THE RIGHT TO BEAR ARMS

The Right

to Bear Arms

2013

I’m sitting in a hotel lobby, scribbling some last-minute notes in my notebook before the interview. I look up and notice Guðmundur Felix Grétarsson entering so I raise a hand to let him know I’m here. He waves back, and I get up to greet him. He shakes my hand, and I introduce myself before he points to a small room where we can chat undisturbed. Nothing about this exchange feels remarkable to me, but Guðmundur Felix has a different perspective.

1998

Guðmundur Felix was working as an electronics engineer. He had two daughters, a four-year-old and another only three months. On January 12, he set out to do some work on a high-voltage transmission line. The line he was supposed to be working on was powered off, but on that fateful day, Felix reached out and touched a line that was very much powered on. Shocked by 11,000 volts, he fell 8 metres [26 feet]. He broke his back, fractured his neck, his ribs came loose, and his arms were set on fire. When he woke up, both his arms had been amputated at the shoulder.

Words by Gréta Sigríður Einarsdóttir Photography by Golli

The Right

to Bear Arms

Drinking and using drugs to numb the pain was the destructive path Felix walked after his accident. “All of a sudden, I was faced with a life that I didn’t want to live,” he says. “Everything was gone. My relationship ended soon after the accident. Everyone around me was exhausted. I went from being this guy with a good job and his life ahead of him to being a helpless loser overnight. There came a point when I had to have a liver transplant to save my life, but I wasn’t eligible because of my addiction.” “There’s no such thing as a short version,” Felix says when asked

how he ended up in France two decades later, before launching into his tale. “I lost my arms in January 1998 but already in September, the team at the Lyon hospital performed the first successful double hand transplant. When you lose your arms, you keep an eye out for this kind of news.” Dr. Jean-Michel Dubernard was a pioneer in his field and the operation made headlines all over the world, but Felix didn’t speak any French. Later, one such operation was performed in China as well, “but I didn’t speak any Chinese either,” Guðmundur chuckles. “So when they perform a similar surgery in the US, a hand transplant, I reach out to the team who performed the surgery. That was in 2001.”

2013

2001

A hand transplant is as complicated a process as it gets. The operation itself, where a horde of surgeons carefully stitch together skin, muscles, tendons, veins, and nerves, is only the first step. A potent drug cocktail of immunosuppressants is administered so the body doesn’t reject the new body parts, and the recovery means that nerves start to regrow, from the stitches and into the new limb, at glacial speed: only 1 mm per day. While waiting for the nerves to reach the muscles they should control, there’s the risk of atrophy due to inactivity. What Felix was asking the American doctors to do meant waiting for the nerves to regrow the full length of an arm. The likelihood of success was slim.

“I wanted the surgery so bad,” Felix tells me, “but nobody was doing anything of that scale at the time. Hands, sure there is such a short distance that the nerves need to grow, but a whole arm – forget about it. In the two years it would take, there wouldn’t be any muscle left in the hands.” So the American doctors politely brushed him off.

2007

Six years went by. Felix beat his addiction and had his liver replaced. He went about his life, learning to operate a car using his feet, to scratch his face by rubbing it against something, and drink from a straw. Then, a French culture festival in Reykjavík invited Dr. JeanMichel Dubernard to give a lecture at the University of Iceland. “I saw him on TV. I just started making phone calls all over town to find the guy. I called every hotel in the city until I found him at Hotel Holt and he agreed to see me.”

While Dubernard had the same misgivings about Felix’s case as the other doctors who had rebuffed him, he didn’t say no. “When everyone else had said ‘this isn’t possible,’ he said ‘I don’t know if this is possible. But whatever the answer is, I want to be able to give arguments to support it.’” So, in 2007, Felix dove head first into gathering his medical files. The next step was to translate everything into French. “I found some certified translators but they wanted to charge me an arm and a leg, so I went to the Ministry of Health. They said this wasn’t in their jurisdiction: they didn’t help with experimental procedures in other countries. Every door was closed until an acquaintance reminded me that Vigdís Finnbogadóttir used to be a French teacher before she became President. So I knocked on her door.” Vigdís connected Felix with a French paediatrician living in Iceland who was willing to help. With all the data sent to France, Felix waited for an answer.

2011

Felix is asked to come to France for further research. By that time, Dubernard was no longer the head of the team: he had retired and been replaced by Dr. Lionel Badet. Felix jumped on a plane for his first visit to Lyon, spending a week in the hospital where, he says: “They checked everything.” The results were promising, and next spring, Felix went for another week to be poked and prodded. By this point, the trips and hospital stays are taking a financial toll. When interviewed about his foot-operated car, the journalist presents a

solution. She would start a charity in his name. “I decided to run 10k in the Reykavík marathon. About 200 people ran with me to raise funds, it was an amazing experience.” While the credit card debt was now paid off, Felix was still waiting for an answer on whether or not the French doctors would perform the operation. “In September, I get an answer: ‘We’re ready to try this.’”

The doctors weren’t promising a miracle cure. They were describing a complicated surgery with a long recovery time and an intense rehabilitation process, for a slim chance of success. “Much like all other doctors, they didn’t know if the operation would work or if the nerves would grow, or if I would be able to do anything with the hands afterwards.” But there was a plan B. “There’s a muscle called the latissimus dorsi, on the sides of your back. When I first lost my arms, I had a stump and the doctors could use part of that muscle in

“I look like a person again.”

place of a bicep, so I could move my elbow.” The doctors told Felix that if worst came to worst and the nerves wouldn’t grow, they had the option of repeating that operation on the right so he could at least bend the elbow and give him an option of better prosthetics. “Prosthetics need something to attach to. As it was, I couldn’t really use any.” With that option on the table, to Felix, the gamble was worth it.

For the doctors, one event from Felix’s medical history helped convince them. “An operation of this scale is dangerous and one huge risk factor is that all transplant patients, be it organ or limb replacements, need to take immunosuppressant medication for the rest of their lives. This drug, is, well, it’s poison, really. It keeps your immune system down, making it harder for your body to fight off infections and diseases. But I was already taking them because of my liver transplant.” Putting someone on immunosuppressants for life is not something you do lightly when the chances of success are so slim, but now, that wasn’t an issue. “As much as I felt sorry for myself when I was going through that liver transplant, it turned out to be a blessing in disguise.”

2012

Around Christmas, Felix gets told that in a few months’ time, he might get put on the transplant list. So he moved to Lyon. “The doctors warned me it might be a little premature but I wanted to find a place to live and get settled.” The next autumn, preparations began. “They needed to custom build an operation table and braces, prepare the whole team, and so on. But then everything grinds to a halt due to bureaucracy. “Such a surgery had never been done before, and the French authorities are super strict on regulations and procedures. They needed to rewrite tissue transplant regulations, taking my case into account. Every time they made changes, the institutions have six months to review the data before they approve

them. If it’s not completely accurate, you need to go through the same process again and wait another six months.” In the autumn of 2016, all i’s dotted and t’s crossed, Felix was put on the transplant list. Now the waiting begins.

2013

2016

“I’m waiting for a phone call around the clock, always careful to keep my phone on me. I don’t take a vacation or travel too far from Lyon.” This is the case year-round except for six weeks in summer, when Felix is taken off the transplant list so his team of doctors can take a vacation. Then he gets a call. “At least three times, I got the call that they’d found a match. But in France, while everyone’s an organ donor unless they specify otherwise, the same doesn’t apply to limbs. You always need special permission from the loved ones.” Even for Felix, that’s understandable. “The worst day of people’s lives isn’t the time to wrap their heads around something like an operation that’s never been done before. Of course, if you don’t get an organ transplant, you die, it’s a life-saving operation. You can survive without a limb, but your quality of life isn’t the same, and the effect an operation like this can have, there’s no way to describe it. It’s the difference between being alive and having a life.”

The first time he got the call, he was elated. “I thought it was finally happening. Then I got another phone call telling me ‘Sorry, family said no.’ The next time it happened, my hopes were a little more muted. I thought ‘here we go again.’” By this point, it had been 23 years since Felix lost his arms and he’d been living in France for eight years. He’d met his wife Sylwia, they’d gotten married and gotten some dogs, and moved into a small apartment in a renovated 18th-century mansion on the outskirts of Lyon. “The thing about waiting is that time passes, whether you’re waiting for something or not. France is a great place to live and waiting is a lot easier that way, even if it’s always at the back of your mind.”

2021

At 9:00 PM on a January night, Felix gets the long-awaited call again, telling him the hospital would know more the next morning. “And on the morning of January 12, 23 years to the day of my accident, I get the call telling me to get to the hospital and get ready,” Felix tells me. It was happening. “Then on the morning of January 13, a team of 50 people screwed on my new arms.”

It was a 15-hour operation. And just like he had been promised and prepared for, that was only the start of it. “I’ve gained so much already and feel thankful every day but my God, it’s been hard. When I got my liver transplant, I was very sick. But as soon as I got the transplant, I felt so much better. This time, the surgery was just the beginning.” The pain is greater than he had imagined. “The first seven months were almost unbearable. The doctors connected nerves and veins, muscles, tendons, and skin. And this is all hanging from your sutures. Then when the nerves start to grow, they’re inside some sheaths. And that hurts like a m*****f****r because as they grow, they rub up against the walls.”

The doctors cautiously estimated that the nerves could take up to two years to regrow. In nine months, however, Felix could feel his hands. “We’re seeing much better results than people were even hoping for. They were keeping their expectations low, of course, making sure I didn’t have sky-high hopes. But the success is incredible.”

“What you don’t realise is that when you lose your hands, you don’t touch anything and no one touches you. It’s like you’re living in a bubble.”

Felix is careful not to take the credit for everything on his journey, praising and thanking all the people who helped him and cared for him along the way. “I owe them so much, this isn’t something you do on your own.” His mother moved to France with him to take care of him, his wife and his father have shown immense support. “I’m so lucky in my friends and family. No matter how crazy my dreams were, they were with me all the way. Now that I can do more, my mom doesn’t need to take care of me as much. My father died this January, and they lived apart for 8 years because of this. But before he passed away, he saw me get my arms.” He also shares his success now with others. “I’ve been receiving message from all over the world, from every continent. From people who have lost limbs, or have loved ones who’ve lost limbs. All of a sudden, there’s hope. And that’s incredible to me, because I know what hope can do. All I had was one tiny note from a doctor who didn’t say no and that kept me going for years.”

2022

So how have new arms changed Felix’s life? “What you don’t realise is that when you lose your hands, you don’t touch anything and no one touches you. It’s like you’re living in a bubble.” Parent to an infant and a toddler at the time of his accident, hugging his children is what he missed the most. “All of a sudden, all that was gone. You just stand there and can’t do anything. And being able to touch things, hug my children and grandchildren again, this is just…” Felix trails off.

Then there’s his independence in everyday life. “I can take care of my own hygiene, brush my teeth, and go to the bathroom on my own. I can dress and undress myself, take a drink from a glass without a straw. I can eat with a fork or a spoon. When you’ve had to rely on other people for every little for years, these small things aren’t so small.” Finally, it’s a matter of self image. “I look like a person again. I can move my hands when I talk. I can scratch if I feel an itch. I can wear a watch!” Felix now enjoys using a smartphone without having to operate it with the tip of his nose or his tongue, making it very difficult to see the screen. “I can use things that are a matter of course and normal to most people, that up until a few months ago, I wasn’t sure I would ever be able to again.”

NOW

While he’s had remarkable success, there’s still a long way to go. “There are so many muscles in a hand that we never give much thought. Bending a finger takes one set of muscles but straightening it again means using a whole another set. At this point, I can’t straighten my fingers unless I push on the other side to support the muscle in the wrist.” Every week, Felix discovers new things he can do. “I held my dogs, that’s the most recent thing. I can clean the house: I put on a washcloth and pick up a brush and clean the house like a whirlwind. I tried drinking from a glass for the first time at the airport on my way here. When you haven’t been able to do it for years, it’s very different. Most people don’t think about scratching when they have an itch. You don’t know how many times you’ve scratched your face today. But not being able to do it and then being able to do it again, there’s nothing like it.”

My mind is still stuck on all the waiting. I ask Felix what he would have done if he had known how long the whole process would take. He answers without hesitation: “Just what I did when the accident happened, dive head first into addiction. We all learn as we grow older, but I had to learn a lot faster. Either I stopped feeling sorry for myself and shoulder some responsibility or I was staring into the bottom of a coffin.” When Felix was at the point when he needed a new liver, he’d been, in his own words, wallowing in self-pity for about three years. “I wasn’t really suffering from the results of the accident anymore, I was suffering because I didn’t want to come to terms with what had happened to me. All my misery was self-made. When I realised that, I also realised that I could change it. I could do plenty of things but I was laser focused on the things I couldn’t do. Life is easier this way. You see so much clearer. I didn’t want to get a liver transplant but if I hadn’t, I wouldn’t have arms.”

As I say goodbye to Felix and walk out into the sunlight, I lift my hand to block the glare, then catch myself absent-midedly scratching my nose as I walk down the street.