Agnes’ Search for Dignity

(This is an excerpt from Quantum Entity | American Spring. In it, you will meet Agnes Brooks, who is suffering from ALS, and her daughter, Ellen, as well as other characters. It is about Agnes’ struggle for her last shred of personal dignity. It is inspired by true events and a Supreme Court of Canada case I witnessed.)

“Would you like some water?”

She shakes her head ‘no’ pointing instead to a juice bottle nearby.

Mary picks it up and brings it to her lips. She takes a tiny sip struggling mightily to get it down because of her dysphagia. Ellen walks in at that moment to see her Mom, Donna Ann Agnes Brooks, lying semi-upright in a bed that not that long ago was occupied by another patient now departed for Vancity to the north. Revival House is really earning its name.

Ellen has to admit that having her best friend stay with her has been a Godsend.

“Morning, Mary, Mom. Here, let me do that,” Ellen says helping Mary get her mother into a more upright position.

Some days are better than others. Everyone calls her Aggie not just because it’s a riff on one of her middle names but because Mom went to Texas A&M and is one of the students there who helps bring back the Aggie Bonfire at Thanksgiving long banned by Administrators as too dangerous after a dozen students and former student are killed one year in a huge collapse. Aggie (the girl not the school) establishes a new tradition at Texas A&M—building smaller bonfires like the Mohave people do. She explains it this way to other student organizers and activists, “White people build industrial scale fires that force folks to stand back or be killed. The Mohave build small fires that bring people closer. Let’s build small and be nearer to each other.”

It’s this girl that Ellen’s Dad falls in love with until she develops ALS and he bolts. Ellen sighs.

“Cutie pie?” her mother says with a slightly off kilter smile and a bit of drool forming at the right hand corner of her mouth. Aggie has called Ellen that since babyhood. Mary gently wipes away the spittle with a cloth kept nearby for this purpose. They have a big supply.

“I was just thinking about what we are going to do today,” Ellen lies. “Cookie has prepared a lunch for us and Jonesy will be here around 11! It’s picnic day.”

Aggie rolls her eyes Heavenward (ALS sufferers rarely lose control of eye movement; their hearing, touch, smell and taste are often also spared as well as (thankfully) bladder control and sphincter muscles) but she gives Ellen and Mary O’Regan another Mona Lisa smile. She holds out her left hand and arm as if to indicate ‘Where are we going?’ Her left arm (she’s left handed like her only daughter) has so far been spared. Her right arm is nearly totally useless.

ALS usually attacks one limb then, some indeterminate time later, the other before deciding to debilitate the rest of the host body. It is the most common and vicious form of motor neuron disease and there is still no known cure. Ellen is sure of that because she has the resources and will to really search the planet for help. There is none.

Aggie is losing about 1 point a month on the Revised ALS Functional Rating Scale which starts at 48 (normal human functioning) and goes to 0. Su7e tells Ellen that Aggie is around 22 which means that they still have a precious two years to spend together.

Today, they are going on a picnic to Mr. Owen’s place—a voyage of less than 230 feet from Revival House’s backdoor to his fishpond.

…

“Mom, I was thinking,” Ellen says when they are settled in Mr. Owen’s immaculate garden. He is nowhere to be seen today. He’s installed a bird feeder despite the danger of attracting still more birds of prey who’ll eat his fish because he knows Aggie likes them. They’ve seen American Robin, Killdeer, Mountain Chickadee, Yellow-Rumped Warbler, American Pipit and Band-Tailed Pigeon. Aggie calls the latter flying rats, i.e., she doesn’t like them. They’ve even seen White-Faced Ibis but Mr. Owen chases them away with his croquet mallet thinking (incorrectly) that they’ll fish out his pond if they come here. They actually eat insects but sure look like they can fish with their huge down-curved bills.

The girls learn croquet from Mr. Owen who has Hobbsian-designed mallets specially built for him in the United Kingdom. The ‘UK’ is a misnomer these days since Scotland, Wales and now Northern Ireland have all gone off in different political directions. Most of his mallets are a perfect height, grip and stiffness for men who are around 6’2”, Mr. Owen’s height until he starts to shrink with age. So more recently he has been forced to order some more not only for himself but for his guests—Ellen is tall but her friend is just a 5’5” red haired Irish dynamo who makes Mr. Owen wish he was 60 (well, truthfully 70) years younger.

His short grass, perfectly trimmed as always, is ideal for croquet. Turns out that Ellen is a really fine player—the only sport she is any good at other than yoga. She loves the strategy part of it and seems to delight in roquet and tice—that’s where she strikes one of her opponent’s balls and is then entitled to croquet them to oblivion or where she sets up one of hers in an enticing position only to have her opponent shoot at it and miss.

Mr. Owen tries to explain to Ellen that a negative strategy rarely wins at a competitive level and that she should instead focus on setting herself up for a break. She pays him no nevermind and develops her game to be as vicious and manipulative as possible. After all, she is (although she would hate it if anyone was gauche enough to actually say it to her directly), Angelo Keller’s most famous protégé.

On one of his official visits to Revival House, she even gets General of the Army, Farrar Staubach, and his two Aides-de-camp to play with her, beating all three men soundly, twice. After this happy event, Ellen decides to purchase her own custom-made Hobbsian set. She wants the aluminium shaft connected to a 3 lb head via a tapered nylon piece so she can hit further with less shock. It’s currently on backorder from the tiny East Sussex shop where they are made.

“So Mom, I was thinking,” Ellen repeats, “I mean how would you feel if Ella came to stay with you for a coupla weeks?”

“Hmm,” Aggie says, nodding quite vigorously. Aggie is very fond of Daniella. She raises both eyebrows to ask, ‘What’s up?’ Then she makes a rocking movement with her left arm.

“Yes, of course, she’ll bring Danny. She can hardly leave her baby to get to class,” Ellen says.

Aggie raises her eyebrows again. Mary is also wondering what’s up.

“Mary and I are going on a holiday.”

“We are?” Mary asks. Ellen never goes on holiday. Mary’s never even heard her use the word before. “Like, where are we going?’

But Ellen is looking at her Mom. They have a very close relationship and Ellen will never go on holiday if her Mom disapproves. You can never stop being your mother’s daughter or your daughter’s mother.

But Aggie’s reaction is just the opposite. She’s as pumped about this idea as she can express in her current condition. But like Moms everywhere, she wants a lot more detail. Mary too.

…

“Ellen’s name?”

“I’m sorry Aggie, what?” Daniella is asking. She’s holding baby Dan in her lap. She’s trying to teach him to sit up but he’s a flop at it so far.

“Her middle name?” Aggie forces out.

“You can’t remember Ellen’s middle name?”

Aggie is getting frustrated. She has something to tell Ella.

“I can look it up, Aggie.”

Aggie just shakes her head and closes her eyes for a moment.

“Tall.”

“Yes, Ellen is quite tall,” Daniella says her mind on her baby. Actually, Daniella and Ellen are about the same height. Ella might in fact be a smidge taller.

“No, Tallulah.”

“‘Tallulah’ is Ellen’s middle name? That’s nice.”

Aggie nods, ‘Yes’. Then she says, “It’s a Hopi name.”

“What? What did you say, Aggie?”

But Aggie has passed out from the effort.

‘What was she saying?’ Ella is trying to piece it together. Something like, ‘It’s a ‘hopeful name’. It was along those lines, she thinks.

She couldn’t agree more. Ellen is all about hope, hope for this nation and maybe hope for all humankind. Ella loves the President of the Commonwealth almost as much as her baby and husband.

…

Ella is looking at a piece of paper. Aggie has written something down on it. It is barely legible but she can read it. The message is quite clear. Daniella isn’t sure if she should agree.

“Maybe we ought to wait for Ellen to come home.”

A vigorous shake of her head, ‘No.’

“Do you want me to call her instead?”

‘No.’

Aggie is looking at Ella—she is clearly pleading with her.

She takes a deep breath, “OK, I’ll make the call.”

…

“Hello Mrs. Brooks,” says Damien.

She smiles a half smile at him and reaches out her left hand. He takes it in both of his and strokes hers which he knows she can feel.

Ella is fussing with the baby and is worried about what Ellen will say when she finds out that Damien is back here at Revival House. Damien dumped Ellen or something. Now he’s here with his new squeeze. Ellen’s going to shit on her from a great height after this.

“Ella, can you and Danny please wait outside?” Damien doesn’t look at her and isn’t allowing a lot of room for discussion on that matter.

Ella can’t see what Ellen ever saw in this guy.

…

“Are you sure, Mrs. Brooks?”

She nods quite vigorously, ‘Yes.’

“Mrs. Brooks, what you are asking is final. There is no going back.”

Another nod.

“Euphony and I are going to stay the night here with you. We will discuss this again in the morning.”

Donna Ann Agnes Brooks has asked Damien and Euphony to take her back with them to Vancouver. Doctor assisted suicide is legal in British Columbia but outlawed in the State of California. Aggie knows that Ellen will never agree—Miss Goody Two Shoes believes that life begins at conception and dies only when God wills it. This is Aggie’s opportunity, while Ellen is away.

Damien and his nice new Canadian girlfriend will help her. She’s known him for a long time and always thought that he and her daughter would end up together somehow but perhaps that is never to be. Still she knows he knows things like how to help her end her life while she still has some human dignity, not much but it’s all she has.

She is going to send Ella and her baby back home to Santa Cruz. There is no way that Aggie wants Daniella to share in any part of the next leg of her journey.

…

“Mrs. Brooks can we go over this again please,” the doctor is saying. “We can get you help with pain and there are physical and occupational therapists who can perhaps restore some functionality on your right side. Another round of Riluzole may extend your lifespan by as much as four or five months.”

Aggie is just shaking her head, ‘No.’

“Dr. Bell has told us that your daughter is your next of kin?”

She nods, ‘Yes.’

“She is currently unavailable to advise you or us?” The doctor is well aware that Aggie’s daughter is the President of the Commonwealth. He’s worried. Canucks don’t litigate over matters the way Americans do and even though they appear to have turned over a new leaf under their current leader, she may not feel the same way when it comes to her own Mom. “Don’t you think it would be wise to wait for her return?”

Aggie looks really alarmed. She starts to tear up and a copious amount of drool pours out of her mouth.

Euph fixes her up and strokes her gray hair.

“Pullease, Doctor, pullease, help me, help me,” Aggie says desperately with maximum effort. Euphony who hates to cry almost as much as Ellen does bursts into tears. Damien and the doctor leave the room together.

…

“I think that’s it Doctor,” Damien says. “We have a complete video record of Mrs. Brooks’ wishes on the subject. It has been verified, time stamped and repeated three times. We have her signature and two witnesses. We have her psych report that she is of sound mind and can make a decision knowing the consequences. We have two legal opinions on the matter.” Damien is as reluctant as her Doctor to take the next step. He has known Aggie for almost as long as he has Ellen and he totally respects her. She is the one person everyone turns to for advice. He wishes she could have been his Mom or maybe mother-in-law. When he thinks that, he immediately defaults to Mom.

“Perhaps we could talk to her husband?”

The lying creep has refused to take Damien’s calls after the first one when he practically says, ‘The sooner, the better.’

“I don’t think we’ll get any help there,” is all Damien says on the matter of the former husband.

“Let’s go back in,” the doctor says.

…

Euphony and Aggie have composed themselves.

The doctor says, “Mrs. Brooks, can you hear me?”

A nod, ‘Yes.’

“You understand that what we are proposing to do is to give you an oral dose—”

“Oh God, thank you, thank you, Doctor,” Aggie says in her extremis. It is one of her longest sentences in almost three months.

“Please Mrs. Brooks there is more. You must listen and I must be sure you understand. It is an antiemetic drug. Approximately 30 minutes later I will give you a lethal overdose of powdered pentobarbital dissolved in fruit juice. I understand you like orange juice?”

Another nod, ‘Yes.’

“I will give you this via a drinking straw. The pentobarbital overdose will depress your central nervous system. You will become drowsy and fall asleep within ten minutes. Anesthesia will then progress to coma and your breathing will become shallower. Death will be caused by respiratory arrest, which will occur within 30 minutes of ingesting pentobarbital. You understand, you will die? It is always fatal.”

Another nod, ‘Yes.’

“You still want to proceed?”

Another nod, ‘Yes.’

He takes a deep breath, “OK. Mrs. Brooks please prepare yourself.”

…

Aggie is a Christian but in another life she was a Maori poi dancer. The Ngati Rangiwewehi of Rotorua tell her she is white on the outside because she was born in the daylight but Maori on the inside. Maori culture is one of the most inclusive in the world. You do not have to have been born Maori to be Maori, you just have to share their culture and beliefs. It’s one of the reasons why their culture has survived and thrived in New Zealand and proven so hard for white folk to eradicate as they have with many aboriginal peoples elsewhere. It doesn’t hurt either that Maori (women as well as men) can fight like hell too.

Euphony has cleaned Aggie’s body and she is wearing her poi regalia which is way too big for her now. The bodice is made for someone who is at least 5’10” and weighs 135 to 140 lbs. Damien can see that she must have had a figure like her daughter’s when she was young.

Poi is not like Hulu. There is no right/wrong. Poi is a way to communicate music in movement. There is no written history of Poi either. It is said that Maori men did Poi to exercise their wrists in preparation for warfare. Women were originally forbidden Poi moves. So they did it in secret instead. But when the men saw them do it, their beauty and grace, legend says they then decided it was OK. After that, women who excelled in Poi were highly prized. Ellen’s Mom was highly prized in her day.

Maori women became so proficient at poi that it was then used to distract enemies before war so one tribe could wipe out another.

Aggie, after she started teaching, started using fire in her poi dance but it is a modern invention; it’s a way to make it showier, give it more wowza! Aggie made Poi sexier with her wiggling hips and her dressed in evening gowns performing at really high speeds. Even her Maori friends like it.

Poi is compulsory in elementary schools in New Zealand. It’s weird that Aggie is such a good dancer but her daughter, Ellen, sucks at it.

…

At her request, they play Poi E, a tune by Patea Māori Club—a huge hit in New Zealand during another era. It is a song of excitement and life. Aggie looks beautiful and at peace. She is watching their media wall and seeing her friends again, performing in Rotorua. The doctor has given her the antiemetic. They are waiting together for 30 minutes.

Aggie has asked Damien to say the 23rd Psalm for her. They turn down the music so she can listen to his words.

The Lord is my shepherd; I shall not want.

He maketh me to lie down in green pastures; He leadeth me beside the still waters.

He restoreth my soul; He leadeth me in the paths of righteousness for his name’s sake.

Yea, though I walk through the valley of the shadow of death; I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

Thou preparest a table before me in the presence of mine enemies; thou anointest my head with oil; my cup runneth over.

Surely goodness and mercy shall follow me all the days of my life; and I will dwell in the house of the Lord forever.

…

It is time for the pentobarbital. Aggie drinks gratefully. She nods at the doctor. Then she squeezes Euphony’s hand with her left. Finally she turns to Damien with a lopsided smile. She motions to him weakly to come closer.

“Tell her, tell her,” she breathes deeply, “tell her, this is how a brave woman dies.”

“I will, I promise I will, Aggie,” Damien says.

They wait for her last breath and then Damien leans over her body and cries. It’s way worse than when his own mother passed.

Euphony says, “Is there anything I can do to help, D?”

He shakes his head, ‘No’. “But thank you for everything you have done for me and for her.”

Euph isn’t sure whether he means Aggie or her daughter.

…

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