DeGrazia's A Beautiful Burden

Some of you may recall the origin of the book's title.  When we lived in Arizona in the '80s, we lived very close to the DeGrazia Studio on Swan Road.  One of Ted DeGrazia's paintings is called "A Beautiful Burden."  Mom felt the picture to be symbolic of her own experience with cancer.  In her own words:

The Yul Brynner Head and Neck Cancer Foundation is focusing on the emotions and thoughts stimulated by this DeGrazia print.  So many head and neck cancer patients deal with facial difference in appearance, function, and adaptation.  They must work daily to transform the painful, unpleasant, or disturbing into the acceptable, and perhaps even the beautiful.  Their ingenuity ranges from designer hair styles to camouflage scarring, striking head turbans and baseball caps to bolster their self-esteem during chemotherapy and hair loss, color-coordinated eye and face patches, painful prosthetic appliances to replace ears, eyes, or nose.  Each of these people, like the lovely young girl, is doing their best for each remaining day of his or her life-- celebrating the beauty that is possible in life amidst pain and seemingly impossible challenges.

Every individual has a beautiful burden, of some sort, in their own life.

It's a beautiful image and doubly symbolic to me as mom and I must have stood in front of this image together at the studio twenty years ago, not knowing where we'd be today.

I also wanted to note that mom intended for any proceeds of the book to go to the Yul Brynner Research Foundation.  Now they have a new name, the Head and Neck Cancer Alliance, but operate in the same spirit as the organization my mom served as Executive Director up until her passing.  They do have a link to donate to the site via paypal if you'd like to contribute to the cause.

Check out the organization's History page under the About Us tab.  I couldn't link to it, but hope they don't mind a teaser ending with the reference to mom:

The Yul Brynner Head and Neck Cancer Foundation The Yul Brynner Head and Neck Cancer Foundation was created by the late actor after an abnormality was found on his vocal chord in the 1980s. With the combined vision of Yul Brynner and the knowledge and experience of Dr. George Sisson, the Yul Brynner Foundation was incorporated in Chicago in 1984 for the purpose of educating the public about the harmful effects of tobacco and its relationship to mouth and throat cancer...
...Janet Trever, who was a three-time cancer victim, began her efforts as Executive Director of the Foundation in the early 1990s and continued her mission until the day she died of this disease in 1999.

from http://www.headandneck.org/psaflash.htm and click on About Us then History tab.


More on Yul in posts to come...

Happy Birthday Jan Jan!

Forgive me mother, for I am lame.

Mom in the Philippines circa 1978.

Over 10 years ago my mother passed away after a 50 year long relationship with cancer.  January 15, 1999 to be precise.  It was her dying wish that her memoir/resource book be published.  Her book was titled A Beautiful Burden: Surviving Cancer Across a Lifetime.  She cared deeply about health and wellness of cancer survivors, as well as advocacy for those with facial differences.
Since her passing, let me be honest, I've done nothing about her book.  Sure, I sent it on to her friends who offered to edit.  I made some copies and converted files from time to time.  But really I've done nothing legitimate to get her book published.  Her book has taken on a meaning of burden all its own for me.  One she likely never intended.

Two of Janet's grandchildren Ellie and Trever with the manuscript
binder and a strawberry basket she used for inspiration while writing.

Today is her birthday, which has me thinking...you know, she never knew what the future would be like for any of us.  If she was around today, I imagine her book would be available in print.  She'd have a Facebook account to keep track of the grand kids and Tweeting with her Denver University friends.  She fancied herself a networker long before the term "Social Network" became what it is today.  Blogging would have come naturally to her.


So in honor of Janet Trever on her 67th birthday, I'd like to officially declare this blog open and welcome to receive any of her old friends, family, and bring her delightful insights, story, and resources for coping with cancer and a facially different lifestyle to a new generation.

So...TO THE BOOK!!!

I leave you with the Dedication she wrote herself:

To Virginia Satir, Lucy Meryl Tullis, and Joyce Fossen.  All three were wonderful teachers and mentors for me and have passed on from this plane of existence.  Also to Yul Brynner; I never met him before his death in 1985, but he has certainly influenced my life experience.  I like to talk to the four of them during the day as their presences watch over me.  Someday I envision they will be welcoming me to the other side...now that will really be something to write about.

Me on the left with my mom at Sun Moon Lake, Taiwan.