Lillian Sullivan, 77, is propped up in a wheelchair in the living room. She can look out on the blooming trees in the parking lot of her Lake Oswego senior apartment complex, but she doesn't leave unless it's for a doctor's visit.
Born in Los Angeles, Sullivan worked as a bookkeeper and raised two sons. Two and a half years ago, she was diagnosed with amyotrophic lateral sclerosis, also called Lou Gehrig's disease, a debilitating motor neuron disorder. In addition to losing nearly all ability to move her own body—a progressive deterioration which will eventually deprive her of the strength to breathe—Sullivan lives with severe pain. She does not expect to live more than six months, and she wants to end her life with drugs prescribed by a doctor.
Last week, after the U.S. Supreme Court agreed to consider the Bush administration's challenge to Oregon's Death with Dignity Act, Sullivan talked about life with ALS and her views on the political controversy surrounding assisted suicide.
How were you diagnosed?
It's about two and half years ago. But I knew something was wrong before…. They did a lot of tests, muscle tests, and then they didn't call me right away, which kind of upset me because I would have gone to visit the relatives in California because I still walked. It was when I went for another visit, he sat just like you and said, "You have ALS. No cure, no medicine, no exercise." Just like that. Now I think maybe that was better than sneaking it up, but it was a sentence. And then I knew I would deteriorate, and I thought I wanted it faster, but it was going slow. Let's face it: We love being alive. But this is no quality, nothing. I can't take one step, even to get in bed or go to the toilet. I can't fix my own food. I can't raise my arm. It's a very poor condition, not being able to do anything. I wouldn't be able to fix a meal or even lift a coffee pot. That glass, if it's full to the top, it's heavy. I can't write anymore, and I had good writing. And like I say, I can't take one step. And another problem [she kicks off her slipper to reveal her tightly curled toes], you see the toes are turned [under], so that gives me even less ability to stand up. The girls have to almost push me up and I grab on. But how long will that last?
I would say in the last month I've deteriorated fast. It's happening quicker. And I don't want to end up like that girl that they want to unplug, in the bed like this [she cocks her head back uncomfortably and contorts her mouth]. That's no life. It's not life. Because I have no strength in my arms, I couldn't even do a wheelchair or lift myself into bed.
It's a total disability. I can still talk, and I realize that I'm sitting, where some people can't even sit. But no, this is no life. And even sitting, I tend to go to one side and after a while I get unbearable pain—I could scream. Then I have to lay down.
When did you decide you wanted to end your life?
Almost immediately, when I heard.
What made you come to that decision?
Because this is no way to live. To live is interacting with people. And feeling free, that—even if it's a fantasy or dream—you're going to take a trip or do this or do that. I can't do any of those things.
Did you get the drugs you would need to commit suicide legally?
No. Because the doctor wouldn't even discuss it with me. I said, "Well, can you give me a referral for a doctor?" And he said, "No, I won't discuss this with you." [Both of her doctors have refused to talk about suicide with her, and she is now seeking referrals for physicians who will.] I can go along with them that they're young fellows and haven't really been alive long enough to see what it's like. There's no way that someone can know how I feel. That's impossible, no more than I can tell somebody that's lost a loved one how they feel. I can't feel it unless it happens to me.
What is the best part of your day?
The best part [long silence].... I can't say. A good night's sleep. Or not going to the bathroom six times in a night. Um. There is no good part. It's an existence. I'm existing. I eat. I think if I were to sit here and nobody offered me a meal, maybe the appetite would go away. If somebody puts it in front of me, I eat it.
What is the worst part of your day?
When I really think and realize what I have and what I won't have. That's the worst. It comes in flashes.
Do you dream?
I have a lot of dreams. Most of them are pleasant. I can't remember them when I wake up. But I did dream in one of them that I was walking. They're not nightmares. I've always been a very realistic person. I don't have a Pollyanna attitude. Facts are facts.
What do you do all day?
I watch a lot of TV. I'm tired of it. I counted 25 commercials on an hour's worth of shows.
Are you ever embarrassed about your condition or your reliance on others to help you eat, wash and go to the bathroom?
No. Why be embarrassed? It's nature's accident. We're like plants. Not every seed makes it.
What would you tell the Supreme Court justices who will rule on Oregon's Death with Dignity law?
That I have no quality of life and they shouldn't make decisions for someone else, being that they're not in the same circumstance. I wouldn't think of doing this if I was well and I could stand up. I can't really even shift my body.
I'll pay you to take me in my chair to [Chief Justice William Rehnquist's] house and put me on his steps.… Let's see how quick he'll change his mind.
Oregon voters approved the Death with Dignity Act in 1994, allowing doctors to help terminally ill patients commit suicide. It took effect in 1997.
The Death with Dignity Act does not require doctors to cooperate with patients who wish to take lethal medication.
In 2001, U.S Attorney General John Ashcroft declared Oregon's policy a violation of the 1970 Controlled Substances Act. The Supreme Court is expected to hear arguments in the case next fall.
As of December 2003, 171 Oregonians had ended their lives with physician-prescribed medication.