[lenjan]

Does anybody know anything about Guillain-Barre Syndrome? It's some sort of nerve disorder.

Tomorrow I am interviewing someone who has such a severe case that he's paralyzed from the neck down. I've been sitting at work reading up on it, but I'm terrified, because I have no idea what to say. I mean, how do you tread lightly around this? I don't want to be like an idiot TV reporter and say, "So how does this make you feel?" Or, "what is this like for you?" I just don't have a clue how to go about this.

So if anybody knows anything about this disease, or knows somebody who has it and can help me out, please let me know!

Candy

[nothemama8]

Hope this helps,
body's immune system attacking the peripheral nerves
nerves running to and from the spinal cord and brain die, causes paralyses

[gardenergirl]

I think being nervous about it is natural. There are lots of people in the world who are insensitive about disability and illness, and of course you don't want to be lumped into that category. But if you go into the interview with a genuine interest in learning from the person about her experience I think you will be fine. In fact, there is a student group on the campus where I work called DAJA, "Dont assume, just ask" which is about this very thing. They would very much prefer that people ask them about their various disabilities versus assume something about them. So if you are genuinely open and curious and you convey that without prejudice or assumptions, I think you will have a great interview. And I don't think you need to go in there knowing too much about the disorder. What you don't know, she can tell you. Just admit what level of knowledge you are starting from, and ask questions.

Good luck.

gg

[gardenergirl]

Well poo. I just re-read your post and realize that my response is probably too late.

I hope it went well!

gg

[lenjan]

That's OK, gg. I went in knowing they were really reluctant to talk to me, and I just said, "You know, this is hard for me too, because I really don't want to say anything insensitive, I'm just not sure how to go about it." This poor guy went into the hospital dehydrated from a virus, so he was just there to get fluids, and between Friday night and Sunday morning, he was paralyzed from the neck down. He's been that way over a year. Supposedly there is a 95% recovery rate from this disease, but his recovery is taking longer than most.

I just looked him in the eye and let him know what I needed, and he was a lot better about being forthcoming than his wife was. She was so nervous I was there she had a friend there to babysit her! Geeze. All I'm trying to do is get these people some publicity for their fundraiser so they can buy a specially equipped van to get him around. Try to do a good deed and look what ya get. ;-)

Anyway, I really like the idea of a group like you described. I wish there were more "disabled" people who would say that so the rest of us wouldn't be so nervous. I guess it's comparable to asking about a person after a death. My dad died coming up on 6 years ago, and I cry every time somebody asks me about him, and then I launch into about an hour of talking. :-) Talking about him helps me keep his memory alive, and I'm grateful for the opportunity to share those.

And now that I'm getting teary thinking about it, I'm going to shut up. :-) Thank you for the advice, though.

Candy

[gardenergirl]

It sounds like it was difficult, but that you handled it well. And it also sounds like your dad meant a lot to you.

(((CCL)))

gg

[lenjan]

You're hugging the wrong person, but I"ll take it anyway .... :-) --- Candybear (aka CB)

[gardenergirl]

Oh, I"m a dork. Chalk it up to being late at night??? I don't know how else I could have mixed that up.

Sorry.

((((((Candybear)))))))

gg