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, February 22, 2009

Ugly Duckling


It’s funny how people’s looks towards me change when I transform from cancer’s mistress back into an attractive woman.
It’s like the ugly duckling into a swan.
I imagine it’s like going from black to white.
It’s like Santa saying “Yes, Virginia, you are a hottie.”
Or, maybe, you can look at it in the opposite manner.
It’s like going from white to black (Check out Black Like Me, possibly the best account of one man anthropological research ever).
Or, in the case of so many others like me, going from healthy to sick or young and vibrant to disbled and bald.
I forgot my mask and gloves at home when I ran out of the house today.
Jon, Xander and I were going on a family date.
We haven’t done this possibly last March, when we became very scared regarding our financial situation and our dual upcoming procedures (my transplant and his bowel surgery).
We cut some serious costs prior to July, when I became sick and he underwent his surgery.
We haven’t been out to eat since.
So we went to The Weathervane, a New England lifestyle landmark, for seafood.
I asked to be sat in a back corner, but we still got surrounded.
What I hadn’t anticipated was the looks, the downright stares from some of the men, and the smiles from some of the woman.
Then we went to Best Buy, and while sitting, waiting, in the car, X decides he was to go to the Bathroom. I rush him in with my scarf stragetically placed over my mouth and nose.
We get in, I send him into the men’s room, and I hide outside in a corner, dropping the scarf from my face and dutifully pacing with my cell phone.
Everytime the door would open I would stop and look to see if it was X done with his business.
The first six times the door opened it was not him, but it was usually a man with a very similar reaction.
I look up and think “Oh, not X.”
He looks up and looks back.
I quickly avert my gaze and put my head down.
Or
We lock eyes.
I go to put my head down but catch their smile, and well, it’s just not polite not to smile back. I smile, while putting my head down and maybe peek back up for a second look (I mean hey, I like to look at attractive things everywhere. It’s like art.)
What’s bad is if we catch each other taking that second look. Then I have to quickly hurry back into whatever fake distraction I was enjoying.
These events though, NEVER happen when I’m bald, masked, or gloved.
Okay I wouldn’t say never.
They most often happen between other cancer patients and I.
Usually, I get a glance with a very different reaction. One that’s quickly followed by looking away, trying to remain emotionless and trying not to appear curious, embarrassed that they’ve been caught.
I smile when this happens.
Yes, you’re curious. I know.
Some people stare, investigating the features they can see and possibly imagining the rest. It’s like a man, or woman, checking out the outside to get an imaginary image of what’s underneath.
Others stare with a disctinct curiosity then they’ll wander close giving me glimpses in hopes we can engage in conversation.
This is one of my favorite approaches. I know what you want to ask. I’ll tell you upfront. I’ll start the conversation.
However, it’s a whole lot different than a man looking and screaming “Damn” with his eyes.
That transformation is a very difficult side effect to deal with, not only are you coping with external changes in your body that are downright dewomaizing, everybody is staring.
And that’s not even the largest of your problems, since what is going inside, physically and emotionally, is so much worse.
Those problems are NOT written all over your body, and thus, they are so easy for the outside world to ignore.
It’s easy to think that NO ONE understands, and yes, those who do are those who are sick as well, anybody with a debilitating, possibly life threatening disease shares very similar fears and an understanding nonpareil to a healthy person.
Coping for an ill person needs to address the huge changes in EVERYTHING. It’s an entire life change in the span of minutes.
One minute you’re healthy and vibrant, you’re the “new talent,” then you’re the “sick girl.” People start referring to you as “That poor girl with whatever.”
In some cases, you become notorious for your disease and your suffering. Your story becomes almost an urban legend before you ever open your mouth to a stranger or even an acquaintance.
The whole process is obviously intimidating, and possibly paralyzing due to fear.
I hope you can all remember this next time you are faced with the knowledge that anybody has been diagnosed with a serious illness.

5 comments:

Anonymous said...

WOW!! On several levels ... the pictures are beatuful ... but the message to us all was exquisite. Your insights continue to amaze me!! Thank you for sharing them. I think you make the world a better place by being here & sharing those insights with us. Thanks Hill. You make me proud!!

F

PS: If you don't mind a compliment from an old man ... you are a fox girl!! Love that smile!!

DebA said...

When I was young I had a pregnancy that ended with the birth of my second child who was born with anencephaly. The doctor told me that my child would be born with a condition that would render her incompatible with life outside of the womb...That was a lot to digest, took me several seconds to even understand. Anyway I lived in a small town and more than not people would walk up to me after the birth and death of my daughter and say things like "oh when was your baby born? boy or girl" or some other familiar question from a non family member. I knew in my heart that they meant well and often I would struggle to gently tell these folks that she had died. Some days I would have no reserves and I distinctly recall one day looking a man (I never liked him much anyway) with such a benign question and saying "the baby is dead". The silence was horrible, his expression only matched my anxiety. But no words would come. I decided that I was not ready for public time and stayed home for a while.

I hear what you are saying and it is such a good thing to hear. I, however, often feel for people that are in your shoes and I get this overwhelming desire to do something. I wonder what it is that you bring out in me or any of us. I know for me this blog has been about meeting you, wanting to understand you and caring for you. But I also want desperately to respect you. Thanks for trying to educate me. You are brave.

Bekah said...

Absolutely LOVE it.

So much truth Hillary, you are teachin' 'em all, one at a time.

Hope you all are staying warm.

Sending Love,

B

andyson said...

My hairs all grown back now. I even had to get a haircut last week. Fortunately for me the rads are only in my chest, so I won't lose the new do. But it's changed color so much from what it was before. It was auburn/red-ish, now it's dark brown/black.

I agree with what you said about locking eyes with people, except I would keep staring back at the people in the stores, waiting to see if they'd say anything.

Most don't.

- B

Heather said...

you are beautiful inside and out. i'm so glad to have found you and your blog!