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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Tuesday, May 11, 2010

The Elephant in the Room


 on weight gain, I've come to find, is a social taboo far exceeding any comment regarding cancer, baldness, and/or dare I say, warts or a second head.
 It's true.
 It seems like people would rather discuss religion, politics, or prostitution to avoid what is so clearly staring them in the face. 
What's clearly staring them in the face is my face, my cushionoid moon face, along with my chins, neck wrinkles, and 50 extra lbs. 
I know it must be an off limits taboo subject worse than commenting about someone who is openly inappropriately intoxicated because I have the upper hand. 
A lot of times recently, Before I speak, I'm not recognized.
If you haven't seen the metamorphesis stage by stage, you won't recognize me. 
I don't look like me. That's how much I've changed. That's how much weight I've gained. 
I feel like I'm undergoing one of those social experiments when a thin beautiful actress is 

put in a fat suit to endure the experience.
 I say hello to so and so who I haven't seen in months but I've known my whole life and there's a pause.
They're probably putting two and two together. I certainly sound like Hillary. I'm with Hillary's family, but could it REALLY be her?
Then, sometimes there's a flinch like I've flicked them in the face, some just a momentary look of shock, and many (thank you all of you for reading me) remain stone faced as if nothing is different at all. 
What never ever happens is someone acknowledging the "elephant in the room" (aka me) and that they didn't recognize me. I assume it's because then they'd have to acknowledge my weight gain and that's uncomfortable. 
It could cause a social faux pas. 
It's like never acknowledging that there is only one black or white person in the room. 
We all see the person is a different color. 
They're definately sticking out. 
You can't miss the obvious, but don't let any comment, especially a joke, escape. 
Way to risky socially. I've made this mistake.
Are any of your surprised about that?
I'd like to take a moment to thank all those who do dare comment, even awkwardly. 
It's helping remove a barrier, a stigma, saying you need to be ashamed. 
Why else would you avoid a subject?
 I don't want to be ashamed of who I am or how I look. I don't want to feel like I need to hide myself due to a side effect of therapy. I don't need another obstacle, but so many people do feel this way. 
Body image issues play a huge role in coping with disease. Not only do you not feel like yourself, you don't even look like yourself. 
This often happens alongside the loss of significant roles.
 Suddenly you're diagnosed with cancer, you are no longer healthy, vibrant, and immortal. You are probably taking a leave from your work, you are no longer your title. You are no longer able to be the wife, mother, daughter, friend you were before. Your whole life and lifestyle has changed. 
Then you need to cope with the loss of a breast, kidney, or your hair!
Suddenly you're wondering, "who the hell am I?" You're still you but naked and vulnerable after everything that exemplified you before, everything that signified stability previously, has been stripped away.
 And then you can't even talk about it!
 Nope don't mention "the c word" or you'll make the person squirm. 
It's like replying "bad" to an informal "How are you?". 
We all know the answer is expected to be "fine." Any other answer is wrong. It's crossing a boundary. 
Well, sometimes for progress those boundaries just need to be breached.
 I'm lucky I have a support group that acknowledges what's happening to my body instead of telling me , "oh, you look fine" or "it's not THAT bad.". 
It is as bad as I feel it is. 
Some of the most encouraging, comforting comments have been made in passing like "your big face makes you look like you're always smiling.". 
I do think obviously sensitive subjects need to be approuched with sensitivity and empathy. Not everyone is me, not everyone would appreciate hearing about the terrible, obvious side effects they have to endure. 
Even I may burst out crying at a comment on the wrong day but if you feel you are the right person in the right situation to say something, I say you should. 
Physical side effects of treatment are isolating and its only made worse when those you love, and even those you just know, refuse to ackowledge the change.
Battling disease is scary, lonely, and isolating enough when physical signs reveal your secret to everybody but nobody acknowledges the change. 
I'm left feeling over exposed, like I've done something wrong, I've shown something I should have hidden.
 I don't want to feel like that. Not now. Not when I need to love and accept my body to facilitate healing. 
I say it is time to "go there". Push the envelope and expand the boundaries of conversation so differences are acknowledged and thereby accepted.


Jennie said...

Hillary, I've learned so much from reading your blog. I so appreciate your frank honesty and that you take things head-on. My cousin goes in tomorrow for lung surgery - it may be cancer and she has spots in both of them. We're all scared to death but maybe I'll be able to do a better job supporting her because of you. Thank you. You're always in my prayers.

Anonymous said...

You amaze me girl!! But then, you have amazed me from the moment I first met you. I like your candor ... directness ... & wit. As for the elephant in the room ... I don't know much about social faux pas ... what I do believe is that weight is a vastly over rated issue. I think that it simply doesn't matter to the folks who truly care about you. I've learned as a I age, that a lot of things that used to be important, were just over rated. No matter what ... those of us who care about you want only 1 thing for you ... good health & a long, happy life.

Take care ... & call if you need anything.