{let’s Keep Trying} {we’ll Get Through This}

This makes me really happy. I hope I can be that for someone.

oh by the way!! yesterday morning i saw someone my age walking with a cane while i was going to school. it was the first time and it was really quite exciting!

i haven't really needed my cane in a while now but seeing other young people using one really makes me feel less alone <3

this is your reminder that if you are young and going out in public with a mobility aid there probably will be some seemingly able-bodied kid watching you and feeling less alone. and just maybe they might try taking their aid outside, someday.

the only life advice i feel equipped to give:

when you’re young u can only romanticize your pain and hurt for so long. one day you’re going to realize u have to stop sabotaging yourself by assuming your hurt is all that makes you. you have to consider all your good qualities. that u are a bright and creative person who might’ve been dealt a bad hand, and all u can control is how you treat yourself. you have to be kind to yourself to survive. you have to let go of that impulse to treat yourself poorly because u think u deserve it. forgive yourself for whatever makes you feel like you don’t deserve the same love and care as everyone else. please.

It’s the not knowing when it’ll stop. The unpredictability. Wondering “will this ever get any better?” It’s the people close to you just accepting that this is how you are now. It’s the 24/7 nature of it all. It’s the not having a choice. It’s the not having a break from it. It’s the people around you thinking you chose this. As if you enjoy it. As if you actually chose this life. Nobody would ever choose this. It’s the having to play symptoms down. It’s having to pretend it isn’t as bad as what it is. It’s having people judge you, even the people closest to you. It’s having to live with symptoms that most people wouldn’t know how to even begin to cope with. It’s a lack of self confidence and self purpose. It’s staying hopeful when it doesn’t seem like there’s anything to be hopeful for. It’s a lot of things.

You might not feel it, but you’re one of the strongest people EVER. You put up an invisible fight daily. You do all that you can. You often survive second to second, minute to minute, hour to hour. You get through the day. You do your best no matter what obstacles are in your way. And it’s important to remember that even on the really bad days that you’re amazing. You’re strong. You’re tough. You’re fabulous. Lots of love xxxxxx

"Are you good in bed?" No, I can't sleep.

This is so important! I genuinely don't know if I can ever truly forgive my parents

dear parents, if your child has "seemed fine this entire time" but is now seeking out diagnoses, mobility aids, medical help, more doctors, and is sharing their pain more. do not fucking shut them down? even if it ends up being nothing, showing them that support through all of that will seriously help them. if it ends up being something and you're a bitch to them, the joke will be on you and that strain on your relationship will never go away because. you didn't listen.

listen to kids. we tell you what we need, it's not that hard.

Just made an account on Medium so I could read this. Made it about 1/3 through and I'm absolutely hooked and excited to finish it!! But first, time for a nap.

For the longest time, I have had trouble understanding FND - specifically whether it's just a shitty diagnosis made up by the medical system to gaslight people or if it's a genuine medical condition. This essay is rly helpful and has already broadened my understanding. It's incredibly well written, particularly bc of the extremely thorough research it's a result of

Medium

Cadenza for Fractured Consciousness

A Personal History of the World’s Most Misunderstood Illness

I am one of the most medically examined people in North America. For over a decade, no one could explain why I lost my ability to walk, speak, and use my hands. Why the lightning-like headaches? Why the ringing in my ears? Test after test came back negative. Doctors thought I might have a genetic abnormality no one's ever seen before, or a condition so rare that it had previously escaped medical classification. Then I got accepted to the top undiagnosed disease research program in the world, and they told me the only diagnosis I was unprepared to hear: it was Functional Neurological Disorder (FND), a much-misunderstood condition which was once known as Conversion Disorder, and before that, as Hysteria. And that was only the beginning of things getting weird. The essay above is the product of three years of research into the history, neuroscience, and politics of FND. It touches on the many medical failures that define the history of the disorder, the pervasive sexism and lazy mind-body dualism that prevented scholars from seeing it clearly, and why - finally - a better understanding may be at hand, with revolutionary implications for how we understand human consciousness and the experience of having a body.

FND fucked my life up. This is my reply. Thanks for reading.

I love spoon theory bc you can literally explain it exactly the same way it was originally explained, with actual spoons.

But also I feel like the failing phone battery is more accurate lately.

Like, you charge it all night, but it only slow charges. It never gets to full battery anymore.

When it says full battery, it doesn't mean the same as everyone else's, because it'll be gone twice as fast.

You have to limit your app usage bc of the battery drain, and even when you aren't doing anything the percentage is slowly going down.

Keeping it plugged in full time to charge means you can use your apps longer, but since it's slow charging it'll eventually reach 0 even when plugged in.

Keeping it plugged in full time also means the battery gets reliant on being constantly plugged in.

Actual percentages are a lie.

That shit will turn off with 5-10% battery still showing and there's nothing you can do about it.

Went on a date and they were like "I'm sorry you're disabled". My first thought was to get frustrated or feel patronised, but, that doesn't get us anywhere. So i thought about it and tempered my reaction, and what I came to was this: they're sad, but I'm not!

I understand the impulse to feel bad about my life situation. I get it. It sucks. Like objectively. It bums me out too sometimes.

But im not sorry I'm disabled, I'm happy I'm alive! Im happy with disability, not in spite of it. It's a part of my life. I can no more be miserable about my disability than I can be about getting a bad haircut. It's a part of me and I can either live with it, or I can suffer. If those are my options i choose live with it. Its really that simple and drastic.

Disability means pain, yes, but pain does not mean suffering. I am in pain every day of my life, but I do not suffer. How does that work? I live my life. I live! Isn't that wonderful? I am alive and I have a good, privileged life! I have friends. I have community. I have family. I have passions. So long as i can find the good, I am not focused on my pain, and if i am not focused on my pain it cannot consume me, and if it cannot consume me then I cannot suffer.

My disability is just another thing that is part of me. I don't look at what I can't do. I look at what I want to do, and I find a way to get there.

My life looks different from an able bodied person's life. It just does, and it always will. It's going to be different. I can either embrace it, or I can be miserable. I can either live with it or i can suffer.

I choose to embrace it. I choose to live with it.

It wasn't easy to do so, don't get me wrong. I was miserable for such a long time. I wanted to die; I wanted to die so badly. I thought there was no worth in my life and that I'd never be worth anything. But that's not true.

My life is beautiful. It's not exactly what i wanted for myself, and yeah, if i could wave a magic wand and be in a perfect body... I wouldnt even hesitate to take that option. But that's not gonna happen. So i look at what I have, and I'm so grateful to have it in the first place.

I could be so much worse off. Im fortunate. Im lucky. Im an immigrant success story. I live in a better land. Im happy here. Im well integrated. This place is my home. My country looks after me. I dont want for food. I dont want for shelter. Thats amazing. So if I can look at the little things that im grateful for and build from there...

I dont have all the abilities i want. I will never have everything I want, no matter how simple it may seem. So instead, I will be grateful for what I do have.

Im not sorry i'm im a wheelchair! Im happy! How many people in the world dont have a wheelchair who need one? Im fortunate to have one. My wheelchair is freedom. My world opened up when i got my wheelchair the same way it did when i got my licence.

My life may be sad to you, but its not sad to me. And if its not sad to me, then its not sad! You dont have to feel sad for someones disability. I think its natural to want them to be able to do the same things you can, or to achieve the same things you can. I think you should foster that desire into finding ways to help bridge the gap between what someone can do and what they cant. Access is how you bridge that gap.

Feeling sad for someone with disability is a natural empathetic response. I think its wrong to shame people for it, but it is worth it to redirect their thinking. They are sad for me, but its because they can only see limits. But disability isnt about seeing limits, its about finding out how to move past them.

My life might look sad to you, but you dont know what i can do. You dont know how far ive come. You dont know what my life looks like beyond my disability because you've never been shown that. Its not a story thats told. And i dont mind showing you that theres more to my story than what i cant do.

So, i dont mind if someone tells me theyre sorry im in a wheelchair. Im not. Lets get past that impulse of empathy, and have a real conversation. Because you'll see that i'm not sad. I have a rich life and im happy. Once you can see all that joy, the wheelchair becomes secondary. Of course i'm happy, my life is good.

The wheelchair. The disability. Its set dressing. Its the stage my life takes place on. We cant ignore it. Its there. But it is not so big that it robs goodness from my world.

Am I happy about having my disability? No. But I'm not sad about it. Not anymore.

And that is going to be true about any other disabled person you meet. We dont need pity, because our lives dont warrant it. We dont need you to feel bad for us, because there is no need to feel bad. Its just life. Thats how it goes sometimes.

Once a disabled person's hit the acceptance stage, there's really no need to offer them your sympathies anymore. Be happy with them in their life, however that looks.

Can't believe it took me 8 years to realise that the random pain I get in half of my face for a couple of days to a week every other month is a migraine...

I always thought it didn't matter bc it's not every day like my fibro pain