Whenever I hear that someone’s life support system is about to shut down, I feel a wave of fear and horror. What if that person can no longer be helped?
You see, I’ve been in that position myself. For almost two months I was in a coma, unresponsive and showing no obvious signs of life.
My mother sat at my bedside talking to me day after day, but received no answer. When I fell into a coma for a month, a passing nurse said to her, “I wouldn’t waste your time talking to him, honey.” He hears nothing’. The nurse gestured to a monitor next to my bed and added by way of explanation, “His brain is pretty dead.”
Over the next two weeks, doctors prepared my parents for what was presented as inevitable: that my life support would soon be turned off.
Bill Lumley proposed the day before the accident that left him in a coma in the early 1970s
When I was just eight, I fell into a coma after being hit by a van on the way to school.
Late for the school bus, I had crossed the main road not far from our house on the edge of a village near Cheltenham. The van, trying to overtake a car out of my field of vision, hit me on the head and – as I later discovered – sent me flying. I ended up in a crumpled heap by the side of the road, the force of the accident breaking my leg and knocking me unconscious.
I was rushed to hospital by ambulance and after a series of scans my parents were alerted that there was a bleed in my brain.
One of the first surgeons to examine me warned my parents that if I woke up from the coma, I would, at best, be in a wheelchair for the rest of my life.
However, my parents were determined and came to visit me daily in the intensive care unit at Frenchay Hospital near Bristol.
Every day my mother, Pat, who had been a nurse, brought me news from home. But it was always a one-way conversation – I didn’t respond and my eyes were closed. The machines monitoring my brain showed no signs of life. That is until, as the countdown to turning off life support approached, my mother gave her normal account of what had happened at home and told me that my then two-year-old sister, my youngest sibling (I have seven), I my piano practice done for me.
Apparently this news made me laugh.
My mother, I am told, called a nearby nurse. Plans to turn off my life support system were put on hold and over the next two weeks I slowly regained full consciousness.
People always seem incredulous when I tell them that I believe my brain was active and occasionally alert during the coma, just not in a way that was obvious to anyone who saw me lying there in my incapacitated state.
My experience of coma was an endless stream of dreams – some of which occurred over and over again. One such dream was actually a nightmare. I would go to my parents and then have surgery to relieve the pressure on my brain. Then I was taken back to another place in the ward, but my parents were not there. I remember desperately trying to tell the nurses that my bed was in the wrong part of the intensive care unit. It was stressful and caused me to panic. Later I found out that this indeed happened. I have had several operations and each time I was sent to a different bed afterwards.
My experience seems to be more common than you might think.
About one in four coma patients who cannot move or speak can still perform complex mental tasks, according to new research published in the New England Journal of Medicine.
Researchers from six centers around the world, including Cambridge University Hospitals NHS Foundation Trust, used brain scanners to measure the responses of more than 300 patients who had, for example, been in a car accident or had a stroke, when they were asked to imagine to say they were playing. playing a sport or performing another motor activity. They found that the resulting brain signals were similar to those of fully responsive people – in the same parts of the brain.
Dr. Judith Allanson, neurorehabilitation consultant and co-author of the research report, described the finding as a ‘game changer’ in terms of the level of involvement of healthcare providers and family members, referrals for specialist rehabilitation and discussions about continuing treatment . life-prolonging treatments’.
For decades, assessments to determine a coma patient’s level of consciousness relied on a brain scan and basic tests such as their physical response to touch, says Dr. Erika Molteni, an expert in coma science and a research fellow at King’s College London.
‘As a result, some patients who showed minimal signs of consciousness – in other words where it is immeasurably low – could be incorrectly classified as being in a vegetative state, leading to the assumption that they have no consciousness,’ says Dr. Molteni. who is also the pediatric leader of the International Brain Injury Association’s special interest group on disorders of consciousness.
Even today, there is still a need for a better understanding of what happens to the brains of coma patients, says Dr. Molteni.
The adoption of more advanced brain scans, such as functional magnetic resonance imaging (fMRI), which measures activity in brain cells by monitoring changes in blood flow, means it has been possible to capture levels of consciousness that were previously undetectable. This allows doctors to “distinguish between vegetative and minimally conscious states,” she adds. “And that’s important because it allows for more accurate diagnoses and more informed treatment decisions.”
Nowadays, there is still no clear way to determine what a coma patient is experiencing. It is known that some information gets through even in patients in a vegetative or minimally conscious state, but this varies widely, Dr. Molteni said. In 2023, she published research in the journal Neurology showing that some coma patients enter a REM (rapid eye movement) sleep cycle, which is considered a sign that conscious experiences or lucid dreams are taking place.
Since waking from his coma, Bill has had a 35-year career in journalism and has become a published author. He now lives in London with his American wife and 19-year-old son
“There are cases where patients, even though they may appear unresponsive, may still have some degree of awareness,” she says.
One concern raised in a study published in Proceedings of the National Academy of Sciences and based on research by Canadian scientists at the University Hospital in London, Ontario, suggests that coma patients may feel pain.
During almost two months in a coma, I never experienced a moment of pain even when I was in and out of the cinema – once I had surgery to relieve pressure on my brain to prevent further bleeding after a brain haemorrhage caused I became paralyzed on my left side during the first month of the coma.
By the time I left the hospital, my body was still contorted, although I was no longer paralyzed, and I was noticeably uncoordinated. I had to re-teach my brain all kinds of things, like writing, walking and talking. I underwent six months of physical therapy, and it took almost twenty years before I could walk into a room without looking noticeably uncomfortable.
The weeks I was in a coma were nothing compared to the time it took to recover from it. I was banished because it took years to align my speech with my thoughts. I could completely understand what others were saying; it was the meaningful and coordinated responses that were the problem. I didn’t make any friends at school – none, that is, until I went to an all-girls school for my A-levels with two other boys.
It took me until my mid-twenties to rebuild enough of my left-right coordination so that I didn’t look unusual. But at least I got the chance, thanks in large part to my parents.
I went to college, I had a 35-year career in journalism, I’m a published author and I live in London with my American wife and 19-year-old son – not bad for a boy whose brain was supposedly dead.