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, April 21, 2009

I have problems

I have a problem.
Well, I have many problems.
This one is special.
It’s not my dirty mouth.
I know some of you may argue that’s my biggest problem, but the picture to the right is from graft vs. host disease, a chronic, lifelong side effect of my transplant.
Yes, that’s my tongue.
It’s scarred.
I have problems.
I went to college in New York.
I was always fascinated with the inner city.
I wanted to understand it.
I didn’t understand it.
I grew up in NH in the country.
I wanted to understand a world as culturally different as possible from my sheltered “country estate.”
I decided that place existed, within driving distance from my family, in NY, Bronx and Uptown Manhattan specifically.
Really, use your imagination, how much different can you get?
The area where Youth Ministries for Peace and Justice (YMPJ) resides boasts the least amount of “green space” (aka trees or grass) than just about anywhere in the U.S.
It also boasts a shooting that occurred because the undercover police hired to patrol the area at night were so scared and anxious they assumed a man holding his wallet was holding a gun.
There are so many crimes in the area people are sometimes are assumed guilty until proven innocent.
To fit in, I adjusted my behavior.
I adopted an accent.
Looking like I do, speaking like I’m educated, talking like I’m all white, “prissy,” and country, just wasn’t going to help me understand.
I needed to assimilate, just a little.
My friends at college, they love me for me. They love that I’m country, that I didn’t understand their culture, but that I really wanted to.
I really wanted to know what was great about other cultures within the U.S.
I really wanted to know the obstacles they face in being successful and meeting their basic needs.
To do this, I decided to fit in.
I adopted an accent.
I call it New Yorican.
If I speak with this accent, I’m no longer “white,” “prissy,” or “country.”
I’m an uptown girl, assumed to be born and raised in the Bronx by Hispanic immigrants.
That’s all I do. I change my accent then the assumption of my whole life and background changes. I also change some body language. It’s simple.
I’d use the accent when I felt unsafe. I’d use it when I was tense and I wanted to fit in.
Now, I can’t get rid of it.
It’s a problem.
People don’t recognize the way I talk as an accent.
They see it as an attitude.
Yes, it is all attitude, but I have it because I adopted an accent.
I can’t get rid of it.
It comes out of my mouth when I’m tense or nervous, just like I trained myself to do.
I would use it triaging in the emergency department. Patients are more relaxed if they think you understand where they are coming from and who you are. I used it waking around the Bronx with The Visiting Nurse to talk to the groups of guys outside the projects.
I’d holler to them to get the door because I was going to take care of their moms.
Except, I didn’t say it like that.
So when I’m all ready nervous and stressed I get an out of control accent that makes me sound like I’m straight out of the ghetto.
The way I look and the way I am speaking do not belong together.
Then it gets worse.
When I get nervous, from all my treatment, my menopause, my gvhd, and now the steroids I’m taking, I get hot flashes.
This isn’t just being hot.
It is burning from the inside out.
First, I’m reacting to something that makes me nervous. I’m intimidated. I’m scared and feeling threatened for whatever reason.
Then, this terrible accent kicks in. One that I feel makes me sound silly, but tough. It makes me sound like I am uneducated with an attitude.
Lastly, just for fun, my body gets hot. I feel like I’m burning.
I start stripping off my clothes.
I can’t take it!
The heat is too much.
I start with fanning myself.
But then I start to sweat. I’ll take off a layer, my sweater or blazer.
That doesn’t work.
I dress in layers for this exact problem.
Sometimes, I forget that though I know I am wearing a tank top underneath my t-shirt or shell, the rest of the world doesn’t.
So when I’m nervous and talking in slang, I simultaneously decide my shirt needs to go.
To the outsider, I imagine it looks like I’m stripping, completely stripping, and soon I’ll be down to my bra.
I must look like I’ve lost my mind.
One time, I just wanted to try a shirt on. I had a tank top under my existing shirt. I told my friends I was trying a shirt on, then walking to a mirror in the store and stripped off my overshirt.
I’ve never seen my friends move so fast.
You’d think they were hustling and the cops were coming.
They scattered and tried to tell everybody in the store they had no idea who I was.
I’d lost my mind and decided to strip in the mall.
Thanks, Maggie and Laurette. I love you two too.
These are my problems.
I get nervous. I start speaking with an accent nobody recognizes so they think I’m getting mean. Then I get hot flashes and can’t control dropping clothing to make myself comfortable.
Then I look like a crazy woman.

1 comment:

Anonymous said...

Hi Hillary. I would love to talk to you about stem cell transplants. Blaine will need an autologous stem cell transplant this fall, and it scares me to death. I understand that there is an option to do a mini one?(nonmyeloblative). I would love to know whatever you understand about both. I understand you have gone through the donor route and that you are having ghd issues. You sure are tough. Thanks for the blog. I'd love to set a time to talk to you. Thanks. Marleigh Thanks. Marleigh