NAMI 2007 Convention: An Interview with Kitty Dukakis
For over 20 years, Kitty Dukakis struggled with debilitating depression that was not controlled for long by any medication or by rehabilitation. It was coupled with long-term drug (amphetamine diet pills) and alcohol addictions, which masked her underlying depressive disorder. It was not until 2001, when she first received electroconvulsive therapy (ECT) to the brain, that she was able to reclaim her life. Ms. Dukakis is a social worker by training and a long-time advocate for refugees and the homeless. She is the wife of former Massachusetts governor and 1988 Democratic presidential nominee, Michael Dukakis. She recently co-authored a book on ECT (Shock: The Healing Power of Electroconvulsive Therapy) with Larry Tye, an award-winning former Boston Globe medical and health reporter. Shock details her personal experiences and includes Tye's investigation into the history and science behind ECT, which fell into disfavor in the 1960s, and its comeback as a viable therapeutic option. At the 2007 NAMI convention, Mrs. Dukakis was the recipient of The Lionel Aldridge Award.
RC: Your book, Shock, was released last fall. What's happened since then?
KD: It's been an extraordinary eight or nine months. Two days ago, I celebrated two anniversaries with my husband. One was our 45th wedding anniversary and the other was six years from my first ECT treatment. And it was a special day of remembering for me of what life was like before I had this treatment. It was a pretty dismal life that cycled with depression every nine or ten months. I am so positive about this treatment and the way it has treated me. And the medical care I've had with an extraordinary physician. I am just full of gratitude. The one negative is that there are memory issues, but I don't focus on that. It happens. Most of it is short lived but those that are permanent losses, I accept and it's a tradeoff.
RC: Are you saying that you get an 80% improvement with respect to depression if you're willing to give up 20% of your short term memory?
KD: I think it's probably closer to 90% or 95% gain and a 5% loss. That's the difference in my life today.
RC: I know that in my experience, it is so important to get the right doctor. And that they have the right attitude because you are committing yourself to their care.
KD: Absolutely. That's why I tell people, normally I would say don't shop around, it isn't good for medical treatment. In the case of a mental illness, especially with ECT, it is so important that patients have a very strong, positive relationship with the physician and if that attitude isn't there, that feeling of closeness isn't there, then they ought to go and find another doctor.
RC: You must have had quite an ordeal if you tried many, many medications before ECT worked for you.
KD: I've counted the number of antidepressants. I had over 12 different ones over a 17 year period... It's horribly frustrating to continue to try new medications, none of which worked for very long and all of which have unpleasant side effects. And nobody during that decade and a half period ever suggested ECT therapy.
RC: What were your depressive episodes like?
KD: Well looking back, which was a long period of time to reflect on, I certainly do remember the feeling. My level of frustration was much worse. It was clinical depression. It would cycle about the same amount of time as it does now. I would take to my bed. And I am a very energetic, active person.... But I had no energy or interest in anything in my life. We're about to have our seventh grandchild in another two weeks and my relationship to my grandkids is something that is very precious and important in my life. And at those times, I didn't care. I had no interest in my young grandchildren. I had no interest in anything. The periods would last up to four months and then I would start to drink. Not everybody with depression has an alcohol problem, but many do. I would break the cycle with alcohol, which is a rather strange way of putting it. But that's what my husband believes happened.
I'd come out of the depression and go for another nine or ten months and be okay. Then it would hit again. It still does. The joy of today is I know that something works. When the feelings return, I call my physician as quickly as possible and get myself in... It just worked for me, from the beginning... For some people, it takes four to six treatments.
RC: Do you still take medication for depression?
KD: I don't take antidepressants anymore. I haven't since a month after my first treatment and don't need to. They didn't help me before. I was, as was Michael, rather convinced that I wasn't going to need them afterwards. Some people do.
RC: Your story really is amazing. It's seems strange because I think that public opinion about ECT and prefrontal lobotomies have been all mixed together.
KD: Well, it has. After "One Flew Over the Cuckoo's Nest" with Jack Nicholson, that's when the initial stigma [about ECT] really started.
RC: I would think that going public and telling the story about your experience with ECT could help address the stigma surrounding it.
KD: I feel so strongly about my hope that at some period in the not too distant future, the stigma attached to mental illness and, in particular to ECT, is going to fade. That people will have this as an option especially those who are in particular categories such as suicide, pregnancy, and older patients where this treatment works faster than antidepressants and more successfully.
RC: I have a good friend who has very serious clinical depression about every four years. She's tried every medication and the only thing that's helped her is ECT. She's never talked about the details. But your book explains the procedure and what researchers have been doing to improve techniques for administering ECT treatment.
KD: I'm so grateful to the researchers who have done so much to make this a clinically safe procedure. It's pretty benign. I go into the hospital at 7:30 in the morning... I'm out oftentimes by quarter to nine and on my way home... And it's a short procedure. It's not without risks because we have anesthesia. But they are so careful about how the body is treated before getting any kind of shock. Before the muscle relaxant is given. I have an EKG every time, my temperature is taken, and other levels are checked. And before I have that first shot, those things are taken care of. I'm given oxygen during the whole process. That was not the case when ECT started and into the ‘40s and ‘50s.
The interesting thing is that all of my treatment except for the first night -- before the first treatment -- has been out-patient. There's usually no reason to have somebody as an inpatient unless there's a medical reason or someone is suicidal. In my case, the night before, I was afraid I was going to drink. I was so depressed I asked my doctor to help me out [with admittance to the hospital].
RC: There's a lot of prejudice about mental illness in general because people don't understand it and I think the same kind of thing has obviously happened with ECT.
KD: No question. One of the things I'm going to talk about [at the NAMI convention] is making a confession that it wasn't until I had ECT for the first time that I could admit to myself, after all these years, that I have a mental illness. Well, I had depression. What does that mean? I know today it's a disease. It's an equal opportunity disease, just like alcoholism.
RC: Are there any particular regulations governing the use of ECT treatments?
KD: One thing that I need to mention is that there are different laws on the books about ECT throughout the United States. California has some very damaging legislation... Two effects are very painful and serious for families and for physicians. Number one, you need two or three physicians to sign forms. And secondly, if you are a young person under the age of 18 in California, you need a court order to get treatment. And that is almost impossible. When you think about an indigent, suicidal 15-year old --and as a social worker I've had many of these cases -- who cannot get treatment that will make a difference in his or her life. And so I'm working with some of the mental health advocates in California to make some changes in the Assembly there. And this [legislation] is true in one other state.
RC: In your book, you say that over a ten year period none of the treatments centers you went to for help with your depression even mentioned ECT as a treatment option. You also mention the lack of ECT support groups.
KD: One of the things that I have talked about from the beginning is wanting to begin a support group for those who are contemplating ECT and those who have had ECT. It's one of the things I'm doing now, especially for people who live alone and do not have the wherewithal to get physically to and from their treatment. And that's very important because I want people in every state in this country to be available to those who are going to have treatment and can't get themselves there -- who can't afford to take cabs and other transportation services. The other thing is that there would be a willingness among those in support groups to discuss with people what it's like to have their first treatment and what their experience was like. Not warning them, but preparing them for what this treatment is going to be like. And being there after treatment -- physically, in some cases, or by phone or through the internet or e-mail to answer questions that clearly will come up.
RC: You and I have been very fortunate because we have gotten treatment that really restored our lives although it might have taken a while. For so many people, this doesn't happen. And we have an obligation.
KD: Yes, to reach out to others. And I think that it's an uneven medical opportunity all over this country. There are places that stopped giving ECT treatment in the ‘50s and ‘60s when it had a very negative reputation. When ECT started again, many of those places refused to provide treatment. And it's still the case today. I hear from people in outlying districts or communities who are physically hours away from the closest treatment. That needs to change.