My name is Sarah -
and I am going to die soon. I have already written to my husband and children, relatives and closest friends and they will have letters to remember me by and know how much I loved them. And why I loved them. Penned in my own hand with black ink, for no letter can ever be deemed personal if typed or even dictated. They will save them forever, each folding and unfolding the heavy, buff-colored stationery I used, for I am nothing if not practical, knowing it would be handled, to be re-read again and again; often at first, less frequently as time passes. The letters are private and never to be shared, as though spoken in a confessional with priest and parishioner encased in a dark, closed box. But listen to me very carefully now and heed what I say. I am fifty years old and way too young to die. Up until a short time ago, I was healthy and beautiful, vibrant and strong.
* * * * *
"Life is too short."
"Make hay while the sun shines."
"If I only knew then what I know now."
Ah, clichés. You gotta love 'em. How could we communicate without those endearing gems that allow us to be so lazy when expressing ourselves, everyone knowing what we mean when we sprinkle such shorthand into our daily conversation. Take a look at these phrases. A really good look. Damn it, LOOK! It means your time is running out. Honestly, it is. We think we will go on forever and then middle age, or worse, creeps up and pounces when you're not looking. I feel as if I've barely finished my twenties and yet the calendar insists I am fifty years old. How can that be?
I didn't use it all up. That time when I was in college or a young bride or a new mother. I didn't use up those glorious chunks of time. I didn't make enough hay or know what I now know or realize just how short life is.
I did everything right. I always had my annual physicals and wore sweaters when it was cold out and never talked on my cell phone while driving. I always crossed streets carefully and never walked in the dark alone. I got plenty of rest and exercised daily, running five God-damned miles a day, lifting weights three times weekly, and could bench 140 pounds on a very good day. I always ate right and cut out carbs, sugars and fats. I was a fucking poster child for good health and still, there are no guarantees.
Poor David. My sweet, sweet husband of almost three decades. He works at home now. In addition to his legal career, he has also become a professional housekeeper. Certainly a caregiver. He carries me to the toilet. He changes sheets and makes lunches and tirelessly and patiently keeps vigil over me. He is so scared; maybe more than I. I see it in his sad, beautiful eyes and his deeply furrowed forehead and the tight lines stretched across his mouth. Small wrinkles around those azure eyes now, strands of graying hair mixed with the brown at his temples, all so new. He holds me a lot. He whispers "Sarah, Sarah" into my bristly stubbles of hair that once was a long and thick burnished gold mane, my pride, while his fingers dug through the denseness of it down to my skull. Before all this. He still massages my head a lot and I still don't know why that calms him. It makes such funny scratchy sounds inside.
It was probably my own fault. I waited and stalled and procrastinated to have the little bump checked out. Something I am particularly fond of and very, very good at. My dermatologist didn't need but a minute to know. I thought he could remove it in his office but no, this was going to take a skin graft and a six to eight week recovery. Oh.
Two days later, the plastic surgeon confirmed the diagnosis. I asked if he could schedule the surgery in four weeks as David and I had an anniversary trip planned. He suggested we schedule it tomorrow. Oh. We compromised on a three-day waiting period. A three-day get used to it period. A three-day get ready for it period.
We didn't speak of it much during those three days, David and I. Not really. I was so afraid for myself but even more afraid for him. About him. I was scared of scaring him with my fear. He felt the same, so we didn't talk. We danced about while paralyzed with it, inferred and referenced it, verbally sketched about it; spoke of it as if we were animated brushes in a moving painting, leaving broad strokes and watered-down muddied colors on the massive canvas.
This tumor that caused such a paralyzing, freezing fear. This growth that mushroomed and encompassed our thoughts, minds, movements, and responsibilities. The tumor was not the only or largest malignant growth. It was the fear. The unknown.
We waited for the few days. We tried to stay busy, of course, securing a walker and crutches, filling all sorts of prescriptions and then lining the identical bottles up on the bedside table, like a battalion of little cylindrical sienna-colored soldiers, ready to fight my battles at my command. A coaster with an empty water glass and pitcher stood guard, at the ready. We grocery shopped and stocked the 'fridge and freezer with anything and everything. We bought way too much food we both knew we would never consume. We moved in unison as if choreographed, making calls, telling only those we had to tell, calming children and parents both, following orders, directions, instructions - like the lowliest privates in the army, never questioning anything, anyone. We made very careful love, barely moving, unlike our usual aerobic sessions. We couldn't get close enough physically. We touched the most mundane parts of our bodies with such interest, like elbows and earlobes and the soles of our feet. A careful and gentle love, as if we both were made of glass, fragile and so breakable. And we were.
We did what we were told.
We arrived at the hospital on time, filled out reams of forms and watched the others around us parked in the oak framed mauve patterned chairs, the décor chosen to calm jangled nerves and sooth the savages, waiting to be chosen or those they loved to be called. All faces were pale and tight with eyes rarely straying from the straight-ahead position or the corner television mounted six feet above our heads. CNN. The looping trailer at the bottom of the screen as robotic as the viewers.
She stuck her head out from the bowels of the inner sanctum and chirped my name and I followed the call again, like a lamb to the slaughter, to overuse an overused phrase.
At least she had the good grace to leave the tiny cold cubicle while I undressed. The ugly gray-green hospital gown with its so faded diamond pattern was wrinkly-folded with tired and very sparse spaghetti strings sparingly snaking across the almost-white bedding. Standing at the end of the narrow hospital bed for a while and staring at the proffered garb, I wondered who had worn it before. How many others. And why. And if they had all survived. Or any. A shiny white plastic bag for my personals, though nothing here is. My name slashed across the top, right below the hard plastic handles, in thick black magic marker. I could still smell it.
Through the thin cotton divisional curtains, I could hear quietly whispering voices; male, female, non-gendered, it made no difference. IVs started and in various stages, dripping through different veins, different formulas for different cases, all the same. Clear liquids dropping drops through clear tubing, needles well planted in forearms, some already badly bruised. No place for modesty. No place for privacy. No place to be.
"You can keep your panties on," she had said. I had carefully and thoughtfully chosen red silk panties that day, French-cut bikinis, to either boost my spirits or match my blood. I wasn't sure which.
We prepped patients were all on the same team, easily identified by the same uniform of immodest hospital gowns and rubberized tan socks, ironically, the only almost-color within the inner sanctuary of the frosty hospital and its rows of sterile O.R.s. Except for my red silk French-cut bikinis. All my teammates waiting to be cut, stitched, bandaged, patched, removed or restored, each one with a unique story. All the same. Robots.
Medium gray walls, light gray linoleum floor with darker gray streaks patterned throughout, worn in spots to an even duller gray. The artwork on the walls merely scotch-taped posters crusading those who do to stop smoking or asking those who can to donate blood. Save a life. Frayed borders, curled corners. Icy. Austere. Intentional? Is visually ugly a part of the process? Is frigid cold a requirement? I must have mumbled aloud. "No," she says, "Efficient! I can get you a blanket."
It smells gray, too. That acidic antiseptic burning-in-your-throat ashy smell. A zombie smell, drained of color smell.
They bring David to me when I am prepped and ready to go, tube dripping and numb. Why he is sequestered before I cannot imagine, nor do I ask. He's not allowed to see me undress? He cannot witness an IV being started? We barely speak, no, mumble, about nothing. We hold hands. I shiver despite the warmed blanket they've brought and again I wonder who craved its comfort before I did. What happened to that person? Where might he be right now? How cold?
The scrub nurse comes back, this time conducting her imaginary orchestra with a Sharpie pointed black marker and after confirming with us both, slashes my lower left leg with an arrow and writes "LEFT LEG" then "NOT THIS LEG" on my right appendage. She asks me to initial her composition. I am tempted to add a treble clef to my doodle but manage to resist. This is not a place for a sense of humor; humor has no place here.
My doctor comes in, serene, dignified, tall, majestic, speaking in hushed tones, his South African accent somehow reassuring, why I don't know. We Americans always think the English are so refined, worldly, knowledgeable and sophisticated, and his accent sounds the same. He looks wonderfully natural and at ease in the baby blue scrubs, booties to match, surgical mask casually dangling under his chin. He reassures us both, as if that were possible, tells me about the next two hours that I will have absolutely no recollection of later, please God, and speaks to David about his role as caregiver after the recovery room and lots of basic crap. Except that it's not. This is not a place for bullshit; bullshit has no place here.
David and I kiss good-bye and they roll me into an even colder room, blinding lights blinding me, and I shiver uncontrollably, begging for another blanket. My request is immediately granted as the gas man tells me to start counting and that I will be asleep imm...edi...a...te...
* * * * *
I am home. The four walls of my bedroom prison enclosing and pressing in on me. What once was my favorite sanctuary, where I expanded my mind with books, was entertained with movies and television, excited my body with sex, now became my cell. The sage colored walls with such beautiful lithographs and paintings, each piece so meticulously selected and thoughtfully framed, the burled cherry king-sized sleigh bed with matching nightstands on either side, across from the three-doored oversized armoire with the brass hardware, the needle-pointed throne-like chair I stitched myself so many years ago diagonally placed in the right corner, the magnificent antique hand-carved Chinese desk and chair on the opposite side, which originally belong to my maternal grandfather and scattered photographs of our kids at various and varied stages and ages in their beautiful Swarovski-jeweled Michael Hero frames, winking back depending on the time of day as the sunshine hits from the windows on the eastern wall. This room that once held all the best pleasures of my life metamorphosized into my cage. I wondered for how long it would actually be and if the doctors' predictions of two months would be accurate. I thought about whether or not I would want to redecorate when this was over.
And they lie, too, you know. All those doctors. It was eight weeks before I could get myself to the bathroom alone or traverse the floor on crutches those few yards. It was eight weeks before I could fend for myself, or feel sorry for myself, or be so angry at them all. I cried a lot during those first eight weeks because I was maimed and scared and in blinding, searing pain. I loved my morphine pump before they took it away. Even when gorked out on the other drugs, I still screamed into my pillow. The searing, throbbing, white-hot pain was relentless and I did not deal with it well or with grace.
My mother died during that seventh week of recovery. To this day, my surgeon doesn't know I flew to New York but how could I not go to my own mother's funeral? United Airlines was very accommodating and gave me lots of space...three seats across all to myself, a medical emergency and a bereavement fare, too, please...with David, Jessica, my tiny, blonde daughter and Mark, my huge, dark son, standing guard over me, running interference for me and surrounding me, like linebackers for their quarterback. My protectors from the hoards of swinging purses, carry-on luggage and over-sugared children. My leg was encased in a large plastic shin guard that soccer players wear and the cane helped me keep distance from other potential obstacles that might prove very hazardous to my health. It was a trip I barely remember, as if those gossamer bandages were wrapped around my eyes as well as my lower leg. The drugs helped; Vicodin, Delaudin, Darvon, Percocet, Valium, Percodan; my cache was unlimited of course, but the pain was still blindingly distracting to the point of obscuring the event. I walked, no, I limped, no, I hobbled around like a drunkard after last call as if in a fog, a stupor, and certainly a drug-induced daze. I barely remember any of it, which probably was a blessing in disguise.
Now, half a year later, it rules my life, this scar of mine. In so many ways, it dominates how I feel, how I dress and how I look. It often causes pain that propels me to a slower gait, a tilted limp, a sloped posture. The physical scar that impregnates itself and grows into a new dimension, into a new life, pairing itself with the newly formed mental scar it creates and nurtures. This monster scar. This monster scare.
It looks like it feels, so sinister and sneering and huge - bright reddish-pink with blotches of white here and there, both visually and tactilely textured with a consistent bumpy surface in the indented crevice, like a tiny bumpy-patterned sock that has too much elastic woven in. A gaping hole like the mouth in Edvard Munch's painting, The Scream. A perfectly round circle, yet funny, how the square patch on my hip where the graft was harvested from is smooth, although the site "weeps" so often and makes such a mess in the bed or on my clothing, should I have the energy to dress at all.
It is a grotesque hole. The round edge is sharp-lipped and well-defined and it looks like a baseball was thrown into a block of cream cheese and sunk about a third of the way in before coming to a stop. Almost four inches in diameter. Easily noticed at twenty paces just above my ankle and perfectly centered below my knee. Ugly. Hideous. This souvenir.
On the rare occasion when people who do not know ask, I say "it's a shark bite" in a quiet voice and with a straight, set face. That stops them from questioning me further although it's easy to see that they want more of an explanation. When? Where? You just know they are debating whether they dare ask. But I say nothing and derive some nasty pleasure from their discomfort. I know it's mean. I don't care. I think it scares little children. I don't care. It hurts. I hurt. Let someone else feel my pain.
Cancer: a: a malignant tumor characterized by potentially unlimited growth with local expansion by invasion and systemic by metastasis b: an abnormal state marked by such tumors c: a source of evil
Six letters when formed in that particular order that bring fear to the bravest and reduces all of us to sniveling, shirking, shrinking cowards. Two syllables that make you plan elaborate deals to present to whatever God you worship or believe in or even think might just possibly exist. You cover all your bases. You pray to Him through your Catholic friends, Jewish friends, Buddhists, Hindus, Moslems and any other acquaintance you may ever have had and you thank your lucky stars you firmly believe in diversity. One word that unites every person around the world and puts life, or lack thereof, in its proper perspective. Cancer.
Dermato-fibroma. Cystic sarcoma. Your newly acquired vocabulary additions.
In this day and age of worldwide webbery, it astounds me to realize how quickly one can become an armchair expert on virtually any subject, given the degree of your frenetic determination, quizzical lust, intellectual comprehension and Google. Site after site and in a few hours you know as much as any pathologist or oncologist.
And, past the initial few months of staggering through physical therapy, the bandages and wraps and shin guard protectors and the prescriptions and doctor's appointments so numerous that the calendar was only filled with physicians' names rather than any social dates, I survived.
The plastic surgeon really did a masterful job, even if he did remove a chunk of my body. I joked that I was his only patient who looked worse after surgery, for he had more than his share of noses and breasts, tummy tucks, lifts and suctions and all the other useless cosmetic procedures that some women think buys them Eternal Youth and for what? They're still going to die.
Ditto for the brilliant dermatologist who caught this little mass and sent me down the path of no return. And, let's not forget the pathologist whose original diagnosis was so severe that the oncologist was tempted to amputate the leg immediately.
Doctors: can't live with them, can't live with them. I hate them all. They cause pain, disfigurement, mental anguish and financial ruin. And they don't care. Not at all. Not one little bit. They congratulate themselves on the diagnoses or cuttings or anesthesias or medicines or examinations, but they have no clue whatsoever about the other damage they truly cause. And yet we worship them. We're grateful to them simply because we survived. I love them all.
But I'm still so scared. Some people fear dying in a car crash while others are convinced that an airplane will plummet down to the earth from 35,000 feet while they are onboard. Perhaps a stomach cramp after eating will cause your drowning or a hideous fire will tragically take your life. Not me.
Absolutely and without question. It will probably be a slow, painful and horrible death, too. Aren't they all with cancer? I will always be looking over my shoulder now. Sooner or later, it will get me.
I only hope someone will love me enough and be brave enough to help me end it, should I suffer - needlessly, for all suffering is, in my opinion. I don't want to be brave or stoic or heroic. I don't want to inspire anyone. I don't want to die while on chemo, either.
I hate throwing up. I don't want to be bald or skeletal-skinny or have skin like translucent onion paper, crackly and audible, and the color of bluish-white skimmed milk. I am neither tough nor strong. I am frightened. I am obsessed. It is part of my daily life and I can't seem to shake it and I don't think it's going to change. Not ever.
The pain remains and reminds me every day, still. "Nerve damage was too great." "This is as good as it will ever get." "You were lucky," those doctors declare! Lucky that the radiation only burned a little, lucky that the graft held and was accepted, lucky that I still have the leg at all.
Boy, am I lucky.
So, how come I don't feel so lucky?
Because the phone just rang. Because the six-month follow-up tests came back. Because it has returned.
They want to amputate next week. Above the knee. I have five days to "get my affairs in order" which means what? Call my lawyer and make sure the will is updated? Call my children and tell them, like I did before, that "NO! Don't worry! I'll be just FINE! NO! Don't come home! We'll call as soon as it's over. NO! I'll have help in the house and you should definitely NOT quit your job and fly back to be with me! NO!"
No. I have decided not to do it. We know it's a slow moving cancer. I will have some time. Good time. Quality time. We've talked about this possibility before, David and I, but never when it was real and tangible. He is furious with me now but I still won't let them take it.
Of course I am afraid. I am terrified. Terrified of so many things I can hardly count that high. So frightened that my breath catches in my chest and I feel as if I am drowning in the air. Scared to even try to inhale deeply because the pressure in my lungs feels like a concrete skyscraper has collapsed on me and I am lying there, unable to cry out for help. I imagine those survivors of 9/11 hearing dogs barking, rescue workers digging, firemen shouting to one another and still they are pinned so tightly they cannot yell to them. "I'm still here. Alive. Help me. Free me. Save me." I can clearly imagine them in so helpless a position. I am helpless, too.
You might think that death is the scariest thing anyone would ever have to face. Maybe it is. I suppose I should think myself fortunate that I don't know that. Yet. But I also think there are things worse than death. At least for me. I shudder to think of living the rest of my life as a cripple. Maimed. Dismembered. Weak. Helpless. What if I lose both legs rather than just one? Two stumps to stare at rather than just one? Oh, my God, yes. There are things much worse than death.
Of course I am afraid. Nauseated with fear. Almost catatonic. I just can't imagine such a drastic personality change that would allow me to allow David to do what he would have to do. Carry me from wheelchair to seat. Dress me. Bathe me. Wash my hair when I have it. How pathetic to say that, imagine that, live that.
And he would, of course. He would treasure every act, so personal and intimate. He would never complain. He would be gentle and caress me so tenderly with such love and devotion. But for how long? How long would it take before resentment, sorrow, loss and anguish are realized? Recognized? Regretted? No, I can't imagine such a thing. Not for him. Not for me. I would, in fact, rather die than live completely dependent on anyone, even the one I love most in this world. No, death is not the worst thing to fear.
Suffering is far worse. Pain and torture and lack of dignity. Never being able to have a personal moment again. Hovered over. Attended to. Pitied. Watching David and the kids watching me - a Death Watch - waiting and wondering, today? Tomorrow? Will I make it to next week?
Of course I am afraid. I am so scared of the unknown. Is there really a heaven? Life after death? Is it possible to try and believe that I will be able to watch from above like in that novel about the murdered girl, The Lovely Bones. She watched her family and friends from above. Could I? See my sweet David go on and start another life, my gentle Jessica and my tender Mark marry and have children, all of them happy, healthy, successful, content? Dare I dream for that? Will praying help me now? Is it too late for that? Can I make deals with God?
Of course I am afraid.
David and I argue round the clock now. Because now it's real.
"No," I state calmly, and I am, eerily calm. "I will not do it. No. I will not trade a few great years with the leg for a possible decade without. I will not stand being totally dependent. In fact, I will never stand. No."
"Sarah, you're being absolutely insane. I will not let you die without a fight. How can you choose to die? What about me? What about the kids? How can you think we are not worth it?" David pleads with his words and his eyes.
"It's a quality of life issue and I am too old and tired to become some inspirational story about fighting back and learning to be somewhat self-sufficient. No."
He paces and seethes at my stubbornness. A streak he has always known. He tries to stay calm but cannot. He shakes me by my shoulders and stares into my eyes from a few inches away, trying to awaken my thoughts to his.
"SARAH! I love you. You know that. I don't want to be without you. I don't want to miss whatever time we can have together. You cannot NOT do this," he shouts at me. He is so very angry. Then quiet. "Sarah. Please don't leave me alone."
Maybe I am being unfair to my family and even to my friends. I'm sorry, really I am, but this is about me and what I've decided. This is my choice and I am quite serene with it. They can cry for me in private. I don't want to see it, though. Not now. Later, maybe.
I just can't stretch my imagination far enough to see myself spending the rest of my days as an invalid. Legless. I can't imagine not going anywhere a chair cannot go. I refuse to make my David my slave, carrying me from here to there, giving up so much of his own life, his work that he loves, is devoted to and so brilliant at. Our active lives, travels, jogs, bike rides, summer evening walks. Our simple pleasures. They will all be gone as quickly as the leg.
Maybe he will remarry and have a second chance at a fulfilling life with someone he can love. He deserves that. He's too young to sequester himself with such a burden. David doesn't know that now, but I believe he will, eventually. I don't tell him this.
My children will be so angry at me initially, too, of course. They will be devastatingly sad, for we are so close and loving, together and separately. I know they have strength that has not yet been tapped. They are strong and resilient and will continue forward with careers and marriages and children of their own. I don't tell them this.
David, Mark and Jessica will form even stronger bonds. They will be all right. In time. I do not tell them this, either.
My friends can send me flowers and I will write proper thank you notes. They will bring casseroles to freeze and fresh fruit baskets and bake delicious cookies and brownies and offer to walk my dog because that's all they can do and doing something, anything, makes them feel useful and needed. And they are.
Someone needs to invent a crystal ball for us mortals. If we know when we are running out of time perhaps we would be more productive. Have more children, make more money, take more vacations, play more, sleep more, whatever it is you want. Make love much, much more. Hug your children more and tell everyone you love that they are dear, important and adored.
All those clichés must have been penned for a reason: Make hay while the sun shines; Life is too short; If I only knew then what I know now; Don't put off until tomorrow what you can do today; Too little, too late; closing barn doors after horses are gone, hindsight/foresight, ad nausea. We know we should heed the advice but we don't. We, all of us, are lazy, selfish, self-absorbed and careless. "I'm busy! I have THINGS to do! Important things like the grocery shopping and dry cleaners and laundry and errands and the dog and volunteer work and the kids and housework and and and ?" We still don't stop to pick up the phone just to talk. For no reason whatsoever.
We should. You must.
Do it. Go to your address book and call every person you haven't seen or talked to in the last six months. Write a letter or e-mail. When it's too late you won't be able to fix it. Tomorrow could be too late. TODAY could be too late. Do it. You must let them know. Just that you're thinking about them, hope all is well. Do it.
Don't wait. You won't be sorry. You'll even want to thank me. Don't forget to thank me. Don't wait to thank me. Thank me now.
Lucy SilverSmith (a.k.a. "Sarah") received her MFA in creative writing from the University of Denver in 2007. She has written two novels, a newspaper column, various essays, short stories, and a play that was produced on stage and film. She lives in Colorado with her husband of almost forty years, is the mother of two and grandmother of two. Unlike Sarah, Lucy kept her leg and is doing well nine years later. But the lesson remains with her. She says that writing about her illness was the best - and perhaps only - way to shake off the fear that became so paralyzing and consuming.