On Pausing... Selah

 This is a hard post to write, because anyone who knows me well, or has been in my house any length of time, knows the trio "Selah" is often heard playing. I have been a fan of theirs for nearly 20 years now, back when it was Todd Smith, his sister Nicole, and Alan Hall and now with Amy Perry. Their music was so uplifting, voices so powerful, and the message so strong. It helped get me through a lot of tough spots. I'd even performed some of their songs at a few conferences. 

I rarely got to see them in concert when I lived in Virginia. They never were any less than a 2 hours drive from me, so I only got to see them two times. But, I supported them by buying every CD at pre-release, playing them often on Spotify, and sharing the music with others. One of my biggest excitements about moving to Central Tennessee was that I'd be within 90 minutes of several dozen popular concert locations and so many big churches my favorite artists would perform at.

In the midst of my cancer battle, as I was wrapping up the Red Devil and Cyotaxin combo and taking a two-week break before starting Taxol, Selah was going to be having a Christmas concert just an hour away. It would be my FIRST concert in Tennessee. I was thrilled! 

I knew, with my disabilities and cancer battle, pre-planning had to happen to make the night a success, and I jumped right into it. Churches tend to have these mini rows in the back for the disabled. As if tucking us back there is safer, and keeping us out of sight is easier on all. But it's so hard to see from there unless the sanctuary is built on an angle, and so many of us have vision issues or it's hard to hear and focus with the entire crowd in front of us. I was trying to avoid that.

Immediately, things went south. Within 48 hours of sales opening, all of the premium tickets were gone. Those were the first few rows of the church. I later learned they weren't even offered to the general public. The church bought them out immediately.  So, I bought the regular ones for myself and those coming with me and made note of when the church said doors were opening for general seating. We planned to arrive 30 min before that, though hoped it would not be needed. My next step was to message Selah's contact on their website, the hosting church, and the sponsoring radio station. I told them of my disabilities and the issues many face in smaller venues like churches and asked what could be done so I wasn't stuck in the back rows. I also shared my love of the trio, cancer battle, and the hope that maybe something could be arranged so I could meet them. 

Silence. From all three. As the day approached, I tried again and even messaged their Facebook page. Silence. From everyone. It was crushing. 

The day of, I was anxious. Would I even be able to find a seat where I could see them? The chemo was making a mess of my vision, and I was using my forearm crutches to get around. We arrived super early... only to find the church had opened the doors to their regulars even before the announced time. Then, in the windows, I could see people meeting and talking to Selah - all smiles and laughter. My emotions dropped as we entered the 2/3rds full sanctuary and tried to find enough seats so we could be together and I could at least be on the end to lean over and see maybe part of the stage. Where we sat had an overhead fan blowing cold air, so we had to keep our coats and gloves on. I started to cry.  

My mother, knowing I had taken all of these steps to make the concert experience safer and better for me and how much I love the trio, got up and went to start talking to whomever she could find. It took a few tries before one of the radio hosts told her she had to buy a CD and get in line after the concert in order to meet Selah. He told her that when a certain song came on, that was the end of the show and I should head out then to be one of the first. Being I already own all of their CD's she picked a duplicate and came back to tell me. I love her so much! It was at least something. I'd be able to briefly see them up close.

The concert itself was grand. While I could only see the piano and Alan and not much more between lights and people, the sound was great! I enjoyed the music, stories, and the video segments on the big screen. My hands were in the air for a few songs, and for a bit of time the trials subsided. 

We made our way out at the start of the final song. I was first in line and spoke to the radio host while waiting. He was pretty friendly, though distracted. Finally, Todd, Amy, and Alan took their seats, but were immediately rushed by line skippers and VIPs. So, leaning on my crutches, I waited. When it was time, I got to say a few things to Alan before Todd reached for my hand and asked about the cancer and spoke very kindly to me. I tried to introduce Amy to my niece, who is adopted from foster care - knowing she is a foster mom, but she didn't seem to note it. Alan was super sweet to her, though! As we gathered to take a picture, I brought up how long I'd been listening to their music and how my last concert was when Amy had been with the trio for just three weeks. I had my years off, though, and the only words Amy said to me was to snap the correct years. It was too much. The group pictures have me tearing up in them. And by the time we got to the car, I was crying once more.

 Almost a year later, this experience has lingered with me. I've not attempted to see anyone else in concert, though so many happen around here. And, when Selah announced a date in Nashville, I made a reply on their Facebook about how I'd like to see them, but the last experience had me still sad. Amy Perry popped on immediately with a defensive comment about how the concerts are usually fun. I replied that I'm sure they were, and I'd be open to discussing the lengths we went to to make sure it could be for me. Then, once more, I sent a message off to Rixon Enertainment Group. And there's silence.

What's worse? I was removed from their Facebook page. Christians are their own worst enemies... and a disabled person trying to make sure seeing her favorite Christian artist and being treated like that is just wrong. I'm gutted. It hurts to hear the songs that once uplifted me. It brings tears instead of joy. I've found myself removing many of their songs from my Spotify list, tucking their CDs away instead of playing them in my stereo. 

And I don't know if anyone will do anything about it. For 18 years of support, one sentence, and an invitation to speak on disability access and service to those who support you, after trying so hard to get that accessibility at a show... and gone. 

And so we Pause. As their name states Selah.

On Angels Of The Trip (Disney Part 2)

 My entire trip to Disney, from the planning phase to the moment I was reunited with my parents at the end was filled with "angels."  I was so nervous going into this adventure, so much had to be done and it was going to be a costly thing to have go sideways. But, from the very start, God paved the way and put people in the right place at the right time.

Beforehand: I had been saving up, slowly, for the trip. The multiple moves, cancer battle, and other things had put that on hold. But I had the special needs trust to lean on if I didn't save enough. But then the first angel arrived. A lifelong mentor and dear friend sent a check that covered the entire cost of the resort and park tickets! I'd just need to cover the car, airfare, scooter rental, and daily expenses. 

Then, as the announcement of the trip was made, a former co-worker and precious friend Margret, and her husband Greg, contacted me. They are avid Disney World fans and visit frequently. They said they'd come with me for the first part of the trip. I wasn't going to have to tackle Disney alone! 

Onward to Flordia: I had gotten a great discount with USAA for my plane ticket, and it was a straight-through flight to Orlando - so needed. The problem is the flight initially labeled as United was actually Silver Airways. The reviews for the airline were appalling, so I braced myself. Sure enough, it took 4 days and nine hours to reach a human about needing a skycap to get me from curb to terminal, only to find out the day of that they never put in the notes. Thankfully, Huntsville Airport scrambled and found a super sweet employee who took me all the way through. I made sure at the terminal to have the person checking us in note I needed wheelchair assistance at Orlando. He promised to enter it in right that moment. He didn't.

After 5 hours of delays and getting to Orlando at 1 a.m., the wheelchair wasn't there. The lady at the desk was annoyed, and those on the plane were super apologetic as I waited and waited for help. But an angel of a young man was sent to help me. He was so sweet and decided to break protocol. He's only supposed to take me to the luggage/curb and that's it. But it was so late, and I was so tired, and he saw it so took me all the way out to the garage and got me checked in with the car rental, and even loaded up the vehicle for me! 

The drive to the resort was painful. I had torn up the surgery site in my elbow a few weeks prior and was in the big metal brace post-injections for all of the trip. But, I made it to Pop Century at nearly 2 a.m. The woman at the front desk was saddened by my experience getting there and quickly called someone to help as she saw I was dead on my feet. I had to somehow get both my rented scooter, car, and luggage, over to where my room was. Enter the next angel, named Edwin. He drove the scooter around as I found a place to park closer to the room. Then we switched places with him hauling my luggage (mind you this is heavy because I had IV fluids and my CPAP in the big bag on top of everything you'd usually bring.) At 2:40 I was finally securely in the room and resting.

At Disney: Bright and early, I met with Margret and Greg. Margret with one of those awesome cooling towels in hand as a gift for me. We were soon off and running to Epcot to see my favorite character, Figment! But we were having some issues understanding the DAS system, and that's when the next angel arrived. An elderly man, working for Disney in his retirement years, patiently explained the difference between DAS and DAS Advanced that I'd set up and showed me how to access it all on the phone. Margret and Greg were the best angels the two days, using their photo pass so I had some amazing memory pictures, making sure I knew the best ways to get to the best spots for when I was soloing later, getting us onto Ride of the Resistance on a super busy day (OMG that ride!), the hilarity at Prime Time Diner and so much more. Along the way, there were people who opened doors, raced over to help if I dropped something, helped me reach items I couldn't because of the scooter or brace, noticed my "This is my fight hat" with the breast cancer symbol and shared their stories or words of encouragement and more. It wasn't just staff either but fellow visitors. I've never felt more accepted than those days in the park.

Interlude at The Villages: I loved the four days of seeing family at The Villages. But the angel shout-outs go to my Aunt Anna for her incredible packing skills! I had to ship a box home because there wasn't any way to fit the droid I bought, and other things, into my suitcase otherwise. She fit so much into that little box, I don't know how she did it! The other is to my cousin Stephanie for the wonderful hours we spent hanging out and catching up. It was so meaningful and needed. 

Heading Home to Tennessee: After how the flight out went, I was quite nervous about the one home. Orlando does not have a good reputation among disabled fliers, especially regarding their TSA. I hadn't heard from TSA Cares so left super early to make sure I could get through it and the airport with waits for help. But the moment I pulled my rental car up and started to strap on the arm brace, an employee of the airport was there to load my luggage onto the cart after reminding that he works for tips. We had a lovely chat about his home country of Venezuela as he helped me through checking in the car and getting to the counter for Silver. They actually had noted my need of a wheelchair this time, so the wait for one wasn't too long. The next skycap was kind and we lucked out that the TSA line was bizarrely short (though the TSA employee lived up to Orlando's reputation of not being kind.) The flight was on time, and soon I was in Huntsville. There, the same guy who did not enter my need for help before was waiting with a wheelchair. He was apologetic. We discussed the problem, and I asked about him. Found out he was a student at the local university and was studying computer science while also working long hours at the airline. He became the last angel of the trip as he made sure I not just got my luggage but he stayed with me until I was at my parent's side once more - much to my mom's relief. She panicked the whole trip! 

And so we have the angels of my trip to Disney. It was so much more than expected. Every single person came at just the perfect moment to make my travel adventure go so much better than expected. I am so very, very grateful. 

On Visiting Disney World While Disabled (How I made it work and what I saw)

It was big. Very big - The idea that in the middle of my cancer battle, while also balancing Ehlers-Danlos Syndrome, Dysautonomia, and the other conditions it brings along I could, somehow, travel alone from Tennessee to Florida and to Disney World for four days. I knew I had to do it, though. The break was needed, and the desire to prove that this broken body could make the dream to experience Disney as an adult happen. A lot of thought, research, and advanced planning went into it. Here's what I did. I hope it helps others.

The Flight: When buying my tickets, I reached out to the airline to say I would need a wheelchair at all legs of travel. I also backed it up with a call to the airport a week before the flight to review their offerings and inform them I was traveling solo. You need to reserve as much energy as possible as travel days are so draining even for the able-bodied. Make sure to have tip money for the Skycap employees who will help you get from curb to gate. I knew my checked bag was going to be overweight on the flight out due to bringing IV fluids along, so made sure the airline and I had worked that out ahead of time. You also should contact TSA Cares with your information. They may not call until the day of your flight, but they will email back details on what to expect with TSA and acknowledge any accommodation you bring up, like traveling with liquids, medications, implanted devices etc. Give yourself extra time as you will have to wait for your chair, and sometimes TSA takes longer as you will get patted down and swabbed. 

The Resort: It was the best decision ever to stay at a Disney resort. I wanted to spend the most time at Epcot and Hollywood Studios, and several resorts had direct Skytrams to there. No having to cram into a bus or the Monorail! The Skytram works so well for wheelchairs and scooters too with lots of space and no pressure to rush on and off. I stayed at Pop Century and found the staff to be incredibly helpful. I used Disney's recommended scooter rental company, which awaited me when I arrived, so no waiting around for delivery. An employee helped me get the scooter to my room and then helped with my luggage after seeing I was traveling alone and had physical limitations. 

I had a handicap-accessible room and, while the shower wasn't the greatest for accessibility, the rest of the room had enough space to store and turn the scooter or move a wheelchair around. However, the door was difficult. It was too heavy to open one-handed while moving the scooter forward with the other. I managed, but it was frustrating at times. 

The food options at the resort were great, with healthier options on top of standard fare like pizza. The staff was willing to work with some dietary needs and modify dishes. The in-room cooler and counter above it allowed me to bring my travel blender and items for making protein smoothies for breakfast - something I need with my GI issues. There were microwaves in the resort's eatery for those who needed it.  

The Parks: Disney has the DAS program for those who cannot handle long lines and require assistance. It is vital to set this up as soon as you can, which is 30 days before the trip. You'll be interviewed by a Cast Member on video chat as to why you need it and your picture taken through there. Then, they'll set up DAS-Advanced, which allows you to pick two rides each day ahead of time, so you already have a partial schedule before even arriving! Once in the park, you then can choose one ride at a time with the regular DAS system on the Disney park app, even in between the ones already scheduled! I knew exactly when to show up for a ride or show and never was in line for more than 10 minutes. The Cast Members were super helpful and moved the scooter from the entrance to the ride to the exit and made sure I could easily access each ride. There were some fun in-character engagements during those, especially in Hollywood Studios. 

The Cast Members (employees) really try to make the visit magical all throughout the park, especially when they see someone who is differently abled. Even the support staff in places like the grab-and-go eateries were helpful. At one place, it was very crowded. One of the employees noted balancing my food tray, drink, and bags on the scooter would have been tough, so they took the tray, found me a place to sit, and even went to get my drink for me. If you have special dietary needs, letting restaurants know ahead of time can ensure accommodations. I ate at Prime Time and they had a menu specifically for those with restrictions and also made a small change on the spot for me with a side dish. The crepes place in Epcots' France area also asked about restrictions and modified my dessert to work around a restriction.  

From the rides, to the shops, to even those monitoring the bathrooms, nearly every Cast Member was working to make sure the experience was magical. I have never been to a place so open and friendly to and inclusive to the differently-abled. This made my visit to Disney as a disabled adult even more incredible. I could relax and submerge into the magic of Disney and have moments where I felt like a kid again.

On August 26th, 2023 (You Learn to Like Pink)

 One Year. August 26th marked one year from when I learned I had Stage 3 Triple Negative Breast Cancer. I'm alive. I'm still fighting. We don't know if I'm free of it yet. So much has had to be thrown at it. But I am here. 

Here's a reflection.  

"PINK" 

You’ll never forget where you were on that day when the phone rings with results

The moment in time when you learn  your body has turned against itself

Grown things it should not and created dangers to your life

Your heart stalls. You forget how to breathe

The color drains from your face as reality sets in

The voice relaying their apologies along with what kind it is

Next steps, how they’ll do all they can, but more tests need to be run

At home you get lost looking it up

Throwing yourself into research, statistics, and the fear grows

The fog sets in as scans are done, blood drawn, and you wait

And pray they don’t find it anywhere else

The meeting with oncology with all the big terms

Of big drugs and big treatments with big side effects and long times in the unknown

But it is a chance to survive

You’re sent home with a binder, flyers on support groups, resources

And items in pink

You learn to like pink

Through preparation, and the “thoughts and prayers” from others

And the insurance calls and the many nightmares 

You put plans in place and pieces together and the day comes

The needle inserted, medications given to help with side effects

Then the drugs infused from a nurse in a hazmat suit

Because of how volatile the cocktail is

The red devil that could be part of the angelic cure

A talk with the nurses. Reminders of what to expect

You are going to get worse before better

Hair will fall out, taste will change

You’ll vomit, be weak, and it will hurt

But you need to eat and rest and try to keep your strength

Looking at those around you in various phases of battle

A bag given with handmade comfort items

And other things to see you through

More items in pink

You learn to like pink

Days and nights blend until you don’t know where you are

The simple act of breathing, talking, and eating, takes so much

The isolation as those whom you hoped would call

Or maybe those who would even visit

They’re all quiet or excuse with “don’t want to disturb”

You get it, they are uncomfortable. But it hurts as bad as the drugs do

Those moments when someone does reach out

A call, a card, a text, a package

It lifts your soul when you can barely lift your head

The head that no longer has hair

You fight, and pray, fight, drag through, battle on

Counting down cycles as your counts look like hell

And you hope your body can hold up through this curse that could be the cure

Wigs, scarves, earrings, bracelets, Soft shirts, awareness gear

Support group calls and webinars, Appointment after appointment

There’s so much pink

You learn to like pink

And finally, the infusions end and you get to breathe

A few short weeks to get some strength, put on some weight

Give those supporting you a chance to rest, as they are exhausted too

A break before the next round of the fight starts

Surgery to cut the remnants of the offense

The part of your body that went haywire now removed

Along with so much more of you.

Incisions, drains, drama, and waiting on pathology

The wait is agonizing. Was there more, did it spread 

The weeks of radiation that follow

Burns and blisters. Exhaustion worse than ever before

But your hair is starting to come back,and food doesn’t taste like metal anymore

There are talks of follow-up treatment

Supportive medications, lingering pill chemo

The wait…. So much waiting, Months in limbo before the next scan

And all along the way

You learn to like pink

On Living

 I want to live.

It screams in my head all day and night.

I want to live.

Even knowing for 5 years now that I wasn't meant to make it past my 50's.

I want to live and prove the doctors wrong.

Now. Cancer. Rare triple negative variant.

Numbers like only 10% of breast cancer patients get it.

Survival rates are high if not in stage 4, though reoccurrence is just as high.

But I want to live.

This giver and helper, whom fights for others every day.

Locally, regionally, globally. With every breath I take.

It's a bad day if I've not helped at least one person.

Or made someone smile.

I want to live.

When every big positive moment is crushed by negatives just as big.

A perfect-for-me home in a cute little town. 

So excited to move and start anew after so much pain.

Triple-negative, stage three, cancer.

The new start starts with this stigma. Will they even care to know me for me?

But I want to live.

Getting to see friends and former co-workers at a luncheon. Leaving happy!

My truck and I were damaged on the way home from it.

These two latest examples in a line of so many it is overwhelming.

Any time something extraordinary, something positive happens.

Any time I tell people about these good things and allow the happiness to show

Every time it gets knocked away, stomped on, kicked apart, destroyed.

Yet I want to live.

Even if it is just for the little good things that happen versus the big.

Like making someone smile, or a moment of discovery in nature.

This giver and helper who races to help others

Who fights against a genetic nightmare so others can get better treatment.

This friend, niece, cousin, who drives my damaged body many hours north and south every year.

Who calls and messages long ahead of time to try to make plans because I love you all.

Who gets "call when you get here" when I'm not sure there will be time or energy.

Who knows I don't mean enough to any of you to do the same. 

No one ever visited me, and there was so much I wanted to show you!

No calls in between visits unless I made them to you.

Yet, I want to live.

The helper of helpless cases as my online friends call me.

But they know I'll jump in and be there at a moments notice.

Now begging, pleading, for help from those around me near and far.

First in the winter as my world of 15 years came apart.

When I had to rebuild, piece by small piece, into something better.

The silence, the lack of help, was intense then. 

The actions of someone I barely knew anymore put a roof over my head

So I can live.

Now, the silence, the lack of action, is intense once more.

I don't need  "You are so strong, brave, resilient."

I need rides to doctors or ways to pay for rides until the truck is fixed. 

There's not enough to cover sudden repairs and rentals on top of bills.

Not when one is in the government's tight fist due to disability.

And I want to live.

When treatment starts, it's going to be making sure I'm nourished.

Healthy delivered meals that are easy to heat and eat.

You ask how you can help. Or say you feel helpless and don't know what to do.

I put out what I need the most on social media, instant message. texts, calls.

Silence.

But I need to get to these things to live!

Don't you want me to? 

Or do you think my damaged existence and its bad luck has run its course?

I don't. I know there is more I was meant to do.

More I was meant to see. 

I want to live.

On Deconstructing Part One: The 14th and Women

*Note* This is a multi-part series that's taking days to maybe weeks to write. Currently, three parts are in mind: The Women, The Others, and then The One 

Oh! It's just turning over the ability to have an abortion over to the states again is all! I've heard it over and over. That and how precious all life is. Yes, all life is precious, very much so. 

But this ruling had only partly to do with abortion and the politicians who repeatedly deny support to the children and families once the babies are born or do anything substantial to make it easier to prevent the pregnancies to even begin with. It partly has to do with what happens next with those women and families to keep them controlled by certain factions. And, it has even more to do with the vagueness of the 14th and what is likely next.

In the end, it affects Everyone. 

The ruling blew the door open to everyone's privacy, autonomy, and basic rights. It says that, depending on the state you live in, you may not have any rights or have limited ones to plan a pregnancy. Your ability to handle a crisis pregnancy from rape or incest or carrying a child who will suffer before dying young in a state where that same party cries over the cost of the disabled is even more restricted or outright gone there. To prevent pregnancy in the first place is restricted and controlled by someone else totally disconnected and the other half of what it requires to get pregnant... the male... has nothing holding him back and even is supported with tons of options to make them want more sex. There's little consequence to them when the pregnancy happens, though, and lots of blame on the woman. Also, if you're needing to take a hormone for other medical reasons, there's now fear of repercussions. And what about those who want to protect their already existing family or frail future from the narrow-minded "should have taken better care then" who are themselves not caring what caused the situation in the first place? All of the above is scary enough. It's now worse in these states. 

And, no, you can't just "vote" it away. And those who are most affected cannot just "move out" of the state or leave it temporarily. These are the at-risk, the lower income, the minorities, the children, those caught in religious extremism, and more. This goes far beyond the right to have an abortion.

It affects situations like the 11-year-old two counties over here in VA who just gave birth to a girl conceived by her 13-year-old brother raping her. There are so many aspects of their lives being covered up with "religion" as the excuse so three young lives are in crisis. Even away from it the governmental system is so broken, their situation is bleak. I could write an entire blog alone on the scenario around her and others like her now more stuck than ever in a system engineered to bring a baby to birth under "Pro-Life/Anti-Abortion" but with politicians who will not support them after the birth and this system set up to devastate the victims like children and disabled.

Here is an example: In my own first pregnancy, which thankfully ended in miscarriage, I was on birth control but also an antibiotic. It failed the night my first husband went into a drug and alcohol spurned rampage through the house, then took me against my will, leaving me bruised and knowing I could not say a word, or it would be much worse. Had the miscarriage not happened, I would be the mother to a now 19-year-old, having been stuck and dealing with custody arrangements, forced to engage with someone who abused me for years ... or without him, because he didn't pay anything else so why pay child support and the struggle that would also bring on.  

At least I had a family and college education and career, though. Imagine someone who didn't have a supportive family or a career that paid enough for childcare and insurance. Who would be working multiple jobs and barely gets to see their child to raise them and leaves them in the hands of strangers for all but a couple hours a day. Who has to handle one political party's refusal to keep or expand help like childcare vouchers, housing help, SNAP, Medicaid, welfare, paid parental leave, etc., and watch both parties' refusal to set up transitional programs. It is an ALL or nothing system- you live ALL on the system or none and the results are often catastrophic. There is no real in-between. The desperation and knowing end up with women trying to get an abortion be it the pill form that terminates before 10 weeks or one more involved. This is especially true before ACA when birth control wasn't required to be covered, but even now after because it can be so costly.

My second situation was when the decision was made to stop trying for kids in my second marriage. Both of us had genetic illnesses they could inherit. I was getting sicker constantly and knew I'd be unable to give a child the attention and upbringing they deserved. He had his own issues that needed more focus, and it wasn't fair to put a child into that. We were called selfish by family members and churchgoers. Then my OBGYN hit me with the "I need your husband’s permission for you to get your tubes tied" when I learned I couldn't take most birth control anymore and an IUD was out of the question with my condition. This was because I was still child-bearing age! Never did get that done. So many others end up with this scenario, and now they and their lives and children's lives are at more risk.

In some states with these politicians who are banning abortion, some are already restricting certain birth control, two are criminalizing some parts of having a miscarriage, some are eliminating emergency contraception. They've been restricting what is being presented in public schools and eliminating handing out free condoms while students who give birth have to be back in class within a week. Pregnancy does not qualify for homebound instruction in most states anyway so education is interrupted. 

So what are women to do? The painful progress forward around abortion, not just the ability to get one but the ability to prevent one from even being needed, has taken steps back. 

Families everywhere are going to suffer. Our country will suffer. 

In Part Two, there is "The Others" a side of this that is just as scary... the next steps already being promised pursual by one Justice. The ramifications of weakening the 14th are just getting started.

On Where The Road Led

Envision a road. It's a one-way street but has two lanes.

A woman is walking on it alone and struggling.

She has a large bag on her back, baggage from the past.

Every few steps she takes an item, looks at it, talks to it, then drops it.

In time, it was a lighter load and she was able to manage better

After a time, another joined her on the road.

He too had a bag on his back with baggage from the past.

But they soon were walking side by side and talking.

Before too long they were hand in hand.

Instead of the baggage, she was busy tending to his needs.

He did not know much about the road so she had to show him or do many things for him.

He couldn't eat much from places they came across, so she made special meals.

She didn't know much about the technology he carried with him, so he taught her.

They loved to travel together and enjoyed all of the imagination that comes from watching the night sky.

And together they continued on.

Within a short time she began to limp, limbs became damaged easy, the pain was so great.

Yet she continued to do more than her body could accept. 

He was struggling with his emotions and memory, and she worried so much for him.

Along the way mistakes were made by him and he'd look away for long periods of time. 

She forgave him and would try to move forward, though she was getting tired.

But he didn't seem to forgive her for any mistake she made. 

She asked those they sometimes traveled with and those they knew from before on what he was upset about.

Were the perceived worse offenses so terrible? No one seemed to think so.

And so she kept walking, though now with a divider between the two, though side by side.

Her exhaustion was growing, but she leaned over the divider to tend to him while walking.

Sometimes he'd help her get to the side of the road for something needed.

But any time an injury would halt her, he'd linger a day or two but then move forward again. 

She had to catch up or be left behind or watch him struggle as he still didn't know so much of the road.

The road became full of potholes.

Her injuries grew worse but she kept taking steps forward.

She found solace in the technology he taught her about, found an escape from the pain.

After all, he'd been escaping this way every day from their first moments together.

But that was an offense too she soon learned, and by now she was fighting fear.

He was walking on the far side of the road, away from her.

She'd go to the divider multiple times a day, to talk, to hand food, to offer help on something.

He'd look annoyed, but then complain that she wasn't doing it enough when around others.

It went on and on as she stumbled forward.

Some came and stood in the divider and tried to get them to walk closer again.

She'd walk along it, hugging it and doing what she could while hurting.

Then one day, he stopped responding at all.

And then pointed out that he was getting off at the next fork in the road.

She needed to prepare to be so damaged and continue forward on her own.

And now here she is, looking at that upcoming fork and wondering how she can.

She worries as he still doesn't know the road very well. 

She's been doing so much for him... now she has this tiny window to finish showing him so he maybe can walk on his own.

She'll do this because she still loves him so.

And she'll do this while she has to figure out how to limp forward on her own too.

So damaged. So tired. But so determined.

Change is coming. She has to be ready.

The Mixed Up Year

 While we have a month and a half until 2021 hits us, I've been reflecting a lot on this crazy year. You know, many of us tend to say that about any given year, but I don't think we'll be doing that anymore. This takes the cake! Warning: This is raw.

Some say "If we'd only known" back in January what this year would be like. Some of us had some idea. My husband was watching China closely when the first signs of COVID hit. By three weeks in, he was warning that we needed to stock up because that virus was going to make its way to us and looked bad. How right he was, and I'm glad we did stock up. As the naysayers started in on their conspiracies and people started fighting for toilet paper, we already had masks, essentials, and more. When my main EDS/Dysautonomia doctor sent his recommendation to lock down, I'd already been for two weeks. There were ample amounts of fear and frustration, especially as some of my friends and family were calling it a hoax or "just the flu" or saying it would do the world a favor by taking out the sickly (um... I'm one of those...) and insisting it would all vanish in November. Well, we know how that has gone, and my already small circle has shrunken over it - some because they died of COVID and others for their continued hurtful words and posts without thought to find out if it were even true or realize how it would affect others. I miss quilting group. I miss being able to freely go out and meet with people. I miss seeing my family and traveling. It was already so hard to do so with my conditions, and now the pandemic made it impossible.

Spring hit, and with it, we were fully in the pandemic. At work, our numbers of enrolled students were exploding with families wanting proper curriculum for their students instead of quickly assembled packets and online busywork. Right in the middle of it, we learned the dual-enrollment program I run was in big trouble. The platform we were using was getting shut down with barely a 2-month notice. My entire summer was a race to find a new program, learn the ins and outs once one was found, help with the contract, write a new handbook, move students over, train the advisors, and more. It was rough and incredibly stressful, but I did it and the students are really liking being with a proper college now. 

While that was going on, my beloved online getaway was in a crisis of another kind. In September of 2019, I'd been asked to help build up the roleplay community in Star Wars Galaxies: Legends. Many of my friends from the original game were there, and they didn't like the way some roleplay leaders were acting. There was a lot of elitism and a lot of their way or ostracized, and there was a lot of behind the scenes bashing of people. So, I jumped back into that world with my now aged up Lazana and her niece. Through Lazana, I made sure everyone who walked into Coronet Cantina (a roleplaying hot spot) was spoken to and had a friendly face. That's all I did other than her entertaining. But, because of that, I gained a following. When epic drama hit that group, and people started to split up, nearly everyone followed me instead of them. 

Suddenly, I became the enemy and the attacks hit hard. At first, I fought back with examples of the poor behavior, and the Wrecking Crew returned with lies so absurd, relentless bullying, and tried to convince the powerheads of the game that I had caused the rift. Meanwhile, I move over to a player city, went silent on any commentary, and we made Mos Vanta home - our little corner of the sandbox. They sent spies, trolls, spread their lies, and made sure I had to keep looking over my shoulder. Ten months later, this is still true. As soon as something goes wrong in Mos Vanta or in a cross-guild or cross-faction story, or even in another town entirely, someone has to attempt to point to me. Thankfully, the community in Vanta points right back and keeps me mostly protected...

Between the beauty of the stories, was a lot of stress from the above. I ended up becoming a leader of Mos Vanta, something I never wanted. But its founder was so tired of being bullied by the Wrecking Crew that he needed a break from the game and community entirely. So, I became a co-leader. As Lazana converted to Mandalorian and her story developed, I jumped back into managing a large group of very diverse people... and any decision made was likely to upset at least a third of them. But the stories are amazing, go late into the night, and distract from the constant pain I'm in, so I stayed.

Maybe I shouldn't have, but I stayed.

The Ehlers-Danlos, Dysautonomia, and all of its "friends" were progressing too. So many partial dislocations. They now happen almost daily, sometimes multiple times a day. It became harder to keep up with being active and doing home physical therapy. I'm now facing a repair and donor tendon on the left knee at the end of December. Been through this on the right one, and it is a hard recovery... but it needs to be done. The knee is in constant pain and is getting weaker and starting to pop out. It leaves me unable to keep up physically in a lot of ways, and I'm losing strength elsewhere because of that.

In June, I was finally approved for home health care after proving the clinic I had been sent to - after my beloved nurses were assigned elsewhere and the original shut down because of the pandemic - couldn't accommodate my physical disabilities. It is so very nice to be at home for the now three times a week saline infusions. I can slow drip overnight and get the maximum benefit. I now have a home physical therapist too, but she doesn't do much. She just gives me directions of things to do when she's not there. Being accessed 5 days a week was a big lifestyle change. You cannot get the site wet, the dogs need to be kept away from it, and I'm even more a walking sepsis risk, but the benefits of keeping my blood volume up at a more normal level, my bp more stable, and staying more hydrated (as gastroparesis makes it so I cannot take in enough fluids) is well worth the changes. 

Won't even go into the stress of this election and how my circle reduced even more from that.

But the combination of all the above caused me to hit a wall I never have before. Normally, I can joke off or use sarcasm to push through what the genetic nightmare does. It was becoming harder and harder to do. In community or relationship things, I found myself escalating fast. I'd go from fine to tears or anxiety attack within seconds. I started yelling at Owen, something I never did before. I kept trying to rebound, trying to meditate and use mindfulness and all of the other tricks that used to work...

And they didn't.

And it got worse. A lot worse.

Last week, I sought help. My primary care doctor (really any doctor) has never seen me cry. I broke down while requesting whatever assistance she could get me. I had already researched a counseling center closer to me, as I did not want the long drives to UVA. She wrote out the referral to the center, and yesterday I was approved for it. After my surgery, I'll be starting weekly sessions at Horse and Soul at Higgins Farm. It combines counseling with equine therapy - which is perfect for me. She also recommended medication to try to help stabilize the wild emotional shifts. So far so good with that. 

It has been quite the mixed-up year for sure.

On What's in the Bucket...

 It's an uncomfortable question, being asked what is in one's Bucket List. For the mostly-healthy, I think it might be a bit less so, as they believe they have all this time to get through it. Maybe it makes the responses a little more flamboyant. With braving up this last year and being more open with others about having a combination of conditions which now have led to me being labeled as "terminal" and open to being moved to "palliative" care as no one sees improvement as being likely, I've been asked well over a dozen times if I have a Bucket List.

I do.

Kind of.

It's a work in progress, as I had some pretty crazy things on there, but I've slimmed those down. While there are some far-fetched things on the list (at least in my mind) a lot of it is doable with a bit of help.

So... here's Holly's Bucket List 

PLACES TO GO

    Return to Yellowstone

    Return to Colorado in the autumn and listen to the elk bugle one more time

    Finish the Lower 48 with visiting Oregon, Washington and California

    Finish the 50 states by visiting Hawaii and Alaska and stand on an active volcano

    Visit more of Europe after going back to Wales

    Visit Canada

THINGS TO DO

    Spend a couple weeks going back to storm/tornado chasing

    Record a CD of songs and readings for friends and family

    Become an Inspirational Speaker

    Go fishing and actually catch a fish

    Ride horses one more time (would have to be adaptive)

    Write and publish at least one more book

    Have someone seriously promote the Midnight to Morning trilogy

    Visit the ocean. Often. 

    Go on a Compassion International tour to meet one of my sponsored children 

    Live simply out of a camper so I can travel more

    Overnight in the cabins at Wild Heart Ranch in Oklahoma and help feed the babies and visit the other animals there

PEOPLE TO MEET OR SEE

    As many of my online friends as possible 

    Keep visiting family as much as possible, no matter where they live

    Either Amy Grant or Michael W. Smith (or both)

    Meet and spend time with Selah

    Nicole Nordeman 

    Attend a Secret Garden performance

    Attend more Selah concerts

    Attend as many concerts as possible. Period. Especially smaller acoustic ones of my long list of favored artists

 So there it is... What I'd love to do before these conditions do too much damage or "takes my life prematurely" as most of my specialists tend to say when discussing the long-term. I hope many of them can be completed while I keep praying for better treatment and a chance to cure some of it. 

On... In a Galaxy A Far Away

     Today Star Wars Galaxies: Legends turns four years old. All week, it has caused me to think over my SWG story... re-reading my last blog post, I had to smile. Not four days after I posted that, my entire online gaming world was rocked, and I'm loving it.
     But to understand why we need to start at the beginning... which would be during the 2008 summer Olympics. Back then, the man known to most across dozens of games as Gwreng or Ddraig was building a new PC for me. My old one couldn't run anything published after 2000. I was looking forward to trying out some of his vast collection of games. He had other ideas. Within days of it being completed, he had loaded up his favorite obsession, Star Wars Galaxies. I'd never been in an MMO before, never-the-less something so vast as SWG. Yet, there I was in the tutorial and being rescued by Han Solo himself. Soon, I was dropped in Mos Eisley, then instantly rushed off to some unknown location.
     I remember the room with the ornate table and incredible decorations and being clueless that someone in that room had designed the whole thing out of items in the game. He said this meeting would likely happen in character, and we had made a backstory for Amandiona... but I wasn't really sure of why. That night, I was introduced to the world of roleplaying through Anishor, Ramona Garcia and others, and my own world was never the same. There were lots of stumbling about that night. However, as I was introduced to those in Future Droids and Weapons Systems (FDWS) which Gwreng led, less intimidating connections were made. One member, Josh, took the time to teach me roleplay etiquette and commands and helped me flesh out Amandiona's story through conversation. We quickly became great friends. A couple months later, I was comfortable enough to join in Farpoint Valley's Monday evening gatherings and made so many connections there - ones I ended up leaning on when Gwreng started playing less and less. Months went by and we inherited the tiny town of New Kestic, Lok. It didn't stay tiny for long! Those connections and stories were spreading out as I gained more confidence. FDWS was growing and the stories were amazing! By the time Gwreng made his exit (For EVE...ick!) I was already running the guild and leading larger stories centered around the town. Every day I deployed 6 storyteller maps to enhance New Kestic and the stories grew to encompass multiple guilds. It was a great outlet after a long day of teaching.
     Then I became really sick... the genetic nightmare I was born with caught up to me. I couldn't teach anymore, could barely substitute, and was shuffling from specialist to specialist. SWG and my growing number of online friends and connections became more than an outlet. They became a lifeline. Through sports-wrapped partially-dislocating fingers, I was able to escape the increasing pain. The world written night after night kept me encouraged.
     And then it died...
     And I ended up in Star Trek Online, with its many limitations, and made some new connections along with my SWG friends who came along like Wyrrlicci, Jorax, and Josh.
     But this too passed and I had been hearing about Legends and how awesome it was. So Josh, my brother Alex, and I headed over. It was a rough start. They ended up not staying for long, but I was being recognized nearly everywhere I went... because Lazana, Amandiona's little sister, had the same last name, and Laz had been in Live too. It felt like coming home. It felt like I needed to be here... and soon it happened. I was asked to help out in the roleplay community. More specifically, asked if I'd commit to keeping my entertainer in Coronet cantina to help rebuild that facet of the community. I first tested the water with Laz's niece, Ardiona, to see how the roleplayers did things. Once I was comfortable with it, Lazana was brought in. Yes, it meant nights of dancing to an empty cantina for hours, but then a new or returning player would come in and start to talk or roleplay or ask questions, and it felt great to help them out. Some nights there was a lot of activity, and I did my best to work Lazana into the goings-on while encouraging people to engage with each other. There were some ups and downs, as there are in any roleplay community, but her story began to take off as the roleplay there did as well. I made new online friends who are amazing. Along the way, I was asked to help with the SWGRP Discord group, which has led to me now becoming a moderator. After a meeting with the ever-awesome RoarAsh, I was given a thread on the Legends forums to help highlight the player and roleplay events in the overall community. And it makes me grin. I LOVE seeing roleplayers come together and network and start stories that spread out elsewhere.
     Through it, I was asked to help build Mos Vanta an open-to-all roleplay town. Oh did we have some bumpy moments getting that going! But it has turned into something so beautiful. Now Lazana has her own little cantina she runs 4 nights a week, while the other 3 I continue to do as promised and keep rebuilding Coronet's cantina.
    While there are moments of frustration, it has remained an incredible blessing. I love chatting with my new online friends, and some have become quite dear to me. It's a lifeline now more than ever... as with my condition and the comorbidities it brings with it, I have recently been told I will "die prematurely" from it all. It makes me all the more determined to help bring the roleplaying community together for epic stories, hilarious moments, places to just hang out and relax and be distracted from the world around us and submerge into the world we are writing.... In a galaxy far away.

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.

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

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

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:

https://owscycon.ourwriteside.com/forums/topic/kristin-ward-author-booth/

 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. 

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