Alice
Alice Pleasance Liddell, Summer 1858. Courtesy of © National Portrait Gallery, London
In the year 2143, will we be able to say Harry Potter lives, Harry Potter is global, or even thatHarry Potter’s enduring legacy continues to inspire all age groups?
None of us really know for sure what will happen to Harry Potter between now and then. What you should know is that there is one book, which, 146 years after it was first published in 1865, has accomplished all these things and is also one of the most loved books in today’s world. The book to which I am referring is of course Alice’s Adventures in Wonderland, which I like to call “Alice.”
A great many people saw Tim Burton’s Alice in Wonderland movie, which, despite its short theatrical window, grossed $1.02 billion worldwide. That was just an appetizer in comparison to the massive global run up to “Alice’s” 150th birthday in the fall of 2015.
Much like the closing ceremony of one Olympics and the heralding of the next one, the road to “Alice’s” sesquicentennial ceremony has already inspired a magnificent exhibition to be seen in some of the world’s greatest museums, with more exhibitions and events in the works along the way to the lighting of “Alice’s” torch in four years time.
As a passionate “Alice” fan and a relative of Alice Pleasance Liddell, the original inspiration for the book, I never tire of immersing myself in the rich culture that was born from Lewis Carroll’s fantastical dream world. In every age since the 19th century, “Alice” has inspired artists and scientists from the worlds of mathematics, fine arts, literature, puzzles, games, toys, film, dance, music, poetry, video games, photography, cartooning, and well, let’s just say you’ve got your work cut out, Harry Potter!
So now…… are you ready for a little more tea?
Come Away From Her (After Lewis Carroll) 2003 — Kiki Smith Acrylic on Paper. Courtesy of © ULAE, Inc.
I had the great pleasure of chatting with Eleanor Clayton, Assistant Curator of the Tate Liverpool’s fantastical new Alice In Wonderland exhibition currently showing in England before heading out to other parts of Europe.
“Alice” lives on — Why is “Alice” so inspiring to all ages and to generation after generation?
One of the things we notice about “Alice” is that it is one of the few books that have never been out of print since it was first published. It has literally stayed in fashion the entire way since 1865. “Alice” just continues to appeal. I think that it’s the nature of the story. You have a child heroine. Alice is beset by trials and tribulations that she has to go through and yet she always remains calm. Whether it’s the Mad Hatter or the Queen (trying to chop off her head), she meets the challenge and prevails. There is something about Alice’s journey that everyone can relate to.
The other thing that we have actually focused a lot on in the exhibition is that when the original manuscript was created, Charles Dodgson (Lewis Carroll) included pictures. The pictures were an integral part of the story. There aren’t actually a lot of descriptions of the book’s characters including Alice. Instead, on the first page of the original manuscript, there is a picture of Alice. It doesn’t tell us that Alice wears this kind of a dress or has this kind of hair. It leaves it very open for generation after generation to reinvent Alice. In our exhibition there are Alices from the 1930’s, Alices from the 1960’s, and even more contemporary Alices. Each generation has been able to reinvent Alice in the style of that generation. This says something about the richness of the book too. Each generation finds it appealing and wants to contribute something new.
How many Alices do you have in total in the exhibition?
In just one room we have over 40 illustrated editions of the book from 1907 onwards. I would say we have over a hundred Alices (character depictions) in the exhibition.
“Alice” is global — How represented is “Alice” on a global basis throughout the exhibition?
We have illustrated editions from the western world but we also have Eastern European and Russian illustrated editions. We have work by an artist called Nalini Malani, who’s done a series called Living in Alice Time. She finds in Alice a figure that relates to the political situation in India and her work is representative of that. Unfortunately, we don’t have “Alices” from Australia and New Zealand but we do have most of the Northern Hemisphere covered.
Alice’s Adventures Underground, the original manuscript, was handwritten and hand illustrated by Lewis Carroll and presented to Alice Liddell as an early Christmas gift. How significant is this manuscript?
I think it is very significant. We’ve found it incredibly interesting as an early form of book art, which became hugely popular in the 1860’s and beyond. The images are such an integral part of the original manuscript that it is a visual work of art in itself. Even Carroll’s text has visual elements. In the 19th century, art was about paintings, and books were books, but when you look at the original manuscript it is definitely an art object in itself, which is why it is really significant. Later on after the “Alice” books were published, Carroll published a facsimile of the original manuscript.
Alice in Wonderland Magic Lantern Slides 1900 - 1925. Courtesy of © University of Exeter
The manuscript’s sale by Alice Pleasance Liddell in 1928 for £15,400 ($77,000) set a new auction record for a book at that time in history, not to mention the fact that the buyer was an American, Dr. A. S. W. Rosenbach.
The book has now become so iconic that the original manuscript itself is almost like a relic. We are very lucky to be exhibiting it. It has only left the British Library once (for a trip to New York City) since it was presented as a gift to the British Library by a group of American businessmen. The security we have had to go through to protect it is incredible. It has to be kept in a metal (versus wooden) vitrine with glass that is thicker than 11 millimeters. It also has to have two special Abloy locks. Then there is CCTV on it and security guards. It’s this little book the size of a hand. People come into the exhibit and are drawn to it. Then they very quickly fall down the rabbit hole into all of these artifacts that have built up because of this one little book.
What will people like most about the exhibition?
Children will see the original manuscript, Tenniel’s drawings, toys and games that were around in the 19th century after the publication of the book. There are also beautiful paintings, colorful artworks from people like Max Ernst and Dali as well as other “Alice” art from the 1960’s. There is a reading area in the exhibition. There’s also a participative artwork by Allen Ruppersberg where visitors can make their own books.
Highlights or personal favorites of the exhibition?
One of the highlights is an opportunity to learn more about Dodgson’s photography. We have his photographic equipment and a number of his own beautiful photographs. Charles Dodgson was a writer but he was also an artist who thought in pictures, and it makes you realize why the imagery in “Alice” is so vivid.
A personal favorite is a beautiful oil painting called Alice by Max Ernst from 1941. In Ernst’s painting, Alice, we see the figure of Alice being reinvented for the first time as a young woman, no longer a young girl. Ernst started the artwork when he was a prisoner of war in France and then completed it in New York after he escaped; and so it brings out this important image of Alice as a symbol of hope.
My final favorite is the enormous painting of Wonderland by Luc Tuymans. When you stand in front of if you feel as if you could just walk into Wonderland. It was made in 2007, and it just shows again that even today, artists are still finding the idea of Wonderland such an inspiration.
For more information: Tate Liverpool
On January 29, 2012, Alice in Wonderland leaves the Tate Liverpool and travels to the MART (The Museum of Modern and Contemporary Art) in Trento and Rovereto, Italy before moving to the Kunsthalle in Hamburg, Germany.
Eleanor Clayton and C. M. Rubin
C.M. Rubin is the author of the widely read on-line series, The Global Search for Education, and is also the author of three bestselling books, including The Real Alice in Wonderland.
Follow C. M. Rubin on Twitter: www.twitter.com/@cmrubinworld
The Global Search for Education
More Arts Please Sir (Photo Courtesy of Beechwood Sacred Heart School UK)
More Arts Please
By C. M. Rubin with Harry Rubin and Michael Freeborn
“To lose our culture is to lose our memory.”
More Leonardo da Vincis, more Martha Grahams, more Ludwig Van Beethovens, more Luciano Pavarottis, more Marlon Brandos, more Antoni Gaudis, more Coco Chanels, more Bob Dylans, more Zhang Xiaogangs, more William Shakespeares, more Julia Margaret Camerons, more Gustav Vigelands, more Andrew Lloyd Webbers, more Francis Ford Coppolas, more Meryl Streeps, more Alice In Wonderlands, more Anna Pavlovas, more Michael Jacksons, more Vincent van Goghs, more Harry Potters, more Phil Knights, more Rabindranath Tagores, more Pablo Picassos, more John Steinbecks… Please Sir – can we have some more?
Sir Ken Robinson, PhD, is one of the internationally recognized leaders in the development of education creativity and innovation. He has received numerous honorary degrees from universities, and many awards from cultural organizations and governments, all over the world. He was knighted in 2003 by Queen Elizabeth II for services to the Arts. He has advised governments in Europe, Asia and North America on the Arts. In 2005 he was named one of Time/Fortune/CNN’s Principal Voices. His book, The Element: How Finding Your Passion Changes Everything, is a New York Times best seller and has been translated into 21 languages. His latest book is the 10th anniversary edition of his classic work on creativity and innovation, Out of Our Minds: Learning to be Creative.
Sir Ken, what do you believe an arts curriculum should look like in primary and secondary school education?
I believe that the arts should be on an equal footing in schools with the sciences, humanities, languages and physical education. In most school systems there is a hierarchy. Arts programs are being cut ruthlessly since “No Child Left Behind” came out ten years ago. In the UK, they still talk about core foundation subjects, i.e. English, Math, and Science. In most countries the arts are a second tier activity. My first point is that the arts must be given equal footing. That’s what we argued in The Arts in Schools, the book I published in 1982.
There’s a need for a balance in arts education in several respects. One of them is that a proper arts curriculum would provide for music, dance, visual arts, literature and drama. When we did The Arts in Schoolsproject, I made a point of not trying to define the arts in any form. The reason for this was that the arts are a vibrant set of disciplines, and when you go into different cultures they don’t think of there being 4 or 5 different art forms. For example, for an audience watching a dance performance, that is a visual art form; if you look at musical theater, that is a combination of different disciplines: acting, dancing, music. So even defining 5 or 6 different art forms can become problematic.
More Arts Please Sir (Photo Courtesy of Beechwood Sacred Heart School UK)
Secondly, I think there should be a balance within the teaching of the arts. I ran a large project in the UK in the 80’s called the “The Arts 5-16” in which we offered a clear framework for arts education. There should be a balance between actually doing the arts and secondly, engaging students in understanding other people’s work. In other words, making and appraising. In some schools you will find that there is a greater emphasis on the latter, i.e. appraising. Students read books or listen to music, but they’re not encouraged to create it themselves. In other schools, you will find the opposite, i.e. students doing their own work and never looking at anybody else’s. A balanced arts education has to include both.
Under each of these areas of creating and appraising, we have to teach that creating arts is a discipline based process. It is not just free form. You must learn the skills and techniques of any area but they have to be taught in a way that enables you to think differently and imaginatively. There are forms of teaching that are highly uncreative and where the emphasis on discipline can kill the passion to make art. So there has to be a direct relationship between learning the skills involved and having the freedom to use them and to think creatively through them. The balance is about technical and creative development.
In terms of appraising other people’s work, arts education should include a balance between contextual knowledge and critical judgment. A full appreciation of a work includes understanding something of the history and context in which it was produced. For example, some people look at modern art and think it’s nonsense and that’s often because they don’t understand the context in which it was produced or what the artists’ intentions were. It’s like looking at a page of Romanian if you don’t speak it. So an important part of arts education is helping people understand context, background, and cultural references. The second process is developing skills of critical judgment. In the end you can understand a piece of art in the context and the background to it and still not like it. Enabling students to formulate, express and defend their own aesthetic and critical judgment of the arts is an essential element of a properly balanced arts education in any discipline.
Can student performance in the arts be assessed?
It is absolutely possible to assess people’s work in the arts. I’ve worked with arts academies and with conservatoires in music and visual arts; with specialist arts teachers in school who are assessing students all of the time. Assessment requires that you understand what you are looking at and for and that you are clear about the criteria that you are applying. For example, when a six or seven year old produces a drawing, an art teacher needs to have a frame of reference for what’s normal for a child that age. Part of that is the creative content of the work. But what you would also be looking for are the graphic capabilities and the level of execution. The same is true if you are looking at children who work in dance or theater. There are multiple levels at which you make judgments. Part of the problem in schools is that the arts are not taught regularly or systematically, and too often they are not taught by people who have had a proper grounding in the disciplines.
Another problem is that in this country there is a culture of standardized testing based on right or wrong types of answers. However, if you are looking at someone’s paintings, reading their poetry, or listening to music, then you are focusing on a whole array of factors. We have a tendency to make the measurable important versus the important measurable. The arts are about textures of meaning and understanding, and qualities of perception and expression. This does not mean that they cannot be assessed, but it is difficult to reduce them to simple paper and pencil tests.
Our education systems are obsessed with a particular type of academic ability, and that is a rather narrow view of knowledge and what it means to be intelligent. For all kinds of cultural and historical reasons, the arts have not been seen as being a part of that view. In my book, Out of Our Minds: Learning to be Creative, I tried to explain why the arts are marginalized. It’s partly for economic reasons. People believe that if you do the arts you simply won’t get a job. The other part is the restrictive culture of intelligence in schools that I just mentioned.
We’ve covered teaching the arts as separate and interdisciplinary forms. Can art also be integrated into other academic subject areas to enhance learning?
I don’t think “subjects” is a very good term. “Subjects” implies an area that is defined by its content. Mathematics isn’t a subject to be studied as much as a set of disciplines to be practiced. In other words, you do mathematics, you do not just study it. The same is true of sciences such as chemistry and physics. Music is exactly the same. It is a set of disciplines. There are physical skills, hand eye coordination, aesthetic sensibilities, ideas you need to absorb. So I think “disciplines” is a better term than “subjects” because it captures the concept of practice as well as of ideas.
The other thing I like about “disciplines” is that it opens up the idea of inter-disciplinary. There is a lot in common between the arts and the sciences. In my conception of a great school, there would be all these disciplines represented and there would be a lot of traffic between them. I’ve been working on this idea with schools for over 40 years. Science being taught through music. Music being taught through history. If you want to understand the time and sensibilities of other periods or other cultures, you need to listen to their music.
The more dynamic and collaborative we are in our approaches to teaching, the more likely we are to deepen our understanding of ourselves and of other times as well. Part of our problem is that we have constructed education systems that are like production lines. There is a big separation in our schooling systems between the arts and the sciences. They are taught by different people in different rooms at different times of the day. One example I give of the consequences is from the Natural History Museum. If you visit the insect rooms, you’ll find wonderful displays of butterflies, all arranged in glass cases on the walls. They’re dead, but beautifully arranged by classification, i.e. size, color, etc. In the room next to them you’ll find the beetles. In another room you’ll find the spiders. But, if you go out into the world, that is not how you see them. You do not see the butterflies keeping to themselves over in one corner or the spiders lined up in columns keeping their distance. In nature, they are interacting with each other.
It’s the same in human cultures. They evolve by ideas from different disciplines affecting each other. They flow into each other and inspire people to think differently in their own fields. Schools can stifle this creative interaction by classifying subjects too tightly and keeping them too firmly in separate boxes.
Sir Ken Robinson with C. M. Rubin
In The Global Search for Education, join C. M. Rubin and globally renowned thought leaders including Sir Michael Barber (UK), Dr. Leon Botstein (US), Dr. Linda Darling-Hammond (US), Dr. Madhav Chavan (India), Professor Michael Fullan (Canada), Professor Howard Gardner (US), Professor Yvonne Hellman (The Netherlands), Professor Kristin Helstad (Norway), Professor Rose Hipkins (New Zealand), Professor Cornelia Hoogland (Canada), Mme. Chantal Kaufmann (Belgium), Professor Dominique Lafontaine (Belgium), Professor Hugh Lauder (UK), Professor Ben Levin (Canada), Professor Barry McGaw (Australia), Professor R. Natarajan (India), Sridhar Rajagopalan (India), Sir Ken Robinson (UK), Professor Pasi Sahlberg (Finland), Andreas Schleicher (PISA, OECD), Dr. David Shaffer (US), Dr. Kirsten Sivesind (Norway), Chancellor Stephen Spahn (US), Yves Theze (Lycee Francais US), Professor Charles Ungerleider (Canada), Professor Tony Wagner (US), Professor Dylan Wiliam (UK), Professor Theo Wubbels (The Netherlands), Professor Michael Young (UK), and Professor Minxuan Zhang (China) as they explore the big picture education questions that all nations face today.
The Global Search for Education Community Page
C.M. Rubin has more than two decades of professional experience in development, marketing, and art direction for a diverse range of media businesses. She is also the author of three bestselling books, including The Real Alice In Wonderland.
Follow C. M. Rubin on Twitter: www.twitter.com/@cmrubinworld
THE GLOBAL SEARCH FOR EDUCATION
The Way Out of Poverty
By C. M. Rubin with Harry Rubin and Michael Freeborn
“We have to learn from our past because we must not forget and because we must be better.”
So speaks the powerful voice of 84 year old Kenyan, Kimani N’gan’ga Maruge, describing his unrelenting determination to get an education in a deeply moving new film by director Justin Chadwick (The Other Boleyn Girl) called The First Grader(release date: May 13, 2011).The film, a triumph of education, is based on the true life story of Maruge, a poor, illiterate African man, striving to overcome his past but seeing his way forward very clearly when he is given the chance to have a free primary school education. Shot entirely on location in Kenya, the film stars Oliver Litondo in his first acting role as Maruge, and Actress Naomie Harris as the dedicated head teacher, Jane Obinchu, who supports Maruge’s quest for knowledge. During pre-production interviews with Maruge, Justin Chadwick explains to me: “The importance of knowledge, the chance to learn, was everything to him. Maruge told me, “The power is in the pen. This is our way out of poverty.” Up to the day Maruge died, he asked for a teacher to come to his hospice so that he could continue his all important process of learning. He valued education that much. It was a humbling experience,” adds Chadwick.
We should all be humbled by Maruge’s example. Learning has a transformative power that some of us in the highly developed nations of this world often take for granted. Like Chadwick and The First Grader cast and crew, I spent many of my formative years in underdeveloped countries, and more recently went back to work with children in classrooms in Africa. I know children who live in extreme poverty, who will wake up early in the morning, do an hour’s work for their family, and then walk 5 or 6 miles to get to a classroom where a teacher can give them knowledge; a classroom where important resources such as books are both extremely scarce and highly cherished, and where any obstacle seems insignificant when you have the hunger to learn.
Education matters today more than ever to countries which are at the bottom of the educational hierarchy as well as to those who have highly developed educational systems. And just as Maruge believed that his personal quest to read and write was in a broader context his country’s way out of poverty, American educators and policy makers are trying to figure out how we as a highly developed nation can improve our education systems so that America can stay at the top in a rapidly changing world. I decided to pan the camera a little further back and take a look at that rapidly changing world and at what other countries are doing in terms of their quests for educational excellence. What I discovered is troubling.
President Obama has stated that education matters today more than ever if America is to win the future. However, the competition from those racing to the top is intensifying. For those who follow test scores, many countries are already doing much better than the United States in Reading, Math, and Science in significant international assessment tests such as PISA (Program for International Student Assessment). Over the past few months, with the intention of raising the awareness of policy makers, the media, and the public of the global facts, I have interviewed some of the most prominent thought leaders in education around the world to explore the big picture educational questions that all nations face. These include what kind of educational system will enable a country to have the human skills to compete globally in the 21st century? Will that educational system be able to develop the diverse intellectual and artistic capabilities of students as well as take into account all the important factors that impact a society’s quality of life? Will that system enable its citizens to achieve personal fulfillment as well as to further the accomplishment of a society’s goals? We look for the answers to these questions, for the solutions other nations have decided to embrace, and for the results they are having, in a series of weekly articles called The Global Search for Education.
The views and information shared among different nations is illuminating, but it also reveals that while others are putting educational results on an ascending path, we in the US continue to flounder. Please join me and my distinguished guests, globally renowned for their educational leadership, including Sir Michael Barber (UK), Dr. Leon Botstein (US), Dr. Madhav Chavan (India), Professor Michael Fullan (Canada), Professor Howard Gardner (US), Professor Yvonne Hellman (The Netherlands), Professor Kristin Helstad (Norway), Professor Rose Hipkins (New Zealand), Professor Cornelia Hoogland (Canada), Mme. Chantal Kaufmann (Belgium), Professor Dominique Lafontaine (Belgium), Professor Hugh Lauder (UK), Professor Ben Levin (Canada), Professor Barry McGaw (Australia), Sridhar Rajagopalan (India), Sir Ken Robinson (UK), Professor Pasi Sahlberg (Finland), Andreas Schleicher (PISA, OECD), Dr. David Shaffer (US), Chancellor Stephen Spahn (US), Yves Theze (Lycee Francais US), Professor Charles Ungerleider (Canada), Professor Tony Wagner (US), Professor Dylan Wiliam (UK), Professor Theo Wubbels (The Netherlands), Professor Michael Young (UK), Professor Minxuan Zhang (China), among others, as they share ideas and seek to find solutions in TheGlobal Search for Education, a series of interviews that will be published beginning next week.
One of the lessons that Maruge teaches us in the early part of The First Graderis that at any age it is possible to make a change and realize our dreams. But first, the people who want to make that change must be like Maruge and the young classmates in his first grade classroom. They must have the spirit, the thirst, the hunger, the desire, and the will to learn.
The Global Search for Education Community Page
C.M. Rubin has more than two decades of professional experience in development, marketing, and art direction for a diverse range of media businesses. She is also the author of three bestselling books, including The Real Alice In Wonderland.
Follow C. M. Rubin on Twitter: www.twitter.com/@cmrubinworld
THE GLOBAL SEARCH FOR EDUCATION
by C. M. Rubin with Harry Rubin and Michael Freeborn
C. M. Rubin at Shanghai Children’s Library
COMING SOON:
President Obama has stated that education matters today more than ever if America is to win the future. Education matters to countries who are at the bottom of the educational hierarchy as well as to those who have highly developed educational systems. Highly respected international tests, such as PISA (the Program for International Student Assessment), are showing that the US education system has fallen behind the systems of many other nations. American educators and policy makers want to figure out how we, as a highly developed nation, can improve our education systems so that Americans can stay at the top in a rapidly changing world. The competition from those racing to the top is intensifying.
Over the past few months, I have had the honor to interview some of the most prominent thought leaders in education around the world and to explore the big picture educational questions that all nations face. These include what kind of education system will enable a country to have the human skills to compete globally in the 21st century? Will that education system be able to develop the diverse intellectual and artistic capabilities of students as well as take into account all the important factors that impact a society’s quality of life? Will that system enable its citizens to achieve personal fulfillment as well as further the accomplishment of a society’s goals? Participants look for the answers to these questions, for the solutions other nations have decided to embrace.
Please join me and my distinguished guests, globally renowned for their educational leadership, including Sir Michael Barber (UK), Dr. Leon Botstein (US), Dr. Madhav Chavan (India), Professor Michael Fullan (Canada), Professor Howard Gardner (US), Professor Yvonne Hellman (The Netherlands), Professor Kristin Helstad (Norway), Professor Rose Hipkins (New Zealand), Professor Cornelia Hoogland (Canada), Mme. Chantal Kaufmann (Belgium), Professor Dominique Lafontaine (Belgium), Professor Hugh Lauder (UK), Professor Ben Levin (Canada), Professor Barry Mcgaw (Australia), Sridhar Rajagopalan (India), Sir Ken Robinson (UK), Professor Pasi Sahlberg (Finland), Andreas Schleicher (PISA, OECD), Dr. David Shaffer (US), Chancellor Stephen Spahn (US), Yves Theze (Lycee Francais US), Professor Charles Ungerleider (Canada), Professor Tony Wagner (US), Professor Dylan Wiliam (UK), Professor Theo Wubbels (The Netherlands), Professor Michael Young (UK), Professor Minxuan Zhang (China), among others, as they share ideas and seek to find solutions in The Global Search for Education, a series of interviews that will be published beginning next week.
C.M. Rubin has more than two decades of professional experience in development, marketing, and art direction for a diverse range of media businesses. She is also the author of three bestselling books, including The Real Alice In Wonderland.
Follow C. M. Rubin on Twitter: www.twitter.com/@cmrubinworld
I Am One in a Million - RARE
I Am One in a Million - RARE is the personal story of Lisa Penry Hirons’ fight to live. The story is told with her friend, author C.M. Rubin, who lives in New York City. Lisa, who lives in Maidenhead, England, has Adrenal Cortical Cancer. She has had surgery, chemotherapy, mitotane (a derivative of DDT), and began taking an experimental drug OSI 906 in a trial beginning October 25, 2010. The drug failed to help Lisa. Please note that as with any trial, it is unclear whether Lisa was given the actual drug or the placebo.
There are approximately 600 new cases per year of Lisa’s Cancer in the U.S.(Adrenocortical Carcinoma: ACC), which developed in one of her adrenal glands. The adrenal glands are responsible for making steroid hormones (aldosterone, cortisol and adrenaline) that enable the body to respond to stress. Lisa’s cancer is both very rare and highly life threatening. It is most common in the first, fourth or fifth decade of life. Five-year survival rates in children are greater than 50 percent. Adults rarely have obvious symptoms, so they often are not diagnosed until the cancer is large and has spread. Although adrenal cancer can be treated in adults, it usually comes back. Once it recurs, it is almost always fatal.
Dearest Lisa:
I know you’ve had to be in bed these last few days, but how lovely to be home with Alex and Ollie over the Christmas holiday. Alex sent me these pictures yesterday. I am so happy to hear that you had the International Star Registry name a star after our favourite Starman – Ollie Hirons! The picture of you modelling our innovative Starman campaign back in the 80’s brought back so many happy tears. Remember how that picture of you appeared everywhere? Naturally, you were the most awesome model!!!You are in our thoughts every moment of the day, Lisa, and I’m praying you’ll be well enough soon, so we can chat. Hugs and so much love Cxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
I Am One in a Million - RARE
Lisa’s drugs
Rare Day 27 of 42
I Am One in a Million - RARE is the personal story of Lisa Penry Hirons’ fight to live. The story is told with her friend, author C.M. Rubin, who lives in New York City. Lisa, who lives in Maidenhead, England, has Adrenal Cortical Cancer. She has had surgery, chemotherapy and has now begun an experimental drug therapy lasting 42 days.
There are approximately 600 new cases per year of Lisa’s Cancer in the U.S.(Adrenocortical Carcinoma: ACC), which developed in one of her adrenal glands. The adrenal glands are responsible for making steroid hormones (aldosterone, cortisol and adrenaline) that enable the body to respond to stress. Lisa’s cancer is both very rare and highly life threatening. It is most common in the first, fourth or fifth decade of life. Five-year survival rates in children are greater than 50 percent. Adults rarely have obvious symptoms, so they often are not diagnosed until the cancer is large and has spread. Although adrenal cancer can be treated in adults, it usually comes back. Once it recurs, it is almost always fatal.
Dear Cathy,
I was nervous at Hammersmith Hospital. Alex reminded me that they upped my dose of cortisol reducing drugs yesterday and that can make you feel stressed too.
The appointment with the Endocrinologist went well. She took my blood pressure (and wants me to keep taking it at home), tested my strength, and explained that she’s aiming to get my cortisol level down to 400. My level was 2800 beginning of last week, 2000 last Friday, and 1400 on Monday, so it’s going in the right direction.
The drug works by blocking pathways and messages to the body. Hormones that would normally turn into cortisol are prevented from changing. I have to take the drug 3 times a day, at regular intervals. If this drug doesn’t do the trick, they have another they’ll try. But she’s hopeful it’s working. My potassium level has picked up and she may increase the dose if my body can tolerate it.
I then had loads of blood tests with Renata, the lovely nurse. They tested for cortisol, platelet counts, sugar, everything I think!!
We then picked up another huge prescription of drugs - I have to write everything down that I have to take and tick them off - I’d never remember otherwise. And now we’re home again. Been thinking about Papa Bagel all day. Lxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Dear Lisa,
Papa had a long day but no bagels……. The usual prep for an op (as you know well) means no food after midnight – but the hospital couldn’t start surgery today until 2pm, and so, although Papa didn’t complain, we know he was starving. Papa, who will be 91 on November 30, had a procedure called a combined pacemaker and defibrillator surgery. A cardioverter-defibrillator (ICD) was implanted. This is used to detect and suppress heart arrhythmias (irregular heartbeats) and convert them back to normal rhythm by delivering an electrical shock to the heart. And get this, Dr. Mel Scheinman, Professor of Medicine, Walter H. Shorenstein Endowed Chair in Cardiology, University of California, San Francisco, a founding father of the field of cardiac electrophysiology, a founding pioneer of clinical cardiac electrophysiology, and the first person to have performed catheter ablation in humans, is one of Papa’s relatives. It’s nice to know that your relative led the way for the surgeons doing the 4 hour procedure on you, hey? Papa was still in recovery when we last had news, although he did remind the family he needs to get a haircut on Tuesday (before Thanksgiving dinner), so we believe he’s coming along just nicely. Thanks for asking, Lisa. Lots of love, Cxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Cathy Rubin with Papa Rubin
I Am One in a Million - RARE
Lisa is meditating
Rare Day 26 of 42
I Am One in a Million - RARE is the personal story of Lisa Penry Hirons’ fight to live. The story is told with her friend, author C.M. Rubin, who lives in New York City. Lisa, who lives in Maidenhead, England, has Adrenal Cortical Cancer. She has had surgery, chemotherapy and has now begun an experimental drug therapy lasting 42 days.
There are approximately 600 new cases per year of Lisa’s Cancer in the U.S.(Adrenocortical Carcinoma: ACC), which developed in one of her adrenal glands. The adrenal glands are responsible for making steroid hormones (aldosterone, cortisol and adrenaline) that enable the body to respond to stress. Lisa’s cancer is both very rare and highly life threatening. It is most common in the first, fourth or fifth decade of life. Five-year survival rates in children are greater than 50 percent. Adults rarely have obvious symptoms, so they often are not diagnosed until the cancer is large and has spread. Although adrenal cancer can be treated in adults, it usually comes back. Once it recurs, it is almost always fatal.
Morning Mrs. R, absolutely fantastic idea about a line of RARE Cancer greeting cards, let’s do it!
I watched a BBC2 series called The Big Silence recently, about the value of meditation in our day-to-day lives. It reminded me of all the benefits a bit of silence can have on everyday aspects of our health and well-being. Whatever you call it, meditating or being still, it doesn’t matter, it’s not the name but the process that counts.
My clever friend and management consultant, Nicola, has been teaching me for years now. One of the first exercises at her workshops was focused on the art of moving mediation. Ah, I remember thinking, this is for me. The lesson: whatever you’re doing (washing up, walking, driving), there is no need to stop meditating! Just continue what you’re doing, but continue mindfully.
So I did afterwards……over and over again….even when I was walking barefoot on spiky prickly ground outside. When we debriefed this particular mission, I was astounded with myself. All it would have taken in the past was one tiny physical shift and I would have been walking backwards and forwards on soft grass. Instead, I continued on the spiky prickly ground. I realized that I had been doing that in my life, just simply carrying on and on whereas small, tiny shifts might have been so important for me.
Believe me, that lesson has lasted and I make shifts all the time now; and Nicola still uses that story as one of her examples…….of what not to do!!.
My Brother John came over and took me to the supermarket, and so I did yet another “normal” thing today. It was great to do it, great to be out, and great to be…….meditating in all the aisles!! Lxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Good evening dear Mrs. H,
It’s been a bit of a topsy turvy afternoon here in Manhattan, which is why I’ve only just read your email (I hope you are asleep at this late hour!). We’ve just heard that Papa Rubin (Papa bagel, as Gabriella likes to call her grandfather), Harry’s father, who lives in North Carolina, has to have heart surgery tomorrow morning. It was an emergency decision and the doctors have decided (after a bit of meditating, I’m sure!) to proceed even though Papa is almost 91. They feel surgery (a relatively straightforward surgical procedure, although at 91 nothing is easy) is essential. We are all saying our prayers tonight. It made me think of something I have been meaning to tell you. While we all love and appreciate the wonderful talent that medical institutions and staff offer us when we are sick, every patient (and their loved ones) knows the courage it takes to overcome the fear of treatment. It is at times like these that the lessons you and others have shared in the past 20 plus days are so relevant. Have a good night’s rest, Mrs. H. Meditating for you and Papa Bagel tonight and tomorrow. Cxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Papa bagel and my daughter, Gabriella
