Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Sunday, January 4, 2009

KNOW YOUR ROLE

I talk to Xander about my disease, or any other sensitive subject, while we’re playing video games.
I talk to Lexi about life while we’re doing crafts or dancing.
It’s been a past suggestion of psychologists everywhere that you speak to your children in a non-confrontational situation, like in the car.
I’ve seen enough child psychologists to have heard this many times.
In the car, we listen to music LOUD, dance, and through an all out family party.
The rationale behind this idea is that as a parent and thereby an image of power and authority, it is easier for a child to receive a message when it is given in a context where they can exert some power an control.
Intimidation kills messages.
In doing this, I am giving my child and “out” to change the subject or “pretend” like they are not listening (if you watch their eyes move and their movements slow, they are).
I, essentially, talk to myself.
You would be surprised how many people and who this approach needs to be taken with.
One on one, face-to-face confrontation is scary, especially when you are the underdog going up against a bigger, stronger, more experienced person, or even worse, a bigger, stronger, more experienced version of yourself.
I think this well-known and commonly accepted idea of approaching children should be applied to patients as well.
I think it could be a global rule of communication which could be applied when meeting with Rulers. It is a sign of submissiveness and respect.
A patient is in a vulnerable, powerless situation, they are coping with forces that extend far beyond the realm of the Doctor’s office. They are immediately “put in their place” by their position in the room, either in the patient’s chair, which is “substandard” to the doctor’s (subliminally relaying the message of power in the room) or worse, on the exam table.
My favorite memories are of visits where the practitioner sat below me on the foot of the exam table (HI ANNA) or when the doctor offered me his chair (this is how Alyea sold me on being his patient).
My worst are of going with my WELL LOVED, GOOD INTENTIONED caregivers and being forced to sit on the exam table while they speak and I’m treated like a three year old or a learning prop.
When I speak to other patients in the lobby, I often sit on the floor. I understand I’m an “acquired taste.” I have a strong personality. I compensate for this by positioning myself accordingly.
If I’m hanging out with someone in the infusion room, I lower my chair and lean back. If I’m tired, I’ll lay my head on the bed.
This tactic was inspired by psychologist’s suggested approach to children and the basic understanding that in time of crisis people REGRESS significantly.
It is not a fair assumption to think that a person who has been struggling with disease processes would possess the same level of thinking they would under “normal” circumstances.
I don’t think this is humanly possible.
Any disrespect to this in the wrong situation may be cause for a significant conflict.
There is no meaningful communication happening when two people feel like they are backed into a wall. Both may respond like caged animals experiencing the well known human adaptation of “fight or flight.”
I hope people remember this, and maybe, try to implement it. If you can’t, maybe you’ll understand this, KNOW YOUR ROLE.

2 comments:

Dani said...

I love you , you always have good advice and know how to put things

Anonymous said...

wow! profoundly useful post! i have always thought/learned that you need to make eye contact in order to reach anyone, but you are so right-on about the power dynamics that shape the course of heavy conversation and can shut it down if you come on too strong and don't give some control to the recipient of hard information, especially when the content itself is control-sapping (doctors restricting patients' activities, parents informing their kids about their illness, etc.). such a great post!!! rock on! - Lola