Pinky Pie

Shameless self-promotion & me

Posted on: October 6, 2009

Now on PBS

Now on PBS

I’m on the PBS Now program this weekend. As they say, check your local listings.

I was trying to decide today whether to write about the Packers football game last night, my pending hair loss or go straight for the shameless self-promotion.

Clearly, my shameless self won, which could be a song to the tune of Hank Williams’ “Your Cheating Heart.” (I’ve been quoting a lot of songs in my blog this week so I couldn’t resist.)

The promotion is for my appearance (with others) on Now, the Public Broadcasting System (PBS) program that looks at issues in depth. Depending on where you live, it will be on Friday evening, Saturday or Sunday.

In La Crosse, Wisconsin, where I live, it will be on at 9 a.m. Sunday, which happens to be my birthday. Some of you will see it before me if it comes on Friday or Saturday where you live.

The issue is the subject of Advance directives, which used to be called living wills. The idea is that if anything should happen to any of us and we cannot speak for ourselves, we have something in writing that describes the kind of medical care we would want.  Or at least we have expressed it to our family or health care agent.

Some of us may want absolutely everything done that could be done if there is even the tiniest glimmer of hope.

I personally don’t want to live on machines indefinitely in the hope that somehow, somewhere, I might be pulled back to live. My brain is very important to me.

This is how I described it in a previous blog entry, The Life Panel & Me, “Frankly, I don’t want anyone wiping my tush indefinitely if I can’t eventually return to that fun activity myself. That measure of quality of life is very important to me.”

Some have questioned how wiping my tush could be considered a fun activity, but the point is I don’t want to have people gathering around a body that does not work any longer and where there is no mind. We aren’t there yet, but I want people around me go on with their lives. Have fun (with or without toilet paper).

Without that information given to my family, my doctors might have no choice but to continue on and on and on. Please don’t do that.

The reason Now came to La Crosse of all places is that we unwittingly became the “birth place” of the “death panel” misrepresentation.

What happened is that both medical centers in La Crosse have worked very hard to encourage adults to have advance directives. We have been so successful, that local medical leaders encouraged reimbursement for these professional services to be included in the health care reform bill.

See the Washington Post article about La Crosse

http://www.washingtonpost.com/wp-dyn/content/article/2009/09/03/AR2009090303833.html

I firmly believe some folks with malice in their hearts called this important activity a death panel simply to kill the entire health care reform movement. They suggested the government wanted to kill off Grandma, etc.

An advance directive is anything but that.

With my husband, who is my health care “agent,” I went through the process of creating a more advanced advance directive with questions that pertained to my particularly medical conditions.

Maria Hinahosa, the show’s senior correspondent, interviewed us the next day. She wanted to know if I felt I had appeared at a death panel. I said it was anything but a death panel. It was a “life panel.”

The process allowed me to express my values, what is important to me, etc. Nobody told me what to say or feel. I am not a grandma, but I did not feel anyone was trying to kill me off.

She also asked me how I felt to be facing my death. I said I can’t think that and I don’t think that way. I have to believe I’m gong through treatment for a very positive reason – be a 20 or 30 or 40 year breast cancer survivor.

But the truth is we are all facing our death, we just don’t know when it will be.

And I’m hoping people who really think this is a death panel don’t call me up and yell at me on Sunday.

As I said, it airs in La Crosse on my birthday, and I intend to celebrate every single birthday I get. As we all should.

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5 Responses to "Shameless self-promotion & me"

I’m shamelessly in favor of shameless self-promotion.

Looking forward to hearing what the “sound byte machine” has to say.

Love ya, Sis.

I, too am looking forward to your words on Sunday and have I told you lately that I love you?

Dear Pinky Pie,

We don’t have a working television. I will try to find it on youtube later, ok? Get someone to put it out there.

I have something I picked up for you in New York, not knowing it’s your birthday soon.

You don’t need hair to be beautiful (remember Yul Brenner? Sinead O’Connor? my fiance Jim? and all my friends with wigs and scarves whom you don’t know?)
Love.

Thanks for talking to the cameras. I think your writings and the video clip demonstrated many of the amazing parts fo the La Crosse Respecting Choices project. As a hospice & palliative care physician I get to see patients and families across the preparedness spectrum and find those that have had open frequent conversations tend to have less anxiety and stress over their decision making.

Thanks again for participating in the PBS show.

Susan,
I was very grateful to see you and your husband on NOW Friday nightl It was a tremendous program to help the country know and think more about end of life decisions……. setting the record straight concerning the false accusations stating “death panels” to frighten people when we’re getting close to have health reform.

Also thanks for your helpful phone conversation with regard to publicity for my newly published poetry and painting book, CATHEDRALS OF THE HEART. Great testimonials are coming in stating how it is touching the hearts and minds of people.

May God grant you peace and healing as you battle cancer.

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