Waist-High in the World: A Life Among the Nondisabled

We disagree on so much. The connection between mind & body (she is her body; I am not, and that’s a religious statement as much as a statement of current physical realitites). She doesn’t speak for me — and she doesn’t claim to! She says, specifically, she only writes about herself!

... but we’re held together under the same rickety, tattered umbrella of “disabled” (or “crippled”, if you prefer). So it doesn’t matter that we’re different; we’re the same in the ways it matters.

Her description of cripples as dealing more or less courageously to their lives, with a minimum or lack of self-pity, is ... not true to my personal experience. to put it mildly. Is this because my disabilities are invisible? undiagnosed show more (i’m still trying)? because i’m routinely told i’m making things up? Hmm.

Suicide (euthanasia) is, she says, kinda rude. Why would someone “not want to be a burden” when caring for others is such a joyful act? You’re basically giving your family a gift!!

Well.

There is a definite preference for the cheerfully disabled, the ones who don’t complain and whine but “just get on with it”, as she says, “because you have to.”

Of course you don’t have to. There is always a choice, sometimes even more than one. And though she calls suicide to be a failure to consider the options (have you tried -not- being chronically ill?), she’s wrong: it’s okay to choose something bad for you. It’s okay to eat nothing but chocolate for the rest of your life. It’s okay to date the wrong men. It is okay to decide that you’re sick of the whole goddamn thing and you want to end it. The choice is what matters. show less

A different approach to the standard disabled biography. Nancy Mairs is very blunt, and at times shocking in her honesty. Her point of view is less that of a person with MS, and more from the approach of a women living life from a wheelchair. I appreciate her blunt appraisal and the various affects of an obvious disability while living life.

A lot of other books refer to this book as the authoritative book in the biographies-of-people-with-MS category, and I think I went into it with above-average expectations due to this. The first few chapters almost had me putting it away, but it redeemed itself in the later chapters. I'm not sure there was anything about it that really bothered me, it just wasn't above-average like I went into it expecting. A fairly good, if inconsistent, MS-related-biograpy.