books, reading, book blog, life, queer, lgbtq, lgbtqia, queer books, lgbtq+, lgbtqia+, horror, horror books, disabled, disability, vacterl, vater, vacterl association

I’ve been called brave a lot in my life. I’ve been called brave lately for starting T, starting medical transition because I am a trans man.

Other reasons i’ve been called brave: I was born with VACteRL Association (It’s an acronym, there is a reason it’s capitalized like that) aka i’m a medical mess. I even got shit wrong with me that don’t fit into vacterl. I was born disabled and in chronic pain and I will die that way. I do not know what a minute without pain is like or what it’s like to be abled.

I’m bisexual and a nonbinary trans man surrounded by people who think that’s a sin, living in a world that wants people like me dead. In particular the trans part.

I’m also surrounded by people who think me being Wiccan is demonic.

I had to recently stop talking to my dad because he refuses to accept me as Tyler, his son.

I’m autistic and have adhd and did not know this until my 30s. I also have anxiety, depression, and ptsd (for multiple reasons, both simple and complex).

I’ve been abused from multiple people. I’ve been used. I’ve been raped. I’ve been in situations where I should be dead.

Hell that last part is my entire life. I was born with vacterl association because of lead where my mom worked, a glass factory, when she was pregnant with me. They tested their employees lead levels once a year (i’m 34 so this was the 80s btw) and it came up when she was 2-3 months pregnant with me. The doctors tested hers and mine. They said she should have been dead or at least a vegetable, and I, or the fetus that became me, should have been a miscarriage. Logically, it makes no sense that I am here. My mom quit working there immediately upon learning that. But it didn’t stop there. There are other situations in my life where I shouldn’t be alive ranging from an abusive boyfriend to a house fire I was in. I was saved by my neighbor with a ladder.

Statistically, people like me often unalive themselves, and i’ve had thoughts of doing just that for over 20 years now. Physically disabled, neurodivergent, queer and trans, mental health issues … I wonder what the statistics would say about me.

Prior to starting T just last month I know that’s where I was headed. I realized I had 2 options. 1 Attempt to be myself, transition, try to live as a trans man, as who I am or 2 suicide. This is me trying to live.

I became a widow in my early 30s. Jan 17th, 2021 my mommom died, during a time me and my husband were moving into our own home and I was also learning i’m autistic, and we moved in late January and February 16th, my husband died. My husband and my mommom were the 2 people in my life who I knew loved me and accepted me as I am. I don’t think my mommom “got” it, but she accepted me. She called me Tyler. I had come out as nonbinary at 30 and socially asked people to use my name Tyler. I talked to my husband about wanting to transition (but medical reasons and disability delayed me starting) and he supported me. Now … I just started a month ago and he’s not here with me. As excited as I am about transitioning … it’s bittersweet. I really, really wish he was here with me. I know he’d be proud of me. I know he’d want me to be happy.

So … after that brief story of my life … how do I feel about being called brave?

Well, I finally know it’s true. I am brave. To go through all that, and to continue to, every single day. To still be here, to still breathe, to exist. Just existing as someone like me is brave. It shouldn’t be, but it is.

I know it’s true. And I appreciate that it’s seen by people. That all this bravery isn’t invisible. Because it’s fucking hard and it hurts. So yea, I know it’s true and I appreciate it when people call me brave … but … yes, there’s a but. But I shouldn’t have to be. I shouldn’t have to be this brave. I shouldn’t have to be brave just to exist. It’s exhausting and it’s painful and no one should have to be brave like this, just to exist as themselves, as myself. Brave just to breathe. I should have a right to exist peacefully as me.

I know i’m far from alone in this. Having to be brave just to exist. If you relate to having to be brave just to exist, you aren’t alone. You shouldn’t have to go through this. This world is deeply fucked up, and I will never fully wrap my head around why. I like to believe I see a glimmer of hope for the future though…

So no, i’m not offended, I know i’m brave and I appreciate it, but what other choice do I have? It’s be brave … or die.

And I don’t want to die without at least trying to be myself. I’d seriously regret not even trying.

I don’t want to die before legally changing my name (i’m currently working on it).

I don’t want to die without trying to actually live.

You can say i’m brave, but i’ll just think, “Yes, but what other choice do I have?”

https://linktr.ee/Wickedjr

The last part!

A wonderful horror novel! Tackles grief and sexism. Loved the characters and depth and creepy atmosphere.

The Lady’s Guide to Celestial Mechanics by Olivia Waite

A F/F historical fiction romance. My initial review …

I freaking loved this! I adored the characters, especially Lucy. A very strong woman who knows what she wants and doesn’t take crap. Don’t get me wrong, she has her insecurities for sure, but she still has a strength within her than shines. Catherine has been hurt in the past and is very insecure in the beginning despite having the countess act down in public. She hides it well but she’s hurting. I loved her character arc and seeing her grow stronger. Both women have their own interests and personalities that I really enjoyed getting to see. Both are interesting characters that I loved in their own rights. I also felt for Catherine with what she had been through and some stuff rang quite true for me too.

A beautiful sapphic historical romance.

Bodymap by Leah Lakshmi Piepzna-Samarasinha

Poetry about being a queer disabled femme of color. Raw, emotional, heart-breaking, thought-provoking, beautiful. I related to some of it, being queer, afab, and disabled myself.

Romantic Outlaws: The Extraordinary Lives of Mary Wollstonecraft & Mary Shelley by Charlotte Gordon

Wonderful biography on Mary Shelley and her mother Mary Wollstonecraft! Told in alternating chapters it came together really well and I learned so much about them. Amazing women! Amazing, and humanized.

A latino gay trans man (also a chef) and a undocumented immigrant from Russia (forced out of Russia) who is half-blind, Jewish and gay. Age gap. M/M Chanukah HEA romance.

Hard-hitting, fantasy, packs a powerful punch, educational to boot. It has themes of being oneself, of being a part of a group and having a group history, of kinship, trauma, climate change. I’m sure there is even stuff I missed. It has powerful messages wrapped in a fantasy story with merfolk

A ghost story that’s not quite a ghost story. Very creepy, the writing flows, strong atmosphere, loved the characters. Easy to read while being complex.

Rare and Resilient – ONE in 5000 Anthology by Greg Ryan

Here is my entire review because I can’t figure out how to shorten it.

I was born with imperforate anus (IA) AKA no butt hole. Like one in 5000 people around the world. Yes, it’s real. There is no cure as it causes other life long issues, even after surgery. I have always been and always will be incontinent. I used to do enemas/malone, currently have a colostomy (again, had one as a baby). I also have other issues related to VACteRL Association (used to be called VAteR Syndrome) as many of us born with IA/ARM do (but not all. And ARM stands for anorectal malformation). It’s not laziness. It’s an invisible disability that causes pain, trauma, medical procedures, doctor visits, surgeries etc. Each person with IA can have a different story. Some have more issues, some have less. What works for one person, might not work for the next.

It also causes a lot of shame. And growing up when I did, the internet barely existed and as a teen I had internet but it was dial up and certainly not like it is now. Now we have facebook groups and ways to talk to others in the same boat, which is amazing, but I and many others didn’t have that growing up (and some still don’t depending on where they live/their situation) so we literally felt completely alone, like no one understood, because it’s so rare. I’m in my 30s and to my knowledge , i’ve never met anyone else with vacterl or IA/ARM. Though it is an invisible disability, so who knows, I might have.

The shame and stigma need to end, but it’s going to be hard getting there as these issues are so taboo. There needs to be more awareness and understanding. Something Greg Ryan and the one in 5000 foundation are working towards.

It is so wonderful, on one hand, to read these stories, to see myself in so much of them, to know there are others out there who understand, going through the same things. Feeling all alone is the absolute worst. But on the other, it’s a double edged sword, as I would NEVER wish these issues on anyone. No, not even my worst enemy. After that though I must mention there is also plenty of hope in these pages. Also plenty of emotion and it is heart-wrenching.

I’m beginning to see just how strong I am. But … can I please get a break?

Btw, it’s also on KU.

The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me by Keah Brown

This book is a memoir/essays by a black disabled woman with so much honesty, truth and power in the pages! Honestly I wish I knew how to describe it, but all I can say is the affect it had on me, an afab (nonbinary) disabled person. I don’t know what it’s like to be black, i’m white. I learned a lot from this book, from where I didn’t relate personally but also from where I did, with being disabled (though with different medical issues) as well as the talk about depression and suicidal ideation.

It showed me that though i’ve already been working on having disability pride and unlearning internalized ableism, as someone who has also been disabled my entire life and always will be, I still have a lot more to learn/unlearn. Some of it felt like a much needed punch to the gut! It wasn’t easy to hear some of it, but I know I needed it.

This was incredibly emotional for me, and some of it i’m just like “how do I get there?”. I’m still working on a lot of things, but life is a journey and as long as i’m working on it, that’s what matters.

As a deformed trans person myself this hit so many feels! The feelings of dysphoria, of being fetishized, of being looked at like a freak, of feeling like a freak. The way people treat you. I loved Isa. I want to gush about this book but i’m at a loss for words. I read it on KU and had to buy myself a physical copy.

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Tag: vacterl association

My feelings on being called Brave

10 Books that define my reading taste Part 5