Interstate Independence
“You need to be realistic.”
People always tell me that when I talk about transferring to a school outside of San Diego. Every time it pisses me off. They keep listing the reasons why I can’t live alone in another city, like that I need 24 hour nursing assistance and what if one of them calls in sick? What If this and What About that? Like I haven’t considered all these possibilities. My sister lectures me about it all the time.
“You can’t go to UCLA. It’s too far. If something happens to you, we can’t get there fast enough. What happens if a nurse calls in sick and there’s no one to take care of you?”
“You think I haven’t thought about any of that? I’ll have a back-up living there, someone like Nick, and who knows who else I might meet, or what other services might be available through the school.”
“Yeah, but why can’t you go to UCSD or SDSU? It’s easier because we can help you and you’ve already got one nurse in me.”
“Yes, but I don’t want to stay here. I don’t like it here.”
“Why not?” she asked.
“I don’t know,” I said. “I just don’t.” The truth is that I’m not sure. I don’t want to be here. I want to be away from everyone I know. I want to start over. As long as I have a safety net, I’ll never know… me. I’ll never know what I’m made of; whether or not I can survive outside of the status quo. I talk a lot, but anyone can talk. It’s time to walk the walk. I don’t want to be one of those disabled people that never move out of their parents’ house. They stay there until their parents die from taking care of them and then they go live in a group home until they die. That’s not a life. What did they contribute to the world? My life won’t be that way. I won’t let it be that way. I won’t fail.
“Why not go to UCI? I went there, it’s a beautiful school.”
“I don’t want to. It’s not my first choice.”
“But they’re known for computer science. All my friends that went there went for that. UCLA doesn’t specialize in anything.” She pleaded.
“Why do you care?”
She went silent. I don’t know why they push so hard. I don’t get it. They don’t want me to go out on my own. Or they do, but as long as I stay here in San Diego. Why? Is it just because they’re worried about me? It doesn’t feel like it. I mean, I’m sure that’s part of it, but it’s not the whole story. Don’t get me wrong, I understand that they’ve been conditioned to show concern over the years, and I appreciate the sentiment but I’m an adult now.
They’re not supporting me. I want them to take into consideration my entire well-being, both physically and mentally. They don’t think I can do it. I’ve always thought that they thought that I could do anything, and now, when I really want to test myself, they don’t. This will be hard enough without their support. I know that there’s a good chance I won’t be able to do it. I know that even if I succeed, it will be hard. I’ll have lots of setbacks. But I need to do this.
Fuck being realistic. If I listened every time someone told me I couldn’t do something, I would never get anywhere. I would not be here. Fuck the haters, except this time the haters are the people who aren’t supposed to hate: the people I love.
That doesn’t matter, though. I won’t let it. You know what I’m what going to do? I’ll prove them wrong – go out there and prove them wrong. They have no idea what I’m capable of, but they’ll see. I’ll show them.
July 16, 2009 at 11:05 am
Great post Hotwheelz.
The contradiction between being unable to let go despite pushing you to be all you can be is explainable – you are provoking a crisis of identity.
I’ve spent the last four years working with children and adults with autism. Clearly its a mental disability rather than a physical one like MD, but especially in children there are similar needs in terms of circles of support and advocacy for services. What you quite often see are parents or family members who on a personal level deal with the presence of a disability by anointing themselves the task of being the savior, forgoing their own lives to create a new identity centered around their child or sibling.
To one degree or another of course. When it becomes time to let go there is resistance because the parent/sibiling no longer knows another way to exist in the world if its not for the purpose of being that support. Think Brett Farve struggling to hang up his cleats because he doesn’t know anything else but to be the Packers quarterback.
As far as setting out on your own, you’re fortunate to be in California where there is a wealth of services mandated by law. For example I now work case managing at a supported living agency, where our clients with developmental disabilities have 24/7 staff to assist them in living a live they choose, independently in their own homes. So look into your options – one place to definitely explore is getting enrolled in IHSS (In-Home Supportive Services) which can provide you with meal prep, cleaning, laundry, etc.
This is completely doable for you and its sounds like you are ready to take the next step towards independence.
July 16, 2009 at 5:57 pm
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July 17, 2009 at 7:17 am
Sounds like a tough gig for everyone. Not that it matters but in my opinion if you really want to go you should definitely go. I’ve come to realize people just about never sit around regretting the things that they actually did no matter how stupid or destructive. The things they wanted to do and didn’t do however is a whole different kettle of fish. Like people say – (non-re-incarnation folks anyway) we only get one shot at this life so you at least better try to make it the one you want. Good luck and god bless. You’re a brave soul.
July 21, 2009 at 7:37 am
You could move out but stay in San Diego, you know.
Compromise. It’s as important to adulthood as gray hair and talk radio.