ROVER’S WAS the kind of place that provoked conversations about love and art and philosophy, so while it was clear from my mother’s particularly erect spine that she wanted to talk about something specific, we kept to small talk over the first of our eight-course grand menu dégustation: an egg, lightly scrambled with lime crème fraîche, returned to its shell and topped with white sturgeon caviar. The tiny beads were dark olive and tasted nutty, perfect over the creamy egg.
“Were the negotiations satisfactory?”
“They were very useful. However, it became clear that the needs of the software company and the Norwegian government were very different, and would remain so, so I concluded the talks.”
“You don’t seem too dismayed,” I said.
“In any circumstances, it would be hard to be dismayed while drinking this marvelous Pauillac.”
I sipped the 1990 Haut-Batailley. It bloomed in my mouth like an origami rose, structured, geometric, and precise. “Your attitude to negotiations wasn’t always so relaxed. Was it?”
She sat up straighter. “When I was young it was all about winning, about making the other do what I wanted. But sometime in the last ten years… Well, I changed.” She didn’t look at Eric, but I got the impression their feet were touching under the table. “Now instead of charging at people, sword drawn, I find it much more enjoyable and productive to run alongside them, learn their stride and rhythm, whether or not we could run together in the long term. In the course of my discussions with the software company, I found that our basic philosophies were radically different, and although I could have found a way to negotiate an agreement, it would have been temporary and unsatisfactory to everyone. The government would have ended up wasting years of various departments’ time trying to enforce an openness that the company simply wasn’t capable of offering. My recommendation will be that all contracts be terminated and the state move to adoption of open source code. In the long term, it will save time and money.”
After the egg came oxtail soup, which reminded me of the lentil-and-chicken -liver soup I’d eaten with Dornan.
“In the long term, one needs true partnership for a relationship to endure. Common interests, common goals, common expectations.”
It was clearly a prepared statement, a preamble to her main point.
“Your little girl, Luz. You would risk a great deal on her behalf.”
“I would.”
“You might even risk sacrificing her goodwill in the short term in order to discuss the prospects for her long-term happiness.”
“I’m prepared, Mor. Just speak.”
“This is very difficult.”
Eric leaned forward. “Your friend has recently been diagnosed—”
“Her name is Kick.”
“Kick has recently been diagnosed with multiple sclerosis.”
“Yes.”
“It is a very unpredictable disease.”
“Yes, it is.”
“What do you know of it?”
I put my spoon down and looked directly at my mother. “Perhaps you should tell me what it is you think I should know.”
“Like any mother, I am only concerned for my daughter’s happiness.”
“I am happy.”
“Yes, but for how long?”
“How long will you and Eric be happy?”
“I don’t know,” she said, and now I was certain they were touching feet beneath the table. “But neither of us has an incurable disease. I… please, Aud, I feel the need to speak.”
I could take one last sip of the lovely wine, remove my napkin, drop it on the table, say good-bye, and walk away. But there were tears in my mother’s eyes. She was not managing me, not negotiating. She was pleading.
“…know that you’ve heard my concerns. And after that, no matter what you choose, you are my daughter, and I love you. I will respect your choices.”
“Good. Because they’re my choices. And MS might be incurable, but it’s treatable.” Silence. “Wouldn’t you agree? Eric?”
Eric looked troubled. “The efficacy of most treatments is as variable as the disease course.”
“There’s a lot of research. You should know that. You’ve been working with those biotech companies.”
“Research is… well, I wouldn’t say this to anyone that wasn’t family but, frankly, there are a lot of lies.”
“I’ve read the studies. Someone at Kick’s stage can be helped.”
“The most optimistic information we have is that thirty or forty percent of people with the very early stages of MS can achieve a thirty or forty percent reduction in the deterioration of their disease.”
After a long pause, I said, “That’s not what I understood from my reading.”
“That’s not what the drug companies want you to understand. The drug companies want you to hope. Forty percent sounds wonderful—it sounds as though everyone who injects themselves with these rather far-ranging immunomodulators will get forty percent better, which is worth all the money, and the side effects, and the pain, and the inconvenience. But I wouldn’t play those odds at a craps table.”
“I didn’t know you played craps.”
My mother made a rare gesture of impatience. “Dice games are not the issue.”
“Fine. What is the issue?”
“Money,” Eric said. “Money and the lies and false hope it breeds. The pharmaceutical companies cast a rosy tint over their research pipeline and their products and their clinical trials. Consider this. All of the current recommended treatments for MS were developed under the orphan disease umbrella. It means there are tax advantages, government grants, and non-competition clauses. An orphan disease, strictly speaking, is one which fewer than two hundred thousand Americans suffer from. Most medical authorities would acknowledge that there are closer to half a million people in this country with MS. There is some evidence to support the opinion that there are very many more than that. Yet the drug companies have found their way around legislation. Preying on the hopes of ill people and their loved ones is easy in comparison.”
“You have obviously spent a lot of time researching this. I appreciate your concern.” I picked up my spoon.
“Aud, Kick’s life may be measurably shorter than yours. She will need a lot of… help as the years progress.”
“Not necessarily. There are people who, ten years after diagnosis, are absolutely no worse than they were before.”
“And those people are unlikely to get worse. Yes,” Eric said. “All true, but—”
“But are you prepared to wait ten years to see?” my mother said. “Aud, she is ill. You will always be the strong one, the healthy one. Partnerships should be equal. You can protect her, yes, but shouldn’t she also be able to protect you?”
Kick, protect me?
“It is more than likely that you will come to resent her because of that, and she you for being healthy.”
I skimmed a spoonful of liquid from the surface of my soup. My hand was trembling. Interesting. I breathed gently. The trembling stilled. “It’s already been pointed out to me that illness is not pretty, it’s not romantic, it’s not easy.” My spoon jerked, and dumped congealing soup back in the bowl with an audible plop. The spoon slid under the warm liquid and one perfect globule shone on the white tablecloth. The same reddish brown as drying blood. “I understand what I’m doing.”
“Do you? Illness can crush hope. It can crush intention…”
A server appeared with a fresh spoon, but I shook my head and gestured for him to take the bowl away.
“…times when illness can be bigger and stronger than we are.”
I focused on that perfect brown-red hemisphere on the white tablecloth. It was slowly sinking into the linen, spreading, losing its shape and focus.
“Aud?”