped core of darkness, something invisible to others. Although she continued to knit, and sat upright, it was thus that she felt herself; and this self having shed attachments was free for the strangest adventures. When life sank down for a moment, the range of experience seemed limitless. … Beneath it is all dark, it is all spreading, it is unfathomably deep; but now and again we rise to the surface and that is what you see us by. Her horizon seemed to her limitless.”

Scott

Change approach

Occurred to me after my last phone call to the System-of-Care agent the I’ve developed a disability in speaking of my illness to others. Part of the problem is always speaking to another person. Each time I call I get another nurse or receptionist and have to start from the beginning and for some reason that disorients me. My cardiologist’s office is like this and the oncologist I’ve seen only once has now moved me to another clinic just when my chemo has put my heart at risk. Ironically, you need to be very together to be ill. It’s hard work.

Unfortunately, when I start to recount my history I get emotional and lose it. Even talking to my home care nurse, who I know pretty well (and she knows my complete history) I lose the ability to talk–literally. (Obviously there’s been little progress in recovery from the last incident with my heart, I’m still a mess).  Plus there’s the contradiction of my experience of health care givers  being advertised as “there to help” when in fact many seem either careless or actually untrustworthy.

So maybe I’m paranoid but so what? I need these people but also recognize they need me to be cooperative and rational and not some crazy sick person with issues. It confuses and distracts them for me to talk history. It also puts them on the defensive which makes me angry. This combination is not productive in any relationship and I think if wasn’t my life at stake I would have caught on much earlier.

No more history. It’s inappropriate. According to something I read last night contradiction sharpens awareness making it a useful friend.

Movement Memoirs

Moments, Meaning and Motives

edifiedlistener

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

Ramblings...

Conquering Kids and cancer

the best liar you know

my life with chronic illness

anotheronewiththecancer

Yes I am the Cancer Curmudgeon

DiepCjourney

Reconstructing A Purposeful Life

Debs Open Learning Journey

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

otherplaceblog

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

NomadWarMachine

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 offline...