THE MACLEAN’S EXCERPT

THE FINAL DAYS

June 27 1994
THE MACLEAN’S EXCERPT

THE FINAL DAYS

June 27 1994

THE FINAL DAYS

A moving new book tells of Sue Rodriguez’s lonely campaign to die

THE MACLEAN’S EXCERPT

Wheelchair-bound and reliant on others for even her simplest needs, Sue Rodriguez took her fight for the right to die to the highest court in the land, and lost. In its historic 5-4 ruling last September, the Supreme Court of Canada rejected her request to have a doctor help her commit suicide when she could no longer bear to live.

As she waged her legal battle,

Rodriguez became a familiar figure to Canadians. But at 43, the once vital and athletic woman achieved fame as an emaciated and barely intelligible ghost of her former self, her mind sharp but her body ravaged by amyotrophic lateral sclerosis (ALS), an | incurable, fatal condition that progressively destroys the | muscles. Last Feb. 12, despite | the court’s ruling, she went § ahead and committed suicide 5 at her home in Saanich, B. C. £

Now, in Uncommon Will: The Death and Life of Sue Rodriguez, published this week by Macmillan Canada, writer Lisa Hobbs Birnie writes a moving story of a proud, headstrong woman on a difficult and lonely mission. Her relations with her mother and siblings were strained. And Rodriguez had separated from her husband, Henry, not long before her condition was diagnosed in 1991. Although he moved back into her house to be with her and their son, Cole, he had also started a relationship with another woman. The following abridged excerpt covers the final days, when she was almost entirely dependent on professional homecare workers. It starts with Birnie meeting with Rodriguez, less than two weeks before her death:

TUESDAY, FEB. 1, 1994 Sue sits in the small office in her house, waiting, her figure bolt upright and stiff in the costly wheel■ chair. There is foam cushioning at her back, under her buttocks and on the left armrest of her chair. She is wearing stirrup pants with heavy socks to the knees; her legs are as thin as sticks. When I enter, her head turns slightly and slowly towards the door: “Hi, how are you?” The voice is generally without pitch or tone, the words all joined. Her green eyes smile a welcome but the facial muscles barely move.

Homemaker Nadine Porter has just washed Sue’s hair. Brushed back, it clings smooth and wet to her head. Everything is worn thin, her voice, face, legs. I put my hand over hers. I feel bird-like bones, the tissue-thin covering of tight skin, the cold of her fingertips unchanged by the warmth of mine. She is exhausted and dying, although a natural death could be many months away. I say anxiously: “You shouldn’t let your hair stay wet like that, you’ll catch your death of cold,” and we both start to giggle like 10-year-olds.

But Sue’s mirth is hollow, a matter of tension. She is more depressed now than she has ever been. She remarks on this: “I have been happy until now.” Astonishingly, for all her grief and anger, this is by and large true. Her capacity to enjoy life has been extraordinary, shuffling on legs as spindly as stilts, sitting on a bum no bigger than a doughnut, weak lungs pulling in air to exhale in gasps of laughter, her sense of the ridiculous finding unlimited material in her own decline.

And despite the effort involved, her standards of social etiquette have remained high: her table is always well set, her meals carefully and exquisitely prepared; she never failed to order flowers for anyone who had done her a favor.

As she speaks, her eyelids droop, languorously open and close for one, two minutes. A few hours ago, Sue’s morphine dose was increased: it will take a day before her body adjusts. The wave of sleepiness passes and she resumes:

“I’m not enjoying life as much. Emotionally, psychologically, things are becoming more depressing. Henry does stupid, shitty things because he is so confused and doesn’t know how to behave. I tell him I care for him in the hope he will snap out of this inexcusable behavior. But he says the only way he can get through all this is to have this relationship with his new girlfriend.”

Her hurt is so bulky it fills the room.

I imagine Cole with his luminous eyes and nine-year-old’s heart absorbing this tragic tangle of adult lives, listening to the talk of suicide and love and death and processing it all. Sue said she’d suggested Cole meet the girlfriend. “I thought it best. I thought Cole might be upset with Henry away so much. I asked Henry if he’d told Cole what it would be like once I’ve gone. I felt angry and worried: Tell him you have a girlfriend,’ I said. So Henry did. Cole said: ‘So, what’s she like? Does she have any kids?’ ”

Sue swallows with effort.

“Last night, I dictated a letter to Cole and made a tape of it. I said I was sorry that I would not be here to watch him grow up. I said there were things I wanted to continue to teach him. More than anything, I asked him to have respect, understanding and compassion for other human beings. Be patient with your father, I said, being a single parent is not easy and things will not always be easy for him. I told him how special I thought he was and pointed out some of his good qualities. But I also let him know how important it was to learn right from wrong.”

A long pause. Finally: “I tried to help him understand why I was going to take my life. I finished my letter this way: ‘I have decided to leave now because my body is deteriorating and I don’t want to suffer any more, nor do I want you to have to watch me.’ ”

“You’ve found someone who will kill you,” I say. Yes, she says, she’s found a doctor who would do it “on principle.” Sue then says she has decided on a date. She will not say when. I don’t want to know when. She will not say who. I thought, this is a woman who, for all her national fame, has no long-term, intimate sustaining love in her life except that of a mother for her own son. In fact, she has no close relationships with anyone except a couple of very recent friends keenly interested in physician-assisted suicide.

TUESDAY, FEB. 8, 1994

When I walk in to her little office, it’s clear that she has thought a great deal about our last meeting and now, only days before her death, wants to ensure her message is understood. “Society assumes in a normal death of a family member that people are surrounding them and showing their love and support,” she says, swallowing hard. “Everything has to be done for me and it’s getting worse. Even at night, sitting watching television, I have trouble resting my head. It’s getting harder to hold it up because all my muscles are going, but even when I lie down I can’t get comfortable. If I need a drink, my homemaker brings a cup in a special container, but I can’t hold on to the container any more. When you have all these physical things happening to you, and they are progressive, you just look forward to moving on.”

I say that I can understand that. At this, against her will, she weeps. She is weakened by illness and heartbreak: it’s hard to say which is the more devastating. Her crying is terrible, out of her depths, out of someplace where I’ve never been.

It is her son whom she cannot leave but feels she must. He had come home from school with a report that needed a signature, and she had wanted to sign it. Her writing is now the large uncontrolled scrawl of a first-grader. He had taken it from her and run off. She said he spends most of his quality time with the homemaker. It is simply time for her to move out of his life.

“So,” I say, “you’ve decided to take off and leave us to our own devices on our sad old planet Earth. Are you going to tell me about it?” Will the homemaker be sent out on a message? Could she not return while the doctor was still there?

Sue says no: “There will be no homemaker on that night at all, because it will take several hours to kill me.”

So morphine will be used in increasing doses, enough to finally stop the heart?

She says yes. I say that morphine often doesn’t kill, even in massive doses, it must be mixed with something else. She says that is true. We are talking as if exchanging recipes. I cannot believe this conversation: it is all hideous.

“The front door will be unlocked,” she calmly continues, having decided to ignore my discomfort. She is enjoying describing her death: fairly or unfairly, I sense in Sue an anger that is both deep and pleasurable, an anger at the way things are and a pleasure at outwitting those institutions that would contain her. And perhaps in all fairness there is deep pleasure in anticipation of an end to suffering that I can’t imagine. “I will be here alone on my bed downstairs, helped there by the homemaker and apparently ready for rest. I can’t say where Henry and Cole will be as I have to protect everyone, but neither of them will be here.”

I can hear how cruel my next question sounds, yet I feel compelled to ask her: “And you, if you were surrounded by love, by a family that hugged and kissed you and brought hot soup, and a husband who held you precious, brought you flowers, rubbed your back. Sweet Suzie, would you now be doing this?”

She replies with her usual honesty and integrity: “I don’t know. I don’t know.” Each word was emphatic: I... don’t... know. She can hardly breathe for grief.

FRIDAY, FEB. 11, 1994

The pains and stresses of the past two years are already receding. Her legal struggle for physician-assisted suicide has been the first battle in the war for euthanasia in Canada and she is deeply satisfied that she has led it. She has made the whole country aware of the existence of ALS, the fate of those afflicted by it and the pressing need for wellfunded research. More than anything, she has made the whole country aware of how difficult it is to die with dignity, and the responsibility of society to ensure that services are in place so that people can.

Tomorrow, she will breakfast with her family, then go into her office. When Henry and Cole leave, it is from there that she will bid them goodbye. Soon after, at about 10 a.m., [NDP MP] Svend Robinson will arrive. An hour later, the doctor will enter through the back door. She will meet with the doctor in the kitchen. Svend will then help her into bed.

She sees her suicide as a solution that is efficient and practical. She refuses to allow into her consciousness those who might question or oppose her. She is convinced because of the attention paid to her by the media that the taking of her own life is acceptable to society. She is innocently unaware of its entertainment value.

LATE AFTERNOON, FRIDAY, FEB. il, 1994

Nadine settles Sue down for a rest before dinner. She can hear Gwynneth Powell, the night worker, come into the house.

Henry’s been in San Francisco during the week and brought back a fine bottle of white wine. When it’s opened over dinner and the tall, thin glasses are filled, the atmosphere is festive, celebratory.

The meal is a memorable one. There’s not only talk but laughter. Henry is loving and attentive, and Sue’s speech, usually unintelligible by dinnertime, is understandable if one concentrates and guesses. She responds to Henry with light talk, wit and sparkle. There is a warmth and peace between them that Gwynneth has not seen before. Cole responds, gleefully posing some childish riddles, looking with laughter from one parent to the other while they struggle for the answer.

Every Friday night, this family has a little ritual. Cole is allowed to stay up with his parents an extra hour and they watch Street Legal together. Now, usually, when Cole is going to bed at 8 o’clock and comes in to say goodnight, Sue is being washed or having her teeth brushed. But this night when dinner is over and Sue and Gwynneth are downstairs, Sue says she doesn’t want Cole to see her doing her toilet and she’d like to be sitting down when he arrives.

Gwynneth says OK and thinks nothing of it. But a strong impulse moves her when she hears Cole coming down the stairs. On instinct, she sits Sue down on a low stool, stands behind her and when Cole comes in, she gently moves Sue’s arms, stiff and thin as sticks, enfolding them around Cole’s slim body. The robot arms won’t go high, but they reach around the small of the child’s back. Sue gives her son a final embrace. The child, excited by the sheer happiness of the night, smiles at her. “Ah, Mom,” he says, “you’re being weird,” and wiggles away.

After Henry and Cole go to bed, Gwynneth gets Sue ready for the night. She changes the little booties Sue wears to protect her fleshless ankles and makes sure the protective pads are on her bony knees. Then, she checks the foam padding that holds Sue’s dislocated left shoulder [a result of her weakened state] in place. Sue remarks on how long it takes her to get ready and how exhausting the process is.

When Gwynneth turns out the light, it’s nearly midnight.

SATURDAY, FEB. 12, 1994

This morning, Sue doesn’t hesitate when she picks her clothes for the day. She has two pairs of black spandex pants. “The old ones or the new ones?” Gwynneth asks. “Ah, let’s see ... the new ones, why not?” Sue says. She picks a blue denim shirt to go with them. The shirt is positively festive, a resort boutique item with pieces of multicolored glass scattered over the bodice, a fun, special-occasion shirt.

Sue asks Gwynneth to pick out a pair of earrings. “Nothing too flashy,” she says. Asked if she wants any makeup, Sue says no, just a little lipstick. But its color is too pale and Gwynneth is too gentle. “Come on,” Sue says, “be a little assertive with that lipstick.”

It is now 10 a.m. and time for Gwynneth to go. Sue is sitting, dressed up and expectant. Gwynneth hesitates, thinks of saying something, but decides against it. With a last wave, she goes flying out the door.

Gwynneth was sitting at home listening to music that night when the phone rang. A co-worker told her the news. She sat for some time, not wanting to move, trying to absorb it. It was 11 p.m. She thought of Henry and Cole. Just before midnight, she called the house. Henry answered. He was very quiet. ‘Were you sleeping?” Gwynneth asked. No, he said, he was just lying there in the dark with Cole in his arms, the two of them awake and silent, hoping that the night would pass quickly.

MONDAY, FEB. 14, 1994

At a press conference in Ottawa, a distraught Svend Robinson tells reporters that he was present when Sue Rodriguez died early Saturday afternoon. He had held her in his arms as she slipped into unconsciousness. She had died peacefully and with dignity. The only other person present, said Robinson, was an unnamed physician who had assisted Sue Rodriguez in taking her life. The Saturday date had been chosen in January. The only other person to know that Sue’s death was planned for that day was her husband, Henry Rodriguez.

Reprinted with permission from Uncommon Will: The Death and Life of Sue Rodriguez, copyright Lisa Hobbs Birnie and Sue Rodriguez, published by Macmillan Canada, Toronto.

TUESDAY, MARCH 15, 1994

A pathologist’s report reveals that Sue died of a massive overdose of morphine taken with Seconal capsules.