Matthew Ames adjusts to life without limbs after toxic shock

Raised in Fiji, Sydney and Ingham in north Queensland, Matthew moved to Brisbane at age 13 with his family and attended school at Anglican Church Grammar (Churchie) in East Brisbane. A bright young man, he went on to study environmental engineering at the University of Queensland, where he met his wife, Diane. The only son and youngest child of Roy and Christine of Morningside, also in Brisbane's east, Matthew spent much of his early life being the mostly willing slave to two older sisters, Rachel and me. He had travelled extensively, and was passionate about trying new things. Sitting still wasn't something he did easily.
A week prior to this admission to hospital in June, Matthew had been working as an executive with Origin Energy. Married at 22, he and Diane spent their first ten years together travelling the world seeking adventure. They'd climbed Mount Kilimanjaro in Tanzania, walked to Machu Picchu in Peru, and white-water-rafted in New Zealand. They renovated an old Queenslander in eastside Camp Hill, doing much of the work themselves. Then came Luke, now 9, Ben, 8, Will, 7, and Emily, 3.

Matthew's illness began with a sore throat, achy muscles and painful joints and when the symptoms didn't abate, he took a few days off work and sought treatment on a number of occasions. Following the onset of severe pain rendering him unable to walk, he was admitted to South Brisbane's Mater Intensive Care Unit on the evening of Wednesday, June 14, 2012. The following morning he was placed into an induced coma and on life support. His kidneys had failed, he had limited blood pressure, and his body was systemically toxic.
The following morning an infection site in his arm was opened and cleaned to stem the disease's progression, but this didn't work - and on Friday Matthew's left arm was amputated high above the elbow. This, however, didn't slow the speed of infection and his body was simply being overwhelmed. So it isn't unexpected, on this rainy Friday evening, when we are told Matthew will probably die before morning.
The next day, however, my brother is still hanging on to life. A medical team comes to the ICU visitors' room, where we have set up camp, and tells us although Matthew is putting up a mighty fight, he has no chance of survival unless we authorise the removal of his remaining limbs, which are dying and contributing to the toxicity in his body.
We need to make a decision, as a family, to render an unconscious Matthew profoundly and permanently disabled. We believe he would want us to give him that chance. "At the end of that meeting, it was quite clear what everyone wanted, which was for us to try to save him," says Tim McMeniman, one of four orthopedic surgeons involved in the operation to remove Matthew's limbs. "Matthew's wife Diane said that, for her sons and daughter, she couldn't live with the decision to let their father die. The evidence of the family support and reassurance we knew he would get meant that it wasn't a difficult decision in the end."
But for Diane, the weight of that decision was enormous. She and Matthew had been together for their entire adult lives. "We've always been such a united team. In 22 years of being together, this was the first major decision I have ever had to make without him," she says. "But I knew it was what he would want. It's what I would have wanted. To be there for the kids, and they really needed their father, no matter what."
Before Matthew goes into the operating theatre, we need to say our goodbyes. We're all in tears, heartbroken. The nurses share our grief, but Emily, then only 2, almost sings, "Bye bye, Daddy". She blows him kisses as though she is going to see him shortly.
The operation starts late in the afternoon, and it is close to midnight when a nurse comes in to let us know Matthew has made it through surgery. The mood is celebratory.
McMeniman recalls thinking, after the operation was finally over: "Well, this is the result, and I just hope he agrees with what we have done. This would be like a nightmare for him, an unbelievable situation to find yourself in, to go off to sleep and to wake up without your arms and legs."
It took three attempts over a period of three weeks to bring Matthew out of sedation, after which McMeniman expected Matthew to be angry, and counselled us to expect that reaction. "I would have been angry, at the situation, but he never has been," McMeniman says. "It was the biggest relief of my clinical career when he woke up and said, 'I'm glad you did this'. In Matthew's case, he has always been completely accepting of what had happened. He focused on what he had, and what he could do to improve his situation.''
Diane recalls she was extremely nervous about telling Matthew about what had happened to him. "I didn't get any sleep before the day we were going to tell him, but when the time came, I had so much support from our family and the medical staff. He couldn't speak," she says, "but he could nod. He just looked at me at the end [of what I told him] and I knew we had Matthew back. No arms or legs, but he was the Matthew I knew, and he was accepting."

REFLECTING NOW ON WHAT HAS HAPPENED, Matthew says he takes every day as a new day. "It really has been a sense of acceptance. There was a period of sadness when I was in intensive care, and that started when I noticed that the kids couldn't cuddle me much, and the looks on their faces every now and then. I could tell they were scared, and I couldn't talk. They'd be reserved and pull back." He says he managed this by being present in the moment. His first goal was to rid himself of the ventilator tubes in his throat that were allowing him to breathe. Then he would be able to talk and eat.
It was a long road ahead and Matthew's busy schedule meant he didn't have lot of time to dwell. Says Nurse Eamonn Maher: "Between medical visits, family, physio appointments, he was kept very busy, and by the end of the day, he was absolutely exhausted."
"Nursing Matthew pushed us all to the limits," Maher adds. "He had lost all four limbs, he was on full dialysis as his kidneys had shut down, and he had other issues. There's no book on how to nurse what he had but he was just always so polite and calm, and he never complained. Everyone fell under his spell."
Despite the challenges, Maher says he saw many signs that some form of normality would return to Matthew's life, such as "date nights" when Diane would dress up and watch a movie with him and have a glass of wine beside the hospital bed.
Matthew says the support of his family pulled him through. "Another night, my dad brought Luke in, with the aim of us watching the State of Origin. I think I slept between tries, but just knowing that everyone was there made a big difference," he says.
Our sister Rachel, an accountant, devised a system of communication by blinking, and gave us all pretty good instruction - except we were all a little bit too impatient. "I remember trying it, and lost count of the blinks after the first word," Matthew says. "It was a great idea, but I just resolved then that I had to be in a hurry to get off the ventilator to talk."

Combining medical recovery and rehabilitation was always going to be a challenge. Still on dialysis, Matthew needed significant physiotherapy to assist his breathing, and stump care was critical because it could affect the ability for prosthetics to be fitted at a later date.
The ICU team worked closely with staff from the Mater rehabilitation unit, and senior rehabilitation specialist Saul Geffen was introduced to Matthew a few weeks into his recovery. Geffen says he sought to be responsible for Matthew's rehabilitation after meeting him in ICU. "My heart leapt. I walked into that room, and I had the skills, and I knew I was the guy to do this," Geffen says. "I had once before in my career looked after someone with a four-limb amputation, and that was around 15 years ago and I was a junior then, not a senior. So in the initial stages - and Matt was barely awake - I just came and explained things to him, and I spent some time with his family at that point, and tried to be quite hopeful and positive."
Rehabilitating Matthew has involved mobilising a team of people, including physiotherapist Jacqui Wright. "It was a huge challenge," she says. "I focused on what he did have, which was his core. I always told Matthew exactly what I was doing, because he liked to know what was going on, and we worked together to design sessions based on what he wanted to be able to do.
"We simply had to focus on finding a way to do the most simple things," Wright says. "When we met, he had chronic muscular atrophy and was still very ill. He had to move his stumps, sit up, roll over. We just had to get him moving. We had a few setbacks along the way, which hit Matthew a bit emotionally, such as when his retina detached and he was immobile again, so we had to work around that.

"I actually haven't taken an annual leave day off since I started working with him, which shows you how much I love it. We've spent a lot of time crying, and laughing," she says.
Sessions in rehab with Wright gave Matthew a focus. He set himself specific goals: to be able to sit up, roll over, inch himself up a set of stairs, and finally walk on his new legs, which he achieved earlier this year.
"Jacqui has been incredible," Matthew says. "She knows when I make a particular grunting sound that I'm going to fall, so she leaves me to do [things] on my own until she hears that sound. We make a really good team, because I trust her, and she pushes me. I need that."
Saul Geffen says Matthew's positive attitude has been a huge factor in his rehabilitation. "He's literally one in a million," Geffen says. "Matt has handled an absolutely devastating injury and loss as well as I've seen anybody in my career handle anything. There's something peculiar and admirable in him that I haven't seen before; he has this capacity for self-control and optimism and effort that makes looking after him a pleasure and a privilege."

TEN MONTHS AFTER THE OPERATION, MATTHEW'S finally back at home, where the family is "camping" downstairs. They're waiting until a lift can be fitted to allow access to the upstairs area, which includes the kitchen, main bedroom, and lounge. Matthew hasn't seen his own room since he became ill. The car has been modified, and a ramp has been built at the back of the house to enable access.
Despite the improvised setup, there's a focus on routine. Between ongoing rehabilitation sessions at the Mater as an outpatient, Matthew helps get the kids ready for school and kindy, and tries to figure out ways to do things such as send emails with voice-activated software. He helps with homework and supervises cricket matches in the back yard. "It's important that he's around. His being here makes a difference to the children," Diane says. "While he was in hospital we would visit every afternoon, and we were very lucky that the kids could have sleepovers at rehab. The kids have always seemed to handle things well, but it's really been since he's come home that we've noticed how different they are. Ben, for example, had become a little withdrawn, but he's got his sparkle back now.
"We worry a little that their childhood has been taken away from them in a way, because they have to do more around the house to help. Our boys probably have more responsibility than they should have, but that's just the way things are.
"The children are proud of him. Will took Matthew to school as his 'show and tell' recently. He got Matthew to walk around on the floor, and it was really interesting to hear the story from Will's perspective. We got lots of questions, and the children in class were just wonderful."

MATTHEW'S DAUGHTER EMILY WANTS HIM TO play a game. "Hold out your fingers, Daddy," she says.
"But Emily, I don't have any fingers," Matthew reminds her.
Hmm. She thinks for a moment. "Okay, then. Hold out your hands."
"But Emily, I don't have any hands."
Another silence. "Okay, then. We'll play something else later."
At 3, Emily seems unfazed by her father's new body, and doesn't seem to notice what he can't do. She paints and draws with brushes and pens in her mouth, and when giving Matthew a cuddle, his arm stump is perfect for tickling her between her shoulderblades.
Unlike the boys, she will never know her father any other way.
While obviously some days are hard, Matthew says there is never a time when he regrets his family's decision. He has never been on antidepressants, and decided to take himself off painkillers early in his rehabilitation because he felt they were making his mind unclear. Since then, he's suffered from relentless phantom pain. "The ongoing pain level is around three or four out of ten," he says. "But it's all relative. Even squeezing a pimple might be a seven or eight for some."

He's conscious that he's become a benchmark for others who, once they see him, view themselves as lucky. "There was a guy in rehab who had lost part of his lower limb. At the time, I was still walking around on my bottom, and he told me that he liked it when I came into the gym because every time he looked at me, he felt so lucky. And that's fine that he felt that. I don't hold judgments against anyone. It's just human nature that people might want to stare at me or use me as a benchmark for how lucky they are. That's all okay."
Does Diane think the day will come that Matthew gives up? "No, I don't," she says, without hesitation. "He has too much to live for. While I stay healthy, and he has the kids to be involved with, then it won't happen. Matthew's very clear about what he wants for the next ten to 15 years, which is to be as involved with the kids as he can be. After that, it will be back to just the two of us.
"Life's difficult, but it's the new normal. It is what it is, and we make the best of it. We have had amazing support from family, friends and people we've never met. For example, there are 65 families at the local Catholic school, where the boys go, who are on a dinner roster. I can't believe that people have been so willing to fit us into their busy lives, but it has made a big impact, and I'm so very grateful."
Diane says she always thought the odds would fall in Matthew's favour. "When the doctors told me he had a 50 per cent chance to live or die, I thought he'd be in the 50 per cent that lived. And then when the numbers started to fall, I still thought he would be the one to be okay. Even when it was at one per cent chance of survival, I really did think he would be the one per cent."
She says she doesn't see him as disabled. None of the family does. "Clearly I am disabled," he says. "But I still get a shock when I look in the mirror and wonder who that guy is staring back at me. I just don't feel it, except when someone forgets to feed me." He laughs.
This month, Matthew will have his first operations to graft metal to bone on his arms and legs. He'll be the first in the world to have the procedure, known as osseo-integration, done on all four limbs. While he's not looking forward to more surgery, the results, if they work, will enable him to "clip" on limbs. When he gets his legs done, he will be able to stand without issues with sockets, which are problematic for him, given the lack of length between the end of his stump and his hips

While he is hopeful of being able to ride a bike and maintain his fitness, for now, Matthew says he's looking for functionality that will allow him to be more independent. "Saul [Geffen] told me how difficult prosthetic arms would be to use, and in retrospect, he was right," he says, referring to his current prosthetic "hooks", which require assistance to buckle them on and significant physical coordination to manoeuvre. "I find them extremely tiring, and have to weigh up every day whether it's worth the effort for what I'm trying to achieve. I have two very simple goals. One is to feed myself, and the other is to be able to be independent in toileting."
He's done his research. "It's not a case of simply going out there and getting the best technology available," he says. "It's a matter of identifying what I really need to do, and finding the prosthetics that will help me do that, even if that technology is a bit more simple."
The costs of acquiring functionality in prosthetics are staggering. One full set of prosthetics for mobility in Matthew's case will set him back up to $500,000. They will need replacing after five years. He's just turned 40. "I now understand what it's like to be disabled and the battle to get support," he says. He falls between the cracks in terms of funding because he didn't receive his amputations as a result of a work-related incident or car accident.

"I'm excited about the future prospects with the NDIS as this gap should be closed. For me, the real battle will be finding a way to fund the prosthetics I need over a long period of time."
To date, Matthew's new wheelchair, lift at home, and other modifications have cost more than $100,000, and he has received great support from his former colleagues at Origin Energy and from throughout the energy and resources sector who have raised funds. A foundation has also been established to predominantly assist with medical costs and prosthetics. "I'm very grateful to everyone. I am fortunate to have been given an opportunity to experience the humanity that exists within community. From family to friends to strangers, I have been amazed at the level of support for not only me but for Di and the kids," Matthew says.
"I've been very lucky, actually," he adds. "I've had the opportunity to stop and think for the first time in my life. It was an extreme way to do it, but I've never been one to sit around. Now I have no choice, and I've been able to reflect on what's really important and to think about what makes me happy."

Does he ever feel like just not getting out of bed? "No. Diane sometimes tells me that if I'm sore I should just stay in bed, but if I did that, then I would actually never get up, and it's worth getting up. Every day, no matter how small it is, there is always something worth being alive for.

"Before this, I thought I had the best life and I was happy and loved. Although life may have changed, the most important thing remains the same. I am loved and I am happy."