Tag Archives: seizure disorder

#atozchallenge C is for Collaboration


by Lillian Csernica on April 3, 2019

Collaboration is not for the faint of heart. The creative process is a strange and mysterious thing that does not lend itself to easy explanation. To harness your creative process to another person’s method of producing a story requires patience, communication, and a solid commitment to see it through to completion.

If you want to audition somebody for the role of collaborator, take a long road trip with that person. Being stuck in a car together for hours on end will give you a golden opportunity to discuss the project itself, along with finding out whether or not you can tolerate the other person’s quirks. Writers are quirky people.

I have had the good fortune to collaborate on separate projects with two very talented writers.

KEVIN ANDREW MURPHY

Kevin and I have known each other for a very long time, close to thirty years. We have written three stories together and sold every one.

Special Interests

Death for Death

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The Restless Armadillo

Kevin Andrew Murphy writes for many worlds, most notably George R.R. Martin’s Wild Cards series. His story “Find the Lady” just received the Darrell Award for Best Midsouth Novella at MidSouthCon and he has other recent Wild Cards stories in Low Chicago, the expanded reissue of One-Eyed Jacks, and the upcoming (but out in Britain) Knaves Over Queens. He’s also just written “The Golden Cup” for Savage World’s Pantheon super hero game setting.
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PATRICIA H. MACEWEN

Pat and I have known each other since the night I drank the vodka tonic meant for her while hanging out with mutual friends at BayCon. Dragon’s Kiss is Pat’s novel. I was less a collaborator and more of a technical adviser. The hero of the book is based on my son Michael, who is wheelchair-bound with cerebral palsy and seizure disorder. We need more stories of people with special needs who fight the good fight, who continue to strive despite or because of their physical and cognitive limitations.

Pat MacEwen is an anthropologist. She sometimes works on bones from archaeological sites and does independent research on genocide, having worked on war crimes investigations for the International Criminal Tribunal, and done CSI work for a decade. Oddly enough, she was once a marine biologist at the Institute of Marine & Coastal Studies at USC. She has two novels out – Rough Magic, a forensic/urban fantasy, and Dragon’s Kiss, a YA fantasy about a crippled boy who finds he can talk to dragons but people? Not so much. She writes mystery, horror, science fiction, and fantasy. Her work has appeared in a Year’s Best SF anthology. It has also been a finalist for the Sturgeon Award, and made the Tiptree Honors List. Her hobbies include exploring cathedrals, alien-building via nonhuman reproductive biology, and trawling through history books for the juicy bits.

 

Tolstoy and Dostoevsky plan a collaboration - 'War and Punishment'... it'll make us a bundle.
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Filed under #atozchallenge, Awards, Blog challenges, Conventions, editing, fantasy, Fiction, historical fiction, Horror, Lillian Csernica, publication, research, sword and sorcery, Writing

Another Hospital Stay, Part 4: We’re Home!


by Lillian Csernica on September 4, 2015

Yes, it’s true.  We were discharged on Monday.  Michael is looking good.  He needs to gain back the weight he lost in the hospital, and he tires easily, but he’s in good spirits and that big grin is back.  We’ve had to replace his ketogenic diet with a formula that’s easier on his kidneys.  The nephrologist would like us to wait six months for full recovery before putting Michael back on the ketogenic diet.  He’s now on one additional anti-seizure medication which seems to be working.  He’s had a few very brief seizures, but nothing beyond the frequency and intensity he was experiencing before he went to the hospital.

I’m not good for much this week.  I’ve been reading and sleeping and binge-watching the first season of “Grimm.”  I’ve seen the occasional random episode of the show, but I’d never gotten the whole story.

Chris hired a new nurse.  We need her, because we won’t be sending Michael back to school for at least two weeks.  It’s always a little strange having somebody new in the house.  On her first day, which was also our first day at home,  the upstairs shower decided to just keep running no matter how I turned the faucets, even with pliers.  I thought I was going to have to start bailing out the bath tub through the window, but Chris managed to get a plumber to the house within ten minutes of me calling about the potential disaster.

Never a dull moment.  I think I might have that engraved on my headstone.

School is in, the neighbors are behaving themselves, and the cats are very happy to see me.  Every night there’s a competition to see who gets to sit on my lap as I lounge on the couch watching Netflix or Amazon or Hulu.  Now that I’m back, all is right in the feline universe.

I have two ten-page stories due by the end of October, then NaNoWriMo starts.  I worked on two or three new short stories while I was in the hospital.  I took a few big blank notebooks with me.  If I wasn’t writing in my personal journal, I was making notes or writing some piece of fiction.  I’ll have to devote a post to what happened as the hospital staff got to know me and word spread about me being a “real writer.”  Even in this digital age, some people still have what borders on superstitious awe toward those of us who can make the words keep coming.

It’s good to be home.

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Filed under Baclofen pump, charity, Depression, doctors, Family, frustration, hospital, mother, perspective, Special needs, worry, Writing

Changing Our Equation


by Lillian Csernica on March 27, 2015

We’ve hired a new R.N. for Michael.  One of the three we currently employ will be moving on.  This is a sad occasion, because the R.N.s who do home care become a part of the ecosystem inside the family.  That can be a mixed blessing thanks to that familiar stumbling block, boundary issues.  The nurse who is departing has been a great help to Michael.  She has a particular talent for communicating with him and making him feel like he’s really being heard.  I know he will miss her.  This kind of thing is very hard on someone with Michael’s limitations, because he has so little control over his environment.

When we interviewed the applicants, we did so while sitting in Michael’s room with him so he could be part of our conversation.  He had a rather wary expression each time we introduced an applicant to him.  Once we’d talked to each of the two applicants, I asked Michael if he liked one nurse more than the other.  Our usual question and answer process produced the very firm answer that he does not want his current nurse to leave.  Neither do we, but she’s a fairly young nurse with an excellent mind and a wonderful career ahead of her.  We wish her all the best.

So.  Next month a new person will enter into the daily chaos that makes up my family’s home life.  The nurse will meet Michael’s one to one school aide.  She’ll get to see what goes on during the Homework Wars with John.  Eventually she’ll meet my mother, who will subject her to a good-natured interrogation.  The two regular nurses will teach the new nurse all the little details of Michael’s care that are hard to explain without the hands-on part.  The new nurse will find out how we prefer to have her communicate with the various doctors and the medical supply companies, and we’ll adjust to the way she keeps her nursing notes.  There’s a standard method, of course, but everybody has their own style.

New input is good for Michael.  During her interview, the new nurse and I discovered quite a bit of common ground.  She’s written and published a nonfiction book.  She’s traveled quite a bit, and she’s fond of reading romances.  We’ve already established something of a rapport.   What makes me really happy is this particular nurse’s background in the Neonatal Intensive Care Unit.  She understands what Michael’s life was like from the moment he entered the world.  All the machines, all the tests, all the hopes and fears.  She “gets” our family in a way other nurses might not.  Most importantly, she understands what Michael’s life has been like all these years.  She comes to him with a degree of sympathy and respect that can only result from living through the daily ordeals of the NICU.

femaleimagination.wordpress.com

In mathematics, when you change one element of an equation, you end up with a different result on the other side of the equals sign.  Our home environment is an equation made up of several elements, some harmonious and others more contradictory.  It will be interesting to see how the presence of the new nurse alters the equation, and what the new outcome will be.

nursejournal.org

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Filed under Family, Special needs, Writing

The Mother of Invention


by Lillian Csernica on March 12. 2013

It’s high time I dragged myself into the 21st Century by joining the blogosphere.  I’m a writer.  Fantasy, dark fantasy, historical romance, horror, nonfiction.  I have one novel out, SHIP OF DREAMS, under my romance pen name of Elaine LeClaire.  You can find my short fiction at Tales of Old, Tales to Terrify, and soon in Midnight Movie Creature Feature Vol. 2.  I’m very fortunate to have a career that lets me work at home because my two sons are both what’s now referred to as “special needs” children.

They’re not so much children anymore.  Michael is sixteen.  He had to be delivered at only twenty-three weeks, making him a micro-preemie.  A pulmonary hemorrhage and a grade four plus brain bleed left him with cerebral palsy and later seizure disorder.  He is medically fragile, an invalid who is either in his wheelchair or his hospital bed.  He doesn’t let any of that stop him.  He’s an award-winning artist, a great bowler, and he loves classic rock.  Michael has a great smile and a wicked sense of humor.

John is fourteen.  He went full term, but he did refuse to breathe.  His brief bout of hypoxia is what we believe caused his speech delay.  Speech therapy led to an evaluation by a neurologist which resulted in a diagnosis of autism.  John is low on the spectrum, with a talent for drawing that began when he started watching “Blue’s Clues” at age two.  He has taught “Drawing with John” classes at his elementary school both in the classroom and over the school’s closed-circuit television broadcasts.  John loves digital animation and studies the Special Features options on DVDs which give him a behind-the-scenes view of how the artists and programmers work their magic.

It’s not easy finding time to write when each day I have phone calls to make, medical supplies to order, school projects to supervise, doctor appointments, prescription refills to keep track of, and the other random demands that crop up all the time.  I tend to stay close to home for the boys’ sakes, so writing lets me run away from home inside my own head.  I look forward to sharing the ups and downs of this life with you.

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Filed under fantasy, Fiction, Special needs, Writing