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.