goodnightmoon: Mulder 2 (Default)
It's funny what a rabbit hole my brain is sometimes. A documentary about H. P. Lovecraft leads to a need to rewatch Ice, the X-Files episode, which leads to a rewatch of The Thing, which leads to re-reading The Thing with Beards by Sam J. Miller. And thus I lost my entire Saturday to icebound aliens.

The weekends always go by too fast, and I never get enough done. I did dishes, laundry, and some room organization today, but I need to get so much more done. Instead, aliens and ice.
goodnightmoon: Mulder 2 (Default)
I have failed at being a blogger of any sort. I assume that I have nothing particularly exciting to write about, so why bother? Well, I'm going to try to update way more often, if only for myself, to have an awareness of the passing of time.

Today I had my Western Civ final, and I'm assuming I got a 107 out of 108, because I only half answered one extra credit question. I have my developmental psychology final tomorrow, one open-book final to take online this weekend, and then I'm done with the semester. I might have a B in Sociology, but having spent most of January in a nearly suicidal depression, I suppose losing my 4.0 is a small trade for still being alive.

Holly has been here since last Friday, and we've been having a lovely time doing absolutely nothing. We've talked and talked and slept and eaten a bunch of junk and smoked too many cigarettes, and it's been really perfect. We're going to take the train into Boston on Saturday just to let her see Quincy Market and Harvard Square.
goodnightmoon: Mulder 2 (Default)
  Sometimes I think one of the most difficult things about being transgender is the lack of continuity with the first 30 years of my life. It wasn't just my name and body that changed: everyone in my family responded to me differently, and mostly for the worse. My family was never perfect. Like everyone else, we had our ups and downs. We had drug addicts and a great uncle that while I only met him a couple of times, I understood that the children were never supposed to be alone in a room with him. I grew up in the deep south, and we had teen pregnancies, alcoholism, and my uncle, C.J. He was gay, but he knew he shouldn't be. He tried so hard no to be. He even became a priest to avoid being gay, because he knew he would never be accepted by our family. But it didn't work, he couldn't pray the gay away, and he left the priesthood before taking his final vows. I grew up hearing the things our family members, his own mother, said about him behind his back. I knew that the reaction to me transitioning would be even worse, and I was right. After my mother died, everyone remaining on her side of the family cut off contact with me. This hurt, but I had my own little family to care for, and I pushed it to the back of my mind for as long as I could, though I hated watching my children grow up and knowing they wouldn't have the large extended family I had grown up. Because for better or worse, they had been mine, and that gave me some sense of having a place in the world.  

  Despite us having a huge thing in common, being the rainbow sheep of the family, C.J. and I lost touch too. He struggled with an addiction to pain pills, and what I believe was undiagnosed bipolar disorder. I would get loving emails from him for a few years, then an angry tirade about a slight offense, news about me heard from another family member and he was so offended I hadn't told him first that he broke off contact with me. It wasn't even big news, and I hadn't told the family member; they'd heard it third hand from facebook. But that didn't matter. I didn't have time to worry about his mercurial temperment. I had a terminally ill child to take care of.

  This sense of loss, and lack of continuity, was brought home so painfully when she died. None of my extended family on my mother's side came to her memorial service or even sent a card. When I ceased to exist to them as the girl they had known, my children did as well. I hated them all for that. Though there's an argument to be made that we were all better off not having judgemental, narrow-minded people like that around us, I hated that my children had been cut off form a family that included dozens of cousins all across the country. It never feels good to believe you've been judged and found unworthy, and that's how I felt.

  The last chapter of this story ended on Christmas day, when I learned that C.J. died in November of pancreatic cancer. In November. No one called, emailed, or tagged me in a facebook post to inform me. They are in the wrong, so why does that make me feel so worthless? I want to be worthy of their love, and in their eyes I'm not. My baby sister has never been able to accept my transition, and while she stayed in birthday-and-christmas contact with my children when Cassie was alive, I have ceased to exist since my daughter's death. I feel so unmoored in this world. My story ended at age 30 with my transition, and then again at 41 with the death of my child. Everything since then feels like postscript, and I wish I could say that didn't hurt. But I can't. It does.


 
goodnightmoon: Mulder 2 (Default)
Happy Holidays, everyone. I hope they're great. Mine has been as good as it could be. I have a different rubric for "good" nowdays. I have survived it thus far, so let's call it a win. On Monday we (me and the room mates) had friends over for dinner and that was nice. Then a busy week of work and my last final for this semester. Thursday was the company christmas party, then tonight before leaving for work the household did stockings and presents. I had said earlier in the morning that my diet the last couple of weeks had been awful and I needed to eat something green that wasn't a cookie. I said this as I was eating a green, tree-shaped cookie for breakfast. So Jessica put a bag of brussel sprouts in my stocking. I got some yarn and two books, and a book I had ordered for myself arrived in the mail today, so I am all set in the present department. Now it's nearing the end of my night shift at work, and I've been knitting and listening to audiobook all night. I listened to The Bungalow House by Thomas Ligotti, read by Jon Padgett, whose book I just received in the mail today. Once I get off work I'll be heading to Boston to hang out with a friend and her family for a while. Everyone stay safe, have fun, and be kind to someone who needs it today.

<iframe width="490" height="370" src="http://www.youtube.com/embed/9Fteka44kbY" frameborder="0" allowfullscreen="allowfullscreen" data-link="http://www.youtube.com/watch?v=9Fteka44kbY"></iframe>
goodnightmoon: Mulder 2 (Default)
We had our household yule gathering last night. For those who are new, or not aware, of my household configuration, it looks like this: my housemates are Jessica and Chris, and Jessica's daughter Ari. I have known Jessica for about 15 years and Ari sees me as an uncle. Jessica and Chris are polyamorous, so not living with us, but part of the family, are Monty and Josh, two of Jessica's other partners, and Ruby, Christina and Sonya, Monty's other partners. So we had quite the houseful last night. Jessica and I gave each other the same gift (The Exploding Kittens expansion set), and I got some Bombus socks, so now I'm ready to run to Tanis! They're actually super comfortable. Ari gave me a cat calendar, which was adorable. So for me, yule and christmas are more or less done. I have my last final in a few hours, then I'm out of school until January 23rd. I'm looking forward to reading for fun. I haven't finished a book that wasn't for school work since August. 
goodnightmoon: Mulder 2 (Default)
things I love right now:
Rectify
the Fall
Westworld

Things I am over:
This season of American Horror Story
Arrow

I have no life right now, and that's likely to be the case for the foreseeable future. I work, go to school full time, and that's it. I am awake roughly three hours a day in which I'm not at work or school. But Comic Con is a week from Friday, and I'm going to see Peter Murphy in December, and David Duchovny in February! I don't care to hear him sing, honestly, I just want to see him live, just the once. 
goodnightmoon: Mulder 2 (cassie)
It's a cold, rainy New England day, and there is so much I should be doing. I should be studying, or doing laundry, cleaning my room, studying some more. But no. I'm sitting here knitting and binge-watching Halloween Wars.

  Being back in school full time as well as working a full time job isn't a barrel of laughs. I'm constantly exhausted, and behind, and feel like I'm holding it all together by pure luck. The fact that I have to take accounting is a cruel joke, and I'm come to a place of accepting and forgiving myself if I fail the class, which seems inevitable. I've got a good grade right now, but that's because I've done the homework and got lucky on the first test. But I don't actually understand many of the concepts and don't have the formulas memorized, so there's only so long I can wing it. My other classes I think I'd be doing fine if I just had more time. I never get enough sleep, so I feel like my brain is in slow motion all the time.

  I don't dislike my job at all. if it paid enough to live off of, I don't think I'd even be in school. I could write at night while I was at work, and I'd be as content as I'm capable of being. But I need the student loans to subsidize the end-of-life guide classes that I want to take, which don't offer aid or scholarships. It's a delicate balance of insanity and stupidity, really.
goodnightmoon: Mulder 2 (cassie)
Want to feel old as dirt? Go back to college at 44 years old. Not only do I feel ancient compared to all the kids in their 21 Pilots shirts and Pink brand attire, my memory is completely shot. I am taking account, and anything to do with numbers is already not my forte. I've been sitting up all night watching youtube videos trying to memorize accounting formulas. Add a full time job to the mix, and I expect to crash and burn around Halloween.

But while I'm complaining, I'm also grateful for the chance to go back to school, and to perhaps have a meaningful career at some point. I have to do something that feels meaningful, otherwise why am I here? Not to punch in at Holiday Inn 40 hours a week for the next 30 or so years until I kick the can. Hopefully in two years I will have my funeral associate degree, and go on to work within the death-positive community to empower people to plan the death and memorial that they want, not the one the hospital and funeral industries sell them. 
goodnightmoon: Mulder 2 (cassie)
Hope everyone is enjoying their fourth of July. I am missing my girl tonight, my little firebug who loved the hell out of some fireworks. I wish she could have seen them in New England, cool and breezy, right from our back patio you can see the very impressive display our neighbors are doing.

I started a new job last week, night auditor at a hotel, so that I'm free to go to school during the day. I hope my night owlish tendencies make it easy to learn to function sleeping during the day. I have to get some blackout curtains for my bedroom asap, though. 
goodnightmoon: Mulder 2 (cassie)
I am trying to get into the habit of using LJ again and slowly eschewing facebook. But one thing that's very important to me is the Team Cassie facebook page. So to the four of you that still post here, please feel free to join it! https://www.facebook.com/nekocassie/

Also, we have this new project going, Cassie's Library, to send books on bereavement to EB families. Please like, share, comment, share, buy a book, and oh yeah, share: http://amzn.com/w/2XDTKYNZY7MZ4

Last but not least, I am amused at myself for the strange dichotomy of my favorite show being about a cannibal, but seeing a CGI whale being harpooned in a movie almost made me cry last night. Eating people is okay, other animals is not. 
goodnightmoon: Mulder 2 (cassie)
"if it'll keep my heart soft, break my heart every day."
~Warsan Shire

Today has indeed broken my heart anew. Another child with EB has died, a beautiful little boy named Raul. I could write about how unfair it is, how wrong, and rail at the universe, but to what end? Burying your child is a horror that no one can understand the depth of until they experience it themselves. I know this because for so many years, I witnessed child after child with EB die, and I attended their funerals, hugged their mothers, and I thought I knew. I was wrong, and I'm humbled and brought to my knees by that realization. And today my heart hurts for Raul's mother, who is experiencing that same shock and horror, that no matter how terrible she imagined it would be, it's worse.

Each of these losses bring me back to my own. It's been two years and four months, and part of me is still in that bright white emergency room, watching her take her last breaths, the helpless medical team standing by. I did that. "let her go." I said those words. I did it to spare her pain and fear and surgery and cancer and amputations and I know I did the right thing, but it's such a heavy thing to live with. Some days I can't drag it along with me, and I have to just sit with it and let it crush me a little. Today is one of those days.

It's such a strange place to be, this little bubble world where you have lost a child to the condition that made you a part of a community. For 17 years I relied on the parents and adult survivors with EB, and many of them relied on me too. They become friends, family, mentors, heroes. But after your child is gone, that role, like so many others, changes. You no longer attend the patient conferences or keep up with the latest research, you don't know the newest wound care products or the names of all the regional sales reps for all the wound care companies. You are something both respected and feared; someone who survived EB, but a constant reminder to those other parents that no matter what they do to save their child, they will walk in your shoes someday. You feel a bit like the grim reaper, standing in the shadows, reminding them of what's to come, and try not to feel hurt that they (naturally) need some distance from one more reminder of what this disorder is going to do to their child.

You are no longer the parent. No longer the caregiver. No longer the advocate or expert. You are the harbinger of agony. And it breaks your heart, because for all that you now represent, they still don't know. They can't know. Your life is the boogeyman, the After, and you want to save them, every mother and father who is drowning in this monsterous grief, but you can barely keep your own head above water. So you all flail together, apart.
goodnightmoon: Mulder 2 (cassie)
Where is the long, well written Hannibal fic? I want novel length stories that sound like they could have been future scripts for the show, not AUs where the FBI people work at a bagel shop or AOB fic, which I totally don't get. I don't want single dad Will hires male nanny Hannibal to reign in his fiesty teenager daughter Abigail. I don't want highschool AU. I want fic that feels just like the show, post season 3, and I don't want to wade through Tam Lin AU fic to get there. 
goodnightmoon: Mulder 2 (cassie)
  Thanksgiving of 2013 is the last really significant time that Cassie and I had a special time all to ourselves. We went to our friend Christina's house for Thanksgiving dinner, and listened to Welcome to Nightvale on the way there, and on the way back. We stopped at Walgreens and shopped for toys that we donated to the St. Vincent DePaul shelter. How can she have been gone just seven weeks later?

On a less sad note, I won tickets to see Duncan Sheik and Suzanne Vega in New York Sunday evening. It's an almost 3 hour drive, but it's worth it. I remember driving from Birmingham to Memphis and back in one night just to see Duncan play. Must have been 14 years ago or so. I'm not as moved by music as I used to be. I'm not as moved by many things as I used to be. But I'm looking forward to going. Maybe I can remember how to feel again. 
goodnightmoon: Mulder 2 (cassie)
There are so many things about Cassie that I am afraid I will forget someday. I wish I had videoed every minute of her life. I miss the sound of her voice each morning, calling out a sleepy "hey, I'm up" from her bedroom. I miss making up word mashups to describe things. "A kitten who is snoring and purring at the same time, what's that, slurring? pouring?" I miss her every minute of every day. I don't dream about her as often as I did before and that makes me unbearably sad. 
goodnightmoon: Mulder 2 (cassie)
It's been National Epidermolysis Awareness week this week, and I've been entirely silent, though it has overwhelmed my thoughts and my heart. I've been trying to think of what to say. Do I have anything to add, anything that will be helpful, uplifting, that contributes? I don't know.

Tomorrow is Halloween, which was one of Cassie's favorite holidays. As a cosplayer, and a pagan, she adored the sights and sounds, the makeup, the creating her costume and showing it off to others. And oh my, how she loved candly. She's been gone nearly two years now. Some days I am okay. I think of her every day, nearly every minute of every day, and I don't know if that will ever change. But I do have days where the aching throb of missing her doesn't constrict my chest. I have days where I don't think that I won't make it through the day, living with the thought that I'll never hold her in my arms again. But I still have days where I have those thoughts. Where the longing to touch her one more time is a physical pain, right in the center of my chest, right where her head fit when I put my arms around her. Epidermolysis Bullosa took her away from me. It took so much away from her. This disorder that most people go their entire lives and never know about has consumed my life for nearly 19 years. It consumed my child's body, it curtailed the blaze of her light into a a body that couldn't manifest the pure magnificence of her spirit and imagination. I want her back. I'll spend the rest of my life wanting her back, and I'll spend the rest of my life without her, and when I die it'll be with a glad heart for the hope of seeing her once more.

Epidermolysis Bullosa killed my child, as it has killed hundreds before her, and probably a dozen after her. Many of the young people in her age group who grew up together have reached that window of time when EB starts to take them. We are a community of sorrow. We are a community of parents who watch as our children's bodies betray them and then steal them from us. We are islands of grief, as individual as the affects of EB, floating along, missing a child who will never come back. I am on that island, waiting for her.

goodnightmoon: Mulder 2 (FNL)
And I find myself in a new home, a new city. It's beautiful here and I feel a measure of peace for the first time since January 9th, 2014. This weekend I knitted a hat, bing watched Humans, watched Hannibal, which is so beautiful it hurts my heart, then starting knitting bags to hold my friend's Tara Wisdom cards for Pagan pride day in a couple of weeks. I start work at the Joann's here tomorrow at 5pm, and have an interview for a full time job at a health food store earlier in the day. Busy, Busy. Just wanted to post here because I haven't in so long. 
goodnightmoon: Mulder 2 (Truth)
Life has been pretty weird lately. Weirder than usual. I've made some choices that caused pain to people that I love deeply, and I hate that. But I still think they were the choices I needed to make. I'm not sure what kind of person that makes me. Probably a selfish one. But I feel like I'm trying to fight my way to the surface for air, and the forgivness will have to come later.

I'm working full time now and swamped with that. My two volunteer activities, at Hogwarts camp and at the Contraflow Science Fiction convention are getting busier. I also went to see the Welcome to Nightvale show on Thursday, then saw Amanda Palmer on Saturday. Nightvale was fun, but there is a part where you are supposed to turn to another person and interact with them. I ended up with an empty seat beside me, and during that part, that empty seat wasn't just empty. It was Cassie's seat, and she wasn't there, and I felt like I would give up the rest of my life to have just spent that rest of that show with her in the seat beside me. I cried while Amanda Palmer sang Coin Operated Boy, because it was one of Cassie's favorite songs ever. She loved the Dresden Dolls. I got Amanda to autograph the team Cassie sign, and I thanked her for the moments of happiness she gave my baby girl. Sometimes I feel like I do these things because I have to live for both of us now. I wonder sometimes if I will ever again have a moment of happiness where the happy doesn't just fill in around the girl shaped hole in my heart. And I know I likely won't. But I'm learning to live with that. Very, very slowly. 

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