Into the Limelight: Perspectives on Caregiving
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 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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