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the Limelight: Perspectives on Caregiving /
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Into the Limelight: Perspectives on
An interview with Dana Reeve
Like many of us, Dana Reeve became a
caregiver overnight. Her husband, actor and director
Christopher Reeve, was left paralyzed from the neck down
as a result of a riding accident in 1995. Nothing would
be the same for the whole family. But as a family, the
Reeves have learned and grown from this experience. Dana
Reeve spoke with publisher, Gary Barg about her new life
as a caregiver and a caregiver advocate, how she copes
and what she has learned.
Gary Barg: How did you explain to your son, Will, about
Dana Reeve: As a parent, I firmly believe that we need
to be as honest as we can be with our children,
tempering what we say to match the appropriate age level
of the child. Children are extremely resilient. I think
if they feel safe, then you're giving them the best
possible tool any parent would give a child: to be able
to cope with life's inevitable difficulties.
At first, Will (he was three years old) was afraid of
even seeing Chris, but he adapted very quickly, Will
repeatedly fell off his hobby horse in the pediatric
ward playroom and say, "Oh, my neck, my neck!" I would
have to tell him that his neck was fine and "Daddy's
neck is broken and he can't move." We would do this over
and over again. It was sort of like play therapy that he
was devising on his own.
GB: How have the past three
years changed your perspective on life?
DR: Oh, boy, I don't take
anything for granted. I'm also more cynical and more
pragmatic. I don't take a romantic view of life at all
anymore; I really take a practical view of life. I don't
necessarily see that as a loss, but I do see it as a
difference. "Happily ever after," is like, "Ha-Ha-Ha."
However, the other side of that is entering into a world
where you see the gift behind disability. I mean, it's
not as frivolous. There's an intensity to life and
relationships which in many ways is extremely
fulfilling. I think there's a lot of truth to the adage,
"What doesn't kill you makes you stronger." I'm also
finding that you can find joy in the oddest of places
GB: Like what?
DR: Just in small things. We
were looking at the stars the other night, and the idea
that Chris can be out of bed, and the stars were out,
and it was so clear with the most beautiful breeze. You
just appreciate you're alive, and you're able to look at
the stars, and everybody is healthy at the moment. I
think that helps us appreciate our family relationship
GB: What has helped you get
through these times?
DR: Therapy. I'm a big believer
in therapy if you have someone very, very good and
qualified. There are some things that I don't think are
helpful to share with your spouse. I do think a bad
therapist is worse than none at all, but there are
wonderful clinical psychologists out there. I consider
it to be similar to getting a heart doctor for your
heart. A therapist is an emotion doctor for your
GB: How do you deal with stress?
DR: Stress is an ongoing
problem. I find Yoga is really helpful, but then I find
my life gets so stressed out, that I don't have time for
Yoga. No time for the cure. It's ironic, one of the
things I speak on is nurturing the nurturer. I really
believe in it. I was telling a friend of mine that I was
going to speak on it, and she looked at me and said,
"Better start practicing what you preach." I do think
you can deal with stress in little ways, you can give
yourself little getaways, and it doesn't always have to
cost money. It's really a gift you have to give
yourself: mini respites.
GB: What do you do for your
DR: Yoga is great when I take
the time. But even when I don't, I would just go up into
a room where no one will come in and do whatever it
takes, whether it's reading, sitting completely quietly
or doing something where I'm not reporting to someone:
not answering the phone, not getting something for
someone, just locking myself away. Taking a bubble bath,
even a mental bubble bath.
GB: What's been your best source
of reliable information as a caregiver?
DR: Other caregivers. Over the
past few years, I've talked to a lot of women whose
husbands are injured, sharing tips and ideas, and
venting with one another. You get advice from your
doctors, or you get the official recommended procedure
on some things, and then someone else will come in and
say, "Oh, you know what's easier?" Or they'd say, "Well
yes, you can spend all this money on this particular
kind of bandage, or you can cut up a Maxi pad, and it
sticks to the sock." I get all of this useful
information about so many different products that are
helpful. Everything from machines to suppositories.
GB: How do you redefine
"normality" in your life?
DR: I think it becomes easier as
you become used to it. The first year anniversary is
very, very tough because every landmark we hit, I
remember the year before when it wasn't that way.
The second anniversary was easier, because I was looking
back on the first year and how tough that was. Then this
past year went by, and we've been able to look back and
think, "We've come really far. Things are becoming
positive and definitely different."
But, there's also some wonderful stuff that comes out of
it. I mean meeting people we may never have met, and
strangely enough, opportunities that may never have been
taken advantage of. Directing is something Chris has
always talked about, and then he ended up directing a
beautiful film which came directly out of people wanting
to reach out and give him opportunities. And he ended up
winning awards for it. So, that's something that has
come directly out of the tragedy. I'm also grateful for
what Chris's injury has done in terms of elevating the
consciousness of the country, and the world, about the
disabled. He's made a tremendous change in terms of
GB: You must hear all the time about
how heroic you've been. How do you feel about that?
DR: I'm actually very
uncomfortable with that title because I don't feel like
a hero. When Chris and I got married, I took my wedding
vows very seriously. When I took those vows and said I
will be there in sickness and in health, no matter what,
that was the scary day. That was the day when I said,
"Okay, here we go. We're going on this journey, and
let's hope it's a fun one." Really, it has been.
As far as my situation today, I don't see any other
choice. I don't say that in a negative way. It's just
not a situation where there is a choice. I'm so grateful
that I have the stuff to be able to cope with difficult
times. I credit my parents for that. But let's be
honest, we have financial resources that many, many
people don't have. I was very happy living in a kind of
an obscure existence. Then suddenly Chris is the
limelight-the upside of that is that I get support in
droves, so I don't see myself particularly heroic.
I do see many, many caregivers, mostly women, every day,
who are the real heroes. People who really have a
struggle, who are invisible and not in the limelight.
Their husbands are irrevocably depressed and have not
been able to get back to work. These women are doing
what I'm doing, but have a job that is a thousand times
harder. If people say I'm a hero, I'm glad they think,
"Okay, caregiver equals hero." But personally, I have it
much easier than many people, and I certainly do this
out of love and commitment. I also recognize that
there's a trap in the perception of caregivers: we do
these things out of love and therefore, we have to do it
without any rights. I don't think that's fair.
GB: Chris mentioned in Still Me,
that only 30% of people will fight their insurance
company, Do you have any advice for the other 70%?
DR: Yes. My first piece of
advice is, "Don't take it personally." When I first
started fighting the insurance company, I used to scream
and cry, "How can they be doing this to us?" Then I
realized they do it to everybody. My second piece of
advice is, when people ask, "Can I do anything to
help?", assign them writing letters to the insurance
companies after you get denials. Writing re-submissions
becomes an incredibly valuable thing that someone can do
for you. It's amazing how much it will ease your mind.
Whenever someone asks if they can help me, I ask them to
do something specific, and it gets done. I think that
people want to help, even busy people.
GB: Tell me about the
Christopher Reeve foundation?
DR: The mission of the
foundation is two-fold: to support scientific research
towards a cure for paralysis, and to give out what we
call Quality of Life Grants. These are for people with
disabilities in areas of care giving, transportation,
recreation, personal needs-all different things. We
can't give to individuals, but we do give to grassroots
organizations. Last year we gave $100,000 in grants to
organizations, including the National Family Caregivers
Association. We're a tiny foundation, and we don't have
a big staff. A lot of our fundraising has been just by
people sending in money and earmarking it for the
GB: What positive things do you
see in motion for caregivers?
DR: One of the most positive
things is that the National Family Caregivers
Association is working to get caregivers included in the
year 2000 Census. I see that as a very positive step. As
caregivers we're working primarily out of a feeling of
love and obligation toward the person for whom we care.
But that's also when we become invisible. We don't see
it as a job, it's just part of our life. But it is a job
and there should be tax breaks, as well as other kinds
of assistance. Also, the amount of money family
caregivers are saving the healthcare system is
tremendous. It's phenomenal, and this is something I
don't think people realize. We have to speak out and be
counted in a census.
I love this quotation from Rosalynn Carter's book.
"There are only four kinds of people in the world: those
who have been caregivers; those who are currently
caregivers; those who will be caregivers; those who will
need caregivers." Truer words have never been spoken.