Anton FitzSimons interview: All in the mind

Published on Tuesday 30 December 2008 12:44

Anton FitzSimons has been on the brink of death more than once. But despite losing his bowel and a kidney, suffering cancer, a blood clot in his lung and a massive stroke, he has somehow defied all odds and is still alive. Now he credits pure determination for his miraculous recovery

YELLOW roses. Anton FitzSimons always chose yellow roses for women. He imagined it so often when he was dying, willing himself out of the high-dependency hospital bed, picturing the walk up the hospital corridor holding the delicate, perfumed blooms. When his cancer treatment failed, he imagined it. When brick-red fluid dripped on to the floor from his stomach wounds, he still imagined it. Even when he came round from a seemingly irreversible brainstem stroke, he held on to the picture. Flowers the colour of spring sunshine. In the early hours of the morning, when he hadn't seen stars in a night sky for months, he looked out at the harsh artificial light of the nurses' station and imagined himself standing there, bouquet in his hands for Sister.

'Reality' is an interesting concept. It sounds fixed, a construction as solid, as timeless, as the pyramids. But reality is shifting sand, a kaleidoscope of moving grains that form a different picture, depending on who is looking. What if, he thought, he could rearrange a seemingly implacable reality, create his own? What if? ("Remember," the voice inside his head said when even he struggled to believe, "it's much more than denial; acceptance of a future reality is your weapon. You can't hold on to two opposing realities – the one that says you might die, you must let go of."

He was used to fighting. He had battled with ulcerative colitis most of his adult life and had developed a strange relationship with pain, using it to challenge self-control. He knew the weapons to employ. In fact, it occurred to him that he might have made himself fall in love with Sister for a reason. The Spartans had understood the relationship between war and love. Warriors were paired together, and they fought always for each other. Now he fought for her as well as himself. He thought her blue eyes extraordinary. Such depth of compassion. How could any man not fall in love with her? She gave him the ultimate weapon: self-belief. He looked in her eyes and he thought he was capable of anything. He could do this. There was faith and there was love, and together they made up the most important thing in the world: the fight.

FITZSIMONS'S story is about faith but not about God. He was an atheist. So this is not about prayer or new-age hocus pocus or crank medicine. But it is a story from the edges of science. "If you look at the development of science, in a way you start off with interesting cases that don't fit," says Dr James Hawkins, a medical doctor and psychotherapist who has studied FitzSimons's case. "That's like the scout out ahead somewhere in the distance. Then what you need to do is take the cartographers and the helicopters in and have a look at it and find out why it happened. I see Anton's story really as a scout way out in no man's land coming back and telling a story."

The placebo effect, where the body gets well because the mind believes it will, has long been studied. Often the word 'placebo' is derisory. We use it to mean a con. But what if we turned that thinking round and instead of concentrating on the negative emptiness of the sugar-pill placebo, we concentrate on the positive healing powers of the body's response to it? Researchers have long argued over why placebos prompt improvements in health. But in 2005, a team led by Jon-Kar Zubieta at Michigan University found placebos caused a distinct chemical response in the body. When the patient's brain believed the treatment was going to work, powerful endorphins, sometimes called the body's inner pharmacy, were released.

Now a new American study, published this month, suggests mental attitude can even impact on recovery and survival in cancer cases. In the past, there has been more evidence to suggest that attitude can affect illnesses with a psychosomatic component. Being psychologically resilient after a heart attack, for example, has already been shown to halve the risk of dying in the next two years. But a clinical study by Dr Barbara Andersen, of Ohio State University, published in December's Cancer, the journal of the American Cancer Society, found patients receiving psychological intervention after breast cancer diagnosis had less than half (44%) the risk of death from breast cancer than those who did not.

FitzSimons believes in the power of the mind to heal the body. Seeing him now in an Edinburgh hotel, it is hard to believe he was ever the broken figure he describes in his beautifully written book, The Fight. The tale would read like fiction were it not for the conviction of truth running like a grain through wood. He still walks with a stick because of nerve damage caused by being in bed for so long, but there is a solidity to him, a physical presence that hints at his past in the army. "I wanted to write about how I came to understand I could trigger the placebo effect in myself. I don't think there's a book out there saying, 'This is how you have faith. This is how you believe.'"

As a young man, he was in the military police and at peak fitness. But after he left to study business he was diagnosed with ulcerative colitis, a chronic, confidence-sapping condition that causes bowel incontinence. Recognising that stress aggravated his condition, he once stayed indoors for almost two months to stabilise it, knowing that being alone and near a toilet would remove worry. "I gained this level of control through belief and hard work, saying, 'No, I am not going to let this take over my life any more.'" It was the first time he realised the power of faith. (Patients with religious faith have also been shown in studies to have faster recovery rates from illness – particularly stroke and depression – than those with none.)

FitzSimons graduated with a business degree but gave up his ambitions, taking jobs that were within his comfort zone to avoid stress. He worked as a nightclub doorman, went to Warsaw for a year to teach English, and worked at Avis as a driver and cleaner. But when he moved into the Avis office, back to phones and computers, he became ill again, ending up in hospital for two months in 1994. Two consultants, with five doctors apiece, gathered round his bed. Have surgery to remove his bowel or die, they told him bluntly. "The doctors put me under immense pressure, and I refused. It was just vanity."

He knew his bowel was close to perforation. But he wanted to cling on to the life he knew, and he thought he could get better in the right environment. The chance of that, doctors said, was roughly equivalent to him winning the Olympic gold medal in the 100m sprint. Yet blood tests taken a week later showed inflammation had dropped dramatically. Five weeks later, he was discharged.

For years afterwards, he battled what he thought was colitis, absorbing huge levels of pain as a physical challenge, just as he had used running up hills with a weight on his back as a challenge in the army. "It was madness. Eventually I started blacking out, and my friend took me to hospital." It was February 2003, and this time he couldn't avoid surgery – his bowel was removed. "I agreed because I knew my bowel was perforated. I could feel the heat at night, the sharp pains."

Worse was to come. He was diagnosed with cancer, non-Hodgkin's lymphoma. It had been present for at least two years, possibly caused by immunosuppressants. How, he was asked, had he absorbed such pain levels? At first, FitzSimons saw the diagnosis as a challenge. "I thought, 'Well, let's see how faith applies now.' I really didn't know what was in store for me. If someone had said, 'You are going to be in hospital for 16 months and you are going to go through all this,' I wouldn't have been able to handle it."

In April, he suffered a blood clot on his lung. In May, he had a kidney removed. Time became suspended as he drifted in and out of consciousness for months. The dreams were terrifying. Surreal, drug-induced nightmares in other galaxies, in which he was always fighting, always searching for a weapon, left him screaming. "Most of the time, I was just a pitiful figure held together by the nurses." He was a bit in love with all of them, but it was Sister who really broke into his world because she always looked directly at him. She came into his room last thing on a Friday and first thing on a Monday. She seemed to will his recovery. Like the Spartan, he ended up fighting for her as well as himself.

Then came the catastrophic brainstem stroke which was deemed impossible to recover from. FitzSimons's relatives agreed to a 'do not resuscitate' order. But three days later he did recover, and reversed the order. His life felt so unfulfilled, he wanted to live. He had no partner, no children, no meaning. "It was as if there was nothing, no evidence that I had existed. I wouldn't get into a permanent relationship because I was always so frightened of the responsibility of a family, and with colitis responsibility was something I didn't want."

When told his cancer treatment had failed, he came close to despair. "There's almost a pressure on you to say to yourself, 'I have to prepare myself for death now because I am going to die.' Combating that is one of the most important things. I couldn't afford one negative thought. It was a total mindset." He didn't just need to believe in recovery. His subconscious also needed to believe it. Under pressure to send him to a hospice, his consultant refused to give up and began new, experimental T-cell treatment. "My consultant was incredible," he says. And Sister? Would he have survived without her? "No," he says immediately. "Not unless someone else took her role."

Of course, there is an obvious question. Is it possible the battle inside FitzSimons's mind was actually irrelevant, that his body would do whatever it was going to do regardless of his state of mind? Possibly, he says. He believes miracles happen when there is the strongest leap of faith.

Dr Hawkins believes FitzSimons influenced the outcome of his illness by seizing autonomy and refusing to be a victim. "I think that his determination contributed significantly to his survival. I suspect the T-cell treatment made a major difference, but I also suspect that while it was the lifeboat coming to pull him out of the water, he wouldn't have been in the water still breathing without having fought so hard."

The flip side of belief is denial, and FitzSimons practised that for years with colitis. Perhaps too much. While denial kick-started his recovery, ironically it subsequently made him ill again. He spent four months in rehab but after discharge still needed outpatient treatment on his remaining kidney. After one routine procedure, he left hospital and aided by his sticks, walked for five hours in the sun to get home. Now back training in the gym, it was typical of his all-or-nothing attitude. He became ill that night but convinced himself he had sunstroke, and for several days infection raged in his body, causing permanent damage. "I was supposed to phone the hospital if I became unwell. I messed up and I have real problem dealing with that. I was writhing with pain, but it was a classic example of getting stuck on one path and denying everything else, and using pain as a way of building self-confidence and seeing it as a challenge." So the same trait that saved his life also threatened it? "Very much so. I don't think I can ever forgive myself for it, but writing my book was a form of redemption for that mistake. Sometimes I wonder if I'd had that operation in 1994… if I hadn't had the kidney infection… But I wouldn't change anything if the book is going to help someone."

Listening to FitzSimons, now 50, it becomes obvious that he thinks differently to most people. Is there an explanation for such intense levels of obsession in his life? There is a long, long pause. When he was 15, his father, a management consultant, was taken into hospital. FitzSimons was being very badly bullied at the time and refused to go out, even to school. He created his own world, lying on the floor reading War and Peace. Then his father suddenly died. "My mother had begged me to go and see him, but I refused," he says quietly. "And I loved my father so much."

Afterwards, he had a ceremonial burning of War and Peace and joined the karate club. Physical fitness, the embrace of pain, became accepted in his life. It gave a control that he had been denied when being bullied, but it's hard not to wonder if there has also been a level of self-punishment in his life.

A foreign friend of his told him recently about a row he'd had with his father. The friend decided to go home to make it up but his father died suddenly before he got there. FitzSimons didn't tell the man his own story. "I came home and just… There was horrendous grief and tears for half an hour. I thought of my father just lying there and waiting for his son to come and see him. I have been so close to death and know what he would have felt. But then I shut it out. I can't handle it."

YELLOW ROSES in cellophane. Petals soft as velvet. "I was worried that I wouldn't recognise her until I got close enough to see her eyes," he says. "But when I got round the corner, she was standing right at the end of the corridor and it was as if my heart just leapt. I knew it was her straight away." It was an emotional meeting. "It's a miracle," she said, without smiling.

Everyone knows red roses signify romantic love. But the yellow rose is said to signify platonic love, affection straight from the heart with no hidden depths. FitzSimons uses the phrase "in love", but does he mean it conventionally? "I think there is a relationship that exists between, in particular, a single man and a nurse, that is exclusive to the ward and doesn't go beyond that." Did she know? "I don't know," he says and pauses. "I don't know." The first time he went back was because of a brief stay in another ward. He arranged a delivery of roses but that didn't fit in with the image he had nurtured of walking in unaided, carrying the flowers. A few months later, he went back to fulfil that dream. "The second time I went back, there was no eye-contact. It was clear to me that this woman had other patients now, and I was no longer her patient." Was that hurtful? "She had been there when I needed her, and I didn't need her any more and she had other patients that needed her."

His consultant was under pressure from nursing staff to send him to a hospice, yet he thought the nurses believed in his ability to recover. Was it all an illusion? Worse, was it a betrayal? No, he says. It was simply compassion. Towards the end, Sister stood in front of his bed and said, "You're still having problems with those drugs." But she didn't speak to him; she thought he was unconscious. Then she shook her head sadly and left. In that moment, FitzSimons determined he would erase the picture she had of him as a dying man. "It was worth fighting for, if only to go in and see the nurses. To see their faces, their reactions… it was worth a year of pain."

He has made mistakes in his life. After his father's death, there was girl he developed a close friendship with. "I began to gain a real belief in myself, essentially because she believed in me. I can remember clearly one of our long conversations at her house, then walking out into the night, as if seeing the stars for the first time, thinking I could do anything." But his friend died in a car crash when she was 16, and FitzSimons didn't find out until after her funeral. "I couldn't accept that she had gone, and used to look for her when I was out walking. It was only two years later, not long before I joined the army, that I had the courage to visit her grave and finally accept I would never see her again."

In a way, perhaps the yellow roses were a tribute to his dead friend as well as the nurse, because they were a result of the lesson she taught him. They were so young he doesn't know what would have happened in their relationship if she had lived. "But I do know the self-belief she gave me got me through a terribly difficult time in my life, and I deeply regret not telling her how much she meant to me." He wouldn't make the same mistake with Sister. "I have deep regrets about things I didn't do in the past. We can't undo mistakes, but I won't add to them by not saying, or writing, what I feel."

He fought so hard. I wonder if he has a sense still of why he fought, if life has been worth the battle. He doesn't answer the question directly. But later, in an exchange of e-mails, he does. "No matter what I am doing," he writes, "I find myself rushing out around sunset to look at the sky. I lean against a wall, often for over half an hour, just staring at it. On one occasion, during the spring of this year, it was so beautiful that I actually began to think there must be a God. I know my newfound appreciation of the sky is due to the fact that I went for over a year without seeing it."

He tries to let go of the past, to rise up and meet the future he dreamt of for so long. Embrace it without shadows. His life before was so physical, but now he tests himself in other ways. Writing, for instance. He won a prize for a poem he wrote for Sister. It's a way of reaching out tentatively for the limits of himself, the limits of the life he fought for and won. In the fight, he lost much of his inner body: his entire large intestine, stomach muscle and a kidney. Yet when he walks away from me, Anton FitzSimons somehow seems perfectly intact.

• The Fight (4.99, Open Path Books), by Anton FitzSimons, is out now