Tuesday, September 3, 2019

On What's Up With Holly

I guess this is another long-time coming one. I have been avoiding answering questions about it, choosing to focus on Owen and his breakthroughs instead.

On August 9th, I made the following post on Facebook: "Who takes care of the caretaker? Who watches out for the person who is always watching out for others? Who comforts the one who tries to comfort others? Who helps the helper? Who comes alongside the leader who is growing weary of being made to lead?" Those who know me well know I am all of these things, so I was immediately bombarded with "What's wrong?" and "What happened?" messages. I've ignored most of them, as my replies have leaned towards biting and sarcastic, and for that, I'm sorry.

This genetic condition and its "friends"  are very isolating. I'm too worn out from the daily battles to do much in the community besides the weekly quilting ministry on Saturday mornings. I sew for charity - for kids in foster homes, women in safe houses and kids with terminal illnesses.  Even then, after the three hours of it, I have to sleep at least 2 to recover. Outside of visits to the gym for physical therapy, numerous draining specialist appointments, and the few errands I can run, I am home. I work from home, guiding teenagers through their education through Bridgeway. On the side, I'm mentoring young adults who used to be my students back when I taught in public schools. I am a caretaker for my husband through all that his PKU has thrown at him. On the side, I'm volunteering for Dysautonomia Support Network, welcoming in new members and helping those who are struggling with the same conditions I have as well as others. I'm too worn out to do much else after giving my all to so many. There is also this...

Over the past eleven years, my home has virtually brought me all over the world and across time and space. From England to Sweden, California to Texas, Ohio to Massachusetts and more. It started when Owen built me a new PC during the 2008 Olympics. Within a few days, I was being introduced to a dozen of his online friends. This was much different than the message boards I belonged to. This was a massive online game full of roleplaying as well as game content.

That night, my first story began, and the months of isolation started to fade. In the nearly five years I was in Star Wars Galaxies, my characters made friends with dozens of others and stories detailed and long enough to fill a book were created. Some of those players became real friends, like Leaf in Sweden, Josh in Mass, and my "brother" Alex. Some remained casual contacts and, after the original version of the game was killed off 3 years later, we started over in Star Trek Online. There, more friendships grew, like with Kris aka Wookiee who I love to go visit out in Ohio.  While the stories in SWG were great, I was still learning how to roleplay well and it took a while to gain a good reputation for my stories. In Star Trek Online, I ended up in a fleet of SWG refugees... before long, I was voted to be their leader. I became a mother hen, ear to bend, source of advice, and Storymaster for distractions from life. Since then, some of the best stories ever were created. And, along the way, I made new friends. Caleb, Crio, Fletcher, and Wayne/Rock joined my online family.

I was no longer isolated and alone because of this genetic nightmare. I had something to look forward to every day. It kept my brain engaged and distracted from the pain that never. ever. stops. For five years, our little fleet lived on their station "just north of nowhere" and thrived. Personal stories grew in ways I could never have imagined. Adventures and moral quandaries were in abundance. It was epic!

There were some struggles. First Fletcher couldn't be there as much. Then Kris was really struggling with really bad depression, and we worked around it. Then Crio's job had him working 50-60 hours and Caleb moved so he had super long drives, and we maximized when they could be on. Josh only roleplayed with me, and he had a lot of struggles too. We did the best we could, and the stories he and I created were some of the most beautiful ones. Rock and I had a special connection and every single one of his characters (8 of them!)were securely wrapped around the stories of 5 of mine. Even when his schedule made it so he had to be there less, we still found ways to keep it alive. They all mean the world to me.

Then it all stopped 3 and a half months ago. Rock had been acting a bit "off" for 2 months prior in those moments when he could be in-game. At the end of May, he vanished. No texts, no replies to email, nothing. After 6 weeks, I mailed a letter to his house addressed to him or "whomever else was reading it." I knew from searching area obituaries and GoFundMe type pages that he wasn't dead. Someone read every text I sent. It was all met with silence. Whoever is reading it (and it isn't Rock) they either feel I'm not worthy due to being an "online friend" despite expressing worry and reminiscing about time spent as a group etc... or he did something they are embarrassed to reveal, and I've been hesitant to search about.  Whatever it is, I have been consumed with worry to the point of finding it hard to sleep some nights. I was begging God to keep him safe and bring him back to us or at least let us know what was going on. The others are depressed over him missing and are unsure of what to do. They aren't showing up much. I designed a story which didn't have his characters in it, which was difficult, but it's only going to hold us for so long. I don't know what to do, and it is upsetting.

I went to an emulator of Star Wars Galaxies because Alex and Josh were there. Both had stopped showing in Trek for roleplay stories. In SWG, we were hanging out and running some stuff together, and Alex and I had even started a new story, but then that stopped too.

 I give, serve, help, and care with everything I've got! My source of distraction, interaction with others, the moments where I received as much as I gave, and what kept me going when this life is so incredibly hard feels like it is fading away after 11 years. It might not be, maybe it is just a large lull, I don't know. What I do know is that it has had a big impact on me. I've lashed out with bitter comments to some, been sarcastic to others and am trying to figure out how to equalize again... That is "what's up with Holly."

*Disclaimer for those who will say "Oh you can sew more or write more!" I can get about 60-90 min of sewing in at home before my shoulder/back/insert-random-joint flares so badly that I have to stop. For writing... the government is making it impossible to do what I want there. I want to push these novels more, expand more, write across more platforms as so many have asked me too, but if any of it takes off and I make a few dollars over the max allowed, I'll lose half my income and medical care. There are too many ups and downs... too much instability in income. I had to turn down a proper publisher because to take the contract (something unstable) I'd have to give up my stable position at Bridgeway.  The disabled are forced to remain in governmental poverty. Not being able to do more where I've been thriving has also lead to bitterness.

Friday, August 23, 2019

On a Breakthrough and PKU

As many of you know, our household is a complicated one. I have Ehlers-Danlos Syndrome with Dysautonomia and a whole host of comorbidities. My husband was born with a different genetic illness, Phynelketouria or PKU and has some of its comorbidities as well. Between the two, we are frequent visitors to area hospitals for various specialist appointments and therapies.

We also were making two separate meals for every meal of the day. I need high protein, at least 60 grams a day. My husband could have just 16...yes, 16. Basically, he had to be a soy-free, bean-free vegan since birth or risk brain damage. Starches, some fruits, and some vegetables and mushrooms were what he survived on. The rest came from a foul-smelling and tasting (and expensive!) metabolic formula with the amino acids his body could absorb and the one he could not, phenylalanine, removed. Low-phe foods could be purchased but were incredibly costly (12 dollars for a box of pasta!) We made a lot of it from scratch instead using various recipe books. But, even with the Diet for Life program keeping him on low-phe/low-protein intake, his phenylalanine levels were high - usually up around 11 and it was doing damage. Those levels led him to develop dopamine responsive dystonia (basically pre-Parkinsons,) memory issues, develop severe osteoporosis, be chronically underweight, suffer from depression, and more. Recently, though, everything changed!

See, there's this little pharmaceutical company called Biomarin, and Biomarin does what Big Pharm will not... it focuses on the rare disorders, specifically metabolic disorders. Owen has been on their first PKU drug Kuvan since it came out. At first, he responded beautifully to it... but eventually it lost its effectiveness on him. This is mostly because he has an incredibly rare mutation of PKU and not the common "Classic" PKU. We were crushed when his levels started spiking again. The nurse assigned to him... yes, every Biomarin metabolic patient has a nurse assigned to them through the company... kept saying to hang on. That's because Biomarin wasn't done with just Kuvan. No, they had a breakthrough coming right behind it, and it was BIG.

In September 2018 the drug, codenamed PegPal, was FDA approved. It short, it is a coated, genetically modified, bacteria which eats phenylalanine - the amino acid he cannot process and which builds up in his brain and causes damage.  It is delivered through injections which are titrated up to x amount daily.  In February, Owen started it and in June the most amazing thing happened... He ate a hamburger... and steak... and chicken... and a corndog... and for the first time ever we had a normal meal where both of us ate the exact same thing. His phe levels? ONE! That is "normal human" levels!

The change has been amazing. With the lower levels, he is starting to come out of his shell. People who know him well are saying he's more talkative and engaging. He's started hanging out with friends instead of staying home and isolating. He's getting back into his hobbies as well, all because his brain isn't constantly under attack anymore. He is starting to put on weight too, which is a huge relief for his entire medical team. That battle has been a fierce one, with him being catabolic for most of the past 20 years. He's also enjoying trying out different foods.

Imagine what it must be like for him right now, having such a limited diet and suddenly being allowed to eat everything available. He says he feels like he's in another country every time something new is presented. Together, we've been finding out what his likes and dislikes are. All beef is in... anything cheesy like ricotta or mac n' cheese is out. Chicken depends on how it is made. Fish seems to be okay for now. He's loving being able to have junk food like corndogs. (I hope he quickly grows out of that phase.) And all of this because a little pharmaceutical company focused on the rare and made a BIG medical breakthrough.

That's another thing, this kind of modification of bacteria has so many other possibilities! Maybe it could clear up the plaque in a dementia patient, or eat the amino acid an MSUD patient cannot process. There are so many disorders which can be treated with this kind of protocol. It is going to be incredible!

We are on a wild ride right now, and I am so grateful for this major breakthrough!
#PKU #Palyziq #Biomarin #RareDisorder #MyHusbandCanEatNormally #BiomarinRocks

Friday, May 24, 2019

On Community - a DSN Story

Whew! OWS Cycon was quite the whirlwind after so many months of planning. However, it was a success, and I am very ready to get back to my normal blogging.
That being said, I have been waiting anxiously to get this one out...

In January of this year, I was asked to start volunteering with the Dysautonomia Support Network. After training, I became an admin on their biggest Facebook page, "Divas Dudes and Zebras." It quickly became my responsibility to accept and welcome new members. Around that time, DSN was planning for their annual Neuro-Connect Summit. I was invited to attend but was hesitant. First, there was the cost. Then there was the "I don't know anyone here yet and it scares the crap out of me" excuse. However, Cathy, my team lead there, wouldn't take no for an answer. She made sure I knew I was welcome and had a room covered. I just had to pay for the Summit itself. I thank God she persisted because...

Well, because I have NEVER in my life experienced anything so absolutely amazing, unifying, terrifying, and wonderful as that weekend.

As we got closer to the Summit, some members had shown interest in meeting me. I was also eager to meet Cathy and the few volunteers I had been getting to know. I arrived and was almost instantly greeted by one volunteer and then another. Once I deposited my stuff in the room I was sharing with two others, and figured out where I was supposed to be, the fun began. I started putting faces with names, learned more about DSN and the volunteer network, and was given quite a few hugs. There were some high tension moments where I was quite insecure, as some personalities make me want to retreat deep within myself. However, I watched as a couple of volunteers who were feeling unwell were doted on and taken care of, and you could feel the compassion and understanding in the room. As we were eating and then meeting about DSN, I looked around and was in awe that I was sitting in a room with people who were just like me.

That was amplified a hundredfold the next day, and I was incredibly unprepared for it. It started well, with my roommates and I getting along and having good conversations. They are totally awesome (and are adaptive dancers... EPIC!) I then helped put together the swag bags and get a few other things ready for the noon start. There was a lot of fun conversations as well as ones about our conditions which came across so naturally and casually. It was mind-blowing! Everyone knew and understood what everyone else was talking about! Come twelve, I went to make my way into the large conference room we were all gathering in, and my mind was blown. I'm a people watcher more than anything else and watched so many encounters between fellow dysautonomia, Ehlers-Danlos, gastroparesis, and Chiari patients. I was still pretty much clinging to Crystal, a volunteer I had been very eager to meet, but soon got to know so many others!

It was overwhelming. I was sitting there, listening to a speaker about physical therapy, and another about our swallowing issues, and others about so many topics which affect us... all of us... every single person in that room. I actually started tearing up over it. The room was freezing, so I used that as an excuse to step out and recompose. When another one of us became quite ill, you could feel it throughout the entire hotel. Every person in this community was worried. Every single one cared. I managed to make it through half of the presentations before needing to rest. My SI joint and I have been at odds for weeks now and sitting for too long was getting to be too much. I wanted to make sure I could go to our Patient Choice Awards and enjoy the night.

What an event that was! From our MC Josh Pray making us laugh while wearing his big heart on his sleeve, to the presentation of awards, acceptance speeches, the absolutely breathtaking adaptive dance to "Elastic Heart," the collective concern as another one of us became really ill and more, it was amazing. I found myself getting emotional once more, mostly because I wanted so very badly to know everyone better and have that close connection I was witnessing over and over.  Again, I wandered my way out to where I could stand against a wall and give my hip a break while still watching and listening and recomposing.

Ya... that didn't work so well. It was coming to the end of the awards show, and I knew something special was planned. I also knew many were hurting over the death of one of the volunteers and her picture was going to be in the final song. Let me tell you, there is no amount of emotional bracing which can prepare for a moment when a couple hundred people JUST LIKE YOU are standing, arm in arm, and swaying to Rachel Platten's "Stand By You."

I was standing with them but also apart from them. Most of my table had left and the rest were with the others in a long line of swaying and singing DSN volunteers. That's when one of the sweetest people I have ever met in my entire life, and who I loved every moment I got to spend with, reached over from her wheelchair and gently took my hand as I stood there crying from the overwhelming scene in front of me. Community...
#DysautonomiaSupportNetwork, #DSN, #NeuroConnectSummit, #EDSwarrior, #DysDiva, #DazzleTogether

Wednesday, May 15, 2019

On World Building and OWS CyCon - Author Interview

As part of OWS CyCon, I've been given the chance to interview a fellow indie author. It was an exciting time! Here is the outcome of it. I hope you enjoy learning about her world.

Find out More About the World of After the Green Withered by Science Fiction Writer Kristin Ward During OWS CyCon 2019

Welcome to another fantastic stop in our World-building Showcase blog hop! On this stop, we’re highlighting a story where the world changes or ends as we know it, but you can find a full list of authors and topics on the OWS Cycon website. Let’s dive in!
Welcome Kristin Ward!

  • Before we dive into the nitty-gritty, what is After the Green Withered about?

They tell me the country looked different back then.

They talk of open borders and flowing rivers.

They say the world was green.

But drought swept across the globe and the United States of the past disappeared under a burning sky.

Enora Byrnes lives in the aftermath, a barren world where water has become the global currency. In a life dominated by duty to family and community, Enora is offered a role within an entity that controls everything from water credits to borders. But it becomes clear that not all is as it seems. From the wasted confines of her small town to the bowels of a hidden city, Enora will uncover buried secrets that hide an unthinkable reality.

As truth reveals the brutal face of what she has become, she must ask herself: how far will she go to retain her humanity?

*            Does language play any role in your world? Does everyone speak the same language, or is there variety? Did you invent any new slang or terminology during your world-building process?

My book takes place in the United States of the future. Aside from story-related terminology, the language of the book reflects our present dialogue.

*            What kinds of climates do your characters experience? Do they see a lot of change or is it always the same? Has your world always had this kind of climate, or has it changed over time?

My book is a dystopian fiction based in a world ravaged by drought where water, the most valuable resource on the planet, is the global currency. Following a prologue which provides an essential backstory for the world I created, readers are introduced to a young woman, Enora, who is on the cusp of graduating high school and entering adulthood – this transition is tainted with frustration and worry over where she will end up as options are limited. Everything in her society is rigidly controlled – from water credits to borders – by an entity (the Drought Mitigation Corporation or DMC) who took control of water resources early on in the crisis and now have absolute control of every aspect of her community. When she enters a role within this entity, Enora discovers startling secrets that make her question who she is and what she stands for.

*        Is there any kind of faith system in your world? Did you draw inspiration from any real cultures, living or dead?

I was inspired to write After the Green Withered and the sequel, Burden of Truth, while completing research for a graduate course I wrote in environmental education. My course included concepts regarding earth’s history and, within this, I learned a great deal about the impact humans have had on the planet. As I studied and composed the course, an idea began to germinate.

What if there was a global drought due to the impact humans have had on the planet?  What if water became the global currency?

That seedling idea sat with me for a year or so as I finished my course writing and began to teach a few graduate courses. Eventually, I began to write the story but it took a whopping five years to get it from draft to publish! The final push actually came about after I read an article about Cape Town’s water crisis. At the time of the article, it was predicted that Cape Town’s water supply would run dry in April of 2018, not tens of years in the future. Reading this, I knew the story I wanted to tell was incredibly relevant so I buckled down and finished the first book.

*        What do people in your world do for fun? Are there sports, games, music, or other activities they do in their free time?

The world of my main character is rigidly controlled. It is a world of scarcity and deprivation. People in this society don’t have much opportunity for frivolity which is why this element isn’t present in my books.

*       What kinds of transportation and other interesting technology do your characters have access to? Are they ahead, behind, or a mix of different kinds of tech compared to where we are now?

The vehicles in my book are electric or solar-powered. This is due to the environmental catastrophes that impacted the world of my main character, changing the US from a country of 50 states to 18 states based on river basins. These events were the result of climate change that was exacerbated by the increase in the burning of fossil fuels.

*       Without giving away too much, what can you tell us about your world-ending event and how it led to the world of your story? Was it a distant event or does it happen as part of your tale?

Numerous readers have told me that the book is a truly frightening vision because they could see it coming to fruition in real life. It is a wake-up call. An important idea is that the choices we make, environmentally, have consequences. We may not see them in our lifetime, but what we do can and will affect the future. In the end, if the people in Enora’s world had made different choices long before she was born, then her life and the events that shape the story, would have been a much different tale to tell.

*            When you build a world, what is your process like? Do you do a lot of research upfront, wing it completely, or something in between?

I conduct an enormous amount of research before and during the writing process. It is important for the story to have elements of realism. This helps to ground the reader in the events of the book because the fictional world reflects the one the reader experiences every day.

*     How central is the setting of your story to the story itself? Is it more of an interesting backdrop, or is it integral to the events of the story?

The setting is an integral part of the story. It is our world after years of unregulated fossil fuel use and indifference to the effects of climate change. This world is one that has been altered so much by man that is had become unrecognizable.

*    When helping the reader get to know the world you built, what techniques do you use? Do you tend to be upfront about things, or keep the reader in the dark and feed them only bits at a time?

I wrote a very detailed prologue that is essential to the story. Before delving into the society of my main character, the reader must fully understand the world that she inherited. This shapes her perception of the controlling power and is a foundational part of the storytelling.

*    How much of a role does realism and hard scientific fact play in your world-building? Do you strive for 100% accuracy, or do you leave room for the fantastical and unexplainable in your world?

Realism is very important to the story but not to the degree that I strive for 100% accuracy. The research I conducted over the span of both books laid the foundation for the realistic aspects of the world itself and many elements within it. I have worked to explain various ideas in both books because they are interconnected with the world itself.

*   Do you have any specialized training or background from your “real life” that has informed your world-building?

The idea for my debut novel derived from a graduate course I wrote in environmental education. I was conducting research as I crafted the course components and the premise of this story was born from that experience.

* How do you keep all of the details of your world and characters straight? Do you have a system for deciding on different factors and keeping it all organized, or does it live more in your head?

I should probably have a structure in place to keep track of the details in my work, but I rely on my memory. Let’s hope I don’t start experiencing early memory loss!

*    Did you experience any difficulties while building your world? Any facts that refused to cooperate or inconsistencies you needed to address while editing?

I am in the unique position of having the premise for my book develop from research I was already conducting. From this point, I compiled a list of ideas I wanted to further explore and potentially add to the story. Being a total nerd, I enjoy the process of digging into science to better understand the concepts I am writing about in both books.
Where can people find you on the web?

 Please visit my OWS CyCon Author Booth at:

 For more stops on our End of the World World-building Showcase, visit the tour page on the OWS CyCon website. You can also find more great Sci Fi authors and books on our main Sci Fi event page. 

 #OWSCyCon, #Sci-Fi, #SciFi, #ScienceFiction, #world-building, #worldbuilding

Sunday, April 28, 2019

On My Top 5 Favorite Science Fiction Books

This year, I am participating in OWS CyCon, a completely online and free book convention. I've been having a lot of fun designing my digital "booth," participating in blog-hops, setting up for cover wars, and interacting with the other authors. Many of them are indie-publishing like me!

One of the questions which I've been frequently asked over the years is: "What are your favorite books?" I have far too many to ever be able to answer without a long hesitation as my brain goes through the list, and I stumble through picking five at random. So, I thought I'd narrow it down to "What are Holly's top 5 favorite Science-Fiction books?" However, even that needed a "twist" to make it work... My indoctrination into the wide world of Sci-Fi came in the form of three Hammermill paper boxes, full of books ranging from War of the Worlds to dozens of Star Trek and Star Wars books. A family friend learned of my blossoming interest and had handed me his entire collection! Nearly thirty years later, I still own most of them and all have had some kind of influence. However, here's the closest thing I'll get to a Top 5

Number 5 This is a book no longer in print, but it was my introduction to "Sci-fi other than Star Trek and Star Wars" and has stood the test of time for me.  "100 Great Science Fiction Stort Stories" is one I've kept hold of from those original boxes handed to me. I've honestly lost track of how many times I've read it!

Number 4 I fought over this one, as there really are three which qualified, based on how much I enjoyed reading them and how it ended up affecting me as a writer. However, I'm going with the middle book of an unofficial trilogy. Many know of Lois Lowry's book "The Giver," but did you know it had two sequels? "Gathering Blue" is my number four, as I can clearly see its influences in some of my writing. The third in that series was called "The Messenger" for anyone interested in the rest of the story. She ties in characters from both books, making it quite clear it is a trilogy after all!

Number 3 Though it wasn't on the top five until recently, George Orwell's 1984 has secured its place. After hearing numerous mentions of it over the past few years, I re-read it - not having picked it up for around twenty years. Oh, the difference time and maturity makes on the mind!

Number 2: And now for the twist! My number two choice would be... almost all of the original expanded universe Star Wars books starting with "Splinter of the Minds Eye" and up to "Showdown at Centerpoint" when you line the books up chronologically from when they happened in the universe. Geeky, I know. I'm not sorry, though.

Number 1: I'm a Trekkie and proud of it! Not only am I a Trekkie, but I'm absolutely fascinated by a minor character named Saavik... to the point where I've based one of my characters in Star Trek Online off of her- making Saavik T'kayeda's mentor. It's no surprise then that "The Pandora Principle" by Carolyn Clowes is my number one favorite book. She took the few little glimpses we had of Saavik and weaved and entire history out of the mystery. It is fabulous!

*OWS CyCon officially runs May 17-19 with the CyCon website and Facebook events acting as the hub for all of our events. Sign up for our newsletter or RSVP to the event to make sure you don’t miss out on any of the bookish goodness we have to offer. Plus, you can read more about our participating Sci Fi authors and their Top 5 favorites in Sci-Fi before CyCon starts. Visit the blog hop page any time leading up to CyCon for the latest posts and your chance to enter our MEGA giveaway (open May 10).

Thursday, April 11, 2019

On How Ehlers-Danlos Has Affected Me

     It has been nearly six years since I last focused a blog post on having Ehlers-Danlos Syndrome. So much has happened since then! So, I thought it was time to reflect on the day-to-day with this genetic disorder. How has EDS affected me?
     My mornings are full of false starts, though I move from the bed and my C-PAP to the couch when my husband goes to work. There is the morning "what's dislocated" moment and getting my first dose of medications in, as well as a liquid breakfast. Gastroparesis is not kind to solid foods in the morning.  If I'm in physical therapy, at the gym for time in the water, at the clinic for infusions via my chest port, or have doctors appointments, those all happen in the mornings. When I'm lucky enough to not have those, I sleep in.
     I'm blessed to be able to work from home with a wonderful accredited homeschool academy. Losing my ability to teach full-time was a very hard blow, but I could not keep up and was dislocating joints in the classroom at random times or in the halls due to a rushing teenager.  However, I now get to work with students and their families from my home office. I use adaptive equipment like a vertical mouse, voice to text software, a brace to hold me up better, and athletic tape or ring splints on my fingers. On bad days, I work from the couch. I'm exhausted by the end of those hours, though, so end up needing a long nap in the late afternoon.
     Most of the daily tasks happen right after that nap. I'll work on home physical therapy, will try to get a house-task done, or will be outside in my adaptive garden or greenhouse. Regardless, I'm braced up, taped up, and with an electrolyte drink in my hand and phone in my pocket in case I fall. I try to make large batch meals so there are nights where we have leftovers, as it is exhausting to cook. After that, I'm back on the couch, working on my novels or gaming and roleplaying with my friends. On really good nights, I can get some sewing in as well. Sleep does not come easy, due to "painsomnia" and side effects from the medications keeping me alive. I'm up late... even when I want to be asleep.
   There is so much I miss, like being able to go hiking whenever I want, or the freedom to run errands without having to build in ample crash time afterward. I hate the looks I get parking in handicap and have been verbally accosted even when I had a cane and knee braces and ankle braces on. I miss dairy and nightshades and being able to cook whatever I wanted. I hate being on so many medications, though do what I can with natural methods too. I own so many braces, splints, rolls of therapy tape, and compression garments that I could open my own supply store. I miss being able to look at my future and actually seeing it. So many of us die way too early. I miss the income of working full-time. It has made things tougher for us for sure. There is so much our house needs or what we want for it that we just cannot handle now.
   However, there have been some positives too. Without the people I've met in this journey, I wouldn't be in the position I am today - volunteering for Dysautonomia Support Network in their largest Facebook support group. I've made some amazing friends through this battle. I wouldn't have been able to teach so many about rare genetic disorders (my husband has PKU, so I get to double up on the education giving!) There are people I've been able to influence positively because of what I've gone through. I also wouldn't have gotten back into sewing, wouldn't have been sewing commission work, and wouldn't have met the Piecemakers, the charity quilting group I volunteer at on Saturday mornings. They keep me going, though I'm on the couch for hours afterward. I also wouldn't have had the time and focus to write novels. Two are already out with a third coming in June and another by the end of the year.
      Ehlers-Danlos Syndrome is a beast. It is a heavy burden to bear which affects every part of my life. However, it has made me who I am today.

#EDSwarrior #Zebra #DSN #bodydrama #divajuice

Monday, February 25, 2019

On the Warnings in a Dream

Her name is Sarai, and for the past three weeks, she and I have been spending a lot of time together. It's not that we necessarily want to, at least I didn't. I've been happily focused on writing my third novel, getting back on track after a month break to heal tennis elbow and a dislocated thumb. However, just as I started writing again, she showed up... big... the same way that Harlie showed up eight years ago. The dreams were stunningly vivid, her story amazingly complex yet incredibly simple. Her life played out in front of me every night for nearly three weeks.

There were a few things in her world which stood out.

First, for those who have read "Midnight to Morning," she's from the time James and Rick warn about.

Second, she had a very clear warning for what our future could hold if we keep on our current path. Honestly, I can see it happening... easily. Her story picks up just a hundred years from now. What I saw was this:

Earth went past its tipping point during a series of global wars. It was already teetering on the edge and showing it through wild weather, increased pests and illnesses and such. Now, it is actively eliminating the cause. There are plagues which wipe out tens of millions, natural disasters of epic proportions are almost commonplace, infrastructure has been devastated, and farms long poisoned in the name of prosperity are no longer able to support even the reduced number of people.

Christianity is practically lost, and it is their own fault that it happened. First was the breaking into two distinct factions, the "Radicals" with their hatred and twisting of the scriptures to defend it and the crooked politicians who supposedly were God-fearing, and then those who tried to live the way Christ taught, the actual "Christians.". One was not strong enough or outspoken enough to overpower the other. People saw the bad and more turned to atheism and other religions and started actively attacking all Christians, regardless of if they were out helping the poor, loving everyone, supporting everyone because we all are sinners after all. All are lost without God. Laws started to turn against them. Churches fell after losing legal support. What was left went underground, their decades of whining that they were being persecuted actually turning into true persecution. Those who had been doing good in the world continued trying while remaining hidden. Sarai's parents are two of them.

Society as we know it has broken down due to major political changes and those wars. It is now broken up into four segments: The Wilds- lawless remnants of towns and cities. The Camps - where the poorest are trying to scrape out a living in slums. Some basic needs are provided for somewhat but not enough. Resources are too tight. The Compounds - a lower to middle class structured area where everyone has access to housing, simple meals, and clothing basics and receive a stipend based off of their job and how well they do. The goal is to save or do well enough to get into better housing or better jobs with better stipends. Then there are the Barons - the few upper class who have taken over vast swaths of land, be it decimated cities and towns or farmland. Most set their domain up with a center of large houses and fancy properties and surround it with the Compounds, which they run and profit off of, and finally the Camps. There were many more details, but those will be in the book.

It was all incredibly vivid, and I can tell where my mind was taking current events and playing them on fast forward to a possible outcome. It wasn't that way with Harlie's story. These clearly rang of warnings to the point I've felt this blog needed to be written about what I saw versus waiting until this book was written and published. That will happen after I wrap up the Midnight to Morning trilogy this Spring. I'm not sure what anyone else will think of it... but there it is, Sarai's warnings.

Saturday, January 19, 2019

On Desperation and Compassion

This post could go so many different ways, but I'm going to try to stick with a single focus.
Today, I spent most of my work hours focusing on the high school's yearly "Act for Compassion" event through Compassion International. Each year, we focus on a different area where the organization is helping. We've covered at-risk-for-trafficking kids in Brazil, the Medical Intervention fund, and the Water for Life initiative. It is a way for students and their families to learn about families in developing countries, families who are similar to them and who have the same wants, needs, and dreams. While writing out the weekly emails, I found myself trying harder than ever to get across how similar we all are, but how the dark hole of poverty can crush those in developing countries, and how we can help.

But I was also thinking about the current swords being swung, and how twisted the conversation around those living in these countries has become. I found myself, ashamedly, picking stories from African and Asian countries so I wouldn't be attacked over Central American ones. Yes, I've been attacked, repeatedly, and it has left a mark.

For what? Why?

I've been with Compassion International for over 21 years now. In that time, one of the main things I've learned is the families in these developing countries are lacking one big thing. Options. They are born into poverty. Born into limited food options. Born into limited or no access to clean water. Born into countries with crushed or corrupted economies, many of which the developed countries have caused. They are born to where there are precious few job opportunities. Born into where there are high crime rates because of the levels of desperation. Born to where getting a proper education is difficult or almost impossible. They are born into hopelessness, and there are very few ways out.

Charity organizations come in, and they try their hardest to make positive impacts. Some focus on infrastructure, like wells and streets. Some focus on building better housing. Some focus on just providing meals and vaccines. And some, like Compassion, focus on eliminating poverty starting from the child up... their food, books, uniforms, and supplies all purchased locally, to build the economy. Their tutors, those cooking their food, those sewing the uniforms, those teaching skills, all coming from the community, providing wages. The areas around the Compassion centers are growing and developing as the children do. Right now over 2 million children are in the program... but there are so many more!

I was attacked for pointing out that hopelessness, that desperation. For pointing out that you cannot just aid an organization or go on a missions trip to these places, making yourself feel good, and thinking it is enough for all. For one minute saying you love these hurting people, and then the next minute cursing their existence because they are trying to break free and get help. For speaking up when an acquaintance went to another country to build a church, and then came home and screamed about how dare those people, from the same country he just left, try to come to our border and beg for help. I'm not talking about border jumpers or those who overstay visas, I'm talking about the abused woman and her children who are escaping the cycle. I'm talking about the young men trying to get away from the gangs and drugs and find a better life. I'm talking about the mothers who know their children would likely die or never break free of poverty if they stayed where there are no jobs, schooling is too costly, crime rules the street, sex trafficking is out of control, food and water is scarce and more. These are the "least of these." These are the people Christ repeatedly asked us to help. Oh, but what about those in poverty here? Help them too! The ones making the most noise seem to be the ones who are not lifting a finger to help either group, or who think donating some ripped up leftovers is the best answer.

I had a member of my family who was rumored to have crossed the ocean as a stowaway to escape the rising communism in his native country. He was desperate to break free before it was too late. I've taught children who have told me the horrors their families faced before coming to the border and asking for asylum, asking to be saved. I had a student who was kidnapped by a gang and his father raced him up to the border the moment he paid to get him back, begging to be let in, too scared for his son to stay where he was. I've talked with their families, in between the multiple jobs they work, because they want their children to have what they never could. I've helped out when that transition has been hard, dropping off needed items, or just being there to listen as they relay the hopelessness of the past. I've also watched them thrive! A car bought, a house rented, a child graduating high school and then college, a parent moving up from menial labor to management because of hard work and determination... building up our communities here, building up our country!

We are called to love one another as Christ has loved us. We are called to love the least of these. We are called to help the orphan and the widow... the ones who would never be able to gather the thousands upon thousands of dollars to pay lawyers and bribe officers and clerks so they could "come in the right way." They are still coming in through the legal way, through the border crossing stations. Why are we not following the clear and simple commands Christ gave us? Why are we showing up to church on Sunday and twisting the Bible to be hateful on Monday? Why are supposed Christians attacking Christians for following what Christ said?

I felt anxiety when writing emails about charity today... purposely picking out countries outside of Central America to help teach others...

Because of the reactions of people who are supposedly followers of Christ...

Think about that.