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