Nancy Mairs, cont'd

The writing life

Confinement is a curse; confinement is a blessing. Nothing is straightforward. Oh I hate the limitations. There are specific parts of limitations that I especially hate. I was always a walker, and I just miss being able to get up and take off and walk somewhere. I mean, I wasn't a hiker, I'm not talking about grueling hikes, I'm just talking about rambles, just being able to take off through the desert and ramble around. And in recent years, probably the greatest source of pain has been that I can't be with my grandchildren the way I want to be. You know, I can sit and look at them, but I can't pick them up, I can't cuddle them, I can't run around after them, I can't take care of them.

Interestingly I've started doing it in dreams. I've started dreaming about them a lot as though, perhaps that was a way of acting on my desires, since I no longer had a way of doing so in my conscious life so I could do it in my dream life. But it's a blessing also, because that very sitting -- I say I sit and look at my grandchildren, that way I see them in a way that perhaps that nobody else does.

And this is true of everything in my life. Because I'm stuck in one place -- I'm really aware of this if George and I are traveling and we use a manual wheelchair, because then I can't move myself any place. So we're in an airport, let's say and he parks me. And he has this penchant for parking me facing a column or a blank wall. George is very Zen, and I guess this is a Zen thing. If I can get him to turn me around so that I'm facing the action, then I can just sit and watch. And to have that kind of time in one's life really changes one's relationship with the world. Having this time to watch, to look, I find leads to celebration.

You know, if things are flashing by you, you don't have time to contemplate them and cherish them, you don't know that you're not doing it. And that's part of the reason why I refer to people that other people may refer to as able-bodied, as non-disabled. Because they lack disability. They have a whole element in their lives that they lack. And I have that element in my life. Because I wasn't born disabled, I also have grounds for comparison. I started my life as a non-disabled person, and I know my losses very sharply -- very painfully -- but I also know my gains.

I've converted into a writing life. I think -- George and I have often talked about this -- who I would be if I didn't have MS? And I feel pretty sure that I would have been a writer, because the first poem of mine I have was written when I was 8. It was published in the school newspaper. It begins "the wind is a very curious fellow."

So I would have been a writer; that was very strong in me, but I think I would have been a very conventional writer. I got an MFA in creative writing and poetry, and I was a good poet, good enough to win a major poetry competition and get a book published. But without MS, I wouldn't have had the impetus that I've had to dig as deeply into -- I'll say "my soul" at the risk of sounding new-agey, and I'm the least new-agey person you could imagine, but that's what it feel like -- experience that was distinctively mine and that gave me a distinctive perspective on the world.

The title of my last book was Waist High in the World because that captures the fact that I look at the world from a different slant. And since, as I say, I spent many years not being disabled, I know that this is a different slant, and I miss sometimes not being able to stand up and see what's going on instead of seeing all the designer jean labels around me and they're all watching what's going on but they don't let me see. Nevertheless, that is my distinctive view and if designer jean labels are given to me to describe, well, then I'll devote my life to describing designer jean labels and the various bottoms behind them.

Next: My relationship with George