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.

 

 

 

 

 

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Comments

  • Maha Bali  On March 22, 2015 at 12:11 AM

    I found the aspect of others denying you your own reality particularly powerful

    This happens to me daily not in the traumatic sense of health care (or lack thereof in your case) but in the denial of ppl around me of the significance of my deep online relationships. It should not be a big deal but it is for me because it is my lifeline from the traumatic things going on in my day to day life

    • scottx5  On March 22, 2015 at 1:50 AM

      Maha, glad you liked the posting. Wouldn’t thought about the isolating factor in some people’s trying correct my perception of my own experience without having the small bits of Feminist writing that I have. Amazes me that people can both refuse me my own perceptions and expect me to correct myself to fit their crappy world. It’s social oppression in a world afraid of diversity. Not my problem if they are still powerless after so many years of proper behaviour.
      Of course if something is unspoken it can remain hidden. But when it comes out it needs to be slotted into the “acceptable” narrative. Some of this is failure of the imagination to see that others have different thoughts and interests. Largely though it seems an attempt to return the world to the expected orderliness that stability seems to need.
      The complexity of who you are is awkward for some people’s simplifications. The power of who you are comes in part from your being difficult to explain and that makes some very nervous. Doing things by our own terms is kind of an audacity above a person’s station too.
      And it’s hard to tell some people they don’t complete all and every part of us.

  • thesmallc  On March 24, 2015 at 9:38 PM

    I blog for the same reasons a person practices his favorite sport, or a writer writes, or a musician plays his favorite instrument. I simply enjoy it and it has become part of me. I used to think I was blogging for others: to help young women about cancer awareness. But it was primarily for me. My blog listens to me. It doesn’t reject me. It has patience. It’s like a mirror allowing me to be aware of myself in a gentle way. So why not blog?

    We live in a society where 1) everyone has an opinion and 2) people expect explanations for other people’s actions. We should just do what we love and allow others to do the same. Without questioning their actions. (Scott, this is not directed at you. I am reacting to a post another blogger posted about what people thought about bloggers. A lot of negativity was said. Here’s the link:http://seasonedsistah2.com/2015/03/23/blogging-why/)

    Hang in there!

    • scottx5  On March 25, 2015 at 12:26 AM

      Thanks for the encouragement Rebecca! Was starting to realize I see the cancer treaters as judges who won’t stop being displeased with my “performance.” The who and what of myself has been internalized by the both institution and me. We’re dancing too fast and I get dizzy, lost.
      What’s funny is I feel “wrong” about the world only when I agree with them. They try so hard to BE reality and always right that it’s obvious the whole thing is theater. That said, the day to day of it wears me down as does the endless whispering to “get over it” like the world is really quite nice if I embrace the garbage as petunias.
      One of the hardest things is the hurt decent people take from my comments about how someone who does a job like theirs has damaged me and I need to get better at naming the badness.
      Read the link and think I felt that way at first–blogs were personal and not universal or detached enough. Stopped believing that a while back. The personal is the core of it and the rest is just pleasing abstraction–theater.
      Thanks for the reply Rebecca, I feel scattered as the last chemo gets delayed and delayed.

  • Tania Sheko  On May 9, 2015 at 4:27 PM

    I’m sad about your situation, Scott. I have similar experiences with my health care while trying to get help for (apparently) fibromyalgia. I’ve been to 9 specialists, mainly because you get a different one every visit in the public system. Fortunately the last one I went to is respectful although she did raise her eyebrows when she said ‘you realise you’ve been to 8 different specialists’ when I explained to her that I just wanted someone I could talk to and not be judged by. I can’t share the inappropriate treatment I’ve had here but if I tell people they don’t believe me. Judgement, dismissal, etc. We are people, not symptoms. And when you tell people? Even some of my family decided I was over dramatising. It’s depressing and doesn’t help you mentally/emotionally approach your illness/wellness. I feel for you.

    • scottx5  On May 10, 2015 at 10:00 PM

      Tania thanks for sharing. Being judged by people who allow themselves to be disrespectful without knowing you is hard enough–someone close is even harder. I’m finding myself avoiding real-life contact to keep from becoming “dependent” and vulnerable. Anyway, my experiences aren’t accepted because they challenge people’s need to feel secure with the medical system. The experience of dying isn’t popular either. Maybe this stuff is too personal and people don’t want to hear about it because they don’t know what to say?

      My life is on the net now. I find that sad but I was raised by artists who had identities expressed in their work not in their place in society. As they got older they sought less and less validation from the world, preferring the company of a few close friends and their art. Being a mix of social and loner the atmosphere in Rhizo is perfect. No obligation to be normal or hold group beliefs. Strange that the net feels more authentic than the so-called real thing:-)

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