breakout

On letting go.

06:25


Living your life you for sure see relationships come and go, and for sure I’ve seen my part of that. One thing, that was always the hardest for me, was letting it go.

I would stay in abusive relationships, burnt out friendships, places I didn’t want to be, just because I am oh so afraid of being on my own, and, let’s be honest, my own person.

Being disabled, independency is scary, cause you see so many things you just CAN’T do on your own – so how are you gonna survive? But here’s what I learned. We’re gonna talk friendships, cause my relationships were all too messy and way too abusive to be a good example on that topic, and they’re a thing for a completely separate post. Which will probably come soon, trust my exhibitionist tendencies.

No matter if you’re abled or not, staying in a friendship where something feels off is a bad idea. No matter if it’s them not respecting your pronouns, being lowkey racist or highkey homophobic, or if you just don’t click as you did before, you should do your both a favor and leave. Being disabled, and I’m speaking both physical disability and mental illness to just name few, you definitely shouldn’t stay in a friendship that burnt out. It’s exhausting, trying to save something beyond saving, and being low on spoons you want to avoid exhausting situations.

When I was 18, back in high school, my graduating year, I met a wonderful girl. If It ever came to her reading this post I want her to know she was completely, absolutely lovely, I loved her and I still do. We became best friends, and we would be inseparable. We could laugh and cry together and I knew she would hold me did I fall. We stayed this way three great years, along which I found my gender and sexuality to be completely different from where I started. She got better mental illness wise, I got worse physical health wise. She went to uni, I took a year off. She met new friends, I found whole online community which became like my second family. We started missing out on each other, not having time to meet, her being too busy, me being too tired. I could feel she didn’t understand me now, with my disability, with me wanting to only talk about how gay I was (you know this feeling just after you come out, don’t you?), and I didn’t understand her uni struggles at all.

We tried to save it for almost a year, before we finally decided to let go on amicable terms.

Do I miss her? Like hell. Does she miss me? I am pretty sure she does. But are we better off? Definitely.

Thanks to us letting go I was free to meet new people. I met my two new wonderful best friends who are my family. I got back in touch with my childhood friend. I am lighter now. Happier.

Though at 2am a little bit drunk she’s the one I want to text.

My point here is: being a spoonie, focus on your happiness and your strength. Don’t let burn out friendship hold you back. Let yourself be happy on your own. You deserve that and you don’t deserve to be exhausted trying to save friendship cause world throws slogans about how second chance is important at you. Sure, sometimes it is. But sometimes it’s not worth it.
Mourn them. Cry. Be sad. Sleep too much. Eat comfort food. Cuddle with pets, cuddle with family. Cry some more. Give yourself time. You’ll be so much happier.
And the most important thing: don’t let people tell you mourning friendship is less important than mourning a relationship. Your heart is still broken.

Trust someone, who thought is not gonna make it if she breaks off a friendship. You’ll be okay. You’ll feel so much better. 

And there’s always someone more worth your heart.


asexuality

Answering my favorite ques

05:19

When you’re visibly disabled suddenly your body becomes a public property. For me, it was a shocking stark contrast – from being spotted publicly mostly for my blue hair or colorful tattoos, earning smiles, mostly encouraging or gently amused, I switched to being uncomfortably stared at, to uncomfortable embarrassed half smiles in my direction, to surprised gasps sometimes when I stood up from my chair. Before, I was just a young adult navigating the crowd, now, I became an one person public performance.

My first week on a chair, I cried constantly. I was totally unprepared for what came at me – not only was I really sick, not knowing back then what was it I had, I was in lots of pain – and I became an aim of critique and comments, not EVER nice.

Third day on my chair I went to my psychiatrist, wanting her to adjust my meds as I was getting more anxious than ever, and to tell her update on my diagnosis, that back then was the fact I don’t have brain tumor. Which, unarguably was great news for 21 year old scared shitless she’s dying cause suddenly in a month her legs stopped working like they should. I was hoping to confide my fears in her, hoping that a medical professional can help me in my really hard place.

What I got was more critique. I was told I am worse by being on a wheelchair and I should do everything I can to walk and not be like “those people”. The thing was, I was already those people, I was a disabled person. Too bewildered to fight for respect, I just sat there, and that was when the question was asked. My now favorite question, the question that made the idea about this blog be born, the question that changed my approach to disability.

“But if you’re on a wheelchair then how are you gonna have sex?”

Because I didn’t answer then, I am gonna answer now.

When people ask me about my sex life, that is ableist as hell – because you wouldn’t ask abled person how they have sex, right? You wouldn’t doubt they CAN have sex. But you ask me, just because some parts of my body are working differently than yours.
When strangers, or friends, ask me that, my answers vary from straightforward “fuck you” to “why, are you interested?”, cause as we already stated I am an angry bitter person.

But to be serious for a while here.
Disabled people have sex just like any other people. We can be gay, straight, ace, trans, you name it we have it. I am a sex positive panromatic asexual. What does it mean? I do not feel sexual attraction to ANYONE, but sex is fun so I’m willing to have it, with EVERYONE.
I am open to one night stands and I am open to relationship sex. I am kinky as hell and I masturbate a lot. All that my illness changes is that I am in pain, and parts of my body are fragile. That is all. Everything works down there if you were wondering.
I’m telling my own story as I don’t have rights to anyone else’s, so hear me out: I am a very sexual person despite being disabled. And most of us are. Wheelchair people have LOTS of sex. If you are attracted to the person on a wheelchair GO FOR IT. Ask them about details, and they’ll tell you, and you’ll make it works. It’s that easy.

We are PEOPLE, guys. We’re not some ethereal beings unable and unwilling to have sex. We’re just people.

So, answering my favorite question. How am I gonna have sex? HOWEVER I FUCKING PLEASE.

What we need here is awareness. More open speaking about sex. Ending of slut shaming and ending of desexualization of disabled people. Because people WILL wonder how we do it until they are well informed. So we need to inform them. But it is in no means our responsibility to make them understand. They will or they won’t. But they need to KNOW.

This being said, if you’re low on spoons, tired, or just fucking pissed, the “go fuck yourself” answer is well suitable as well. You take care of yourself and your needs cause spoonie life is SO GODDAMN HARD, you don’t need to waste spoons on ableist if you don’t want to.

I will waste mine, cause I am mad and I want change. I want change for my future kids, for my sister who was shamed out of accepting her disablility, for my friends who suffer with me, for strangers who have shitty life. For me.


I hope it was informative enough. If you still have questions, hit me up or just google “disabled sex”. We live in wonderful world where google has an answer for everything, you know.

Meet Alex.

14:50

I was hesitating a lot before I got to writing this. I tried blogging so many times and besides Tumblr it never lasted more than couple of posts. I’m not the most reliable person out there you see. And I thought that I have nothing to say.

But that’s not true. I have lots to say. And I am very angry. Maybe it’s true the tiniest people are most angry ones.

I am gonna talk about life with a chronic illness and disability, just that, just my struggles and thoughts, as I have a lot of both. I talked about it a lot on both Tumblr and Vent app, but I decided no, I need more, I need more people to see what I have to say, cause world needs a massive change. And we’re not gonna be that change if we keep silent.

I am 21 years old from Poland, diagnosed with EDS (Ehlers-Danlos Syndrome) or similar collagen deficiency syndrome a week ago. I went through 7 years of living in terrible pain and being undiagnosed cause world kept telling me my pain is not real. But it is real, and now I have a proof for that, and with that proof I can be even more vicious when fighting for myself and all spoonies here.

I have minimal hypermobility in my joints – I keep twisting my ankles and wrists but nothing besides that. My joints and back hurt a lot, my skin is paper thin, my wounds won’t heal and my scars get keloid. And lots more, but I’m not here to tell you about my symptoms, let’s save it for the doctor’s office.

What is important: my name is Alex, I am a tiny genderfluid girl with blue hair and blue wheelchair.
I jumped from having invisible disability since I was born to very visible one when walking got too hard. Sometimes I use crutches and you’re probably gonna catch me clicking my wrists and fingers a lot. I know, the sound is terrible. 
I am an art student who had to go on a leave due to inaccessibility and bad attitude towards disabled people at my uni. I am a writer, I complain a lot, I whine a lot, I am mad a lot. I have psychotic Borderline Personality Disorder, depression and Generalized Anxiety Disorder. I’m a mess, but I am an outspoken mess.

What being on a wheelchair taught me – people will be mean. From ones telling me that I should walk since I am not paralyzed, ones who would ask me about my sex life as I was obligated to tell them every detail, to ones who will out loud say they don’t like disabled people and would like me to stop. Stop being disabled. Seriously. I heard that.
Hence the name of this blog, as a tribute to all ableists who asked me my favorite question: “but if you’re on a wheelchair then how are you gonna have sex?”. Thank you. Honest thanks for inspiring me to starting talking more, not just talking back.

I hope this posts, this blog, will at least open some people’s eyes, and this blog to be a place where my fellow spoonies can feel safe.
Enjoy.