Unlocked: An Oral History of Haden’s Syndrome (6 page)

Then they decided they’d seen enough and put the top of my skull back on, after they placed the neural network in my head. They told me that the network had tendrils that would bury themselves in my brain but that I shouldn’t be able to feel them, so I shouldn’t worry about them. That wasn’t exactly a lie. I couldn’t feel the tendrils as they dug into my brain, but every once in a while it was like one of them would hit something, and I would get a huge rush of feeling or sensation. One time my field of vision went entirely green for like an hour, and another time I suddenly started smelling oranges. Another time I had about a minute where it felt like someone put a branding iron straight up my backside. It didn’t last very long but when you’re feeling something like that, time stretches out.

After about a week of this I guess everything was where it was going to be, and they told me they were going to turn on the network, and that if everything worked then I would be seeing through a camera they set up on a desk, and that I would be able to talk through a speaker. Then I felt something like an electric shock and I could see myself on the bed, bald, with this ugly scar across the top of my head that made me look like Frankenstein’s ugly cousin. And I thought,
Jesus, I look like shit
, and suddenly I heard the words I was thinking, coming through the speaker. The network was reading my thoughts. I realized I was going to have to be careful with what I thought until I could actually control myself. And then
that
came over the speaker.

Then I started to talk to anyone who was in the room because it had been so long since I could talk to anyone about anything. I was just asking people’s names and what they were wearing and about their kids and their pets—it didn’t matter because I could talk again and it was the best thing in the world. After a few minutes of this I got a weird itch on my face and it took me a couple of seconds to realize that I had tears and they were just, like, pooling on my face because I was lying down and not able to wipe them away. I had to ask someone to wipe them for me.

It was amazing. The most amazing thing. It was like being born again. It was like being free.

Summer Zapata, Author, “The Silent Revolution: Technology in the Wake of Haden’s Syndrome”:

The development and rapid production and installation of the neural networks was obviously the first big event in the technological history of Haden’s. We spent what some not incorrectly felt was an appalling amount of money, and arguably abandoned medical morality, to develop the networks, but at the end of the day it got done, the proof of concept was there and suddenly two dozen companies, some established, some start-ups, were in the neural network business.

But the neural networks were only a partial solution. The networks gave Haden’s sufferers their ability to communicate again with the outside world, but their bodies still didn’t work. They still couldn’t move. They were still trapped. And in many way they were still terribly isolated.

The federal government threw billions into medical research trying to get brains to talk to the voluntary nervous system, or to grow new nerve connections, but none of that was progressing at a rate that anyone was considering satisfactory. This opened the door to a left-field solution that absolutely no one saw coming.

Rebecca Warner, Chairwoman, Sebring-Warner, Inc.:

Charlie Sebring and I knew each other growing up, but not all that well, since he was a class behind me in school and we ran in different circles. I was the stereotypical student government type and he was a classic nerd. When I graduated I went to Brown and he went to Rensselaer and I didn’t see him again until the summer before my senior year, when he and I both interned at GreenWave, which my father owned. I got an internship in management, while Charlie was down in engineering. Until I caught him making things in the printers, I pretty much didn’t have any contact with him.

My internship was mostly just for show because I was the owner’s daughter and we all know how that goes. On one hand I was irritated with this because by this time I knew I wanted to run a company, and I didn’t like people thinking I wasn’t a serious person. On the other hand I really wasn’t a serious person at the time, and I spent most of my time planning my summer evenings. So I couldn’t complain that they give me a bunch of chumpy tasks that a monkey could do.

One of the chores I had to do was to prepare a weekly efficiency report for the GreenWave’s printers. GreenWave handled a lot of bespoke production jobs for design studios and small manufacturers—everyone has their own printers but they weren’t designed for large-object jobs or jobs that required more than a couple of dozen copies made. GreenWave manufactured industrial-scale printers and also kept a manufacturing wing open to handle work from other companies. Our printers were good but they were finicky and prone to breaking down, so we tracked their efficiency, and every week I compiled a report for the CTO. It was dead simple, especially since each of the printers imported their data into a spreadsheet automatically. All I really had to do was press a button to print it out.

So every week I printed them out. Most weeks I didn’t look at them, but one evening I was out with friends and remembered that I forgot to do the spreadsheet, and I didn’t want to be known as so inept that I couldn’t even do that. So I left the party early —11pm—and went back to the office to run off the report. As I was collating the paper I actually looked at the report and noticed one printer had a weird usage pattern. It usually went off-shift at 10pm, which was the end of our second shift, but every day in the last week it was active between 11pm and midnight. So I pulled up the real-time monitor and saw the printer was running right at that moment. I went down to the printer floor to see what was going on and there was Charlie, printing out something that looked like a hand. He looked very surprised to see me.

Naturally, I asked him what he was doing. He said he was doing some last minute client work, so I said, fine, so show me the work order. We didn’t do anything at GreenWave without a work order. Then Charlie got a panicked look in his eye, and that’s when I realized whatever he was doing, he wasn’t supposed to be doing it. So I decided to get tough with him and told him that he could either tell me what he was doing, or he could tell his boss the next morning, with me providing the spreadsheet as incriminating documents.

Charlie gave in and told me he was making a prototype. Great, I said, a prototype of what? And he explained that he had been following the development of the neural networks they were making for the Haden’s syndrome people, and realized that even if they got the networks to function, people would still be stuck in bodies that didn’t move. He was building a machine that would integrate with the networks so that people would be able to walk and move and get out in the world.

I asked him to tell me more, and we spent the next five hours going over everything. GreenWave had access to the Haden research database because we contracted with GE for elements of their neural networks, and Charlie had been keeping up with the neural network development. A lot of research money was going into biological solutions to fixing Haden bodies but almost nothing for machine solutions—the closest thing was an old design of a scooter with a large tablet sticking up on a post. It gave minimal mobility but no ability to hold or grasp objects or interact with people in a way that didn’t feel like, well, you were a scooter with a tablet on it.

What Charlie was prototyping was much better: An actual body with touch input, shaped like a human body and with all a body’s capabilities. It was a robot, but instead of a robot brain, it had a human brain controlling it. It would be a new body. One that wouldn’t get tired or ever get sick like the Haden’s victims own bodies would.

Charlie kept going on and I honestly didn’t understand more than about twenty percent of what he was saying. But when he was done I did two things. The first thing I did was I went and put that spreadsheet through the shredder. The second thing I did was go into my dad’s office the next morning and told him I wanted every penny of my trust fund right now, and if he didn’t give it to me I would tell mom about his affair. And his other affair, too.

When dad agreed to that, I immediately rented the use of the printer Charlie had been working on. Then I marched down to the printer floor and told Charlie to quit his internship, he and I were going into business, full partners. And he did. I took a picture of the two of us right after to commemorate the moment. He looked dazed, like he just got hit by a truck.

Summer Zapata:

On paper, Charlie Sebring and Rebecca Warner didn’t look they should work together at all. She was extroverted, aggressive and business-oriented, and he was classically introverted and focused on the project, almost to the exclusion of ordinary bodily functions; there’s a rumor that one day Warner came into their office and poured a gallon jug of water over his head as a hint that he should go home and take a shower.

The one thing they had in common was a commitment to the vision of what they started calling “Personal Transports.” Sebring saw the practical need and had enough rigor as an engineer not to let his design wander off into the thickets. If you look at his first set of prototypes they were, from a design point, ruthlessly robotic—all function and no esthetic. He wanted Haden’s patients to be able to move. He didn’t care what they looked like as they did.

Warner handled all the rest of it. She kept up with the business end of the Haden Research Initiative Act and worked to exploit the gaping hole where the Personal Transports would eventually go. Warner’s congressman was on the HRIA budgeting committee; she flew into DC personally to lobby him to allocate funds to biological solutions to Haden paralysis, rather than mechanical solutions. She knew that if federal funding started actively moving into her field that the project she was funding out of her own trust fund was going to get swamped.

And it worked; that year’s HRIA allocations were heavy on biology and very light on mechanics. It helped that several very large pharmaceutical companies were also lobbying heavily for biological solutions, of course. But Warner’s personal touch didn’t hurt.

Warner also handled the esthetic aspects of the Personal Transports, driving Sebring to make them as attractive as possible before they showed them to the world. She was also the one who devised the company’s publicity masterstroke.

Rebecca Warner:

They call it a publicity masterstroke but what it really was, was paying attention. The two most famous Hadens in the world were, in order, Margaret Haden and Chris Shane, Marcus Shane’s toddler. They were also the two most well-connected Hadens, since once the networks were approved for general use among Hadens, they were very likely going to be two of the first people fit with them. Which meant, honestly speaking, that if we wanted to show off our wares, it made sense to work with them. So I told Charlie to make two very specific prototypes: One designed specifically for Margaret Haden, and one specifically for Chris Shane. I wanted them ready for when both had their networks installed.

The first Margaret Haden prototype Charlie took things too literally and tried to make it look like Margaret Haden, including a representation of her face. It was creepy. There’s a concept called “the uncanny valley,” in which something that’s almost but not quite human is repulsive because you’re so very aware of it being fake. This was that. I pulled him away from that direction and gave him some design points. In particular I pointed him at the female android from a very old film called
Metropolis
and suggest he use that as a starting point, although he should probably dial back the overt sexuality. Margaret Haden’s public image was fit and healthy, not sexpot. It took him six tries, but he got it. Chris Shane he got in one. Children are easy.

I had developed a good relationship with [Ohio District 8 US Representative] Ed Curtis, because of his position on the House HRIA committee, and I knew that he and President Haden were friendly, so I asked him to call in one favor from the President. He was skeptical but I eventually convinced him. Ed came through and Charlie and I got an audience with President Haden where we showed him photos of the personal transport and video of it in action, being remote piloted by Charlie, and told him that a prototype was ready for the First Lady, tuned to the type of neural network I knew she had in her head.

What we hoped for was that he would be interested and that we might be able to show the prototype to him, as part of a process to getting whatever approval we needed to have the First Lady to eventually use it. But after we explained the thing to him, he looked at me and Charlie and said “Is it here?” Meaning the prototype. And it was, since we had put it in the back of a rented panel van that we drove from Ohio. So we told him so. Then he asked “Is it ready?” Which took me a minute to realize that he was asking whether the First Lady could use it
now
. As in, that minute.

I had no idea how to answer that. I wasn’t expecting that question. President Haden stopped looking at me and looked at Charlie, who, bless his clueless heart, said “It should be, sure.”

Five hours later we were in the West Bedroom, where the First Lady’s body and medical team were, prepping the prototype to sync with her neural network.

Janis Massey:

I thought it was a bad idea. The President’s Chief of Staff thought it was a bad idea. Mario [Schmidt, Head of the Presidential Secret Service detail] nearly had a stroke trying to argue the President out of it. But the President wouldn’t be talked out of it. The only person who possibly could have talked him out of it was Margie herself, but she was willing, although it seemed to me more for her husband’s sake than her own.

The personal transport was wheeled in on a gurney, along with a power source on a second gurney. I asked how it was supposed to work, and Charlie Sebring said that pretty much all the First Lady had to do was connect the thing to her internal network and then it would be under her control. Mario made a final objection that the personal transport could be dangerous or introduce viruses to the First Lady’s neural network. Rebecca Warner said, more than a little peremptorily, that she and Charlie Warner would be absolutely stupid to try to give a First Lady a virus in the White House, where the Secret Service could shoot them both dead at point blank range. As I said, peremptory, but she also had a point.