DADavenport's Posts - CrimeSpace2024-03-29T06:28:54ZDADavenporthttp://crimespace.ning.com/profile/DADavenporthttp://storage.ning.com/topology/rest/1.0/file/get/60985474?profile=RESIZE_48X48&width=48&height=48&crop=1%3A1http://crimespace.ning.com/profiles/blog/feed?user=DADavenport&xn_auth=noThe Butterfly Children Effect and Metag:crimespace.ning.com,2007-10-31:537324:BlogPost:872192007-10-31T02:27:07.000ZDADavenporthttp://crimespace.ning.com/profile/DADavenport
Last night was one of the most emotional nights of my life.<br></br><br></br>First, I had to give a speech. And I do not like public speaking. It's like finding yourself in one of those weird dreams where you are suddenly starkers in a public place with nowhere to run and hide. Not comfortable with it in the least.<br></br><br></br><br></br>Second, the speech was about my Aunt, who suffered and passed away from a horrifying and, until lately, rarely seen disease called Epidermolysis Bullosa.<br></br> <br></br><br></br>Third,…
Last night was one of the most emotional nights of my life.<br/><br/>First, I had to give a speech. And I do not like public speaking. It's like finding yourself in one of those weird dreams where you are suddenly starkers in a public place with nowhere to run and hide. Not comfortable with it in the least.<br/><br/><br/>Second, the speech was about my Aunt, who suffered and passed away from a horrifying and, until lately, rarely seen disease called Epidermolysis Bullosa.<br/> <br/><br/>Third, I had to give it in front of children and one adult suffering from EB and dozens of people who have lost children and loved ones to EB. These children are known as The Butterfly Children, because their skin is as fragile as a butterfiy's wings, and just as easily destroyed.<br/><br/><br/>Since Aunt Pat died I have not put myself in the path of EB much. I receive the newsletter from DebRA, one of their national organizations. I watched as my cousin has written a book about day to day living with the disorder. I have seen the fabulous documentary, The Boy Who's Skin Fell Off about a young man named Johnny Kennedy. But the pain of losing my Aunt, my Godmother and my very close friend was too much to handle at times. So I have avoided EB like the plague it is for a very long time. Until Sunday Night.<br/><br/><br/>For those of you who don't know what EB is, and that's probably 99% of the people on this planet, EB is a rare skin disease. The connecting tissues that anchor the epidermis (the top three layers of skin that we can see) to the dermis(the underlying layer) are missing. In the recessive dystrophic kind, my Aunt's form, it is so severe that the skin rubs off at the slightest touch... a mother's embrace, a baby's first attempts at crawling, sitting in a car for long trips. Huge blisters and blood blisters form as well, they pop, they get infected, they can cause death. Babies like Patsy come into the world skinned and in agony, and that agony is ongoing on a daily basis for the rest of their lives. Their fingers, toes, ears fuse together and by their teens, if Butterfly Children live that long, they have no fingers, only hands like mittens to function with. And that's just the surface. Inside their bodies, they can form blisters in the mouth, the esophagus, their intestines, making it difficult to eat unless food is soft or pureed, sometime forcing them to go on feeding tubes. It is a horrific disease, unknowingly and tragically caused by two people in love, making babies and blissfully unaware that both carry the recessive genes in their DNA.<br/><br/>My cousin Gena has worked tirelessly for decades to bring EB to the worlds attention. So have the parents and relatives of children born with it. And recently the governments around the world have been establishing EB Awareness Weeks in perpetuity. This, however, was not enough for my stubborn cousin. She began the EB Awareness Rally Relay, the Walk A Mile In My Shoes Rally, this year and a small contingent of people left Canada to begin a US tour. They have hit New York, Pennsylvania, St. Louis and last night was Denver's turn.<br/><br/>My family went as a group. My sister, who I drafted to speak with me, my brother and sister-in-law who mounted their Harley and joined a group of Harley riders to escort the EB Ralliers from the airport to Children's hospital, my mother (Patsy's sister-in-law) and my son, Chris.<br/><br/>I have never entered a room before and been met with such an emotional overload. Every where I looked were Butterfly children, racing their wheeelchairs, wrapped in untold yards of gauze. Pictures of those that have perished at EB's hands. Slide shows of Denver's EB community on all 4 walls. I was overwhelmed. Every face I looked into had elements of my beloved Aunt and it rocked me to my core. I knew that each one there affected by EB stood a 70+% chance of not being there next year and I felt my heart breaking.<br/><br/>We gave our speech. I tried to write it with humor, sadness without being maudlin, and hope and it was a success. But the most amazing thing was the people who came up after it was over, parents of these children, who wanted to know what it was like to have been blessed with 65 years of having my Aunt with us. Lillian "Patsy" Barbrey is the pinnacle that they all strive for. A fairly full life span with Recessive Dystrophic EB; most Butterfly Children die before their 20's. And the way she got there was a miracle wrought by my Grandmother. <br/><br/>A strong Tennesee mountain woman, Nana gave birth to this tiny, wounded child and was told by the country doctor to let her die. Instead, Nana nursed her for years, insisted that she live a normal life and backing down anyone who told her different, or treated her child as less that normal. As a result, Patsy grew up and did almost anything any other woman can. She learned to drive, she finished High School. She fell in love and married. She had 3 healthy children. No other EB woman had ever given birth until Aunt Pat. She faced the inevitable breakdown of her body with courage and died at 65.<br/><br/>I watched last night as my son wept on numerous occasions. He knew my Aunt well, and loved her unreservedly. But until last night, he never fully accepted the fact that he could also be a recessive carrier of the EB gene. Now he plans on being tested. If his genes are RDEB free, than he is home free. If he carries the gene, then his future wife will have to know and be tested herself. If she is free, wonderful! If not they will have some very heavy decisions to make as future parents.<br/><br/>So, like the butterfly across the globe that flaps it's wings and starts a hurricane on the other side of the planet, a small group of EB victims and the ones left behind have started flapping and creating their own storm. <br/>I think their tornado of hope will only blow in good things. Strides are being made in Italy and other countries allowed to develope stem cell treatment and there is hope on the very distant horizon. <br/><br/>And I have faced a demon or two of my own, batted them down and have joined the fight. And that's a very liberating feeling. I feel free as bird right now...or, should I say...a Butterfly.<br/>Seeking Sourcestag:crimespace.ning.com,2007-04-10:537324:BlogPost:216752007-04-10T13:47:18.000ZDADavenporthttp://crimespace.ning.com/profile/DADavenport
I have a WIP. Not unusual here at Crimespace, with everyone either in the middle of one, or planning one out. It's just unusual for me, since it's my first. And this first novel-writing stuff is for the crazies...luckily I lean towards insanity to start with, so it's a pathway I'd venture towards anyway.<br />
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But I tend to be a bit shy. I have a lingering fear of appearing an idiot, so I tend to keep my mouth shut rather than put myself out there. Until you get to know me. Or put me at the…
I have a WIP. Not unusual here at Crimespace, with everyone either in the middle of one, or planning one out. It's just unusual for me, since it's my first. And this first novel-writing stuff is for the crazies...luckily I lean towards insanity to start with, so it's a pathway I'd venture towards anyway. <br />
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But I tend to be a bit shy. I have a lingering fear of appearing an idiot, so I tend to keep my mouth shut rather than put myself out there. Until you get to know me. Or put me at the anonymous keyboard. <br />
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I became instantly aware of my lack of knowledge of police procedures as I started to put this story down. And I've come to the point where I need the help. But the idea of approaching a station, like a complete maroon, was intimidating. Then I remembered my sister's boyfriend. Ex-cop, now arson investigator, former partner to 2 women cops. Ideal. Yesterday I gathered up my courage and approached him. And BAM! He was thrilled to become my first source ever. He has read my short stories and has already become a fan of sorts, so we plan to have a good home cooked meal, then the 2 of us will ditch the spouses and talk shop. Easy-Peasy...this time around. <br />
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So how do I start to find these sources without having the family advantage? What do you guys do? Do you just march in, introduce yourselves as writers, and say, "Hey, I'm writing a book, may I pick your brain?" Are there public relation liasons that you contact first or do you just approach a desk sargent or and hospital receptionist? What sort of reception do you get? Does it depend on what type of group you approach? Are there times you may just volunteer some help and keep ears and eyes open and not annouce your intention, especially if the group could be less receptive to a writer among them? Is there an average amount of time you spend with a group or individual or do you just try and sense their tolerance points? <br />
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There is only so much research you can do on the Net before you need that personal experience. Stuck in the mountains, having to work at jobs while writing limits, time for me. So trips to Denver to seek this help will be time-consuming. But not a problem. You do it for the WIP. So, I guess, here I am, seeking sources on seeking sources, from the Barflys. Thanks for the help you guys, drinks are on me! <br />
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Thanks For the Invites!tag:crimespace.ning.com,2007-03-24:537324:BlogPost:119882007-03-24T21:57:35.000ZDADavenporthttp://crimespace.ning.com/profile/DADavenport
I am currently in computer hell right now.<br />
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It appears I need to get my MSN browser fully supported, not a term I relish, from my aged and gravity plagued point of view, but one that is necessary, I'm afraid. Then I can sit back and bask in the sunshine of all these friendships that everyone is kindly offering.<br />
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So, hope you don't think I'm rude. I like you, I really, really like you. And I want to grab my basketball and join you on the court, but there are things that it won't allow me to…
I am currently in computer hell right now. <br />
<br />
It appears I need to get my MSN browser fully supported, not a term I relish, from my aged and gravity plagued point of view, but one that is necessary, I'm afraid. Then I can sit back and bask in the sunshine of all these friendships that everyone is kindly offering. <br />
<br />
So, hope you don't think I'm rude. I like you, I really, really like you. And I want to grab my basketball and join you on the court, but there are things that it won't allow me to do that the moment. In the meantime, I am enjoying everything vicariously. And I'm having a ball with the forums and the blogs. <br />
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Even if these weren't bringing me back, the Macallans at the bar would do the trick. Cheapest drinks in town. And the best company. <br />
Ancient Art Form or Here To Stay?tag:crimespace.ning.com,2007-03-15:537324:BlogPost:58772007-03-15T04:17:23.000ZDADavenporthttp://crimespace.ning.com/profile/DADavenport
I'm talking about the Short Story, Barflys. I have two fingers of Macallans at my side as I ponder this quandry (It's been bothering the hell out of me for sometime) and I thought Crimespace would be an excellent place to pose this question.<br />
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I find, if I leave this realm of Murder and Mayhem, that the Short Story holds little respect in other forms of literature. People seem to treat it like the red-headed step-child of fiction. This upsets me. Most of the stories I remember with passion and…
I'm talking about the Short Story, Barflys. I have two fingers of Macallans at my side as I ponder this quandry (It's been bothering the hell out of me for sometime) and I thought Crimespace would be an excellent place to pose this question. <br />
<br />
I find, if I leave this realm of Murder and Mayhem, that the Short Story holds little respect in other forms of literature. People seem to treat it like the red-headed step-child of fiction. This upsets me. Most of the stories I remember with passion and amazement from my 20's and before, are short stories written by the greatest names in literature. And most of them scared the crap out of me, too! <br />
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Name any great writer from the 1930's on back and everyone of them practiced, and many excelled, at writing a Short. It was rarely either/or, they were practiced in tandem. Since WWII, though, it's been snubbed and ridiculed by many as if you are lacking as an author without a blockbusting novel under your belt. And look at the extremes some authors are willing to go through (i.e. Patterson) to stay on the top! <br />
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Now, I wonder why the main place for it's survival seems to be our little niche in literature. Short Stories seem to be made for Crime writing and all it's sub-genre. Is it because the subject matter being portrayed needs a harder, less verbose edge and the basic design of a Short is perfect for those of us writing it? We have to cut to the chase, get rid of the frills, because our creations demand it? <br />
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At any rate, Thank God it's still appreciated by Crime fans. I love the format with a passion and I would hate to see it lost for good. <br />
Re: Ken Bruen Appreciation Daytag:crimespace.ning.com,2007-03-12:537324:BlogPost:43752007-03-12T12:20:55.000ZDADavenporthttp://crimespace.ning.com/profile/DADavenport
Ken Bruen writes like a cast-off angel, with hard-earned clarity, honest brutality and a depth of compassion that is astonishing. His voice is unmatched in Noir Fiction-in ALL fiction- and I was so haunted by The Magdelene Martyrs that I could not sleep the night I finished it. His refusal to speak anything but truth, no matter how confrontational, is intensely liberating for his readers; his defiance of corrupt clergy is heroic - he is as essential for this Recovering Catholic as water and…
Ken Bruen writes like a cast-off angel, with hard-earned clarity, honest brutality and a depth of compassion that is astonishing. His voice is unmatched in Noir Fiction-in ALL fiction- and I was so haunted by The Magdelene Martyrs that I could not sleep the night I finished it. His refusal to speak anything but truth, no matter how confrontational, is intensely liberating for his readers; his defiance of corrupt clergy is heroic - he is as essential for this Recovering Catholic as water and air. <br />
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I have not had the honor of meeting Ken in person yet, but we have spoken numerous times on his forum. His kindness, acceptance and amazing sense of humor only deepened my admiration for him. <br />
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Congratulations on your day, Ken. I will make it my own personal Holy Day of Obligation, if you don't mind.Ezines VS Print Magazines...Any Preference?tag:crimespace.ning.com,2007-03-12:537324:BlogPost:43342007-03-12T04:42:06.000ZDADavenporthttp://crimespace.ning.com/profile/DADavenport
I ask this of just about all the writers I meet and I was wondering what the people here will say?<br />
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Do you prefer one over the other?<br />
Why?<br />
Which format brings the most recognition and the most feedback?<br />
Does the more common "non-paying" status affect your decision on who to submit to?<br />
Does the networking possbilities of ezines add weight to your decision?<br />
Do readers feel there is a difference in status between the 2 formats?<br />
Any gripes about either styles of publication?<br />
<br />
These are…
I ask this of just about all the writers I meet and I was wondering what the people here will say? <br />
<br />
Do you prefer one over the other? <br />
Why? <br />
Which format brings the most recognition and the most feedback? <br />
Does the more common "non-paying" status affect your decision on who to submit to? <br />
Does the networking possbilities of ezines add weight to your decision? <br />
Do readers feel there is a difference in status between the 2 formats? <br />
Any gripes about either styles of publication? <br />
<br />
These are all questions that alot of emerging writers want to ask writers who have already been out there a bit. Who have garnered much more experience in the trenches. It's a tough decision, finding the right publisher for your short stories! <br />
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Hope you don't mind the brain-picking!