The Measure of a Life

Celia was crunching numbers, calculating the dose of an antibiotic for a tiny little patient of hers whose ear infection would just not go away. She did it twice because she knew she was distracted and didn’t want to make a mistake. Doing mundane things was so difficult these days– there were more consequential things going on in her mind. But not so for little Elise, whose ear pain was keeping her up at night, so Celia checked once more and ordered her treatment before leaving the nurse’s station.

She stopped as she walked through the living area and visited with a few of her young residents. Mohamed was her favorite, though if asked she would deny having a favorite. He had come only days after his 3rd birthday. Celia wondered how his mother could bear to place him at such a young age, but she was a single mother with other children, and it wasn’t Celia’s place to judge. The family visited weekly.

Admission was possible at 3, but most families didn’t place their children in residential care till they were older. Not that there were concerns about the quality of care–each child had a one-to-one staff during all waking hours. If there was any fault to be found it would be that caregivers were a bit indulgent. Celia understood the need for their shortened lives, but 25 years was not enough. She whispered the nation’s mantra, “Quality not quantity.” She agreed, but it was a bitter pill to swallow.

The nation of Renaissance was predicated on a simple construct: there are limited resources in the world, able to provide a high quality of life to only a limited number of people for a limited number of years. This was not a controversial concept–it had always been true. The poor people of the world lived meagrely and died young, which balanced the rich, long lives of the affluent. An accident of birth determined whether you would die at 15 by a gunshot in Chicago, or at 90 in a resort town on the French Riviera; at 7 in a Lithium mine in Zimbabwe, or 80 in a penthouse in Qatar; at 25 of a drug overdose in a Brazilian slum, or 25 of a drug overdose in a beach house in Malibu. Drawing the short straw upon birth determined everything.

Renaissance asked citizens to reimagine this disparity. What if we really believed that all people are created equal, and have a right to their fair share of the world’s resources? What if all contributed equally? What if we gave up a life span of 75 years spent struggling to get by, for 45 or 50 years of thriving? Who would be willing to try?

As it turned out, many people. Renaissance was born 28 years earlier, occupying most of what used to be New England. That first year, Guaranteed Life Span (GLS), the number of years the population of the nation could be sustained comfortably without depleting natural resources, was determined to be 45.6 years. After 28 years it had grown to 57.3. The great experiment was hailed as a success by the people of Renaissance and much of the world. The leaders of Renaissance, who in the beginning ran the country like a business start-up, hoped the utopia they were creating would redefine the future of Earth. 

Celia finally escaped the little hands who tried to hold her captive and made it to her office, her mind clearing and becoming more focussed as she walked. She needed to be ready for a serious discussion with her husband tonight, with a rational mind not clouded with emotion.

She opened her laptop and pulled up the actuarial tables on one screen, the provisional research data on the other. The study ended today, but it was unlikely the results would vary much from those she’d been given. She tilted the screens away from the door–if anyone saw what she was doing she could lose her license. Scientists were expected to stick with the facts regardless of the consequences of the truth.

Her phone rang and she took a minute to speak to Jillian, her sister, who had a cute story about her daughter Katlyn.

“She’s a hoot,” Celia said when the story ended, “I can’t wait to see her Sunday. Give her a kiss from Aunt CC. I have to go, working on Tristan’s research.”

“Ok, Sis, just make sure the numbers all go in the right direction.”   

She looked from screen to screen, contemplating multiple scenarios–what would happen to GSL if the success rate was 30%? 50%? 70%? As she watched the GSL number slide down with each supposition, she was filled with dread and shame. She was a doctor for God’s sake! How could more effective treatment ever be a bad thing? When it shaves years off the lives of people you love, she answered silently.

Her eyes wandered off the screens to the photographs of Mohamed and others on her desk. Where would the world be without Dysfunctional Cognitive and Motor Syndrome (DCMS)?  It appeared 20 years ago, with an incidence rate of 1:500 births. A few years later, it jumped to 1:200, then 1: 50, and was now about 1:30. The world was losing the talents and contributions of millions of people, which meant the GSL for Contributing Citizens had risen to allow the productivity needed to sustain the population, and the GSL of Non-contributing Citizens would stay at 25, the age at which development was complete, and which Leadership had deemed the birthright of all citizens. 

And now, the country’s belief system was about to be tested.

                                             ***********

At home, Tristan and Xavier were engaged in a one-on-one game in the driveway, which, despite Celia’s protests, became a three-person game of 21. Xavier easily won, and as his ball slipped noiselessly through the net, Celia bolted to the door for a few minutes of peace before dinner. Her mood was lighter–she was lucky to have Tristan, with his playful, optimistic nature to balance her intensity. Fortunately, Xavier took after his dad.

Dinner was last night’s Lasagna, so it was finished and cleaned up quickly. Xavier took his homework to the bedroom, and Tristan and Celia had no choice but to tackle the weighty topic of his DCMS study. Tristan was in charge of the largest pharmaceutical study to date testing Neuroxitin, a neuro facilitator that no one expected to succeed.  Dozens of others had not.

Tristan poured two glasses of Cabernet and sat on the ottoman facing Celia. His voice was low, almost a whisper.

“So, the news is good. Even better than we thought. There needs to be more analysis, but it appears that 33% of the people in the sample had a full recovery from all motor deficits and a significant improvement in cognitive delays. This group could probably be considered Contributing Citizens. Approximately 39%  had significant improvements. They would benefit from increased autonomy and quality of life, but would likely still be Non-contributing. The remaining group showed little or no improvement.”  

His voice did not sound like it conveyed good news. His face was tense, and he reached out to take Celia’s hand. The two sat in silence for a few minutes. 

“I did some quick estimates,” Celia said quietly, “I think that translates to about 2.5 years.”

Two and a half years of what? Of a million grandparents missing out on their grandchildren’s weddings. Of lost paintings from artists, books of authors, concerts of musicians. Of the much-needed counsel of parents for adult children going through middle-aged stresses. A loss of 2.5 years of life was unfortunate for one person, but for a generation, it seemed tragic.

For the millions of people with DCMS, it was a blessing. Their parents would have the joy of watching their personalities reveal themselves as adults, encourage their successes, soften their disappointments. Surely, people would understand that the tradeoff was worth it.

Celia cleared her head. “How long before improvement was noted? What is the cost of treatment? Was it sustained over time…”

Tristan laughed, “Ok, now that’s my wife! I was beginning to worry.”

They spent hours pouring over the documents, excitement growing at the prospect of curing so many children. That was how it should be. They served people with DCMS, and their job was to act on their behalf. It was this clarity of purpose, to ensure that no one’s life was seen as more or less valuable than anyone else, that kept Renaissance united. It made the tough decisions clearer, even when they weren’t popular.

The anticipated findings had been kept confidential outside a very small group, but the clinicians treating DCMS were a tight-knit network, but word of the success was getting out, so excitement had been building for weeks. A formal announcement would be expected soon.

They made a list of questions that needed follow-up, finished their wine and went to bed.  Tomorrow would be the first of many weeks of meetings before a final recommendation would be sent to Leadership. If accepted, and their recommendations would be accepted, the information would be forwarded to the Actuarial Committee. There, a bunch of math nerds would use algorithms understood by almost no one to determine what the effect of adding 800,000 or so people, no longer limited by DCMS, to the Contributing Citizens group would have on GSL. 

Celia didn’t understand all the things that went into the computation. Finite resources, renewable resources, personal productivity, the savings of not having to pay the medical support for the children who would be cured. The data would be available for all to review, but few would. There was a grudging trust that the robotic actuaries would be unemotional and unequivocal, unfeeling but fair.

Celia went to bed numb. She knew sleep would be difficult, and after finding it impossible to still her limbs or slow her heartbeat, she reached over to Tristan and lost herself in his arms, letting her body succumb to the pleasure that drove out all other thoughts.

                                        *************

Celia stood in the living room and watched five little ones painting. They sat supported in chairs, belted in to prevent falling, trying to manage thick-handled paintbrushes into cups of paint and onto paper, with limited success. She tried to imagine them with the motor skills they should have at their ages, able to paint pictures that had recognizable features, sitting without supports, using words instead of squealing with delight. Her heart quickened as she thought of the life these kids could have. She imagined their parents welcoming them home, taking them to Little League on Saturdays instead of attending visiting hours. She smiled at the thought of it.

She went to her office through the back hallway, hoping to avoid some of the medical staff who would be on their first cup of coffee, looking over the night shift notes, and waiting to hear from the boss what she knew about the final results of the Neuroxitn trials. Her assistant saw her slip in and brought her a cup of coffee. Celia knew it was an excuse to dig for info–she never brought her coffee or did errands for her, nor would Celia ask her to. Equality in Renaissance meant that no one was more important than anyone else. It would be inappropriate to treat another as if his or her time was less valuable than your own.

She was finishing up the notes for her meeting when the phone rang and her mother’s breathless voice said, “Celia, are you busy?  I just wanted to check-in.”  

“I can talk for a minute. Are you alright?”

“Of course I’m alright. I’m on the treadmill, but I’m good. Four miles, trying for five. How is Xavier?”

“He’s good. He’s got a basketball game on Friday evening if you’re around.”

“I’ll try. You’re good?”

“Yes…Mom, I probably should tell you this. Word will get out soon, but please don’t say anything till it does. The medication trial that Tristan was working on was successful. It looks like they found a cure for a good portion of people with DCMS. We’re starting to work on recommendations today.”

On the other end, the noise of the treadmill stopped. Her mother didn’t answer immediately, then quietly asked, “Is it definite?”

“Yes, Neuroxitin cures DCMS. At least in quite a few people. About a third.”

Again there was silence, then her mother cleared her throat and said, “Well, I’m so glad for Theresa. Her grandson has DCMS. She will be so pleased. I’ll let you know about Friday. Love to all.”

Celia put down the phone and felt deflated. She had just told her mother that instead of having five years left, she probably only had 2. This was not going to get easier.

The meeting didn’t relieve her anxiety.  Her team had lots of questions, and concerns that had not really occurred to her yet. What if after reducing GSL for millions of people, the response to treatment was not sustained over time? How can we control the expectations of parents? While one-third of them will see their child thrive again, two-thirds will not, which may feel like losing their child again. The last concern was voiced by a parent of a DCMS child. Should the treatment be phased in over time to ensure decisions could be better informed? Was that ethical, since it would be withholding life-saving treatment? It was a draining meeting, with people as conflicted as she was. There were tears of relief and tears of grief. It was the answer to prayers and everyone’s worst nightmare.

Back in her office, she returned a missed call from Tristan. His day was about the same–now that the exhilaration of the success of the drug was settling down, the reality that everyone on the team had just cut their lifespans and that of all their family and friends had set in. If this was the reaction of ethical professionals, Celia wondered what to expect from the general public.

The last time anything remotely like this had happened was 8 years ago, when a change in criminal justice resulted in hundreds of thousands of non-violent offenders being added to the list of Contributing Citizens. The result was the loss of .9 years of GSL. It was a long time before the general public could accept it and move on. Fortunately, an improvement in the development of solar-powered mass transportation recouped about half of the lost GSL the following year, but the full .9 had just been regained recently.

As Celia moved through the program building, trying to show none of her own angst, she began to see two distinct groups forming- those with DCMS family members speaking quietly, with hope and fear in their faces, not daring to think their child might be the one in three who could be cured. Others, with no personal connections to DCMS, spoke about their parents, their own futures, the need to make changes in what they had expected to be their life plans. The belief in “Quality not quantity” was about to face its biggest test so far. And since the Leadership Team included a number of the original idealists from 28 years ago, for many of them, it would be very personal. It would be as if they were diagnosed with a terminal disease and given one year to live. Celia wondered how they would react. She had a great deal of respect for them-she expected they would demonstrate grace and dignity.

Back in her office, Tristan called again and sounded shaken. He had told his father the news, and he had become upset, alternately praising Tristan for his success, and worrying about his own future. He was older by a lot than his wife. Tristan’s mom had died ten years ago, and his dad had not found his new love until last year. The two realized when they married they would only have four years together, and had made a plan of how they would spend them. Now his dad thought they should never have married. He would be leaving her alone when she still had 8 years of vibrant life left. He asked Tristan if he thought he should divorce her to let her find a younger man. By the time they got off the phone both were in tears.

The GSL gave a sense of certainty to plans. While it limited natural lives, most lives ended before diseases and infirmities of old age had appeared, so plans were rarely interrupted, and most GSL adjustments were in months, not years. People had come to feel certainty about their last days.

On her way to her car, she stopped again to watch her kids and revive her spirits. They made all this worthwhile. She would do right by them no matter what, she promised as she turned to the parking lot.  

Her phone rang and she almost didn’t pick up-it was her mom. She didn’t know if she was emotionally in a good place for the conversation, but she took a breath and hit accept.

“Celia? It’s mom. I know you are probably busy now, but Jillian called me. Katlyn just stopped walking. Just dropped to the floor and started crawling! Do you think it’s DCMS? When she can start the medication?” Her mom’s sobs made discussion impossible, and she told her she would be right over. 

For the first time, Celia had an answer for Jillian and the other moms who would see their child lose the ability to walk, speak, bring a spoon to their mouth. She walked to the car with a new resolve. GSL would come back up, hopefully bringing Katlyn and others with it.

“Quality not quantity,” she whispered as she started the car. And in her heart, she believed it.