My sister’s words cut me to the bone.
“Well how do you think he feels? A grown child, almost 40, who can’t take care of themself? Of course he’s frustrated! It’s embarrassing.”
“Well,” she said later in the call, as we talked about how long I was going to be able to keep an apartment that is well below market, safe, warm, and has given me an enormous amount of autonomy since I moved here, “Enjoy it while you can …. You’re going to end up in a group home anyway“.
This is how my family sees me. And yeah, it hurts a lot.
It used to sting before my diagnosis when I just thought they were all right and I was just a f*ck up. They were right of course, I thought…. back then. What the heck was wrong with me? Why was I such a loser? Why couldn’t I get my sh*t together?
Now? Now that they know about my diagnosis? Now that they know that I am just built differently? Now that they can look back and see the tell-tale signs for what they were? Now that they know what to call it? Now that all the information about those statistics for people on the spectrum are out there and only a Google search away for them? Now that – I hope at least – they can empathize?
But I never see that. The sense I get from what they say and what they do is, no, they don’t. And it really stings (even more than before) and gives what self esteem I do have a beating.
As far as they’re concerned (as my sister put it in that last phone call), “You can either be disabled, or you can be capable. You can’t expect me to believe both“. And what they all choose to “believe”, to see, is disabled. They haven’t actually changed their view on me at all. It used to be worthless f-up. Now it’s worthless r-word.
A dead albatross around their necks.
A damper on their lives.
A suck on their share of the inheritance one day.
But I’m not worthless. I’m not useless. I’m not just disabled. I’m not the r-word.
I have worth.
I am kind.
I am smart.
I am creative.
And contrary to what I was told my whole life I actually am pretty, and I am talented at all sorts of things!
I am exceptionally hard working.
I am industrious.
I am handy. I am really good at fixing things and jury-rigging things I need together.
I am really talented on the computer. Programming. Graphics. Web Development. SEO. You name it, I’ve been doing it for 20 years now and I’m good.
I am really good at fixing and building them too.
I am a solid photographer, though I need to go out and take more photos (crippling anxiety is the one thing that really gets in my way there … right now).
I am good at creating systems and bringing chaos to heel.
I am a really good baker.
I am a fantastic cook too!
I used to be a really good artist, and I’m working on getting back there again.
I make amazing soap.
I don’t give up.
I don’t lie down.
I am tenacious.
I will always find a way to get back up and try again.
Or at least, despite the horrors I’ve survived, I haven’t lain down and given up yet!
I am giving. Sometimes more than I can afford to be.
I am a good friend. Or so people tell me. I try to be at least?
I try to look after the people I care about, in whatever little ways I can.
I am a really good and loving Cat Momma.
I am loyal.
I am patient.
I love people unconditionally. Even when they don’t deserve it. That last part is a problem but I’d rather have a heart full of love than a life empty of it.
I am forgiving. Probably more than I should be according to my Psychologist.
I have faith in people. Though sometimes too much.
I love making people happy. Sometimes the wrong people, sure, but if they hurt me or use me I have to think that’s on them, and not me. One bad person doesn’t stop me from trying to bring happiness into the life of the next person though.
And I have worth.
I have to remind myself of that a lot of the time. When people say things like my sister does to me. Because sometimes the things you can’t do and the things you can’t be are all people bother to see. And when all they bring up is the fact that you can’t do this and you can’t do that and you’re in your 30s and their still waiting for grandkids, and you can’t hold down a basic entry level job, and you’re such a loser…. you’ll end up in a group home anyway …. it tears you down. It makes it that much harder for you to succeed at even the things you can. It makes it harder for you to see that those things even exist.
All you end up seeing is the things they mention. The things you can’t be and can’t do. The things that causes long pauses in conversations. The things they hold against you. That make you “less than” in their minds. The f-up. The r-word. And you don’t see your worth. I’m trying to learn to see beyond that with Dr P, but I’ll be the first to admit it’s hard.
In the end though, I want to prove that I can be a success. Insofar as what a success for me is. Success for me can’t be holding down a 60 hour a week job and climbing up the ranks to the corner office. It can’t be turning Hazel & Crocus into a multi-million dollar cosmetics company that I can sell to L’Oreal and retire from. It can’t be getting married again and have a passel of kids before I get too old.
These aren’t successes for me, and yet they often feel like they’re the bar I’m expected to try and pass. If people hold me to these dreams and expectations I’ll never have worth in their eyes. I’ll always fail. If I hold myself to these standards, I’ll never have any worth in my own either.
Success has to be something different for me. I’m still trying to hammer that one into my head to be honest. The programming is strong and hard to, but I’m trying to find what worth, and success, mean to me.
Success for me is having a day where I don’t fall into a wall, or cut myself.
Success for me is being able to make those phone calls I know I need to, without turning into a shivering mess by the end.
Success for me is making a kick-ass batch of soap, or even a dozen bath bombs, and being really proud of the final product.
Success for me is writing something great, or drawing something that I’m proud of.
Success for me is remembering to feed the cats 3 times, myself at least two proper square meals, and taking my pills. Bonus if I also have a shower and put my face on.
Success for me is working through the constant physical pain I’m in thanks to my physical limitations and doing my 30 minutes on the treadmill.
Success for me is going out and interacting with people, successfully.
Success for me is doing everything on the white board, everything on my to-do list, and staying on schedule.
Success for me is getting most of the things on that list done, and not beating myself up for the things I wasn’t able to do (there’s always tomorrow!).
Success for me is having a spanner thrown in the works of my schedule, and STILL being able to find my footing afterwards and recover instead of losing days because of it.
Success for me is catching a meltdown or a slip into dissociation and stopping it before it hits. Or catching it and reeling myself back in quickly, without losing days to it.
Success for me is getting off EIA-D and finding a way to make enough. Not for a fancy life, or even a comfortable one; but just enough.
Success for me is not ending up homeless, again.
The trick, I’m trying to teach myself, is to find the success and the worth in the things I actually can do. One day, and one day at a time. With help and support. Because I can do those things. I have the guts and the heart and the brains and the work ethic to do them. I have what it takes, and I am worthy of it!
I just need a little extra time. A little extra support. I need them to believe I can do it. To believe I’m worth it. And that, I think, is the biggest hurdle.
But I can do it.
With proper support.
Just give me a chance.