Epilepsy Rant and Other Thoughts
Sep. 11th, 2006 10:19 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
hiddenmuseDear Epilepsy Foundation of Northern California:
If you're going to have events about living with epilepsy (e.g.; The Living With Epilepsy conference at Stanford University), how about providing some information on mass transit options for those of us epileptics that can't/ don't drive? I'd love to attend ... but I'm not going to leave my house at 4 a.m., just to get 90% of the way to the conference that starts at 8 a.m.
Yeah, yeah ... it's convenient for you, because your office is located in that area ... but quite inconvenient for the people that you are supposed to be helping, dammit!
Same goes for that Stroll For Epilepsy. I'd love to do that - but again, totally inaccessible for someone that prefers to not endanger others by putting her epileptic self behind the wheel of a car.
Fuckers.
No Love,
Carly
Speaking of epilepsy, I'm kind of glad that I'd made the decision to not drive ... I was perilously close to 6 months seizure-free, only to have one on Saturday. A minor one, but a seizure all the same. As I've probably mentioned before, that decision (no driving) was a very hard one for me - especially when I lived in St. Louis, which tends to be a rather car-dependent town. Thankfully, San Francisco is more transit-friendly, and I do have more of a sense of independence here.
Do I wish that I could drive? Yes, sometimes I do - I'd love to be able to putter around town on a Vespa, or experience the freedom of driving a car. But, I know that I'd be putting myself and others at risk - something I'd known long before I became an Insurance Geek. And I can't bear to have my conscience weighed down with the knowledge that I caused a major accident out of my (perceived) selfishness and stubborn-ness.
Finally, the doctors and other people within the Epilepsy community that refer to people such as myself as "people with epilepsy" ... I want to just slug them. I am epileptic. It took me half my life to own up to that, to accept that as my reality - and I don't need and/or want someone to come along and try to be all PC about my epilepsy. Don't kiss my ass, be apologetic about my "disorder", or treat me with kid gloves because I have to take three different medications to keep my seizures under control. Just treat me like a human being - make the epilepsy something that is secondary, or tertiary, about me. File it behind "slightly nerdy and geeky"; "small-time country music fan"; whatever. The condition is there - but does not define me.
If you're going to have events about living with epilepsy (e.g.; The Living With Epilepsy conference at Stanford University), how about providing some information on mass transit options for those of us epileptics that can't/ don't drive? I'd love to attend ... but I'm not going to leave my house at 4 a.m., just to get 90% of the way to the conference that starts at 8 a.m.
Yeah, yeah ... it's convenient for you, because your office is located in that area ... but quite inconvenient for the people that you are supposed to be helping, dammit!
Same goes for that Stroll For Epilepsy. I'd love to do that - but again, totally inaccessible for someone that prefers to not endanger others by putting her epileptic self behind the wheel of a car.
Fuckers.
No Love,
Carly
Speaking of epilepsy, I'm kind of glad that I'd made the decision to not drive ... I was perilously close to 6 months seizure-free, only to have one on Saturday. A minor one, but a seizure all the same. As I've probably mentioned before, that decision (no driving) was a very hard one for me - especially when I lived in St. Louis, which tends to be a rather car-dependent town. Thankfully, San Francisco is more transit-friendly, and I do have more of a sense of independence here.
Do I wish that I could drive? Yes, sometimes I do - I'd love to be able to putter around town on a Vespa, or experience the freedom of driving a car. But, I know that I'd be putting myself and others at risk - something I'd known long before I became an Insurance Geek. And I can't bear to have my conscience weighed down with the knowledge that I caused a major accident out of my (perceived) selfishness and stubborn-ness.
Finally, the doctors and other people within the Epilepsy community that refer to people such as myself as "people with epilepsy" ... I want to just slug them. I am epileptic. It took me half my life to own up to that, to accept that as my reality - and I don't need and/or want someone to come along and try to be all PC about my epilepsy. Don't kiss my ass, be apologetic about my "disorder", or treat me with kid gloves because I have to take three different medications to keep my seizures under control. Just treat me like a human being - make the epilepsy something that is secondary, or tertiary, about me. File it behind "slightly nerdy and geeky"; "small-time country music fan"; whatever. The condition is there - but does not define me.
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no subject
Date: 2006-09-12 11:19 am (UTC)And yeah, that's retarded they don't provide public trans info.
no subject
Date: 2006-09-13 05:53 am (UTC)I think the lack of public transit info probably comes from their (mistaken) assumption that anyone with epilepsy that can't drive probably has such severe problems that they need a caretaker of some kind. Ah well...