Susan Choi

So when I was younger, my father really did not want my mother to talk to me about her illness at all, because he, I think magical thinking, was hoping that I wouldn't notice.

Of course I noticed, who wouldn't notice?

But you know, it was obviously a coping mechanism of his.

So later in life, when I did have an opportunity to talk to her a lot about it, one of the things that she told me was that,

You know, MS is a devilishly horrible disease if anyone suffers from it or knows someone who suffers from it.

And it can take many, many forms.

It's very, very hard to pin it down, especially during the period that she was first ill, which would have been early to mid 1970s.

Not that much was known.

And she told me that she really did think that she was crazy for a while, that she really did think it was all in her head, that it was some sort of psychosomatic

because you couldn't really see it.

But she felt it, you know, like my legs keep going out from under me.

You know, when I reach for a coat in the coat closet, I miss.

Like these things kept happening that it was invisible in a way.

Only she was experiencing it.

And so she did have that fear.

And she did also tell me, and I put this in the book, that when she was finally diagnosed, she was so relieved.

Because finally, like, it had a name and it was a real thing.

But maybe that's how we feel.

Yeah, and she's a little girl.

And no one, also no one tells her the truth.