Saving Milly

A Conversation with Morton Kondracke

Fred Barnes is executive editor of The Weekly Standard, and Morton
Kondracke’s co-host on the Fox News Channel political show The Beltway
Boys.

Fred Barnes: What was Milly’s reaction to your book?

Morton Kondracke: Milly read the chapters as they were being
written, then I read it to her right after the book came out, and
again recently. The best thing she said was, "This is a great
love story." The first time she read the last chapter she said it
depressed her. It is sad. It’s about death and about losing Milly.

FB: What effect did the book have on Milly?

MK: The book helped change the ending, I think. Partly because
of the hoopla connected with the book–the praise it
got, the publicity, having her picture on the front page of USA
Today, and the hundreds of letters we received–she was encouraged
to get a feeding tube. I think Milly, being the indomitable
person she is, probably would have decided to stay
alive under any circumstances. But the book has made her life
more exciting.

FB: Do you have any regrets about revealing intimate details
of your marriage with utmost candor?

MK: I don’t. I didn’t reveal every intimate detail about our marriage
or what the illness involves, about what Milly can’t do
now and what I do to help her. I did tell a lot because I figured
this was the only biography that would ever be written about
either of us, so I should tell as much of the truth as I could
about our lives. And I wanted people to understand in detail
what a wretched disease Parkinson’s is so they’d help us fight
for a cure.

FB: While writing the book, did you ever pause and think,
"Maybe I shouldn’t be revealing this"?

MK: There were a couple of minor things that my daughters,
Alexandra and Andrea, asked me to take out and I did.

FB: What did Alexandra and Andrea think about the book?
And what effect did it have on your family?

MK: They are very proud of me for having written it and
happy about its success. It’s helped draw us even closer together.
Friends threw two wonderful book parties in Washington.
At one of them, both of my daughters spoke very
movingly of their love and admiration for Milly–about what a
strong mother she is and how much courage she’s shown.
They said that ours was the best marriage they’d ever encountered
or could imagine. They were both eloquent. I was very
proud of them. They say they learned things from the book
about Milly’s upbringing that they hadn’t focused on, though I
don’t think they were surprised by anything. Right before the
book came out, Alex found boxes of old home movies we’d
taken and prepared a video that was played on television a
couple of times when I was interviewed. She said she learned
from those movies what a stylish, "hip" person Milly was in the
old days.

FB: If you could write the book again, are there things you’d
put in that you didn’t?

MK: One thing for sure. Members of Milly’s foster family in
Chicago were deeply hurt by the implication that they were
not only poor, but didn’t keep their house clean. And also by
the impression that Milly’s childhood was totally miserable.
Neither is correct, and I’d try to make it clear that they
scrubbed a lot. But their house was old and it had bedbugs that
couldn’t be cleaned away–hence the use of DDT that Milly
thinks triggered her Parkinson’s. Also, though her mother
abandoned her and her father died when she was young, I tried
to say that she was raised by a wonderful family, the Villarreals,
who gave her great values and inner strength. Milly feels nothing
but gratitude toward them, and so do I. So I’d write more
about good times in her childhood.

FB: Your book got some phenomenal reviews and sold well.
Was this what you expected? Were there any disappointments?

MK: I had so much favorable feedback from friends before the
book came out that I hoped it would be well received. What
happened was beyond all my expectations–some amazingly
laudatory reviews and a lot of publicity that happened partly because
President Bush’s decision was pending on federal funding
of embryonic stem cell research. Saving Milly made it onto two
national bestseller lists. And the mail has not stopped, especially
from people sharing their own experiences with chronic illness.
Of course, once you get a taste of success like this, you don’t
know the limits and you lose your objectivity. So you hope that
maybe you’ve written another Tuesdays with Morrie, and there’s a
letdown when you realize you haven’t. I was disappointed by
a few friends in the media who I thought would pay attention
to the book and didn’t. And I thought that Oprah Winfrey
would–not make this an "Oprah book," but let me talk about it
on her TV show because it is a story about love and commitment.
But basically I’m gratified by the response.

FB: You’ve said that both psychotherapy and your religious
faith helped you handle Milly’s illness. Did they conflict or
complement each other?

MK: No, they didn’t conflict. I suppose some psychotherapists
see religion as too rigid and absolute and some religious people
think therapy means "whatever makes you happy." But as I’ve
experienced therapy and faith, they’re entirely compatible. Religion
is all about ends and ultimate things–your relationship
to the greatest power in the universe and whether you’ve enlisted
in the army that fights for Truth, Goodness, Beauty, and
Love. Psychotherapy is more about means–improving your
capacity for love, openness, and generosity. I think a good
therapist can be an angel, doing God’s work. Mine, Dr. Dorree
Lynn, is. And her message is strikingly similar to that of your
and my spiritual adviser, Jerry Leachman, who preaches out of
the Bible the importance of having a grateful heart–realizing
that all you have is a gift from God. Dorree, when I’m inclined
to dismiss the good things in my life and concentrate on what I
don’t have, tells me that’s sacrilegious. The two of them are entirely
in sync and I’m happy for it.

FB: Why did you need psychotherapy in the first place?

MK: I have a natural tendency to be moderately depressed.
I wasn’t very trusting, was closed to other people and self-absorbed,
narcissistic and judgmental. Maybe you can pray your
way out of such things, but I think God’s answer would be to
send a friend or a therapist to help you. I’ve had both–a therapist
who helped me name and work out my psychological bad
habits, and generous friends who taught me how to be more
generous. In Milly, I’ve had both a therapist and a friend. I can’t
say I’m fully where I ought to be even yet. Everything is a
work-in-progress.

FB: Why did you need your Christian faith?

MK: I’ve always believed in God and I was brought up in the
Christian tradition. Milly’s illness has made me more dependent
on God–utterly dependent, in fact. I say "God, I need
your help" about twenty times a day. And He does help me.
The important process for me now is trying to mature as a
Christian. As I wrote in the book, I believe completely in Jesus’
message. I’m studying his message and his life more deeply, but
I still don’t have the same connection that I feel with God.

FB: Some of your friends, including me, believe you were
too hard on yourself in describing "the old Mort" as self-centered
and snobbish before Milly’s illness. What do you
say about that?

MK: I don’t think I was a monster, but I certainly had chronic
flaws. I may have played them up to contrast myself with
Milly, who was and is the opposite of all I was–generous,
forthright, utterly democratic and unimpressed by status, and
pretty fearless. I may have emphasized my weaknesses to underline
her strengths, but I didn’t distort anything.

FB: Your old friend, Michael Kinsley, the editor of
Slate.com, revealed in Time magazine last December that he
has Parkinson’s and said he chose "denial" as a strategy,
telling very few people and continuing his life as usual. You
and Milly chose what he calls "confrontation." Why?

MK: I’ve known Michael Kinsley for twenty-five years. He was
my editor at The New Republic. I’d learned from others a few
years ago that he had Parkinson’s. I was relieved when he
stopped keeping it secret. Psychologically, Milly and I did try
to practice denial for about a year. We didn’t conceal her tentative
diagnosis, but we did try to deny it to ourselves and try to
find an alternative diagnosis. Milly is such an up-front person
that she doesn’t have much capacity for secrecy and deception.
She didn’t tell her psychotherapy clients right away, but she
did tell everyone else. I followed her lead. If it had been up to
me, or if it had been my illness, I might have opted for a third
option Kinsley describes–acceptance. But Milly’s distress was
so great that I couldn’t do that. And I don’t have much capacity
for secrecy and deception, either. Kinsley disparages what he
calls "aggressive victimhood," which he says is socially trendy.
Michael is such a contrarian and ironist that whatever society
favors is what he won’t do. But aggressive victims and their
families are indispensable in getting more research money for
Parkinson’s and other diseases. So I hope now that Michael
Kinsley will join us.

FB: You’ve lobbied the White House and Congress for more
funding for medical research. You almost lost your press credentials.
How did you resolve this dispute?

MK: I resolved it by obeying the rules of the congressional
press galleries and giving up the chairmanship of a group called
NIH2. It was moribund anyway, and the cause of doubling the
NIH budget was succeeding, so obeying the ethics police was
easy. On the larger issue, "should journalists ever lobby?" I agree
in principle that they shouldn’t. On the other hand, I don’t regret
what I did. I thought my wife’s life was on the line and I
had to do whatever I could. Parkinson’s disease research is still
deeply underfunded, and lobbying Congress to change that
is still necessary. I don’t do it myself, but I help the Parkinson’s
Action Network do so and I speak out at every opportunity,
which is within the rules.

FB: Milly receives medical treatment at the National Institutes
of Health free of charge while you continue to campaign for
doubling the NIH’s budget. Isn’t there a conflict of interest
there?

MK: I don’t feel any conflict at all. I would support doubling
NIH’s budget even if Milly weren’t receiving care
there. And Milly’s been willing to be a guinea pig whenever
NIH has asked her to join in a clinical trial. I acknowledge
we have received far more from NIH than we’ve given back. If
it were legally possible for me to pay for her care there, I
would. Or, my insurance would. And, I’ve been critical of
NIH, too, especially its reluctance to a fight an all-out war on
Parkinson’s.

FB: Why does it do that?

MK: It is determined not to "play favorites" among diseases,
even though NIH itself says that Parkinson’s is the most curable
of all neurodegenerative diseases.

FB: How has the political community responded to the effort
to double NIH’s budget?

MK: Pretty well. The initial impetus for doing this came from
Congress, particularly from Senators Tom Harkin of Iowa and
Arlen Specter of Pennsylvania, among those currently in office.
Increases of 13, 14, or 15 percent have been approved for four
years, a pace that would produce a doubling over five or six
years. The Bush administration supports doubling over five years,
but Bush is playing favorites on behalf of cancer and, of course,
bioterrorism research. The big question is, "What happens
next?" If we return to increases of 5 percent or less per year–
which I fear Bush’s budget people favor–it will be a disaster,
like hitting the brakes on a fast-moving vehicle. Labs will have
to close, projects will be stopped, and people will get fired.
Disease cures will be delayed. A lot of thought needs to be
given to what happens after doubling.

FB: You argued that President Bush should permit broad use
of stem cell research on so-called "leftover" embryos at fertilization
clinics. How do you feel about "cloning," or creating
fertilized embryos for research purposes? Any doubts about
that?

MK: Actually, I am torn about the cloning issue. I’m definitely
against cloning to produce babies, which has all kinds of "brave
new world" implications, as well as being dangerous. In animals,
many clones have terrible birth defects. On the other
hand, so-called "therapeutic cloning" has great advantages.
People could contribute cells from their own bodies, have embryos
cloned, and use the resulting stem cells to repair defective
parts without tissue-rejection problems. But, there is a
slippery slope problem here: if it’s okay to create embryos and
extract stem cells when they are five or six days old, why not
let them grow five or six months and "farm" fetuses for hearts
and other body organs–also to save lives? Frankly, I hope this
moral dilemma can be avoided by the success of research on
adult stem cells derived from blood, marrow, or even fat cells
and require no cloning. If I were in Congress, I guess I’d vote
to allow therapeutic cloning, but limit research to days-old
embryos.

FB: Why does it take celebrities such as you and Michael J.
Fox to stir public interest in a disease such as Parkinson’s?

MK: We live in a publicity-minded culture and celebrities attract
more publicity than anyone else–especially if they are as
legitimately beloved as Michael J. Fox and Muhammad Ali are.
Members of Congress are close to the most publicity-minded
group in America, always looking for witnesses who’ll attract
TV cameras to their hearings and attention to themselves. But
celebrity hasn’t been enough to win the fight for adequate
Parkinson’s money, at least not yet. What it really takes is a
powerful politician who is dedicated to the cause.

FB: Has the warfare among disease groups for federal money
persisted?

MK: No, the fact that the NIH budget is doubling has significantly
reduced the competition. In fact, the major disease
groups have collaborated wonderfully in this common effort.
But the competition will start again if, God forbid, the budgets
begin to go flat again. Nobody will say openly "Cut cancer and
give to us" or "Cut AIDS," but they will be inclined to stop cooperating
and just go for themselves.

FB: Do you plan another book?

MK: I think there is a useful book to be written about
dysfunction–you might say, civil war–in the American
health system. We have the best health care in the world, but it
is much less good than it could be, largely because cost pressures
are threatening quality. Everybody’s fighting–doctors
against insurance companies and HMOs, hospitals with their
own nurses, malpractice lawyers with all providers, the government
with drug companies. Through Medicare and Medicaid,
the government sets prices for most medical procedures and
the process is horribly inefficient. And then there’s the growing
problem of the uninsured, who often don’t get attention until
they are sick enough to go to an emergency room. All this
could be described in a compelling way, and I have some ideas
about solutions. I think health care will be back as a major national
issue and perhaps I could help the process.

FB: So you’d go from Saving Milly to Saving Health Care?

MK: I’m looking for a better title, thanks.