Rufus Wainwright: 'Poses'

DATE July 24, 2001 ACCOUNT NUMBER N/A
TIME 12:00 Noon-1:00 PM AUDIENCE N/A
NETWORK NPR
PROGRAM Fresh Air

Filler: By policy of WHYY, this information is restricted and has
been omitted from this transcript

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Interview: Professor Philip Simmons talks about living with Lou
Gehrig's disease and his book "Learning to Fall: The Blessings of
an Imperfect Life"
TERRY GROSS, host:

In 1993 at the age of 35, Philip Simmons was diagnosed with the fatal
degenerate neuromuscular condition known as ALS, or Lou Gehrig's disease.
Doctors said he'd be dead within two to five years. Although he's outlived
those predictions, he's faced with constantly diminishing physical abilities.
For the past two years, he's been in a wheelchair. He can no longer lift his
arms.

Simmons taught literature and creative writing at Lake Forest College in
Chicago until his illness made that too difficult. He now lives with his wife
and children in rural New Hampshire. He's published fiction and literary
criticism and continues to write with the help of a voice-activated computer.
His latest work is an extended essay centering on the religious insights he's
turned to while living in the face of death. It's called "Learning to Fall."
This self-published book has done so well it will be republished by Bantam
Books this winter.

I asked Philip Simmons how his life changed after his diagnosis.

Professor PHILIP SIMMONS (Author, "Learning to Fall: The Blessings of an
Imperfect Life"): I think the surprising thing is that outwardly I've changed
very little. All the normal human issues that are present in your life don't
change. They're only put under greater pressure. So, you know, if you have
money worries, you're really going to have money worries now. If you have
difficulty in your marriage, that is going to be put under greater pressure.
So everything just gets ratcheted up. And even though outwardly very little
about my life changed--you know, I continued teaching and raising my children
and writing books and so on--the change is inward, in that I learned over
time--and again this wasn't easy--to put all those issues in a larger context
and to gain a greater sense of perspective on them.

GROSS: You, I think it's fair to say, have turned to your knowledge of
Western and Eastern religions to try to help come up with some meaningful
answers to the questions you've been asking, which are questions that most of
us ask. The question often asked by somebody who has gotten sick is `Why me?'
Have you spent a lot of time dwelling on that particular question?

Prof. SIMMONS: I haven't. I find that question not particularly productive.
For one thing, I can look around and, without much effort, find people in far
worse circumstances than I. So `why me?' is really kind of a false question.
`Why any of us?' might be the more relevant one. `Why, as human beings, must
we suffer? Why do we die?' These are the questions we really have to grapple
with.

GROSS: In your book, "Learning to Fall," you write that when you're in city
streets, you're now greeted warmly by drunkards and the homeless. You say, `I
suspect that the wheelchair catches their eye, that I'm simply a spectacle. I
also sense they recognize me as kin, welcomed into the family of the marginal
and the maimed.' How do you feel about this welcome?

Prof. SIMMONS: I feel fine and even thrilled to be exploring new territory.
There's the sense of adventure in entering into realms of being that are new
to me, and ways of being. There is a sense in which all of us in wheelchairs
move in a different reality than other folks, and there's a part of me that
has enjoyed exploring that reality, even though, of course, I'd rather be up
and around.

GROSS: Phil, because you're a writer and a teacher, do you think you have a
desire to turn your sickness into like a lesson that you can present?

Prof. SIMMONS: Well, that may be. I think when we're faced with a challenge
like mine, what I have to do is do whatever I can, do what's in my power. I
happen to be a writer and a teacher, so at some point it was natural for me to
use those talents in my situation.

GROSS: It seems to me it puts a lot of pressure on you, though, to have to
constantly transform things into lessons.

Prof. SIMMONS: Well, it's our duty, Terry.

GROSS: As a teacher, you mean?

Prof. SIMMONS: Well, as human beings. Our own happiness is valuable
ultimately only if it leads to the happiness of others.

GROSS: But do you ever feel that by putting this pressure on yourself to turn
your experiences into lessons that you're having to, you know, package things
that are still really unresolved...

Prof. SIMMONS: Yeah.

GROSS: ...or still really ambiguous and painful, but somehow maybe present
them in a way where they're more resolved than they really are?

Prof. SIMMONS: I see, right. Well, you don't want to be false to your
experience, and neither do I want to become too programmatic and predictable.
I think the challenge for me is to keep learning, keep exploring, keep
allowing myself to be humbled by experience and humbled by the realization
that I don't have it all figured out. And as long as I can be true to that
and be true to my own ignorance and my own imperfection, I think I can keep
things in balance.

GROSS: Do you ever suspect that we actually live in a pointless, chaotic
universe?

Prof. SIMMONS: I think that probably about every eight hours or so, yes, of
course. But, you know, the pendulum swings the other way and I do sense the
order and the life force that's here in my breath, in the lawn that needs
mowing outside my window, in the sound of my daughter laughing in the next
room. And life returns at some point to fill that void that we all do peer
into from time to time.

GROSS: I'm wondering about the pressures on your children. I think it's hard
for children who know that they have a parent who's very sick and might not
live a lot longer. There's the pressure of `How much time should I spend at
home with them and not go out and not be my friends, because they're sick,
because they need me, because I want to see them as much as I can?' And yet
they're kids and they probably want to go out and be with their friends. And
there's the pressure of how much responsibility to put on kids to help take
care of the sick parent. I'm sure this is the kind of thing you've given a
lot of thought to. Can you share some of those thoughts with us about kind of
pacing your own children and how much you think they should be devoting their
energies to the concerns of having a sick father?

Prof. SIMMONS: It is a balancing act. And as any parent knows, you feel your
way through it without any programmatic solution. My kids are terrific. They
are my heroes. They keep me going in many ways every day. Certainly my
children are under a lot of stress and I try as much as I can not to place too
great a burden on them, wanting them, after all, to just be kids and be able
to do the things they need to do.

On the other hand, you know, I'm sending them scurrying to fetch by reading
glasses or press the buttons on the TV remote and so forth. And for the most
part, they are wonderful about this, and I think have a deeper sense of
participation in my life given that I am weak and I am vulnerable. I'm not
one of these distant, all-powerful fathers. I may be all-knowing and
omniscient, but at least on the physical plain I'm not in control of my
environment. I think that's providing for them a real sensitivity and
awareness to the vulnerabilities that are present in everyone. They're also
very good at scouting out wheelchair access to public buildings, and are very
alert and astute to matters of that kind.

GROSS: My guest is Philip Simmons. His book is called "Learning to Fall:
The Blessings of an Imperfect Life." We'll talk more after a break. This is
FRESH AIR.

(Soundbite of music)

GROSS: My guest is Philip Simmons, a writer and literature professor who was
diagnosed eight years ago with ALS, or Lou Gehrig's disease, a degenerative
and fatal neuromuscular condition. He's written a book called "Learning to
Fall: The Blessings of an Imperfect Life."

I know there's a lot of relationships, you know, a couple of relationships
where one person gets sick and the other person becomes the caregiver, and it
really changed the relationship from a relationship that's built on, you know,
love and equality and all that stuff to a relationship where one person needs
care and the other person gives it, and just all these other things enter the
relationship and it sometimes survives and other times doesn't. I think
sometimes one of the nice things about professional caregivers if you're sick
is that it means that some of the care that you need can be given by someone
else who's not your spouse or your lover, thus freeing up the relationship to
be less consumed with caregiving and care getting. Am I making any sense?

Prof. SIMMONS: Yes. And there are two parts to that. The first practical
part is, yes, by all means, we need to bring professional caregivers into the
situation, into the household. My wife, though she's a wonderful, caring,
strong, loving woman, cannot do it all. And having that care by other people
allows us to have a relationship that is not just about caregiving. Having
said that, it is a continual challenge to reinvent our relationship month by
month, year by year as my health changes. Again, that's not much different
than what all long-married couples face, that need for creativity and for
continual reinvention. But again, the fact of my physical decline puts
greater pressure on that creative process.

GROSS: You write in your book `I had spent my life in pursuit of knowledge
and happiness only to find that both were overrated.' What do you mean?

Prof. SIMMONS: Well, knowledge only takes us so far. At some point, we come
up against an experience that we really can't understand on a rational level
and that is the entrance into an awareness of mystery and of fuller
participation in the mystery of life. Happiness is overrated because, again,
our own happiness is not what is necessarily most important or the end of
life. Thinking only about your own happiness is the surest way to remain
unhappy. We need to heal ourselves and care for ourselves as a necessary
first step to caring for others and healing others.

GROSS: If you found that knowledge and happiness were overrated, what have
you found that isn't overrated?

Prof. SIMMONS: Well, it's almost a banality, but love is not overrated. The
ability to keep coming back to life no matter what dark place you've been in,
the ability to return again and again to what most concerns us in the human
experience is awe inspiring and cannot be overrated. There are really no
words to describe that life force that propels us forward no matter our
circumstances.

GROSS: Well, Philip Simmons, I wish you the best and I really thank you for
sharing some of your thoughts with us. Thanks a lot.

Prof. SIMMONS: Thank you, Terry.

GROSS: Philip Simmons' book is called "Learning to Fall: The Blessings of an
Imperfect Life." The book is self-published and will be brought out in a new
edition by Bantam Books this winter.

(Soundbite of music)

(Credits)

GROSS: On the next FRESH AIR, the story of Philadelphia's violent and
dysfunctional mob family, the FBI's case against it and the trial that just
ended. We talk with reporter George Anastasia of the Philadelphia Inquirer.

I'm Terry Gross. Join us for the next FRESH AIR.
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