Health Scare

Photo of author by Kevin Tomasello c. 2015

I need to write about something I don't usually write about. I was challenged by an online writing group to write about something on my blog that I am afraid to write about. Since there is a long list of things that I fear, I will start with something I deal with every day: healthcare.

I have had careers as a registered nurse and a speech language pathologist (still currently working in this field). I have worked in three different states for several different types of facilities: hospitals, nursing homes, home health, a university setting, rehabilitation, and transitional care. I take my job very seriously and care deeply for the people in my care.  The political climate makes me ill, but no matter who you want for President, our health care system still needs an overhaul. We talk of "patient-centered care," but very few health care systems are set up  to actually take care of the patient's needs. People enter the hospital with a given diagnosis and if they have a problem that isn't part of that diagnosis, they are discharged and told to follow up with their doctor for whom they won't get an appointment for weeks or months, depending on what the problem is. Patients are pushed out of the hospital earlier and earlier, unless they have the right type of insurance, then they may stay longer than necessary. A patient came in with a huge tumor on his tongue and one protruding from his jaw and cheek. A chest x-ray revealed more tumors in his lungs, showing that the cancer had spread to other parts of his body. The man was deaf, used sign language, and had trouble speaking because of the tumor on his tongue. The doctor decided that the patient was "mentally retarded based on conversation." She did not order a CT scan of his brain. Instead, she ordered speech pathology to see him for a "cognitive evaluation" to determine if he has capacity to make decisions about his care. This is not even in my scope of practice. I could write about many more disturbing examples I have witnessed, but my aim is to keep this post at a reasonable length.  It seems that far too often our healthcare system still can't see the whole picture when it comes to taking care of sick people.

I am a big proponent of palliative care for those who desire it or for families making decisions for loved ones who can no longer decide for themselves. For those who are suffering and have little hope of recovery or for whom continued treatment will offer only more suffering in order to live a few months longer. I have found, though, that palliative care, at least in New York State, is greatly lacking. A friend with metastatic lung cancer to his brain had fought a brave battle and had some success with gene therapy that extended his life and quality of life for two years. When the treatments stopped working and he became very weak and ill, he and his wife decided on comfort/palliative care measures through a home hospice program. When I went to visit him, he could barely speak more than a word or two at a time in a whisper due to his weakened state. He kept asking if he could go back to the hospital. When I asked him why, he didn't say that he was afraid of the pain or that he was afraid of dying. He wanted to lift the burden of care off his wife. His wife explained that my friend was upset because he didn't want her to have to wash him, change him, feed him, and stay up half the night with him when he was restless. He couldn't understand why the hospice people didn't help and why he couldn't go to a facility to receive more care. Aides came in a few times a week for an hour or two at a time to bathe him, but no one came overnight or to take care of anything else, and much of the stress was placed on Joe's (not his real name) wife to take care of his daily needs. This caused him more distress than anything the cancer threw at him. Because they had no children and no family locally, the entire load was placed on Joe and his wife to manage his own hospice care. Joe's wife is a strong lady, but she jeopardized her own health taking care of him. She was pale and thin, chronically fatigued, had to take a leave from her job to care for Joe and she was the one who had to run out to get more supplies, leaving Joe alone in the house each time.

Hospice may work better if you have a large family who can take shifts to help, but this is not the case with many families. Those with the right insurance may go to a nursing home, but there is no guarantee that you will receive more or better care there. Skilled nursing facilities are overcrowded and understaffed. It costs approximately $6,000 a month or more to stay in a Medicare-approved nursing home in New York State. If your hospice care in an nursing home includes procedures that help pain, like radiation to shrink tumors that are impinging on nerves, the cost if greatly increased. Home hospice is less expensive, but you receive much less care and if you enter into any hospice program and you live longer than six months, you have to pay back any money paid by Medicare. Many other insurances don't even cover hospice care. In addition to the burden of watching their loved ones die, families also suffer an often catastrophic financial burden from which they cannot fully recover.

I'm sorry that the United States is not the leader in healthcare it claims to be. People get incredibly worked up when anyone wants to change the system and perhaps those people have been fortunate not to need healthcare to any great degree, but your life can change in an instant. All it takes is one bad accident, one cancer diagnosis, one neurological event to change your life forever. No one is immune and if we can't figure out how to help each other better in this country, I am afraid for its future.

Don't Let the Devils Diminish Your Drive

The view from our wedding 2001

At right is a photo of the view from the fishing boat-turned-nature-cruise-vessel where my spouse and I tied the legal knot almost 15 years ago. This is my second marriage, and it is fraught with more turmoil, but better results than my first. In other words, marriage takes work, just like anything else in life worth doing. The clouds make for a spectacular sunset.

Our marriage has weathered a few storms well, but sadly, our little wedding boat was destroyed in a storm just a couple years after we were married. We cherish the memories and few photos of that day: content that our union is stronger than any storm.

What does this mean for my writing?

A fellow writer on a welll-known writing site expressed his worries that maybe he should give up writing all together after his beta reader (one person) told him his project of more than ten years was flat and lifeless. I understand this thinking, believe me. Skepticism usually wins out over optimism in my brain. Any little cheerleaders are skewered by the talons of the diminutive devils that grace my psyche on a daily basis. Indeed, it is far easier to give up in this writing world than to plow ahead. I have limited time to write and even less time to submit completed works, so each rejection packs a double fisted punch. My inner voice is my worst critic, often urging me to give up because it's all useless anyway--or so the little demons would have me believe. People, whom I considered close friends, failed to buy my book and the woman whom I thought was my soul sister and strongest supporter, emailed me a rambling clinical opinion devoid of any praise or encouragement. This is when you realize that your friends don't necessarily care about your writing as much as you. When you get over the shock of this discovery, you understand that you are the only one who really cares that you wrote anything at all. Reality can suck the life right out of a writer.

Fortunately, you will also receive heartfelt comments about your work. Someone takes the time to comment on my blog or tells me they loved my book or they thought my short story reading was spectacular and I admit, I am renewed. I don't believe writers who say they write only for themselves. If I only wanted to write for myself, I would stick to the journal and not try to publish anything. I write to connect to others, to communicate ideas, to share a story, and yes--to receive feedback. It's a big ol' unsympathetic world out there most of the time, but that doesn't mean I, or anyone else, should give up what they feel they are meant to do. I intend to keep writing and working on my craft to improve. There's always room for improvement, but if you write...you must write, no matter how hard or discouraging it may be at times. Take the criticisms for what they are: opinions. Use them as a springboard for writing it better or if it's only one opinion, remember it's only one person's opinion. It's not the end of the world, I promise, even if it sometimes feels like that. Have a good cry or a strong drink or a hard run or whatever you need to do to slay the dragon then get back at it. No one decides that you fail except you. Be a clever devil, turn your back on the the darkness and face the sun.

Cheers! Now get to work.

Forward Movement

Sunset over sand bar to Bar Island at low tide by Laura J. Bear

A review and a plan:

2015 was a big year for good things. It witnessed the launch of my first novel: WHERE THE HEART LANDS in March. I turned a half century old. My son got married. I had the good fortune of participating in two writing retreats: the Cayuga Lake retreat with my writing sisters and the New Hampshire Berlin Writers Retreat at Coppertoppe Inn in Hebron, NH where I was reunited with the extraordinary writer Greg Norris and met several wonderful new friends in person after hearing about them for so long.

We were not immune to sad and tragic things in 2015. We lost our dear friend Mike. The news brought ugly events into our home: racism, torture, death, general inhumanity, and a more and more divided nation with crazier political ridiculousness every day. My fifty-year-old body was suddenly less able to deal with chronic pain issues and stress. With sorrow and age comes renewed appreciation for everything I take for granted every other day: the warm sun on my face, the rain pinging on the rooftop; the kiss of wind on my skin; my family; my health,; my friends; trees, water, birds, animals, nature; quiet; laughter; a bicycle ride; live music; writing; my ability to read; the fragility of life; the capacity to love someone more than yourself; the simple sharing of my day with my spouse; the touch of his hand; the knowing that someone else cares about where I am at any given time.

Each new year offers a fresh page to my story and  I am setting some goals for 2016:

1) Choose kindness over being right, especially in my own house!
2) Write something every day, and don't sweat the word count.
3) Submit a short story every two weeks.
4) Write at least one nonfiction article a month.
5) Finish the draft of novel #2.
6) Play my mandolin or guitar at least every other day.
7) Think before I speak, and listen more than I talk.
8) Cook on the weekends and  freeze dinners for the work week.
9) Laugh more.
10) Go for it: I'm not getting any younger. Quit striving for perfection and jump in.
11) Learn from my mistakes and move on.
12) Get outside every chance I get.

May your new year be your best one yet.

Be Golden

Golden reflection at World's End State Park photo by author Laura J. Bear, October 2015

Since we are having such an unusually warm December so far, I decided that a snowy picture just wouldn't work. Besides, I thought it it might be a good time to talk about some things that have been on my mind, if you'll indulge me for a moment.

The news lately has been distressing: senseless mass killings; discrimination of any number of people; fear so widespread that people are willing to cling to their weapons and their insular slice of the continent at the expense of their humanity; bickering, blaming, name-calling, and general ridicuous behavior of most of our politicians; the rampant materialism and increasing division of our nation. It's enough to make me want to scream...or lash out...or cry...or throw up my hands..or just throw up. Not to mention that this season of supposed good cheer and altruism can be a depressing hell for people who have lost loved ones because their pain is amplified by the fact that everyone else seems so damn happy. I truly can't stand it sometimes.

Yet, I am instantly lifted from the sucking power of this dark mind-muck by the tiniest hint of sweetness--a sparkle of humanity. When I am at my absolute lowest--when my heart is raw and bleeding and open in my chest, vulnerable to the jagged blade of hate--that's when I am most sensitive to the smallest kindness, the quietest act of love. A stranger holds the door open, makes eye contact, and smiles. Someone stands up with you when you speak out against the harming of an animal or some other wrong. Last week, someone told me how much they enjoyed my novel, that they loved my characters and related to them. I can think of no greater praise for a writer, and  I was deeply moved. As silly as people may believe social media to be and as easy an avenue it can be to spread lies and hatred, social media can help people join together: to learn, to grow, and to share the good things that humans do for each other. We can lift each other up, just as easily as we can tear someone down. Why not search for the gold? Caring about others doesn't subtract from your soul, it adds to your happiness bank. The more you care, the more you care. The more open you are to the experience of other human beings, the more open other people are to you.

It doesn't matter what we look like or what religion we follow or don't follow. It doesn't matter where we live or how screwed up our families are. Politics aren't people and shouldn't be treated as such. It doesn't matter what you wear or how big your house is or how much money you make or what the hell the Kardashians are doing. We're all people, damn it, help each other. Take care of each other. Take care of the Earth--our only home. The only thing worse than hate is apathy. The only cure for hatred and apathy is that four-letter word: LOVE. Can we please stop being assholes to each other? A divided nation or region or neighborhood is the breeding ground for terrorism. Hate feeds terrorism. Terrorists win every time we act out of fear and hate. So, just stop. No matter how much it bugs you, be golden instead. You want to lighten your own load? Lift someone else up. Notice how the water in the photo above looks like spun gold? Water is not inherently golden, it reflects everything around it. Be the gold and see how it reflects back to you.

The Company We Keep

Photo of view of Newfound Lake from Coppertoppe Inn,  Hebron, NH by Laura J. Bear

I just returned from a wonderful wrtier's retreat at a magical place called Coppertoppe Inn in the foothills of the White Mountains of New Hampshire. Not only was the scenery breathtaking, with views from every room, but the company was stellar. Ten writers converged upon the Inn (including me) to share their work, refresh their spirits, and, well...write! It was my great fortune to be invited by a champion of writers: the extraordinary Gregory Norris, author of The Fierce and Unforgiving Muse, the screenplay for Brutal Colors, and Tales from the Robot Graveyard, among many hundreds of other titles. Greg is the quintessential writer: prolific with a seemingly infinite arsenal of ideas; organized with beautifully decorated files, notecards, and notebooks; and incredibly supportive and encouraging to other writers. Check out his blog: http://gregorylnorris.blogspot.com/. Through him, I was able to meet members of the delightful Berlin Writers group--all talented writers and lovely people in their own right.

I had been greatly needing a retreat with like-minded people. An all-consuming day job coupled with the urgent prodding of my latest project, my second novel and all the necessary daily routine stuff, not to mention the daunting task of continuing to promote my first recently hatched novel without being a bother, had depleted my soul. The desire was still there, but I had run out of fuel. I needed to recharge--a creative jump start. I found that in New Hampshire over Halloween weekend.

I arrived a day early, as my drive was the longest: six and a half hours through eastern New York, Vermont, and part of New Hampshire. One of my hosts, Sheila, of Coppertoppe Inn, greeted me on her way out to prepare for the arrival of the group the next day. Her husband Bill took over with charming and interesting conversation and recommendations for dinner in town. I had a luxioroius room with private bath and the breathtaking view above. I began to unwind and settle in for a night of writing after dinner, anticipating the arrival of the infamous Berlin Writers group the next day.

I decided to begin my morning with a  hike down the road from the Inn on the trails of a bird santuary and nature center with views of the lake. As I emerged with some confusion from one of the more overgrown trails,  a car crept down the steep dirt road to the park entrance. Peter Estabrooks and his wife, the poet Esther Lieber-Estabrooks surpised me with a warm greeting and to let me know that I should be receiving a package from them at the Inn today. This confirmed what would be an extraordinary weekend.

The rest of the group trickled in over the morning in small carloads until we were all assembled into our accomodations and had been introduced. The vibe was electric and inviting. Some of us set right to work, while others took some time to relax and enjoy the surroundings. Murder mystery writer Irene G. and I instantly connected on another walk to get the kinks out before sitting to write. The talented writer and artist Judi C. quickly became a soul sister. Heaven is in the kindred spirits you meet along the journey.

On Friday evening, we agreed to read from one of our new works. I had been playing around with a short story about one of the central characters in my new novel. The reading forced me to dig deeper into it. The group consisted of writings from all different genres. Each person read with passion, and the group gave constructive criticism: honest, but never mean. Each fellow writer contributed something with genuine care. On Saturday, it was determined that we must write a short story  of 1,000 words or less with Halloween as our writing prompt. As someone who struggles with finishng anything in one month, much less in one day, this was a daunting task for certain, but I was up for the challenge.

As the newbie to the group, I somehow missed that I was supposed to have a Halloween costume for Saturday night. Sheila came to the rescue with a chic vintage hat, black fitted blouse with gold details, and a wild black skirt for my transfromation into Dorothy Parker. Each reading was a new joy and my heart grew full. The aptly named Newfound Lake was the backdrop for this retreat, and indeed, I cherish my newfound group of writer friends: Irene, Esther, Judi, Bernie, June, Natalie, Jonathan, Tina, and, of course, dear Gregory; and my inspirational hosts: Sheila and Bill, who extended the warmest hospitality one can imagine. Words are inadequate to express my gratitude for the gift of that long weekend, but words are all I know, so I hope they will suffice. Thank you all.

Blood Moon Rising

Super Moon Blood Moon Lunar Eclipse 9/27/15 photo by Kevin Tomasello

Harvest moon, blood moon, total lunar eclipse, supermoon: all this happened at once this month. The moon was its closest to the Earth on September 27 to 28th, causing its greatest gravitational pull on our planet and offering a rare view of our nearest orbiting neighbor. A super moon is the closest full moon to the earth, which makes for a gigantic luminescent orb as it rises in the darkening sky. Although the term blood moon denotes gothic images of werewolves, vampires, and witches, its scientific meaning is less dramatic. A blood moon is a relatively new term for the fourth total lunar eclipse in a tetrad: four total lunar eclipses separated by six full moons (six months) with no partial eclipses between. According to Earth and Sky earthsky.org,  the term blood moon carries religious significance as a prophesy for the end of time. I'll let you read more about that on their website, but there seem to be so many signs of the end of days that I wonder if these days are in fact much longer than our 24 hour days? In any event, it makes for a spectacular night image with associated chills up one's spine. This moon also has the distinction of being a harvest moon: the full moon that shines closest to the autumnal equinox. The brightness of this full moon supposedly allowed farmers to work at peak harvest late into the night. Great story fodder, in any event!

I've been feeling the gravitational pull of my writing. It's been a struggle lately, juggling an increasingly stressful full time job with the utter need to write. Most of my days and nights are spent piecemeal: tiny morsels of time spent on projects that scream for intense, in-depth immersion. I find myself desperate for any tidbits of distracting creativity: a line of a poem, a musical phrase, quiet solitude for contemplation and gazing at my toenails, searching for the right words to lay down on the page. Any writing accomplished is like blood-letting: laborious, scrutinized, depressing, a strangled glut of words choked from a moldy gourd. Recently, a pleasant, although obviously non-writer gentleman informed me that he didn't see the problem with writing a book. "You just come up with an outline and write it out, don't you?" I nodded, teeth clenched, head wobbling like a pumpkin on a corn stalk. If it were that easy, I suppose I would have a thousand books by now. Perhaps, a book should appear easily written, like a doctor who breezes in for a five minute visit with his or her patient, quickly diagnosing and treating a medical problem. No one sees the eight or more years of schooling and the four or more years of residency: the extended sleepless marathons of common colds and domestic abuse cases; the wretched consequences of mistakes; the soul-battering humiliation and genuine fear of not being an immediate expert. Everyone thinks they know what it is because they read it on the internet or their second cousin's nephew's girlfriend is a nurse and she said ...

Not to compare writng to medicine, but why not? It requires the skill of a surgeon, the language application of a linguist, the most passionate open-heart imaginable, and the full-body armor of a knight: not to mention the total exposure of your very soul to the whole world. To all my writer friends out there: may the blood of passion eclipse your doubts and reap your best harvest as you grow and grow and GROW.

First, Get Outside...

Photo of author in her kayak by Kevin Tomasello c. 2015

I need a distraction from working on my new novel--okay, not really, I need an excuse not to work on it. Actually, a little procrastination goes a long way. Too long. I have a whole list of writing projects I need to work on, so why do I hesitate? My mind craves silence...and nature. Ideas rush between the tortuous convulusions of my cerebrum, yet I balk at putting them to page. My much more prolific colleagues continue to create and publish every scribbled thought--or so it seems--while my words thunk to the page with all the elegance of a corpse.

The truth is, I have been pulled away from writing by the bodacious bounty of a rare and splendid summer. The hot sun has been tempered by the low humidity--almost impossible in this Susquahanna River valley, nicknamed "Sinus Valley" for good reason. Even without a breeze, the air has been warm and dry with a hint of the Atlantic sneaking in from the far-off coast. Our little dog Teddy raises his muzzle often, as if to sniff the salt air. We are several hundred miles from the coast, however, and even further from the wonderfully rocky Maine coast we love so much. Not the crowded Downeast known to most vacationers, but further up, to Acadia's Schoodic pennisula and beyond. My husband and I were married on a fishing boat 14 years ago, in the harbor. Sadly, our paradise has been discovered by developers and summer in Bar Harbor has been lost to a bulky luxury hotel that juts out into the water while masses of sightseers crowd the streets. For the first time last summer, it was a chore to buy a week's pass to Acadia National Park. People spilled from the crush of the parking lot into the park office like marshmallow Easter Peeps squished in their box. The beauty of Maine's craggy coastline, though, is that there is so much of it that one can find hidden gems in its lesser known crevices. There I go, off on a tangent again. Ah, the winding mind of a wanderer.

Anyway, I have been soaking up the glorious days of this solstice before they get away. Occasionally wracked by guilt for not writing every day, I have taken long weekends away from my day job to bicycle the rolling hills, paddle the river, amble through the local park with my spouse and my dog, pluck juicy tomatoes and alarming zucchini monsters from the garden, and generally goof off. I don't feel too bad, though (says my wretched, sniveling, shackled inner writer). Soon enough, the leaves will fall and the bite of winter will arrive. There will be plenty of days to document all this rumination. Hopefully, those pasty white words will lose some of their dead weight and dance upon the page like snowflakes. For now, let the sweet sun shine!

Thank the stars for the dark night, or I'd never get any writing done.