Posts Tagged ‘survivor’

Hierarchy

Last week I read an excellent post from Marie Ennis O'Connor on "Is There a Hierarchy Among Cancer Survivors?"

Then this week that discussion was followed by another excellent post and discusssion at Regrounding. Even though the topic has been quite thoroughly and thoughtfully covered in these previous posts, I'd like to add a bit.  

So, is there a herarchy among cancer survivors? Is there one in breast cancer circles?

Having spoken hundreds of times to quite diverse cancer support groups, as well as to oncologists, nurses, and others in the cancer community, I have experienced many layers of:

  • You didn't have chemo, so what gives you the right?
  • Your lymph nodes were not positive, so you're home free.
  • You're lucky it was only breast cancer.
  • You aren't Stage IV. Everything else is a piece of cake.
  • You didn't suffer as much with your treatment; you didn't have chemo before Zofran: you didn't burn and peel with your radiation.  
  • You can't call yourself a victim; that shows you are weak.
  • You can't use battle words; or, you must use battle language.
  • Your chronic fatigue syndrome didn't totally put you in bed for years. (Forgive my straying into another disease. But I've heard this a lot.)
  • You must identify as "survivor," "thrivor." "victor," "totally made it." (Forget about the part that breast cancer can recur years later.)
  • We must be brave, courageous – keep our friends, family, casual passers-by reassured.

 

I've also lived quite a long time. Guess that puts me pushing toward the top of the hierarchy of "I'm older than you and I know better." But maybe I won't play that card, even though with all of this well-earned gray hair and many wrinkles, it is terribly tempting. 🙂 

Let me repeat some of what I commented on Marie's blog (with amplification):

There is always hierarchy. Everywhere. In every circle – family, sports, health, illness, religion, politics, young, old, male, female.

I don’t know if it is more prevalent among women than men; it may seem so in junior high, but it probably just exists in different arenas.

There is something within us that seems to compel us to play one-upmanship. In disease circles, maybe it is self-preservation. If I can figure out what stupid thing you did to make yourself sick or caused yourself to die, I can avoid that and save myself indefinitely.

I try to guard myself against participating in hierarchical maneuvers, but certainly don’t always succeed. I have deservedly been put in my place a number of times.

When I am the recipient, my hope is always that I can find the grace to give the other person the benefit of the doubt – realizing that there is no way I can walk in her shoes or divine her motives or identify her. I simply do not know why he or she has chosen that path or why he or she needs to de-elevate me. 

On the other hand, no one can put me down if I won’t go down.

A Final Poem for October

Affirmation

The breasts are gone
but I am
whole

Disfigurement
need not include
my soul

(Excerpted from Fine Black Lines, copyright 1993, 2003 Lois Tschetter Hjelmstad)

 

 

Poem for My Flat Chest

In keeping with my recent posts on whether or not to reconstruct/replace one's breasts after a mastectomy, I offer one of my poems:

Double Amputee

I have looked this way
before–
flat-chested, pencil-thin

when I was ten

Strange it is to seem
a sexless child
again

(Too bad about
the graying hair
and slightly sagging chin)

(Excerpted from Fine Black LIines (c) 1993, 2003 Lois Tschetter Hjelmstad)

Reconstructed Breasts?

On my birthday last week, Nancy published a guest post that I had written for her. It was an especially nice thing for my birthday. I include an excerpt here:

I missed my left breast mightily. I struggled for days, weeks, months to make my front look okay. I stuffed the empty side of my bra with crumpled paper; my bosom rustled. I stuffed it with socks; they lumped. I tried filling homemade bags with rice; they sagged more than my right breast.

It was a bit easier after my second mastectomy fourteen months later. Whatever I tried, at least the two sides matched. But by then, lymphedema had set into my left arm and torso—wearing a bra was not an option, although I did try. I bought a mastectomy bra and two heavy matching prostheses. I wore them once, but I was so miserable that I donated the whole contraption to another woman.

Besides, something within me rebelled at hanging an uncomfortable harness on my frame—so I could put something uncomfortable in it, so that those around me were not uncomfortable. God forbid they should be reminded of their mortality.

What to do?  

Read the rest of the post here:  Nancy

And how did you handle a breastless chest?

 

Just Stay Positive?

"You will be just fine" has long been a problem for me. No matter what horrendous circumstance one is facing, what one needs is support and validation, not cheer-leading. Discounting a person's feelings and implying that everything can be solved by being positive does a great disservice to the ill or injured or depressed or bereaved.

But at one time or another, I suspect we have all said it. I know I have. Do we say it to reassure others? To reassure ourselves? To deny what's going on?

And beyond that, there is "Just stay positive." Another soul shrinker that:

  • implies you caused your own cancer with your negativity
  • burdens you with being in charge of getting well
  • causes infinite pain if cancer eats at you until you die

I have a poem to share with you:

You Will Be Just Fine

Please do not trivialize
my suffering.

You who are healthy
You whose mortaility is as yet
Only dimly preceived–
Please do not say
"You will be just fine."

I may well be–someday–
But I do not know…
You do not know…

(Excerpted from Fine Black Lines: Reflections on Facing Cancer, Fear and Loneliness, (c) 1993, 2003 Lois Tschetter Hjelmstad. All rights reserved.)

And tell me why you think we keep saying, "You will be just fine."