Into the Wilderness: Parenting a Terminally Ill Child
by Emily Rapp, guest contributor
“You feel your obligation to a child when you have seen it and held it. Any human face is a claim on you, because you can’t help but understand the singularity of it, the courage and loneliness of it. But this is truest of the face of an infant. I consider that to be one kind of vision, as mystical as any.” ~from Gilead by Marilynne Robinson
I woke up and held my son for a long, long time. I’d been gone for three days at the National Tay-Sachs and Allied Disorders Family Conference and had missed him terribly. Driving through Boston on the way to the airport, I told my friend Kate that it was so difficult, so impossible even, so disastrous to imagine feeling that way forever. The missing, the ache.
We agreed that, say what you will about heaven or where we go or visions of the afterlife, the truth about someone being dead is that they’re gone from this life, right now, here on earth, with you. That particular person has been removed from your particular life. That’s the gut punch and there is no balm for that, no platitude, no prayer, and, I would argue, no belief even that will fix it. My son will be dead within three years and there’s nothing I can do about it.
Giving Thanks to My Ancestors on Día de Los Muertos
by Jenny Ward McDonald, guest contributor
Last fall the idea to visit the family graveyard came to mind for the first time in ages. Día de Los Muertos seemed like the perfect excuse to make the journey. I allowed life and distance to keep me away, however, and I never went.
I am not Latina, but I did develop a strong appreciation for Mexican culture while studying midwifery on the Texas/Mexico border. When I moved home to Georgia, I kept a piece of Mexico in my heart. Since the first idea to celebrate my ancestors Mexican-style entered my mind last year, the urge had only grown stronger. So as November approached this year, I resolved to do it. I invited my two sisters. One said she’d bake a casserole and we planned to picnic at the cemetery. On October 31st, they both cancelled on me. I was determined, however, and went anyway.
Día De Los Muertos, in Memory of Lost Loved Ones
by Susan Leem, associate producer
Today is the final day of Día De Los Muertos, or Day of the Dead. Celebrated in Mexico and many other parts of the world, people gather together to remember and honor loved ones and ancestors who have died. The holiday is connected with the Roman Catholic holidays of All Saint’s Day and All Soul’s Day, as it occurs on November 1st and 2nd. The face-painting as skulls helps to overcome a fear of death as a natural part of the cycle of life.
About the image: Here, a woman dressed as La Calavera Catrina (“The Elegant Skull”) celebrates at a Dia De Los Muertos Festival in Los Angeles. (photo: Rob Sheridan/Flickr, cc by-nc-sa 2.0)
Samhain, The Thinning Veil Between Worlds, with a Witch
by Peg Aloi, guest contributor
Photo by Jordi Puig/Flickr, cc by-nc-sa 2.0
Like most Americans of my generation, I looked forward to trick or treating at Hallowe’en for many years. It was fun to get dressed up and wander the neighborhood with a plastic pumpkin, feeling it grow heavier with candy and other treats. And in those days, the treats were wonderful: homemade cookies! Candy apples! Caramel popcorn balls! My mother made these home-made goodies each year, too, and neighborhood kids looked forward to trick or treat at our house.
Hallowe’en was a sensory holiday for me then, and still is. The colorful costume parades, the chill in the air, the crunch of leaves underfoot, juicy apples and home-made doughnuts, the smell of burning leaves and autumn bonfires: these sensual memories mean autumn to me. Walking home from a friend’s house in the early darkness, the sight of a tree without its leaves against a violet sky filled me with spooky dread, but also a sense of awe.
And Hallowe’en was always the point when it was clear that winter was really coming: you had to prepare a costume that you could layer with an extra sweater underneath, in case it got cold. On some level the gathering of sweets mirrored the hoarding of nuts by the crazed squirrels scrambling through the fallen leaves. Children dressed as fantastical beings in diaphanous gowns, silvery suits, clothing we’d soon forgo in favor of wooly skirts and itchy pullovers. One last decadent night of hell raising before hibernation! Hallowe’en came one week after my birthday, and it was like celebrating non-stop for a week.
But being a practicing witch means I have a very different perspective on this holiday as an adult. For modern witches, Hallowe’en is known as Samhain, a Scottish term meaning “summer’s end” that marks that halfway point between autumn equinox and winter solstice. We also call it Hallows, or sometimes All Souls Night. Growing up a Catholic, I sometimes attended church on All Saints Day, the day after Hallowe’en, and, as a child, didn’t quite understand the connection between the two days, and assumed the church held their Mass the day after simply because the night of Hallowe’en was just too busy and who would want to go to church when they could go door to door gathering candy?
These days, I tend to celebrate this feast of the dead in somber and often unusual ways. The coven I work with has an elaborate cycle of rituals beginning in spring and culminating at Samhain with a rite called Harvest Home, in which a young “harvest lord” is symbolically slain by his consort as a sacrificial offering to fertilize the crops and balance the cycle of life, death, and rebirth: the Eternal Return. I have been to large public rituals where guests were invited to speak of their loved ones who had passed over; I have attended vigils that were peaceful and serene, with candles everywhere and plates of food left for the dead and denizens of the Otherworld.
Some witches celebrate this holiday as the Celtic New Year, and do rituals and rites appropriate for new beginnings. This year, Samhain occurs just after the New Moon in the sign of Scorpio, a very portentous timing. The sun has also just entered the sign of Scorpio, a sign associated with death and regeneration. It is said that at Samhain, as at Beltane (May 1st), the “veil between the worlds,” or the barrier separating the world of the living from the world of the dead, grows thin and permeable, and allows us to commune with our beloved dead and our ancestors. For this reason many witches and pagans create altars dedicated to their ancestors and dead loved ones, with photos and mementos, favorite foods or flowers.
If you haven’t noticed, this holiday has become enormously popular, with the big box stores putting out decorations and supplies as early as Labor Day, and with more and more emphasis on parties, costumes, and decorations, which can mean big business for retailers (a number of whom specialize in Hallowe’en year ‘round). Related holidays are receiving more notice too, such as Mexico’s Dios de la Muerte (“The Day of the Dead”), and I know a number of witches of European ancestry who decorate sugar skulls with their children. And nearly every television network is showing horror films this month, some of them every night. Is it that our culture is becoming more interested in occult matters generally, a sort of second occult revival? Or are we merely so susceptible to social trends and their trappings that we have no idea why we’re so obsessed with the baubles and symbols of death?
Or perhaps, in our yearning for some decadence in the midst of frightening times, we grab hold of outrageous forms of fun. We recall what used to thrill us and delight us as children (horror and sugar), and even if it’s about death, it makes us feel alive, and somehow comforted. We occupy our neighborhoods with treats, and flashlights, and gaudy clothes, and glee. And know we’ll make it even more fun next year.
And the witches among you (we’re there, oh yes), we’ll also decorate our doorways with cornstalks and pumpkins, and put candle-lit skulls in our windows. We’re staving off the darkness, too.
Peg Aloi is an adjunct professor at The College of Saint Rose and film critic living in Albany, New York. She’s a practicing witch who regularly writes on media for The Witching Hour and Orchards Forever.
We welcome your reflections, essays, videos, or news items for possible publication on the Being Blog. Submit your entry through our First Person Outreach page.
Why I Cried When Steve Jobs Died
by Jennifer Cobb, guest contributor
Image by Charis Tsevis/Flickr, CC BY-NC-ND 2.0
It took me by surprise that I cried when Steve Jobs died. I was surprised to feel so moved by the loss of someone who was essentially a modern industrialist. But of course, his acumen as a businessman was not what I was mourning. Jobs’ work has moved us in ways that the work of his contemporary Bill Gates never has. Gates’s influence on our culture has been just as powerful, but has not touched as profoundly. Why?
The vast digital domain that we think of when we imagine information technology is essentially non-physical in nature. It is, by definition, incorporeal. But like all incorporeal things – our thoughts, our dreams, our faith, our souls – it relies on bodies for manifestation in the physical world. The digital needs the analog to express itself.
And this is what Steve Jobs did better than anyone else. He built beautiful bodies for our digital dreams. He understood before we did that we craved elegant containers for our disembodied hearts and minds. Every device he ever created, from the Apple 1 to the iPhone, was an expression of his deep, aesthetic commitment. And here he stood on the shoulder of giants, from Aristotle and Aquinas up to modern information theorists who assert that the best code is the simplest and most beautiful. As Keats so famously wrote, “Beauty is truth, truth beauty — that is all ye know on earth, and all ye need to know.”
Job’s aesthetic began with the analog form of the device and then, quite naturally, extended into the digital function — the UI or user interface. The icons. The navigation. The information architecture at heart of the Apple OS. Analog and digital, form and function, hand in hand. Jobs was not just constructing bodies; he was giving them very particular and beautiful expressive capacities that are connected to something radically new in human experience; they plug us into a shared digital landscape filled with us and everything we bring to it.
Technology is our connective tissue. It joins us, hearts and minds. Jobs enabled this connection in a new way. He did not create the content that fills the devices he designed. He left it up to us to write songs, create art, make movies, write blog posts and emails and essays, send tweets and texts and build websites.
Jobs was a perfect reflection of our times. He made stuff that is so attractive, so enchanting, that he created a vast global desire for his products. His medium was technology and the context was capitalism. He made a lot of money for himself and for many other people. But by all accounts, the money wasn’t the point. The money was simply a validation of the fact that his vision was spreading throughout the world. And that vision was that the digital and the analog could be a thing of beauty when married with skill and vision.
The danger in the global mourning of his gifts is that we become so enchanted with the devices that we get lost in the interface and forget that the real point is what lies on the other side of the threshold. The devices are doorways into a larger, enchanted world of our shared creativity. They are not ends, they are beginnings.
Jennifer Cobb is a business consultant specializing in marketing and strategy for public and private sector organizations. She has a degree in ethics from Union Theological Seminary and is the author of Cybergrace: The Search for God in the Digital World. She lives in Berkeley, California and blogs regularly at The Spruce Blog.
We welcome your original reflections, essays, videos, or news items for possible publication on the Being Blog. Submit your entry through our First Person Outreach page.
Steve Jobs: “Love What You Do” (video)
by Trent Gilliss, senior editor
“Death is very likely the single best invention of life.”
We can’t think of a more fitting way at On Being to pay tribute to the passing of Steve Jobs than by sharing the commencement speech he gave at Stanford University in 2005. He shares his thoughts on the value of education, the importance of passion and curiosity, serendipitous encounters with typography, and the lessons of living with cancer.
Rest in peace, Steve Jobs. “Stay hungry. Stay foolish.”
[update] And, here’s the the complete transcript:
“I am honored to be with you today at your commencement from one of the finest universities in the world. I never graduated from college. Truth be told, this is the closest I’ve ever gotten to a college graduation. Today I want to tell you three stories from my life. That’s it. No big deal. Just three stories.
The first story is about connecting the dots.
I dropped out of Reed College after the first 6 months, but then stayed around as a drop-in for another 18 months or so before I really quit. So why did I drop out?
It started before I was born. My biological mother was a young, unwed college graduate student, and she decided to put me up for adoption. She felt very strongly that I should be adopted by college graduates, so everything was all set for me to be adopted at birth by a lawyer and his wife. Except that when I popped out they decided at the last minute that they really wanted a girl. So my parents, who were on a waiting list, got a call in the middle of the night asking: “We have an unexpected baby boy; do you want him?” They said: “Of course.” My biological mother later found out that my mother had never graduated from college and that my father had never graduated from high school. She refused to sign the final adoption papers. She only relented a few months later when my parents promised that I would someday go to college.
And 17 years later I did go to college. But I naively chose a college that was almost as expensive as Stanford, and all of my working-class parents’ savings were being spent on my college tuition. After six months, I couldn’t see the value in it. I had no idea what I wanted to do with my life and no idea how college was going to help me figure it out. And here I was spending all of the money my parents had saved their entire life. So I decided to drop out and trust that it would all work out OK. It was pretty scary at the time, but looking back it was one of the best decisions I ever made. The minute I dropped out I could stop taking the required classes that didn’t interest me, and begin dropping in on the ones that looked interesting.
It wasn’t all romantic. I didn’t have a dorm room, so I slept on the floor in friends’ rooms, I returned coke bottles for the 5¢ deposits to buy food with, and I would walk the 7 miles across town every Sunday night to get one good meal a week at the Hare Krishna temple. I loved it. And much of what I stumbled into by following my curiosity and intuition turned out to be priceless later on. Let me give you one example:
Reed College at that time offered perhaps the best calligraphy instruction in the country. Throughout the campus every poster, every label on every drawer, was beautifully hand calligraphed. Because I had dropped out and didn’t have to take the normal classes, I decided to take a calligraphy class to learn how to do this. I learned about serif and san serif typefaces, about varying the amount of space between different letter combinations, about what makes great typography great. It was beautiful, historical, artistically subtle in a way that science can’t capture, and I found it fascinating.
None of this had even a hope of any practical application in my life. But ten years later, when we were designing the first Macintosh computer, it all came back to me. And we designed it all into the Mac. It was the first computer with beautiful typography. If I had never dropped in on that single course in college, the Mac would have never had multiple typefaces or proportionally spaced fonts. And since Windows just copied the Mac, it’s likely that no personal computer would have them. If I had never dropped out, I would have never dropped in on this calligraphy class, and personal computers might not have the wonderful typography that they do. Of course it was impossible to connect the dots looking forward when I was in college. But it was very, very clear looking backwards ten years later.
Again, you can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.
My second story is about love and loss.
I was lucky — I found what I loved to do early in life. Woz and I started Apple in my parents garage when I was 20. We worked hard, and in 10 years Apple had grown from just the two of us in a garage into a $2 billion company with over 4000 employees. We had just released our finest creation — the Macintosh — a year earlier, and I had just turned 30. And then I got fired. How can you get fired from a company you started? Well, as Apple grew we hired someone who I thought was very talented to run the company with me, and for the first year or so things went well. But then our visions of the future began to diverge and eventually we had a falling out. When we did, our Board of Directors sided with him. So at 30 I was out. And very publicly out. What had been the focus of my entire adult life was gone, and it was devastating.
I really didn’t know what to do for a few months. I felt that I had let the previous generation of entrepreneurs down - that I had dropped the baton as it was being passed to me. I met with David Packard and Bob Noyce and tried to apologize for screwing up so badly. I was a very public failure, and I even thought about running away from the valley. But something slowly began to dawn on me — I still loved what I did. The turn of events at Apple had not changed that one bit. I had been rejected, but I was still in love. And so I decided to start over.
I didn’t see it then, but it turned out that getting fired from Apple was the best thing that could have ever happened to me. The heaviness of being successful was replaced by the lightness of being a beginner again, less sure about everything. It freed me to enter one of the most creative periods of my life.
During the next five years, I started a company named NeXT, another company named Pixar, and fell in love with an amazing woman who would become my wife. Pixar went on to create the worlds first computer animated feature film, Toy Story, and is now the most successful animation studio in the world. In a remarkable turn of events, Apple bought NeXT, I returned to Apple, and the technology we developed at NeXT is at the heart of Apple’s current renaissance. And Laurene and I have a wonderful family together.
I’m pretty sure none of this would have happened if I hadn’t been fired from Apple. It was awful tasting medicine, but I guess the patient needed it. Sometimes life hits you in the head with a brick. Don’t lose faith. I’m convinced that the only thing that kept me going was that I loved what I did. You’ve got to find what you love. And that is as true for your work as it is for your lovers. Your work is going to fill a large part of your life, and the only way to be truly satisfied is to do what you believe is great work. And the only way to do great work is to love what you do. If you haven’t found it yet, keep looking. Don’t settle. As with all matters of the heart, you’ll know when you find it. And, like any great relationship, it just gets better and better as the years roll on. So keep looking until you find it. Don’t settle.
My third story is about death.
When I was 17, I read a quote that went something like: “If you live each day as if it was your last, someday you’ll most certainly be right.” It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself: “If today were the last day of my life, would I want to do what I am about to do today?” And whenever the answer has been “No” for too many days in a row, I know I need to change something.
Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure - these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.
About a year ago I was diagnosed with cancer. I had a scan at 7:30 in the morning, and it clearly showed a tumor on my pancreas. I didn’t even know what a pancreas was. The doctors told me this was almost certainly a type of cancer that is incurable, and that I should expect to live no longer than three to six months. My doctor advised me to go home and get my affairs in order, which is doctor’s code for prepare to die. It means to try to tell your kids everything you thought you’d have the next 10 years to tell them in just a few months. It means to make sure everything is buttoned up so that it will be as easy as possible for your family. It means to say your goodbyes.
I lived with that diagnosis all day. Later that evening I had a biopsy, where they stuck an endoscope down my throat, through my stomach and into my intestines, put a needle into my pancreas and got a few cells from the tumor. I was sedated, but my wife, who was there, told me that when they viewed the cells under a microscope the doctors started crying because it turned out to be a very rare form of pancreatic cancer that is curable with surgery. I had the surgery and I’m fine now.
This was the closest I’ve been to facing death, and I hope it’s the closest I get for a few more decades. Having lived through it, I can now say this to you with a bit more certainty than when death was a useful but purely intellectual concept:
No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true.
Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.
When I was young, there was an amazing publication called The Whole Earth Catalog, which was one of the bibles of my generation. It was created by a fellow named Stewart Brand not far from here in Menlo Park, and he brought it to life with his poetic touch. This was in the late 1960’s, before personal computers and desktop publishing, so it was all made with typewriters, scissors, and polaroid cameras. It was sort of like Google in paperback form, 35 years before Google came along: it was idealistic, and overflowing with neat tools and great notions.
Stewart and his team put out several issues of The Whole Earth Catalog, and then when it had run its course, they put out a final issue. It was the mid-1970s, and I was your age. On the back cover of their final issue was a photograph of an early morning country road, the kind you might find yourself hitchhiking on if you were so adventurous. Beneath it were the words: “Stay Hungry. Stay Foolish.” It was their farewell message as they signed off. Stay Hungry. Stay Foolish. And I have always wished that for myself. And now, as you graduate to begin anew, I wish that for you.
Stay Hungry. Stay Foolish.
Thank you all very much.”
For those about to take my life, may God have mercy on your souls, may God bless your souls.
—Troy Anthony Davis, speaking to the prison officials who executed him by lethal injection at 11:08 in a Georgia prison last night, according to an eyewitness account from an Associated Press reporter.
About the photo: A demonstrator outside the Georgia Diagnostic and Classification Prison in Jackson, Georgia, on Wednesday, September 21. (photo: Erik S. Lesser/AFP/Getty Images)
~Trent Gilliss, senior editor