May is National Brain Cancer Awareness Month.

Yet It’s More Than That!

         May is National Brain Cancer Awareness Month. I’m not particularly fond of May because that is the month when I have to wrestle the most with a deep sadness that will never go away.

I lost my son, Alex, on May 24, 2013, after his nine-year struggle with a cancerous monster called an oligoastrocytoma. Alex was a fire apparatus engineer for CAL FIRE and the cancer was deemed job-related. I could go on and on about the treatments, the fears, the unknowns, and the devastating effects of his cancer, but that’s not what I am writing about today. No. With Mother’s Day on the horizon, I am writing about being his mom, about loving and caring for him for the thirty-nine years he shared his incredible life here on Earth with us, and in particular, the last few years when motherhood included a new facet, that of caretaker.

            When Alex died, I can remember my father saying, “You must be relieved.” What? I was horrified. Relieved? No. I was heartbroken, truly. I am quite sure, before May 24, 2013, I had no real understanding of what it meant to be heartbroken, but I know now. It’s okay. I can live with a broken heart because I know my sadness equates to the love I had, and still have, for my son, Alex.

            So. What about love? What about caring? I feel that as Alex’s mother, and a caretaker, that I was lucky. “Lucky?” one might ask. Yes, I was lucky because I had the privilege of spending incredible moments with my son, especially during the final years, months, days, and hours of his life. Let me share a few.

I remember sitting at the kitchen table talking about his cancer. “What have you learned through all this, Alex?” I asked.

“Patience,” he replied without skipping a beat. “And you?”

“I have no control,” I told him just as quickly. “I have control over nothing but myself.”

Alex and I had many conversations and laughed heartily about people he had worked with, about crazy relatives, about nature, and about politics. We talked about life in general, and we talked about death. “It’s going to happen to me, too,” he said one day when we received word that a friend of his also had died of brain cancer. I won’t forget that moment because I could only nod in agreement. I could not have uttered a word because impending grief was a bird on my shoulder.

Caretaking was never ending: waffles and blueberries for breakfast, half a sandwich for lunch, med allotments, showers (“No, I’m not looking!”), combing, shaving, toenail cutting, and keeping the calendar straight, for we had countless medical appointments and just as many visitors, including Hospice.

 As the illness progressed, I learned to dress him, manage the wheelchair, help him in and out of bed and onto the toilet, wipe his butt, help him brush and gargle, adjust his television, tuck him in bed. “Mom, can you get my tiger blanket,” he asked over and over when dementia set it.

            I’m a writer, so it was not unusual for Alex to ask me to read to him. I read my second novel from cover to cover. “Read more,” he would say. “Just a little more.” I love re-envisioning the hours we spent, just the two of us, he lying on the couch under his blankets (the tiger one on top), with me having commandeered his wheelchair, reading, listening, loving, caring, and never, and I mean this sincerely, feeling burdened by it all.

            And in the end, when Alex was bedridden, in diapers, catheterized, confused, and unable to swallow, I listened for hours to his ramblings, most totally incoherent, a few making sense. “My dog is waiting for me,” he said two days before the end, followed by  “Somebody dumped out my out-of- county bag, the F%^#r.”

            Taking care of Alex was the greatest gift I could have been given. It cemented our love and it taught many lessons about how we human beings live our lives and face death. I am relieved only that Alex is no longer suffering. I would give anything to hear his voice again asking, “Mom, could you please get me my tiger blanket?”

Note: It is also important to share here that my husband, Alex’s step-dad, was an incredible caretaker as well. I’m not sure I could have managed without him.

My memoir – Tumor Me, The Story Of My Firefighter

www.jdechesere-boyle.com

             

WHAT FOLLOWS YELLOW

The color yellow

A writer cannot wait for inspiration. It may or may not come. What a writer must do is write . . . every day. Sometimes, when I’m not motivated, I start with one word selected from “out of the blue”. Below is a blog that began with one word – yellow. I developed this piece from that single word with no idea, when I began writing, where YELLOW would take me. This day, it took me to a good place, and in a week that has been a bit sad and confusing to me, I am satisfied.

Yellow has never been my favorite color. It definitely is not in my color wheel. I don’t believe I possess a single item of clothing that is yellow. My mother did buy me a bright, yellow, turtleneck sweater one time when I was twenty-something. I hated it. I wore it a few times, though, only when I knew she’d be around, but the rest of the time it was stuffed in the bottom corner of the sweater drawer. When I determined that enough time had gone by I tossed the old sweater (that incidentally looked brand new) in the Goodwill donation bag. It was a relief to see it go, but strangely I have never forgotten it. I guess I have my mother’s eye for color and my rock solid love for her to thank for that.

My mother adored bright colors, and that always seemed a bit odd to me. In my mind, Mother maintained a somewhat timid, undemonstrative personality that did not seem to go along with her love for vivid colors. I mean, really! One would think a reserved woman like my mom would select beiges and browns, black even, so she would not be noticed. Nope! Not my mom. She loved any shade of red, hot pink, turquoise, chartreuse, rich violet, and yes, yellow. And she wore them well. She had dark brown hair, deep brown eyes, and lily white skin that turned a light bronze in the summer beneath a hot, yellow (yes!), Kentucky sun.

My mother had a beautiful smile when she had occasion to show it. (And that was not too often, especially when my dad was around and in one of his “moods”, but that’s another story.) That aside, Mom’s lips were always tinted bright red, the color refreshed from time to time as need be. Though she didn’t wear much other makeup her painted lips and that radiant smile captured many a person at first glance.

My mother died in January of 2010. She was two months short of turning ninety-six. Her life was not always easy, but I believe she was satisfied, and, yes, prepared to go. (She held within an unwavering, deep faith.) I still think of my mother at some point every day and that’s a good thing. It warms my heart.

Today, the word yellow led me to her, and to memories as sweet as bubble gum-pink, cotton candy. It is a truth that my mother was, without fail, the first person to point out nature’s colors: the face of a delicate, deep purple pansy, a golden eye at its center; a batch of yellow daffodils swaying in a breeze; the vibrant red of a Kentucky Cardinal flitting about in the sparkling snow; the cobalt feathers of chattering Blue Jays; the brilliant orange, yellow, and black wings of a Monarch butterfly; or the pastel shades of a rainbow stretching across a grey and cloudy sky.

And aside from nature's colors, I’ll forever remember the gift of that yellow sweater.

“I bought you a present, honey,” my mother had said on the eve of my birthday so many years ago. A look of love had enlivened her face. “It’s a brand, new sweater, especially for you. Just look at that stunning yellow. Isn’t it something? I just love it.”

I recall looking down at my comfortable, black sweatshirt and trusty, navy jeans before managing a reply. “Thanks, Ma. Yeah, it’s a stunner all right. Yes, mam, it sure is.”

I wore it the next day.

While this is not THE yellow sweater, the color is exact!

This is my mom, who had just inched into her nineties, wearing a vivid red. She is here with her grandson, my son, Alex.




www.jdechesere-boyle.com

 

Wally’s Wacky World

        This is a not so upbeat piece of fiction . . . fabricated from what Wally would declare is spot-on.

Something was wrong. Wally couldn’t explain, not to anyone, though he wanted to so badly. Yet how could he? He wasn’t able to articulate to himself, either verbally or on the blank pages of his journal why he felt as he did . . . as if the world as he knew it, as he always had known it, was going to come to an abrupt end. It would be over. Gone. He believed it in his gut. No one in his right mind would understand a warning based on Wally’s premonition (“Another flippin’ nut case.”), folks would scoff at his fear (“What the hell is he worried about? That ain’t gonna happen.”), or he would be dubbed a wacky hippie who had sucked down too much smoke from his friend, Mary Jane (“Hey, dude, got any weed?”).

So yes, something definitely was wrong. This notion of his, that his world shortly would be turned upside down, or inside out, or split wide open from stem to stern, kept him up at night. He dreamed about it. It festered in his mind giving him headaches, gut aches, heartaches, or phantom pains in appendages he had never had. If only he could find some way to tell anybody, any one person, about his ominous suspicion that everything . . . everything . . . in its entirety, soon would be finished in midstride, in the blink of an eye. Not one person would believe. (“Yep, old Wally has gone off the deep end.” “Bonkers” “Old guy’s cheese has slid off his cracker.”). Folks would talk behind his back if they knew what he suspected. Wouldn’t they? Would they? Would they be right?

Wally harbored that thought. I’m not well. Maybe I have some terrible disease and I don’t know it. Maybe it’s the fact that nobody calls. People avoid me. Maybe I read too much. I’m a square peg in a round hole. I know it. I’m an oddball. But something is really wrong. I feel it inside, from my head to my toes; it’s whirling around like a specter. It won’t settle, won’t rest. Shit.

Something was wrong, but the truth was that Wally couldn’t do a damned thing about it. And though he was hopeless, though he had found it impossible to express what intuition had been dictating, he suspected he wasn’t alone. Others were as afraid as he was, and that was not simply a hunch. It was true. The signs were out there. Everywhere he went he was met with rudeness, intolerance, impatience, boorishness, and hate. Hate? Yes, even hate. And why? It was because of fear. It was because of dread. It was because of a pathetic feeling of helplessness. Any semblance of goodness or decency had turned in on itself. That is what was wrong.

Wally had sorted through it. He understood. Though he had possessed little of monetary value in his long life, he did own outright, intangible assets. He was erudite, he had gained an inkling of wisdom (even if he did say so himself), and his sense of perception was sharp. Yet, he pondered. What good does that shit do? Time and circumstances had left him with no choice. All he could do was hold what had come to be in his hands, his mind, and his heart and wait.

The Blue Apron . . . Where Can It Take The Writer?

Lately my blogs have veered dramatically from being a creative place to being a space to vent, to editorialize, or to fret, and while that has been useful to clarify my thinking, today I decided to go back to what I love most: creative writing - creating from nothing. I’ve decided to do this for the next few blogs simply for practice and basically to see what happens. Today I began with “the blue apron”. (And really, who wears an apron anymore?) I followed the words though and below one can read the result of that effort. 

The blue apron had been hanging on the same ten-penny nail for eight years. Eight years. Nora had hung it up there herself, turned toward her husband, Ned, and said, “Well, done for another day.”

She had taken three steps forward and had collapsed right beside Daisy, the beloved, old, half-collie dog that had been roaming Nora’s house for thirteen years, ever since the young, mongrel bitch slinked up on the back porch, matted, filthy, and laden with pups that were more than ready to see the light of day. It had been love at first sight for Nora who had yearned for a dog all her life; the feeling for Daisy was instantly mutual although she might have reconsidered if she had known what was coming to her.

Nora unceremoniously had dragged Daisy, at that point unnamed, to a wide, metal drinking pail, given her a moment to lap up some much-needed water, and then turned on her, dousing the unsuspecting mutt with the rest of the water and sudsing her from nose to tail with a bar of handmade lye soap. The dog detested and adored every minute of the attention. When the washing was done, Nora informed her new pooch that she’d be called Daisy and Daisy responded with a gigantic wiggle that thoroughly soaked Nora as well. Daisy showed her enthusiasm by bounding around the backyard grass in an ecstatic frenzy. A day later eight puppies were suckling contentedly while Daisy gazed up at Nora with happy, glassy eyes. The puppies, when ready, were parceled out to friends and neighbors, but Daisy stayed on with Nora and Ned until the end.

The moment Nora crumpled to the floor that evening after hanging up her well-used, blue apron, both Daisy and Ned were upon her, Ned patting her face and hands breathlessly and Daisy pawing nervously at Nora’s legs before licking the old woman from head to toe.

“Nora, Nora,” Ned repeated over and over, his voice growing raspy and faint as fear took over. And, when at last Daisy lay down beside her best friend, she whined, a tiny, forlorn sound that seemed to catch in her throat for it continued as though it might possibly remain forever.

The efforts of the two beings, Daisy and Ned, who loved Nora more than life itself were futile. Nora’s breathing came to a halt. Her last movement found her grasping the fur on Daisy’s chest, while at the same time, her other hand softly squeezed Ned’s hand until it fell free.

Daisy mourned Nora for four days before deciding she’d had enough. The old dog died on the kitchen floor in the exact spot where Nora had fallen. When Ned found Daisy, cool and not breathing in the grey of an early morning, he grabbed Nora’s blue apron and placed it over the dog before wrapping her in a soft blanket. Ned buried sweet Daisy in the far corner of the backyard at noon when the sun was at its highest. Nora would have approved.

A Swift Kick To 2016

            (Or Looking To A New Year)

So, here’s what’s up. 2016 hasn’t been the jolliest year for me. I’d line it right up next to 2013, the year my son, Alex, died from brain cancer. It would be easy to fall into a deep depression and wonder, “Why bother?” I’m not that kind of person though. I WANT to “bother”, and by that I mean make an effort to move forward. So, I’ve been making “dates”, going places, seeing a few friends, planning to see family, and trying to put 2016 in perspective.

A few days ago I had wine and hors d’oeuvres at a local wine bar with two of my women friends. They have been fighting as hard as I have to keep their heads above the fray that has hold of our country, to maintain their senses of humor, and to preserve their integrity and level-headedness, especially when confronted with someone behaving badly. We all know right from wrong. We’re educated, liberal, and, as educators, have spent our entire lives devoted to careers that have contributed positively to the lives of others. (At least we believe that.) That being said, we feel there’s a chance that we, and a few others, may be thrown under the proverbial train and we’re worried. For many years we have watched freedom, independence, and human rights for women, minorities, and the LBGTQ community expand. We’ve seen folks begin to take better care of our environment. Health care and society’s support systems have improved. Now however, friends of my generation fear all that’s about to implode.

Not everyone agrees, however.

I met last night with a small group of former students, a generation X group, a bit older than the younger millennials who have grabbed the media’s attention and are making their voices heard these days. It was actually inspiring to be with this 40-something bunch and realize that they’ve made it. They are doing well financially, are talented, creative, smart, and are diehard wine lovers, and what could be wrong with that?

The gathering was bittersweet, of course, because absent from those around the table was Alex, who was a classmate of those there. It stung a bit. Nonetheless, I enjoyed being in the company of this “much younger than I am” set. We conversed openly and easily. I realized, however, from listening to them, that in some ways, we think differently. While we agreed pretty much across the board politically, I honed in on their one, particular, collective outlook: They aren’t worried.

“This is only temporary,” they said. “What really can happen in four years?” “Our democracy has checks and balances, doesn’t it?” “Besides, “he” is only one person.”

Theirs was a laissez-faire approach that actually surprised me given the uncertainty of our times. I know these individuals read, they’ve traveled the globe, they are thinkers, doers, and yes, they too contribute to society. At the same time, though, they appeared ready to let life run its course, to wait and see what happens . . . at least for now. These adults, my former “kids”, want politely to debate the issues with people of all ages, hear the “other” side, and be “reasonable”. And that’s certainly not bad, just different from quite a few baby boomers of my generation who are more than a bit nervous these days and quite likely, mad as hell, not that we don’t want to have a healthy exchange of ideas as well.

 Age, obviously, experience perhaps, even expectations set each of our generations apart; they contribute to our individualism and clearly to our outlooks. While I cannot adopt the stance of my generation X students, I have to appreciate their willingness to look forward with hope and with the belief that we will get through these trying times.

“Our country’s gotten through things like this before,” they said.

Not without fallout,” I wanted to add, but did not.

Nevertheless, I must say I found these grown-up, former students admirable, worthy citizens and good, solid people. I felt honored to be a part of their gathering and it was great to catch up after many years.

I suppose, at the end of the day, no matter how one feels about where we are headed, either individually or collectively, or whether one frets about the future or not, things will turn out. They simply just do, but let’s hope, in 2017, it’s for the best.