Army of Women, BCG, doctors home visits, Encyclopaedia Britannica, Health Writing Activist Monthly Challenge, Jenner, JOURNEYING BEYOND BREAST CANCER, Macmillan Guide to Family Health, National Breast Cancer Co, prevention, reading, Salk, smallpox, vaccination, vaccine, WEBICINA
Learning via Twitter that The Encyclopaedia Brittanica will no longer publish in print struck me as ironic and sad. I know not when I last considered even consulting it, but I am very sorry to see it go. Like an old relative that I haven’t seen in some years, The Encyclopaedia Brittanica, has an important place in my personal history, featuring prominently in a childhood that was informed largely by books. I recall quite clearly the arrival of the handsome burgundy leather bound set which I know must have cost my parents a small fortune when they purchased it from a door-to-door salesman circa 1970. They probably even set up an installment plan to pay for it. At the time, it was money well spent. Both my younger brother and I consulted it regularly to find out more about what we didn’t know, gleaning facts and figures about wars and diseases and historical figures and culture and why things worked the way they did. I loved it. As a child, I spent much of my time with “my nose in a book,” preferring reading to playing outside or watching TV. Some days, when I’m a glutton for punishment of the mother-of-a-teenager variety, I try to inspire in my daughter a sense of awe about just how far we’ve come … I tell her stories about record players, 45s, LPs, and typewriters and how I only had three black and white TV channels from which to choose, and computers didn’t exist yet. I’m not sure she really cares. How her mother spent her teenage years is altogether boring and will continue to be until my darling girl emerges from the other end of what I once heard Whoopi Goldberg brilliantly describe as the “teen tunnel.” Undeterred, I try to appeal to her school-is-boring-angst by referring casually to her recent social studies research project on the Yanomami tribe, which would have been impossible, she tells me, without nightly “conferences” about it with friends via Skype, interminable Google searches and many visits to nationalgeographic.com. At no point, however, did she consider visiting the bricks-and-mortar version of the library. Conspiratorially, I tell her that when I had to do a similar report on Japanese culture, when I was 14, there was no Google. Imagine it! Instead, there was the mobile library which parked around the corner once a week and a research process that involved the lengthy process of writing a letter to the Japanese Embassy requesting information and addressing an envelope to said embassy, then waiting patiently for a response. Ah, but there was also “old faithful,” The Encyclopaedia Britannica. All its volumes, neatly lining the bookshelves, just waiting to answer my questions. About anything. Everything I would ever need to know about anything in life was surely within those pages. Better yet, it was in alphabetical order.
I remember consulting it to learn about diseases that had befallen characters I’d encountered only in novels or history books. As a child, I was vexed to learn that before antibiotics and vaccines, vast numbers of people were killed by such a disease as smallpox. It was just unfathomable to me that disease could spread and take the lives of so many people in one fell swoop. Cholera, smallpox, tuberculosis. Diseases, which by the time I discovered them in The Encylopaedia Britannica, had been wiped out. It is comforting to know that I cannot think of smallpox without also thinking of Jenner’s vaccine, nor polio without calling up a black and white image of a bespectacled Jonas Salk with a hypodermic needle. Tuberculosis brings to mind the universal BCG immunizations for us as 13 year olds back home and the residual tell-tale scar many of us bear just above the deltoid muscle of the upper-left arm. I marvel at all we were able to achieve with far less technology and far less funding to obliterate diseases that had previously killed so many people. Conversely, I am dumbfounded that the very idea of breast cancer as an unpreventable disease can exist in 2012 America. That is the toughest pill to swallow of all.
I don’t remember exactly when The Encyclopaedia Britannica lost its appeal. Perhaps it happened around the same time doctors stopped making routine house visits in Northern Ireland. I remember in the early 1980s I had joined a book-of-the-month-club and as part of the introductory offer, I selected The Macmillan Guide to Family Health, and gave it to my mother. From one hypochondriac to another, it was the perfect gift. The mother lode of medical information. Irresistible to mam and me, it had diagrams and charts and information on literally hundreds of medical conditions. Between us, we have self-diagnosed all manner of diseases in large part because of The Macmillan Guide to Family Health. When we spent too long thinking that a persistent little cough might just be the start of something really serious (and completely improbable), like rabies of all things, my father would intervene and point out that neither of us had MD after our name and it would be better to put the book away and go see a real doctor.
Perhaps all of this was the beginning of my journey towards becoming what I have I learned I need to be – an “empowered patient.” I am learning about the power of the online blogging community, women who write every single day, who cry out via Twitter, collectively driving change in the conversation about breast cancer in this country. Women like Marie of Journeying Beyond Breast Cancer whose blog has enlightened and empowered me since I discovered it serendipitously one sleepless night following my diagnosis. Rightfully, Marie’s work is now featured on Webicina.com, a free service that is revolutionizing the virtual world of health by providing curated medical social media resources for patients like me and medical professionals all over the world. No matter the hour, it is no small comfort to know I will find there the very best social media sources most relevant to my cancer. While I am angered by the cancer that has moved in on our lives, I temper it with deep gratitude and support for the the immense power I find in the passionate, smart, writing of the bloggers, in their advocacy for a better approach to breast cancer by focusing on things that are mission critical – cause and prevention. A constant stream of information and support flows daily from Twitter, from people I may never meet, to help me integrate into my life the disease that has forever altered it. People like Dr. Deanna Attai who reaffirms that I need to stay calm, take it one day at a time, and know that sometimes I’ll need to take it “minute by minute.” I really will. Or people like Dr. Susan Love and the ever growing Army of Women that rightfully urges and inspires me to join the revolution in moving us all beyond a cure and toward a cause. The real cause.
Sleep is late to visit tonight, so I will close with just one final irony. It took an incurable disease, cancer, to compel me to more closely consider The Encyclopedia Britannica of my childhood, where, within its pages, disease appeared to be under control. Vaccines. Prevention. Causes known. Lives saved. I never imagined in 1973, that I would grow up to have a disease that by 2030, according to the National Breast Cancer Coalition, without major changes in prevention or treatment, will kill 747,802 women globally each year.
So here’s what I hope for my daughter and her future children, for all of us who have, until now, been placated by the powerful mythology that surrounds breast cancer. I hope for empowering knowledge to fill the space that is currently occupied by myths about preventing and finding a cure for breast cancer. I hope that one day, not too long from now, we will access the online version of The Enyclopaedia Britannica which will present, within its section on cancer, a factual paragraph or two on what exactly causes it, how we developed a way to prevent it, perhaps with a vaccine, and how we, as well-informed and empowered patients, helped bring an end to this wretched, cruel disease before 2020.