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 Chris's accident?
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 and activities.
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 even more.
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 emotions.
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 "mini respites"?
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 people's awareness.
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
foundation.
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.
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