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Recommended reading?

Sun, 11/25/2018 - 14:59
Hi all, I have generalized seizure disorder and have dealt with absence, nocturnal, tonic, and tonic-clonic seizures since childhood. I've always struggled to reconcile my epilepsy with my identity, but I'm working hard to fix that. I'm an avid reader, and I'm looking for some books that focus on the subject. I've heard good things about The Spirit Catches You and You Fall Down but haven't had the chance to read it yet. Does anyone have other recommendations? Thanks in advance! Claire

Comments

Mike, these recommendations

Submitted by claireqd on Mon, 2018-11-26 - 21:44
Mike, these recommendations have been amazing. I will be popping by the library tomorrow!Cheers,Claire

I really resonate with what

Submitted by hrockey_5c019c1a7a4c5 on Fri, 2018-11-30 - 16:02
I really resonate with what you're saying, and actually totally related to the word reconcile...it is kind of a reckoning, at least for me. I share a similar kind of epilepsy, with some rather bizarre symptoms, and have largely been in some form of denial around it since adolescence, however over the past three it so years my seizures have escalated in such a way that my entire life has to be reassessed.I'm not sure if it's the same kind of drama for you, but nearly all of the things that made up my percieved "identity" are no longer options for me. I was fiercely independent, loved working, being free to cook and bake whenever I chose, and now, well, I'm having to totally reevaluate Independence, self worth, and who I am.I don't know if you're an introvert, however, a book that has helped me integrate pieces of myself, both epileptic and otherwise is, Party of One: the Loner's Manifesto by Anneli Rufus; Lying: a Metaphorical Memoir by Lauren Slater, and some of her other books, like Skinner's Box, are really great too. I read Lying years ago, and remember strongly relating with some parts, and not at all with others, but it is bold and speaks to the reality of how difficult it is to be neurologically different...amongst other things.All of that being said, predominately I just wanted to reach out, because I have felt fiercely alone, and when I read what you wrote it made me feel a little less alone. So, if you'd like to talk more, I'd be into that.

Hi Hannah,Thank you so much

Submitted by claireqd on Sat, 2018-12-01 - 22:10
Hi Hannah,Thank you so much for your reply! You articulated everything beautifully - I could not have put it better if I tried. I’m a fiercely independent person as well, and I always prided myself on that attribute. I internalized it primarily as a quality that offered me complete and total control of my life and decisions. I’ve had that stripped away over the past three years. I’m fortunate that I still have a decent amount of autonomy, but I now need to take my condition into consideration above all else when making decisions and adhere to limits that I did not agree to. It’s moderately frustrating at best and heartbreaking at worst. Would love to connect with you. I think my Facebook account should be linked through here, so feel free to reach out through that platform. I’m sure we can figure another route if that particular one doesn’t work out.Look forward to hearing from you!Claire

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