I am done hiding. I am done diminishing myself and my life and experiences, the incredible and the shit ones, in order to accommodate irrelevant people's feelings. My story is mine. My name is mine alone to disgrace if I wish, or mine alone to share my story.
So,with that, I am bringing the blog back, and oh boy do I have a ton written from the last 8?9? years. I never stopped writing. It is my favorite release aside from singing, and usually my writing weaves specific music in because that is just how my brain works, and how I can process the unthinkable things in life. Songs. Metaphor. Writing .
A phoenix is just a bird until it burns
Reconstruction is the most humbling phase in a life transformation like this.
Energy cannot be created or destroyed- only transformed.
It felt like an atomic bomb exploded our lives 6 months ago, and there have been additional blasts and radioactive fallout throughout…. But all of that energy that was released into the system cannot be destroyed, it has to transform.
This brings me to my nerdy metaphor for life right now, using the most bad ass animals in the kingdom- butterflies. Butterflies are also the symbol for lupus, funny enough. Probably because of the butterfly rash, but I really think it's because lupies are bad ass motherfuckers for handling life while dealing with our immune system attacking us, and because we also occasionally disintegrate into goo in a cocoon (of blankets)...
It is finally starting to feel more like we are in the molecular goo cocoon phase that is what separates a caterpillar from a butterfly.
The in-between.
Not quite dead, not quite alive, but very busy. When the caterpillar cocoons, there is a cellular deconstruction breaking its body down to base atoms, and then reconstruction and transformation. We have to painstakingly arrange every atom into molecules again, and those molecules into proteins, and those proteins into new structures, to create an entirely new form.
Caterpillars don’t know an end date to their cocoon, or know anything at all in there because their brains turned into freaking goop and all the different types of cells broke apart to make a molecular strew of ingredients. Contrary to pretty much all hypotheses on the topic, we have now proven in study after study that somehow caterpillars retain memories of being a caterpillar once they are a butterfly- even though their peripheral nervous system completely falls apart into goo, most of their neurons die, and almost their entire central nervous system splits apart into base atoms before being reconfigured into new molecules and neurons, a new nervous system…. somehow….some memories remain,some tiny bits of code in the goo, and with that, some awareness of their past life.
I know that we are so close. So. Close.
When this began in earnest, over the summer, I could not see in my mind’s eye any possible timelines where I lost my person. No possible futures came to mind. Just grey. That has never happened before
It was that unthinkable and horrific that I would lose this person, barring a tragic accident or something. But there was no accident. No time of death was called. No post-mortem. No death certificate. No closure.
Somehow, *my* person is dead nonetheless.
Because my person never would have done any of this, acted this way, said these things, or hurt me and his kids. He was my concert friend-turned-into-epic-romance, the Doctor to my River Song (and who was into Doctor Who BEFORE I got my hands on him), the Cristian to my Hannah from Grouplove, my hilarious, supportive, thoughtful as hell, spontaneous adventure,best friend. The most involved , fun, loving, playful father, and teacher for my two boys.
No, there was no possible future I could see open to me without my best friend, my other half. I could see survival, but nothing beyond that. Absolutely nothing. That was kind of terrifying to be honest, because I can always come up with possible different futures, even if outlandish… Yet, I could think of none.
The future for me and my two boys is clarifying by the day with my decision to pursue my Master's. This will alleviate short term financial pain with grants, scholarships, and likely a student loan to start so that we can breathe. This will allow me to continue working where I work- a place with an incredibly fierce, intelligent, and empathetic company President, and my mentor. She climbed to the top in a male dominated field, and her career started in a more difficult time for these things. I have the most flexibility I could imagine given my job title and new life title, “single mom of 2, who also has systemic lupus”. My autoimmune condition has been very unhappy about all the stress, causing more stress as my body attacked itself in creative, terrifying new ways. The lupus things are getting so much better so quickly, like they did in June. June was a magical interlude in all of this..
I had my health back for one month. In June, my energy, movements, and physical appearance could no longer be aptly described as "zombie-esque", my partner and I were going out often in the evenings, falling more in love, since we had his family here giving us time to go out. We danced, and thrifted, and danced, and wandered downtown, and danced some more.
I thought we'd made it past the humpof stressors. There had been some weird behavior in recent months, and hurt feelings, but stress levels were to the max between job losses,finances, and me being half0dead all spring. There was a real posssibility that I would die. The visit notes from every ER discharge and from every doctor's visit in those few months stated : "Based on the seriousness of patient's presentations and comorbodites.... RISK OF COMPLICATIONS AND/OR MORBIDITY- HIGH".
There was waiting for ultrasound, which looked cancery, then waiting for a surgery on a very delicate area of the neck (so many major nerves they can damage or sever) to take out a lymph node, to test for lymphoma. It was NOT cancer, thank the stars, but it was something. The process of elimination and figuring out what it actually WAS nearly killed me.
One doctor at my primary’s office took a special interest and solved the case in the nick of time. Once treatment started, I improved so quick. That's how we got from basically dead in May, to dancing in the steets for my birthday in June. Happy to be alive. To be dancing. To enjoy things.
I had no idea that the hump turned out to be a small rock in the path, and the real hump was a peak hidden by clouds, 1000s of feet higher.
Now I do see many possible futures ahead of us. Happy, exciting, snowy futures. We will be more than fine.
My hair can finally grow again, and my hands and skin and organs can heal and stay healed. I cannot wait until we can repay all of our helpers back, and yes I will try to insist, even if it was gifted. We will be caught up on anything that fell through the cracks. We'll be in a new, significantly more affordable home since we can do with less room (and less stuff) now.
Everything is in motion. The caterpillar goo is actively turning into a butterfly.
I wish I didn't waste so much time trying to help someone who in the end couldn't be helped, by the very nature of their stress-activated mental illness. We would be miles ahead of all this by now if I simply did not have all the stupid love, compassion, and empathy back in September, and made the Order of Protection permanent then. But I needed to try. I needed him well. I needed us back and our family zooming through time and space in a blue box again.
So instead of making it permanent, I dropped it after an extension, as his lawyers negotiated with me to drop it because he was committed to doing a series of actionable things by October 1st…. He did not, but he was in the depressive stage and working on it and it felt like he was back for a little while. Honestly this might be the worst for me. I got a small taste of how we were before…we saw him in there again....only for the mania/psychosis to come roaring back, as it does, without treatment.
I remembered the person he was for the 6 years we were friends and partners, though… how I used to be the luckiest girl in the world, and these boys had the most fun, chill, involved Dad ever....All of the concerts, the magical adventures, laughing until I cried regularly….
It is impossible to comprehend what the hell happened or come to terms with the fact that that person we loved for years, isn't in the same body anymore. The current person is not the one from our dreams and memories.
It's like he died.
He died. An evil twin took his place like in Mexican telenovelas.
It’s too tragic for me to even think about too much yet, or feel the things.
I cannot fall apart any time soon, not until every fire that arose from this all has been extinguished...only then will I realize I have been on fire the entire time, and will finally feel it all before being reborn from the ashes.
The Doctor is not the only one being who regenerates.
I've done it before.
A phoenix is just a bird, until it burns.
