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A working professional and part-time writer, full-time Mom and modern day Alice in Wonderland...

Monday, July 9, 2018

Work Ethics & Truth Telling

"Blog City ~ Every Blogger's Paradise"
DAY 1665 July 9, 2018
Prompt: “Examine your words well, and you will find that even when you have no motive to be false, it is a very hard thing to say the exact truth, even about your own immediate feelings.” George Eliot
Why is telling the exact truth so difficult? Your thoughts…{/i}

Telling the exact truth takes a lot of courage, because truth can be painfully hard to hear for some. I have learned valuable lessons about family and loyalty through some of my own truth-telling, lessons that still leave marks...like wounds you thought healed that suddenly flare up and fester. I have always written without self-censorship and while the old adage may say, "the truth will set you free", it will also often isolate you and leave you exposed. That is the risk and one I have come to understand too well. These days however, if I feel pressed to blog or write about something to process it or just to better understand my own perceptions, I find myself taking a pause. I don't want to write purely from a place of anger anymore. I give myself a few days then I try to articulate my feelings, try to express myself as candidly as possible. In the past I have gone back and re-read a piece and thought that it sounded more angry than I might have intended it to. I don't ever want to totally white-wash the anger out, or censor the truth but I also don't want to lose myself completely in it either. I run the risk of being angry a lot, of turning my writing into a tool to lash out rather than what it should be, a tool to process my emotions and feelings. So...I take a step back, I take a breath...I "examine my words well" and make sure that what I am committing to electronic ink is the most honest version of myself that I can, the person who doesn't give in solely to the hurt and the anger, a person who reflects rather than simply reacts. One last word about truth...it is always 100% perspective - what you believe is your truth is personal and you should never have to apologize for how you feel or how you perceive someone or something.

"Blogging Circle of Friends "
DAY 2058: July 9, 2018
Prompt: Work Ethic. Write whatever you want about this subject. If you have a favorite quote share it.

I have been working for most of my adult life, starting pretty early on in my father's business. I was the kid that always wanted to go to work with him, taking on menial tasks...more of a mascot than any real help around the office. Over time though, that interest developed into a career which as times, can be more consuming than might be advisable. It is what I grew up around though, my father was never really not working...
There wasn't a family vacation where we didn't spend some time standing outside a phone booth in the blazing hot Florida sun, or after the invention of cell phones, following my Dad around like little ducks as he talked with the office with one of those big, white, early Motorolla's pressed to his ear. As a business owner, my father was always working, rarely inaccessible in those early years. It is only now, after decades of near constant work, he is taking more true breaks, he actually feels like he can step back and let others step in and handle things more. Still, the moment something heats up, or goes wrong...he's right back. He is hands-on, even at the age and level of success where he could be retiring, he rarely shows signs of slowing down. I'm not sure my father is the retiring type...he's worked his whole life, how does one turn that off? To me that is work ethic...to give what's needed and more to the job and when it is your own business, to be there for it when it needs you most. I'd like to think the man raised me the same way, to understand that kind of dedication to the work.

© Copyright 2018 MD Maurice (UN: maurice1054 at Writing.Com). All rights reserved.

Friday, July 6, 2018

Ella's Lion

"Blogging Circle of Friends "
DAY 2056 July 6, 2018
Use these words somehow in your writing- enchanted, twilight, fireflies, rose, carousel, lion, and tinman.

The old porch fan rattled and buzzed each time it completed it's wide arch rotation, an offending interruption to the otherwise soft summer evening soundtrack. Ella quickly padded across the porch in her bare feet and switched it off. She returned to her swing and curled her long fingers around her still steaming mug of rose tea. She watched the fireflies painting brief and brilliant patterns of light all across the wide open field. The haystacks stood like silent sentinels against the darkening twilight.

Ella sat back, feeling for just a moment, a bite of pain in her stomach that took her breathe away. It was fleeting spark but she knew it would be back. Soon Ella knew she would need to swallow more of the little white pills to keep the pain from radiating through her guts, stretching its cruel fingers through her joints and delicate organs. The pain was getting harder and harder to contain, certainly an unwelcome but not wholly unexpected side effect of the cancer. Ella tried not to think about the pain now. She focused on the sweet chirping of the peep frogs and the gentle rustle of the tall grasses as the night breeze picked up and raced across the fields. Ella leaned her head back and closed her eyes. She soon slipped into her memories...

A much younger Ella raced through the gates of the tri-county agriculture fair. As she ran, her long dark tresses flowed out behind her, the only feminine thing about the rail-thin girl in the dirty overalls and duck boots. She was immediately assaulted by the smell of cinnamon sweet fried dough and fresh spun cotton candy, her favorite treats. She barreled past the tempting vendors all the same, heading to the carousel. They always set it up dead center of the fair and there was always a line. She heard the carousel's rousing tune before she saw it, rising up like an mirage from the dust and grime of the fairgrounds.

Ella was enchanted by the carousel. It was an antique marvel of engineering and art. Instead of horses, the carousel was made up of wild animals imported directly from the plains of Africa. The animals were beautifully crafted, the mahogany creatures painted and polished to a high glossy sheen. The elephants had tusks that looked like real ivory and the giraffes gazed at you with deeply soulful eyes. The hippos were comically wide, their wide mouths open revealing fat pink tongues. Nothing could have been more exotic to a farm girl from the Midwest and she would ride it several times, every day the fair was running. Ella's favorite though was the African lion. There was only one of those, a big male with a russet colored mane and broad back and massive paws. He looked so alive, the incarnation of all the power and might one would expect from a king. She loved the lion and there was little that came close to the joy she felt slipping onto his smooth back and wrapping her fingers around the leather halter looped at the beast's neck.

Ella reached the spindly gate of the carousel, alarmed to see she was pretty far back from the front of the line. She watched the other children hand their tickets to the attendant and gleefully charge up over the sides and clamoring for their animal of choice. Several children began to bicker over the camel and Ella saw one little girl struggling to climb the lion's flank. Disappointed, she stepped aside when she reached the front of the line explaining to the stoic attendant that she would wait for the next ride. He looked down at her and shrugged with a tin man's indifference, and left to check that the riders were all properly seated before putting the carousel into motion with a palm punch to a large red button.

Ella rode the carousel that day a record sixteen times before her parents made her go home. It would be the last year the carousel came to the fair, having been replaced the very next fair by a shoddy operation with dully painted horses sporting wide eyes and gaping mouths that Ella thought looked macabre. These new horses bounced under the riders who reached for tiny gold rings and they swirled past. She never rode that carousel. Oddly, it held no magic for her.

The rising pain brought Ella to the the surface, trailing her fading memories like a gossamer wake. She opened her eyes and found her tea was cold and the night had fallen like an inky curtain. She slowly sat up, the pain now a hot cinder in her side. Ella pulled herself to her feet, gritting her teeth against the agony. It made her light-headed and her vision blurred. She rubbed at her eyes and her knuckles came away with a coating of hot tears. Then, off in the distance, she caught of glimpse of something through the veil of water in her eyes.

She limped down off the porch and into the yard, straining to get a better look at the thing that was impossibly perched on the edge of the farthest field. Ella's heart rallied even as her brain told her in no uncertain terms, that the thing was absolutely not that magnificent carousel from her youth. But, as Ella drew closer, she saw that somehow, indeed it was the very same one. Her ears began to pick out that familiar lilting tune and there, yes, right there as he'd always been, was the lion. Her lion.

Ella barely registered the pain now, it was as if it was fading, giving her space to breath again.

With an energy that surprised her, Ella rushed the last few yards to the gate. She swung it open and stood, looking at the beautiful beast with his flaming mane and soft eyes. Without a moment's hesitation, Ella swung herself up, onto his broad back. She pressed her cheek against his cool smoothness, closed her eyes and felt the carousel begin to slowly move.

"Blog City ~ Every Blogger's Paradise"
Day 1662 July 6, 2018
You've met three people on your way to do an errand. They're all talking about something they overheard but are positive you're the reason it's happening. Are they right or wrong? Weave us a tale about the three people and yourself and whatever is happen

Christina felt the frown forming despite her best efforts to keep it at bay. She knew the three women were talking about her. Not for the first time that day, Christina cursed the small town with its limited resources and its one and only, tiny pharmacy. It was hard to avoid people in a town this size, the very reason she had left for the big city with its legions of bustling strangers. There had been an absolute certainty she was going to run into someone she knew on the brief dash into town but here she was, annoyed to find it had happened after all. Despite her mother being a bit of a recluse, she had been well-known in town and the rumor mill was incredibly small but efficient here.

One of the women had clearly been appointed as emissary. She made her way toward Christina, rearranging her features into a mask of sympathy.

"We were all so sorry to hear about your Mother. She was such a nice lady. You look just like her!"

Christina bit back an acidic response and only nodded, allowing the woman to rub her bicep awkwardly for a few moments before she spun back to her troops. The pharmacist called her name and Christina rushed up and snatched the bag and dashed out of the store.

What could she have expected? Of course her mother's death would be fodder for the people she lived, or mostly, lived among. Though Ella has been private, most people had known about the cancer diagnosis and of her stubborn refusal of treatment. They had all known she preferred to live out her days in the farmhouse among the fallow fields her family once tended, despite the doctor's advice and Christina's agonized pleading.

Two nights ago, Christina had gotten the call she had long dreaded. Her mother had been found, inexplicably at the far edges of the family property, just lying in the field. She had passed away sometime in the night and by all accounts it had been a peaceful passing, even though given the late stage of her disease, she must have been suffering in considerable pain. The man who found her told Christina she had looked like she was sleeping, dreaming the most wonderful of dreams. Her plain face rendered beautiful in death by an oddly childish smile.

Monday, April 30, 2018

The Truth in Renovation - Circa 2012, Reflected on 2018

I first wrote this piece in 2012, and today as we listed the house for sale I take a moment to reread these thoughts and find the sentiments are that much more poignant today.  I realize that I am only more emotionally attached this home today, having spent more years here and made more memories.  I have loved watching my daughter playing in the backyard with her friends and reading a book in pool of afternoon sunshine.  I have loved the smell of coffee filling the kitchen on Sunday mornings while I made breakfast and listened to NPR, the dogs at my feet.  I've loved every peaceful hour lying back in a lawn chair watching the drama of our resident bird community play out high above my head in the boughs of our massive maple tree.  I have watched storms whip past the windows and felt the security of my sturdy old dame, with her plaster walls and seeping stone foundation. I don't know how long it will take to sell, I'm prepared at least, to have a few more months in which to wrap up our renovations and say our goodbyes. I am grateful that this life has given me the chance to see this house, not for the pain and fear it once housed, but for the life and love that has filled its rooms. 

The Truth in Renovation - Feb 2012
This past week we relocated the entire brood to do some much needed renovation work on the old house. We had made a difficult decision to spend our limited funds on home improvements rather than taking off to some sunny, semi-tropical destination on the theory that we would get far more out of our money that way. While my father's house wasn't on the beach in Fort Lauderdale, it was still more luxurious than our home and far more well-equipped. Jaden enjoyed being under the same roof as Grampa and took full advantage of his unlimited attention whenever possible. Fatih spent the days working on refinishing all wood floors on the first floor, repairing some plaster damage and repainting the stairwell and painting the great room. This past Tuesday I got my first real look at all his hard work. It was an amazing transformation.

My decision to keep the house after my first divorce was one born of need rather than want. I had needed a project, a mission to divert my attention from the fallout of an ugly failed relationship. I had always loved that old house but it came with a boatload of memories, most of them bad. Still, I moved in. I planned to bury those bad memories in new paint, throw out all the yard sale furniture and fill in the fist-sized holes myself. The process by which I re-invented my home was very challenging and healing. And while gutting rooms and knocking through walls was very cathartic, new paint and fancy new decor will only go so far to change your perception of a space. It was still a place that had seen to much pain, sheltered too much shame. When I met Fatih it was always my plan to sell and find a new space to build our lives together. Then we were blessed with the birth of our daughter and the decision to sell was put on hold while we adjusted to life with our precious newborn. We converted one of the spare bedrooms to nursery and told ourselves we would stay put until Jaden was walking. By the time our little girl was taking those first few steps, the recession had squashed the opportunity sell and upgrade. Suddenly the list of all those repairs and improvements seemed unavoidable...it was time to get cracking. At least we could improve our space and enjoy it until conditions again became favorable. So the plan was set, we would start with the floors and walls and go on from there.

I walked back into our home Tuesday night and I realized two things simultaneously...

First, I love this house. I love sweeping openness of the floorplan, made even more impressive with the shiny new wood floors with their depression-era pattern. I love the high ceilings,arch ways and wide rooms, made even brighter with the soft new paint. I love the character of this home and the integrity of its original construction.

Secondly, and this is the most important thing, I love that we have made a life here, the life I share with my husband and daughter. And while I know that eventually we will all move on to a quaint neighborhood in the country, the memories that I will associate with this old house belong to us now. It has been the pulse and heartbeat of our existence here that have truly managed to cleanse this space of those bad memories in a way that remodeling and renovation never could have. The spare room at the top of the stairs will always be my daughter's first room - the peaceful place I sat so many nights, rocking and dreaming of what the child I carried would be like when she finally arrived. The stairs will be the first ones she learned to climb. I will remember those floors because they will be the ones my husband coaxed ageless beauty from on his own hands and knees. That kitchen will be the one where I made the meals my daughter never ate and the place where all our parties seemed to begin and end. Those walls and rooms will be the ones that witnessed all the amazing human drama of our growing, loving family.

One day, when we do leave, I know I can stand in the center of that home, close my eyes and hear the echoes of my daughter's laughter. I know when we do move away, this home will be remembered as our family's first...and only that. I can not begin to describe how grateful I am for that truth.

Monday, March 19, 2018

Female Poets and the Mantas of Indonesia

"Blog City ~ Every Blogger's Paradise"
DAY 1553 Prompt-- March 19, 2018
Prompt: The Polish poet Adam Zagajewski said that in his country, “poetry killed communism.” Do you think poets can be the forerunners of social change, and if so, how are they managing to bring such revolutions about?

I have never been a poet, even my most lyrical prose would not qualify as poetry however some of my favorite literary works are, in fact, poems. There is this incredible power in words and nothing seeks to reveal that better than a well-versed poem or passionate piece of spoken word. I believe people read poetry with a higher level of attention, a type of reverence that gives poets a unique platform to influence public opinion, raise awareness and even bring about social change. This feels particularly true of female poets who use poetry not simply as form of artful expression but as a rebellion. In some places in the world where women do not have a voice, their words are a brave act of defiance. Throughout history and all over the world, female poets lend their voices and tell their stories and people listen.

They craft their poetry from war torn countries and their words provide the narrative for the haunting images of dirty, bloodied children of a brutal conflict.

An excerpt from Najat Abdul Samad's poem, "When I am Overcome by Weakness"
"I bandage it with the steadiness of a child’s steps in the snow of a refugee camp, a child wearing a small black shoe on one foot and a large blue sandal on the other, wandering off and singing to butterflies flying in the sunny skies, butterflies and skies seen only by his eyes."

Their words testify to the struggle of being female, of being a minority in a country that comes painfully slow to change.

Maya Angelou's "I Rise", is story about the pain of the past, the challenge to find one's place in a world that is often hostile and unforgiving. Her refrain, however, is one of hope and victory and easily lends itself to becoming an empowering mantra for all those who are opposed and oppressed in this world.

"Out of the huts of history's shame
I rise
Up from a past that's rooted in pain
I rise
I'm a black ocean, leaping and wide,
Welling and swelling I bear in the tide.
Leaving behind nights of terror and fear
I rise
Into a daybreak that's wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise."

Still I Rise by Maya Angelou

In my opinion, female poets are better than most at taking a moment in history and shining a stark, unforgiving light on it. I think Halsey's poem, "A Story Like Mine", serves as a brutal examination of the reality behind the #metoo movement. It is a testimony but also a call to action.

"What do you mean, this happened to me? I'm supposed to be safe now. I earned it. It's 2018, and I've realized that nobody is safe 'long as she is alive, and every friend that I know has a story like mine, and the world tells me we should take it as a compliment.
It's Olympians and a medical resident and not one f*cking word from the man who is president. It's about closed doors and secrets and legs and stilettos, from the Hollywood Hills to the projects and ghettos … Listen, and then yell at the top of your lungs. Be a voice for all those who have prisoner tongues."
An Excerpt from "A Story Like Mine" by Halsey

All great revolutions that spawn true social changes have many champions and I believe that brave and powerful female poets number among them.

"Blogging Circle of Friends "
DAY 1950: March 19, 2018
Prompt: It's Motivational Monday, write about some good news that motivates or inspires you in your life, your town, your state, your country, or go to Good News Network or some other website and share some good news that interest you.

Some days I am harder pressed to find good news in the daily fodder of this twenty-first century life. I'm pleased to learn there is a "Good News Network", a positive collective that exists to catalog the stories not often given airtime or ink. I am encouraged by the stories of efforts to clean garbage and debris from the Galapagos beaches and marine reserves and the company converting cigarette butts into useful, recycled materials. Even thought these stories might not get the international attention they deserve, it gives me hope to know they are out there, doing something to combat the abuses we inflict on our planet and its resources.

I think its important to find hope in the victories, even the ones that might seem to measure small on a global scale like the successful conversion of indigenous Indonesian's from manta hunters to manta rangers. The dedicated efforts by conservationists and marine scientists and the willingness of the people to listen has pulled a magnificent animal back from the brink of extinction. Indonesia has managed to learn what so many other countries fail to see, that a resource might actually be worth more when protected and conserved. Their manta industry has successfully converted from a dwindling, depleted consumption-based system to a wholly sustainable eco-tourist economy. In at least one corner of the world, people have come together to solve a problem and improve, not only their individual well-being but the conservation of a species and its place in the world's oceans. Recently Indonesia proudly declared itself the world's largest manta sanctuary, good news for the manta and good news for us.

Monday, March 5, 2018

For My Daughter, Age 8

My daughter celebrated her 8th birthday over two months ago and this one felt just a bit harder for me than the one before. At age 7, she still had seemed that shy, quiet child who wanted me to walk her to her classroom each morning and follow behind me like a shadow everywhere else. The transformation between age 7 and age 8 was something I had not fully been prepared for. It seems that overnight she has discovered the joyous fun in reading graphic novels, the scientific discoveries of slime and geodes and the finer points of picking just the right outfit and tinted lip balm. She is still shy with adults, but she is loud everywhere else. She sings and dances with abandon and often performs with a silly, wanton joy.  Yet, she becomes embarrassed to the point of tears if she hears me telling anyone, anything about her. It's as if she is our secret firefly, you can catch her sparking brightly but briefly, if you know where to look.

Age 8 has brought eye rolling and a new streak of defiance to our negotiations. She argues, I believe, just for the sport of it. She pans refusal for almost everything I suggest she try. She doesn't like what I pick for her to wear and hotly contests any adjustments I insist she make to outfits she assembles. She can be aggressively stubborn. At age 8, she has tapped into a new sense of drama. A recent visit to the doctor for her annual flu shot treated her father and I to an almost Oscar-worthy performance where we might have assumed she was about to have her arm amputated without anesthesia. Each injury, no matter how slight, now seems to be accompanied by copious tears and irrational claims that, "you don't care when I get hurt."

Despite the challenges, age 8 has given us the opportunity to see her reach out and seize opportunities to do things she really enjoys. She has found her voice, found new levels of confidence. Without much prodding, she will play piano now for friends and family. She is clearly proud of her burgeoning skills and I'm happy to see that music is still so much part of what she loves about her world. She is one of the few girls in her ninja warrior class, a fact that does not seem to make her self-conscious in anyway. I can see sparks of a competitive nature in her. She likes to be the last one to release her plank during warm up, likes to know her time is that much faster each run at the obstacle course. She makes it up the warped wall in one take, but still freezes at the top. She says its the drop that scares her. She describes the feeling of gravity acting on her limbs as an unwelcome and uncomfortable intrusion, something she feels she can not control. We watch her, perched on the edge of the wall, her small frame tense with the desire to jump, only to back herself down. I ache for her and for myself, not knowing how much to push her past her block.

My daughter has always managed to forge wonderful friendships. One of the best things about this age is discovering that she has continued to grow into a loving and loyal friend. She has never forgotten those special friends from preschool and she reserves a portion of each party invite list for those friends she may not see every day, but still counts as part of her little circle. Her delight at seeing their faces, at sharing experiences with them, warms my heart beyond measure. She astounds me with her kindness, her limitless expressions of love toward her besties at school. She adores her friends and her book bag bleeds a regular stream of crayola-stained testimonials that prove they adore her back. Age 8 brought the very first friend sleep over, a play date that picked up Friday after school with her very best friend and ran straight through the next mid-morning. They stayed up far too late and got up way to early but the house was filled with their playful giggles and running feet. After they had finally dropped off to sleep I crept into her room to check on them and found them, heads pressed together, faces soft and serene in sleep. Physically they are polar opposites and they looked  like a sweet composition in cinnamon and sugar. It made me think of my first sleepover with my bestie, whom I still treasure to this day and I felt happy for these two the special bond they have forged.

Age 8 has given me such bittersweet moments. I have been so proud of her, surprised by her sudden fierceness, delighted by her antics and frustrated to tears by some of her habits. I have discovered pools of her slime in the rugs, her hair and on the dogs. I have lost hours of my life collecting discarded clothes from her floor and rehanging them in her closet. I have caught a glimpse of her applying lip gloss in her room, her face a mask of concentration. I saw the little lady in her suddenly gaining on the child - and it wrecked me for hours. I am not ready for so much that I see coming but I am so excited to see her becoming her own beautiful all the same.

One day this past month, I had a rare day off with her. We went to the mall to do some shopping together. At some point, she surprisingly slipped her hand in mine and we walked through the mall hand in hand. I was very conscious of that moment, it felt crystalline and rare. I had to fight down the lump in my throat. I was filled with gratitude that at least at age 8, my daughter still wanted to hold my hand in public. Before that moment, I don't think I had been so sure. As I listened to her happy chatter, I felt blessed in the knowledge that at that moment, there wasn't anyone else she wanted to be with more than me.
At age 8, she is my fierce little firefly, my bright spark of light in my wide night sky.

Image Courtesy of Firefly Bookstore

Thursday, March 1, 2018

A Butterfly in Spring and Gillette's Ode to Holmes

Image courtesy of Pinterest

 "Blog City ~ Every Blogger's Paradise"
Day 1535 March 1, 2018
Prompt: "The butterfly counts not months but moments and has time enough." Rabindranath Tagore Write about butterflies and spring.

Yesterday afternoon brought sunshine and the trill of spring birds. Today, in my fickle part of the world, these balmy temps will give way to a Nor'easter bringing rain and snow. As New Englanders, we have all grown accustomed to a cautious optimism when it comes to the arrival of Spring. I found myself believing for a few short hours, that Winter had turned the corner. I half expected to see the fresh green points of daffodils breaking through in the yard and even checked for buds on my early blooming lilac. The latest news report sobered me quickly. The weather man somberly presenting a map in which my town sat squarely in the wide blue swath indicating 3-6 inches of snow. This has little to do with the Tagore's quote of course...but butterflies always bring Spring to mind and here, we are all very preoccupied with that particular season.

I think the sentiment behind Tagore's words are that the life of the butterfly might be brief but it is full. After all, how many creatures get to experience a transformation that allows them to life two lives to fruition, both terrestrial and aerial? A caterpillar toils about for the first of its life, grounded and plodding. Then, then brilliant design of its life cycle allows it to emerge, reborn with wings. The butterfly's world is suddenly all air currents and fragrant blooms. It is granted a new life, one that is fleeting but free. Last year my daughter and I watched a painted lady butterfly float slowly to the ground. My daughter gently picked it up, marveling that it has just died there in our yard, almost the moment it's body made contact with the earth again. I'm sure the butterfly lives every moment silhouetted against the sky, grateful for its beautiful and brief existence.

Image from Wikipedia

"Blogging Circle of Friends"
DAY 1932 March 1, 2018
On this day 1890 1st US edition of Sherlock Holmes (Study in Scarlet) was published. How do you think like Sherlock Holmes?

I would have to admit that I have much more in common with Carroll's Alice than Doyle's Sherlock Holmes. The fictional detective was crafted with an almost unnatural intelligence and intuition. He also used morphine and cocaine, to the extent that he has been repeated portrayed as an drug addict. The traits certainly make him an interesting, if unrelatable character for me.

Oddly enough, my state has a strange connection to Sherlock Holmes. William Gillette was an actor who realized considerable fame for playing Sherlock Holmes on the stage and in early silent films. In 1914, Gillette began construction on what would later become Gillette's Castle along the Connecticut River. It is an odd structure that I've always thought resembles a sand castle melting under an incoming tide. The grounds are impressive however with trails that meander through the woods and often break into clearings with amazing views of the river valley. It is a state park now and you can tour the castle and its trails almost year round. There are references to Sherlock Holmes all around the property, including the sign out front that bears a typical likeness to the pipe-smoking investigator.
Image from Wikipedia

Friday, February 23, 2018

Those Angry Days of Living with HS

There is a fury inside of me today that I am trying to quell with seemingly copious amounts of Motrin and coffee.  Today it feels like my pain is more than just topical in nature.  There is hot anger running through me and this anger feels like a new, unwelcomed component of dealing with my HS.  I’m beyond irritable. I am unapologetically short-tempered and intolerant. 

Since my diagnosis in my early thirties, I have lived by the rules of prevention and pain management. I have gathered what remedies and suggestions I could from the forums and tried not to be frustrated by the lack of real medical support. My dermatologist called it an “orphan disease”, abandoned largely by the medical profession. Until you are dealing with an agonizing flare up, the true nature of that term may allude you. What it really means is that there is nothing out there to treat you, no cream or ointment, not oral medication to drive the painful boils back down once they erupt. There is nothing you can take medically to control the HS, to keep it locked in remission. There is no cure. You just have to deal…deal with the pain and with the knowledge that it can take you down at any time, triggered by stress, by weight gain or just by the whims of a stalking disease that resides in your genes.  

Most days I avoid this tide of anger and frustration by counting my blessings.  I believe that I am one of the lucky ones.  My HS outbreaks so far have been limited to my upper body and with the exception of the one in my neck, and my resulting scars are largely invisible to others. This is not the case with many people. HS can be severely disfiguring.  The boils that erupt, those cysts that become infected and eventually rupture cause bad scarring.  I have seen images of young men and women with puckered tracks of scarlet scar tissue running down both sides of their groin.  It is this most intimate invasion of the disease that leads to isolation and depression for so many. 

Most days, I remember those images and the stories of the people in the forums, and I feel ashamed of the anger. Today though, I’m feeling furious with my body, with its inexplicable ability to manufacture these horrible, ugly nodules that burn and throb and swell to an impossible size.  Today I want to scream. Instead, I stock up on the large size band aids and take the antibiotics that will only speed me closer to the inevitable rupture of my skin and the formation of another scar.  The antibiotics don’t make me feel better, in fact, the doxycycline tears up my stomach but there is still that small chance that it will stop the inflammation before it progresses to that awful end stage.  There is a chance, according to my epically hopeful primary care doctor, that it may attack the inflammation and help the cysts drain and alleviate before rupture – saving me from more scarring and the general unpleasantness that comes with those ruptures.  If she can hope, I suppose I can try to be hopeful as well. Hopeful and less angry...

With all of the truths I have come to understand about HS, I am most thankful for the diagnosis. Being able to give a name to the affliction I suffered from for so long in the dark, was honestly the best thing.  With diagnosis came the opportunity to explore the research, the remedies and treatments that were available to me. Being diagnosed suddenly gave me the important reasons for this very unreasonable disease. If you think you or someone you know might be suffering from HS, this is the best, most informative and straight forward site I have come across:

If you suspect you may be suffering from HS, see a doctor, start with getting diagnosed. Find what works for you, because it’s different for everyone. Give yourself those angry, furious days…but always go back to hope.