Saturday, June 20, 2009

Sense and Sensibility -- and Courage

People who fight any sort of condition -- which is most people nowadays -- have to reside deep in their hearts to find that all-too-rare commodity: courage. Those with medical afflictions have to find the best advocates: ourselves.


My postings have focused on how to navigate the medical system, which is a never-ending gauntlet of doctors and medical tests. This posting is about following your senses to know which family members and friends to "fire" if the relationship is not worth saving, as well as the courage to deal with those who lack sensibility, or empathy.

For me, living through the breast cancer experience had been such an enormously challenging undertaking that I would find myself crying in the car, sobbing in the bathroom, and bleary eyed half the time, but all the while, I knew that deep down inside, I had carte blanche to rely on the best advocate in the world: myself.


As difficult as it is to listen to doctors who won't listen to us, it is much harder when the people who won't listen to you are closer to your heart. I'm speaking about people who are supposed to love us -- family and friends -- but they abandon or reject us during our time of greatest need. These individuals' lack of sensibility hurts us more than they know, or care to know.

When I was diagnosed with cancer and started making those dreaded phone calls, most of my friends and family were very supportive and had great empathy.

For this, I will always be grateful.

But the "C" word is so overwhelming to some, that the pain of a friend or family member rejecting me was too much to bear. One so-called friend told me he was "honored that I felt I could confide in him," and then I didn't hear from him for four months. Family who I thought would come to my aid instead refused to call me or denied my symptoms.


Equally distressing are those who stay in touch with us on our journey but out of touch with our basic needs. These individuals choose denial over the truth, in short minimize our suffering instead of acknowledging our voices of pain and anger and grief. This decision isn't out of malice; instead, it based on pure selfishness -- so they don't have to deal with the emotional and physical "mess" that comes with illness.

And as anyone with a serious ailment knows, illness is messy -- physically, emotionally, and psychologically. And, unfortunately, many people don't want to deal with the mess. Instead, they like to put things into nice, tight little packages, where they do not have to deal with the pain of their loved ones.

I'll give a few examples:

**One relative called one of my surgeries a "procedure," instead of what it actually was: surgery.

**One "friend" used my vulnerability to try to convert me to her religion. (Didn't work, so sorry.)

**Other relatives refused to call me, talk to me, or visit me. I had become somewhat of a medical pariah.

**A few people would allow me to spend hours in the hospital waiting for them to finally show up. They threw me a bone by doing some things around the house to "help" me. When I expressed my anger at having to wait for them so long to visit, they essentially said I was ungrateful.

**To this day, when I talk to a couple of family members, they do not acknowledge the cancer. One person said, "You are OVER it," while another can't even say or listen to the word "cancer." For this latter individual, all I can say is the following: "cancer, cancer, cancer, cancer, cancer."

A two-syllable word that rolls easily over the tongue, but is so difficult to digest.

This is why being your own self-advocate is so important. If a person believes that such toxic individuals will lift him or her up, then he/she is the one in denial.

It's time to call the shots in how we live our lives, and that means surrounding ourselves with supportive individuals, being supportive people ourselves, and confronting/firing those so-called well-meaning individuals who deny the very essence of our conditions.

It takes courage to do so, but then again, fighting an illness does, too.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices'>http://www.amazon.com/Voices-Breast-Cancer-Companion-Strength/dp/1934184020/ref=sr_1_1?ie=UTF8&s=books&qid=1242657371&sr=1-1">Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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2 comments:

  1. Oh, I am so sad you had to go through some of those things! It always hurts more when lack of support comes from those you love and closest with. Im glad you had people who were supportive, but sometimes just ONE unsupportive/hurtful person can have the power to deflate the help that 10 nice people just gave :). I think your book will be so helpful to those battling cancer AND those in the support roles. Sometimes, people don't even realize what they are saying and doing is 'wrong'... but if they LISTEN, really listen, they will learn what that person needs. Because when someone is sick, it is about THEM, not the other person. I cant believe s/one called you 'ungrateful' when you confronted them about waiting for their visit!! yeah, thats the time they should say "you're right...i was ____ (fill in the blank with scared/uncomfortable/upset).

    A very truthful and wondeful post!

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  2. Thanks for your insightful comment, Alicia!! I know that so many people go through the same thing I did. And I was also lucky that many people were very supportive, as well.

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