Tag Archives: identity

We can’t see you

Thinking about the Virtually Connecting question “Why We Blog”… As a medical patient with major heart problems along with less threatening skin and colorectal cancers the sense that I exist as a person is simply not supported by the medical system. There is first, no continuity of care, no affirmation of how my life continues between appointments, none of the markers of “being here” that a living person normally accumulates and an apparent need by medical people for me to be polite, understanding of their stresses, and to never complain, act sick, or display the obvious lack of discipline the unappreciative patient is known for. And for God Sakes  leave off the talk of death, you didn’t die, (for very long anyway and that was at another hospital with different doctors and nurses and you came to to us almost gone, and really we saved you even though it wasn’t actually us and you know? Just shut-up).

Truth is, everything is mixed up and what I remember is not what they remember because “they” are always different (but of course also ALWAYS right:

Same family doctor and same clinic but because she, my doctor, (two individuals over eight years) is “my” doctor, other doctors in the clinic (who also exclusively staff the local hospital) will not contact her(s) if I turn up tragic and needy. What she knows about me is almost proprietary and that’s how the dying thing and the months of misery and two heart attacks came to be.

Continuity as in vacation and maternity leaves mean my file goes into limbo. Follow-ups, exams, tests, monitoring and even receptionists simply STOP. Chronic but unknown, the channels are closed, the care is away, gone. The patient abandoned, without history needs a crisis to get attention and then in-crisis must clearly represent themselves or endure the entire process of diagnosis again. Or miss-diagnosis again and again.

Time to stop. I blog to keep from disappearing.

Change

This blog inspired by things said by Rebecca Matos at her blog http://thesmallc.com/2015/04/09/to-ignore-or-to-educate-that-is-the-question/
And Maha Bali’s blog “Pushing: A Matter of Perspective & Faith”
http://blog.mahabali.me/blog/uncategorized/pushing-a-matter-of-perspective-faith/#respond

Illness isolates us, we withdraw from the normal social exchange, become more fragile and when we try to explain the hurt raises up and chokes us or comes out in an emotional over-reaction.
Things are coming up in me as I wait for the final word on whether the chemo worked. And since the decision on whether I needed another heart operation depended on being rid of the cancer there’s going to be another wait of unknown length for the cardiologist to contact me–she frequently forgets me and even showing up by air ambulance doesn’t get her attention.
All this deciding by others that doesn’t include me is further isolation I know will be made worse when I finally go to the appointments and face the bland normality of being “cared for” by agents of an institution that could as well be a place where misfits are tortured until they give-in and promise to be suitably reduced to unfeeling objects.
Rehearsing what I need to tell them it becomes clear I will say nothing. What can be said? They have treated my cancer only (same with my heart). Who I was / am before and during my sickness is beyond their job description and for their purposes behind a wall of caustic remarks designed to scrub me from their thoughts. “You seemed satisfied.” “You never mentioned this before.” “Your past experiences are to be gotten over and have no bearing on your treatments here.” On and on meaning only “We don’t hear you but no matter because we know best what you need and if you would just get over being a person we’re sure you would feel much better.”
I realize this all sounds like feeling-sorry-for-myself stuff but it’s part of a rebuilding process to reclaim myself from the judgement and disrespect that’s been my life since 2007. Recently a friend recommended “The Will to Change: Men, Masculinity, and Love” by Bell Hooks and though I haven’t received the book by mail yet my thoughts are on change and also isolation as the price of survival as a person. Not a happy choice.

The upfront price is to stay away from the medical system except in dire circumstances. This sounds a bit crazy but the medical system here doesn’t work for rural people and depending on it is as likely to kill you as staying away. People who don’t understand the dynamics of the failed systems  here suggest I try a different medical team. It’s perfectly logical and meant to help except that option is closed. There is only one clinic in town and all but one of the doctors there didn’t participate in standing dumbly by while I died of heart failure right in front of them. This happened at the one hospital in town that they also are the only staff for. There is only one cancer clinic for northern Alberta run by the one organization that serves all of the province. All the care outlets originate from from this one provider and they don’t talk to me by any means beyond appointments where there’s no time for chit-chat that doesn’t involve  praising their magnificence. Same with cardiology except they forget about me except for a yearly call to see if I’m dead yet.
So my choice is do I rely on people who not only fail me but are also intent on treating like a piece of garbage or do I reclaim myself and leave them behind? Right now my choice is to not study their abuse any more. I want my life back.

Being more that one person

First round of chemo is almost over. After the in-clinic IV drip via my new “central line” tunneled catheter, I go home with an infusion bottle that administers the third of the 3 chemo drugs needed to treat colon cancer cells. So far things are fine though I can’t sleep with the pump on. It will come off tomorrow.

As usual, lack of communication played a role in this encounter with the medical system. My cardiologist never sent a “report” or message with her decision on whether my heart could take the chemo. I was able to get a doctor at my home clinic, where the report WAS sent, to read me the decision so even though my oncologist didn’t have it at least I knew we could go ahead and have my heart fixed later.

The trouble with critical diseases is a person becomes highly sensitive to things like not being told treatment details, cancelled appointments and promises of support that don’t work. From here a person assumes DANGER when really it’s just the usual bullshit of a normally operating system run by humans. Sure these people are more likely to kill you, but you are also closer to death–so don’t sweat it.

The truth is, when they do cause your death there’s already a story in place to cover their ass and gosh, they meant well anyway.

So I’m thinking the physically damaged part of me is going to live in the world of bad communication and careless-to-my-emotions reasons why medical people are absolved of blame and I need to back away from their need to be right and focus on my undamaged self. Yes, it’s important that people in charge of your life have human skills but I’m tired of asking for them to actually care, their acting is the best I’ll get and like most, they suck at it.

Funny, I’ve always felt I didn’t belong anywhere and it’s made me invisible. So invisible patient I’ll be. Not talking allowed when you can’t be seen. Learned that from Harry PotterJ

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