It starts in the kitchen when I push the button and start the coffee. Without coffee, the day cannot begin.
Nan is there, acting as if she has never been fed.
Bonnie will fling herself at me until I produce a biscuit.
Then to the office, coffee in hand. I’ll be there for hours, until I finish reading and writing.
I watch the world through my office window.
Books, cameras, dolls, and high tech gear touch my life as I pass through my day.
Time to fit in some shopping. You can’t buy veggies online. Yet.
On a good day, I make time to take a few pictures.
Evenings are Garry and I with the furkids. Movie time! I often write on my laptop while the TV is on. A bloggers work is never done.
Through the door, into the bedroom. It’s late, time to sleep.
The day ends in the warm comfort of our bed. I love our bed. It always brings a sigh.
Waking up to the light in the bedroom, my day begins with coffee and ends where it began. Not exciting, perhaps, but it’s a form-fitting world for me and mine. I wanted this to be an ordinary day, like most days. There are busier days, days spent away from home, at doctor’s offices and (alas) working … but this is a regular average day in my life. Nothing special, nothing fancy. Welcome to my little world.
For all my friends, near and far, who deal with cancer and its aftermath while trying to retain some semblance of selfhood.
Having cancer is like entering a tunnel. As soon as you agree on a plan of treatment, your choices disappear. You stay in that tunnel, in that lane until you get to the other side. As often as not, you don’t know where you are going. Scared, angry, full of holes from needles seeking veins until you have no veins to find.
You’re weary of well-intentioned sympathy from people who keep telling you to smile because your positive attitude is the key to something (it’s not). You soldier on. You don’t need to be brave, but you do need to be strong. You have to keep following instructions, taking medication supposed to save your life, but which make you miserable.
It gets hard to remember who you used to be and harder to hang on to a sense of self when the world treats you as if you and your disease are the same thing.
The author of this poem wrote it in dedication to many friends who had some form of cancer.
I’m passing it along because there are so many of us, men and women, young and old who have cancer, have had cancer and wonder if and when we’ll have it again. Most especially, this is for Wendy.
Sometimes, it’s good to be reminded we are still people. It’s okay to be angry. It’s okay to be sad. It’s okay to be yourself. No matter what anyone says, you and your attitude didn’t cause your illness. You and your attitude won’t cure it. Feel however you feel. Talk and make sure the people in your life hear you.
I am not my breast,
not my hair,
I am not my complexion,
not my eyes, not my nose,
not my lips, not my fingers,
not my toes, not my voice.
I can live without these things.
I am a mother,
a daughter, a sister,
a friend, a lover,
a wife, an aunt,
a grandmother,
and a stranger.
I am beauty,
I am the song on the radio,
the whisper in your ear,
I am the goosebumps in the
chill of night,
I am the comfort you find
in a hug,
I am a heartbeat, a soul,
a kiss in the cold,
an angel in your dreams, or
a breath of winter snow.
I am love.
I am fear.
I am strength.
I AM NOT CANCER.
CANCER IS NOT ME.
Cancer is
a disease, not a
death sentence (necessarily)—
Cancer can take a lot from me,
my breast, my hair, my health,
my life.
But,
It can’t take away my soul,
It can’t change who I am.
I have cancer, and
I am beautiful, strong,
and scared,
but I am
alive.
Someone asked me what lessons I learned in life. It seemed like there would be a lot of answers to that question but actually, after I really thought about it, I realized there’s only one lesson. It comes in many forms and wears a variety of disguises and costumes. It seems, on first glance, a simple lesson yet it is the hardest to accept probably because it is a lesson we don’t want to learn. We resist it, fight it, wrestle until we are bloody, beaten and crushed. It’s not what we were promised. It is entirely contrary to what mom and dad told us when they said we could do or be anything if we tried hard enough.
It turns out that we aren’t the drivers of the bus that is our lives. We are passengers and whether we get a window seat or find ourselves scrunched up at the back with lots of other riders, we are far from the driver’s seat. We have not been advised of the itinerary or destination nor do we know the schedule or even if there are stops along the way.
We are free to ask the driver to take us where we want to go. If the driver complies, we assume this shows we are in control. If the driver goes somewhere completely different, we blame ourselves, the world, our parents, fate, whatever. After all, when things go wrong, it has to be someone’s fault, right?
But no one is at fault. Life happens. If life treats us gently, we are happy to take credit for our great planning and skill in life management. If things go poorly, we look around to see who we can blame.
Control is our fondest, most beloved illusion. As thinking beings, we are irrevocably committed to making a good faithbest effort to accomplish whatever we set out to do. If our goals align with what life intends for us, we get to accomplish some of what we planned. Regardless, sooner or later, we learn – easy or hard – we are not in control, never were, nor ever will be. Life is not a course we plot on a map. It’s not a route laid out with appropriate stopovers along the path.
Life simply is.
That’s the lesson. Where life takes us, that’s where we should be and where we need to apply our efforts. Our greatest success won’t be the result of how successfully we manage our lives but how well we take advantage of the opportunities and challenges life throws at us.
Free will is a limited franchise. Our life takes place in a designated space within which we have some options: we can sit in this chair or on that sofa. We can look out the window or chat with whoever is sharing our space. But we are not moving to another room. That’s the essence of Karma.
Your real task is to find satisfaction with what life gives you. Otherwise, you will waste your days pining for what will never be, angry because it isn’t what you want, and depressed because you feel cheated. There is always some good stuff going on, no matter how difficult it may be to find. This is not the answer anyone wants to hear. It seems so unfair.
Fair or not, this is the answer and the lesson. You are not obligated to like it. You are required to deal with it.
I was 46 years old when my homemade strawberry preserves jelled properly. Probably what broke the barrier was overcoming a longstanding aversion to putting sufficient sugar in the mix. Alternatively, I could have solved the problem by adding tapioca starch or pectin, but I’m a a bit of a food snob. I wanted my preserves made of just fruit and sugar.
The day the preserves came out perfectly was the day my first husband finally died. He had been dying for a long time. It was a Friday, a rare brilliant spring day in New England. Jeff had been sick for almost a year, in what we politely called a coma, but which was actually a vegetative state. Now gone. I had not come to terms with it though I’d certainly had plenty of time. Probably no amount of time would have been enough.
Other than Jeff’s dying, it was a good time. Garry and I were happy. We were good together, busy with career and friends. Yet there was that underlying sadness we could not avoid, the knowledge that a death was near at hand. Happiness and sadness don’t cancel one another. The good things are not a balance against pain. Feelings aren’t an equation. You can’t add columns of positive and negatives in your life and come up with a number in the middle. In the real world, joy and misery cohabit. We live with both together. Emotions are messy.
My head was a wheel of memories, a slide show carousel. Faces, places, good years, bad. Bittersweet, sad, joyous, funny. Strawberry jam that never jelled.
I married Jeffrey at 18 and thought myself very mature. He was almost 30, but he thought me very mature too. Both of us were wrong. Yet we muddled through. We were hard triers. When we had no idea what to do, we faked it. Eventually, we became the people we had long pretended to be and it turned out, not the people we needed to be for each other.
Though we went in different directions, we stayed friends. No matter where on Earth I was, I knew Jeffrey was there for me. We had a better divorce than most marriages. Decades passed. Jeff’s health deteriorated. He survived things that should have killed him, so what a shock he should die of the thing that was to extend his life. The heart surgery should have given him years, decades. When Sue called late on an August evening reality upended and everything screeched to a halt. No, his body wasn’t dead, but his brain was. The future world would be without Jeff. I would never call to tell him something funny that happened, hear his sarcastic, drawling response.
It wasn’t supposed to be this way. Someone rewrote the script when our backs were turned.
Fall passed and winter too. Jeff remained in a vegetative state. Someone who looked just like him was wearing his body and that shell remained alive through the seasons. We visited. I stayed for weeks to help care for him. Finally, as spring was nearly summer, the piper played. And now, the ashes were scattered.
Just the other day, Garry glimpsed a someone in a crowd who looked just like Jeff.
The best thing about retirement is not working. Although I don’t know what I will be doing in the future, I know for certain what I won’t be doing.
I won’t be out there working for a clueless, unappreciative boss. I won’t be getting up at the crack of dawn to scrape ice from my windshield, then driving 60 miles so I can be restless and bored for 10 hours, then do it again in the other direction.
Those days are over. I may end up living in a crate, but I won’t be fighting for a paycheck. It’s the upside of old.
Do I miss it? No. I miss the salary but I sure don’t miss the commute and or the deadlines.
John Howell’s “Rule is as Rule Does” which I reblogged the other day got me thinking about life and how we invent our own rules as we go along. I make rules for myself and I follow them with almost religious fervor. But I hate rules and resent them. I was born rebellious.
The only rules I follow are my own. What are those rules? I’m glad you asked.
I’ve had an interesting life in which the light at the end of the tunnel has pretty much always been the headlight of an oncoming train. At one point, I got so stressed I could barely breathe. That was when I realized I needed to do things differently. I had plenty of problems without stressing myself to death.
I began by getting a tattoo, a visible symbol of my life. It was an acknowledgement of change and in a way, an acceptance of my survival and the likelihood of having to do it over again. I didn’t know at the time how right I was. It is a large phoenix tattoo. It’s a one-of-a-kind, designed for me. I had it put toward the back of my left calf. I didn’t realize it was going to be quite so big, but I’ve come to quite like it. I was 57 when I got my piece of body art. It’s my only tattoo. One shouldn’t make permanent life decisions in a hurry or before one is old enough to know ones own mind (that’s a rule too). A tattoo is more permanent than most marriages, so if you’re going to get one, make it neutral enough so if life changes a lot, it won’t be a highly visible embarrassment for long decades to come. Spelling and punctuation count. A typo in a tattoo is with you forever.
It is difficult to take a focused picture of the lower back area of ones own left leg. Also it’s worth remembering that blue jeans leave red ridges. If you want a picture of a your own body or some part of it, getting someone else to take the picture is probably better. The good part? Both terriers were really excited when I took off my jeans and socks. I’m pretty sure they thought it was a new game. Bonnie figured maybe she’d score a pair of socks but I outwitted her and put them on the desk where she couldn’t get them. Hah! Gotcha! Anyway, asking Garry to take this picture seemed too weird and would have required more explanation than he or I was ready to deal with. So I did it myself. Someone else could have done it better. I’m just saying.
I never really formulated my rules before, so this has been an interesting exercise. I don’t expect anyone else to follow them, though they aren’t bad and I don’t think they would hurt anyone. They come out of years of doing everything wrong, of worrying myself into ulcers, of simmering with anger at injustice, and being frantic with concern over every ecological or political crisis. I never learned anything the easy way. These dozen rules work for me.
Laugh often. Cultivate friends who share your sense of humor.
If you can’t fix it, don’t brood about it.
Have a pet. Cats, dogs, chickens, ferrets, bunnies, reptiles, bats or birds. Anything but spiders. I don’t like spiders.
Don’t argue with stupid people.
When you know you’re wrong, give up and apologize.
Worrying is a waste of time. Whatever you are worried about, something else will happen.
Staying angry at someone who wronged you hurts you, not them. They aren’t losing sleep over you. Forget it. Move on.
Be a gracious winner. People may sympathize with a sore loser, but everyone resents a gloating winner.
The path less traveled frequently winds up at a dead-end. Before traveling down unmapped roads, be sure you know how to make u-turns in tight spaces.
When you have a choice, do the right thing. If you don’t have a choice, do the best you can.
Brutal honesty is inevitably more brutal than honest. Be kind.
If you’re an artist, do your thing. Talking about it doesn’t count.
One rule to rule them all:
Make your own rules and live your own life. Everyone is unique. Celebrate your difference.
I spent the day doing a task all photographers must face. It’s no fun, but there’s no avoiding it. Sooner or later, the time comes to weed through the pictures, to take stock and get organized. It was time to do more than simply store the pictures. I looked through almost every file, years of digital photographs. The artistic stuff, the family photographs, the vacation pictures and holidays. Time to discard the bad ones I should have dumped in the first place. I converted all the RAW and TIFF files to JPGs because I admitted to myself I am unlikely to need them. I’m not going to be making lots of prints … and even if I were, the printer wants high quality JPGs, not TIFF or RAW. Time to let them go.
Photo: Debbie Stone
It was a complicated decision, one of many realities I’ve had to face. Not as hard as most life decisions, but tricky in its own small way.
For the last dozen years, much of life has involved recognizing and accepting limits, then figuring out how to work around them. There are physical limits, financial limits. I can’t afford things I don’t really need, though I sometimes splurge on something I want very much, like a lens for the camera or a bigger external hard drive. There are always choices to make and priorities to set.
Now, it’s facing one more fact of life: no more wall space. No room for anything, not for my photographs or anything else. The walls are full of things I love. My photos are on display, but there are also paintings, some by friends, others bought at galleries in days when we had spare dollars to spend on non-necessities. Photos of Garry taken during his working years … with politicians and presidents.
Photo: Debbie Stone
He has awards and plaques and I have shadow-boxes filled with antique Chinese porcelain, Navajo pots, fetishes and figurines and Murano glass. Together we have a lifetime of vacation mementos and one small carved black peat cat bought in Ireland on our honeymoon. All the paintings, photos and things we bought on the Vineyard during a decade or more of summers. They need space. There’s no room, so I won’t be making lots of prints. I have dozens of paintings and photographs that were gifts from artist friends that I can’t afford to frame and if I could, I’d have no place to hang them.
I dumped hundreds of gigabytes of RAW and TIFF files. While I was organizing, I consolidated files of similar things. I have dozens of New England autumns, thousands of pictures of dogs, kids, dogs and kids, friends and their kids and dogs.
This task sounds a lot more interesting than it actually is. In fact, it makes watching paint dry seem thrilling, but it needed to be done. And while I was sorting, reformatting and organizing, back on Serendipity, I quietly slipped over the 44,000 hit mark. I’ll celebrate at 45,000 I guess, or maybe I’ll wait for 50,000. The numbers have been moving so quickly.
Awards … another Liebster, more followers – and I realize I have posted every day for more than six months. 868 posts as of tonight. Time has flown by. From thinking I’d put up an occasional post about something or other, maybe show some photographs … to recognizing that this blog has become important to me. It’s no longer a little hobby; it has become a focus.
I stopped bringing home a regular salary more than ten years ago when I became ill. I tried, intermittently, to work, but I couldn’t. Eventually, it became clear my career was over. My pride took a hit, but I don’t really miss work. I miss the paycheck, but work? Nope.
I settled down to not working and it required a bit of adjustment. I’ve never been bored. For a while I was too sick to be bored, but I’ve always filled time by reading. It’s my fallback position. Somewhere in there I wrote a book. That consumed a couple of years and after that, for a few years I ran an online antique and collectibles business, which is where many of my antiques and other stuff originated. It was surprisingly successful, but the economy fell apart. The type of stuff I sold was based on people having spare money for things that are just beautiful, not necessarily useful. With the handwriting bright on the wall, I closed up shop.
Han pot
If you aren’t going to school or working at a job, time tends to lose its shape. Blogging has given it a bit more form. It’s writing, which is as much who I am as what I do. As I move through my world, I look at the things I do and whatever is happening around me as stuff I can write about. When I hold a camera, I see the world in frames and perspective, I see colors and angles, light and shadow. When I think about it as a writer, I hear everything described in my mind, narrated.
Often, by the time I sit down to write, it’s almost written. It’s not always that easy, but sometimes it is. Sometimes words fall out of my fingers and it’s all just there, complete, waiting to put together.
Life has a rhythm, a pulse, a flow. From morning coffee to afternoon chores, to the evening when I write, watch a movie or some television, then write some more. Often, as now, I do both at the same time, something my husband finds baffling. If I think about it I suppose I’d find it baffling too, but I can do two things at a time. Usually. Depending on what the two things are.
If you’re waiting for me to get to the point, you’re out of luck. No point. Just a long ramble … rather like life.
In books, nothing happens without a reason. In literature, there are no coincidences, no accidental meetings. But life is full of things happening for no discernible reason. We can attribute meaning … religious meaning, omens, portents, whatever. But really, things just are what they are. We go from infancy to childhood then on into adulthood. We create goals and we push to achieve them, but the goals are not “real thing.” They are what we put in place to give our lives form, shape and direction, to make us feel purposeful.
It’s harder when you are older and in what I like to think of as your post-career because the kinds of aims and goals we had before don’t work and we have to find new directions. Most of us do. The classic image that young people have of old people sitting around doing nothing and just fading into the twilight is based on misconception and stereotyping. They are in a hurry to grow up, to get on to whatever it is they perceive as the next stage of life. They can’t understand what life is like when your primary goal is to enjoy your time, not dash through everything as fast as possible.
We turn to doctors to save our lives — to heal us, repair us, and keep us healthy. But when it comes to the critical question of what to do when death is at hand, there seems to be a gap between what we want doctors to do for us, and what doctors want done for themselves.
Producer Sean Cole introduces us to Joseph Gallo, a doctor and professor at Johns Hopkins University who discovered something striking about what doctors were not willing to do to save their own lives. As part of the decades-long Johns Hopkins Precursors Study, Gallo found himself asking the study’s aging doctor-subjects questions about death. Their answers, it turns out, don’t sync up with the answers most of us give.
Ken Murray, a doctor who’s written several articles about how doctors think about death, explains that there’s a huge gap between what patients expect from life-saving interventions (such as CPR, ventilation, and feeding tubes), and what doctors think of these very same procedures.
Jad attempts to bridge the gap with a difficult conversation — he asks his father, a doctor, why he’s made the decisions he has about his own end-of-life care… and whether it was different when he had to answer the same questions for his father and mother.
A chart of doctor responses from the Precursors Study:
Preferences of physician-participants for treatment given a scenario of irreversible brain injury without terminal illness. Percentage of physicians shown on the vertical axis. For cardiopulmonary resuscitation (CPR), surgery, and invasive diagnostic testing, no choice for a trial of treatment was given. Data from the Johns Hopkins Precursors Study, 1998. Courtesy of Joseph Gallo, “Life-Sustaining Treatments: What Do Physicians Want and Do They Express Their Wishes to Others?”
For the past 10 years, I have been speaking to groups about the value of embracing your mortality. I wrote a book on the topic and was featured in a feature-length documentary film and interviewed on TV and radio (including an hour-long interview with Dr. Oz on Oprah & Friends.
I have always been amazed at Western society‘s ability to pretend that death doesn’t exist. We think it’s perfectly reasonable to make plans for what we’ll do with our lottery winnings, or to save for a retirement that we *might* get to enjoy, but no one wants to talk about the one thing in life that is absolutely certain. When we make the conscious decision to face death on OUR terms, we are able to access a tremendous amount of personal power. Thanks to Radiolab for this fantastic episode!
With camera in hand, exploring European lands, cultures, food, and drink...mostly with a plan, but sometimes enjoying the adventure of just getting lost.
