World Stroke Day: Reflections from Rob Palk

World Stroke Day takes place each year on 29 October. It highlights worldwide rates of stroke, raises awareness of ways to prevent stroke and focuses attention on the need for support for stroke survivors and their carers.

 

A stroke is a brain attack which happens when the blood supply to the brain is cut off, caused by a clot or bleeding in the brain. Stroke is the leading cause of severe adult disability worldwide and over 1.2 million people in the UK live with the effects of stroke.

 

Understanding of and treatments for stroke have changed dramatically over the lifetime of the NHS. Nevertheless 1 in 4 of us will have a stroke during our lifetimes and stroke survivors face huge challenges in rebuilding their lives after stroke. Capturing the voices that lie behind the history of stroke, treatments and patient experience will help us understand better a condition that affects so many of us, our families and friends.

 

Here Rob Palk shares his experience of having a brain haemorrhage and its aftermath at the age of 38.

 

Stroke Association is a national charity and one of NHS at 70’s partners.

www.stroke.org.uk

 

Rob Palk’s life was upended in 2010 when, while getting out of the shower one morning at the age of 30, he suffered a severe brain haemorrhage. He was lucky to survive: the first doctor he saw told him he had flu. He has undergone several neurosurgical operations, and has been left permanently partially sighted. His road to recovery has been long, but he managed to turn his experience into a surprisingly funny novel. Animal Lovers (Sandstone Press, 2017), tells the story of his illness in fictionalised form, with an eye for the surreal and macabre. When we interviewed Rob for NHS at 70 he was just as funny and frank as in the book.

(Warning: contains some strong language)

 

Rob Palk portrait

Listen to Rob describe the experience of having a brain haemorrhage.

For more than a week after this, Rob didn’t know what had happened. After days being ill and delirious in bed, he went to his local hospital, but was misdiagnosed with bad flu and sent packing. It was only after he returned to work, realised he had lost much of his vision, went to an optician and was referred onwards to Moorfields Eye Hospital that he learned what had actually happened. Here he remembers what it was like to be told he had a blood clot the size of a golf ball in his brain:

 

Listen to Rob describe his diagnosis.

Very quickly, Rob was admitted to the National Hospital for Neurosurgery and scheduled for an operation to remove the blood clot and repair the blood vessels in his brain. He was in danger of another bleed, which would almost certainly kill him, and there was no guarantee that the operation itself would end happily. I asked him how he felt on the morning of the operation, and how he accommodated himself to the possibility of dying. (Warning: his answer is a bit mucky.)

 

Listen to Rob talk about how he felt on the morning of his neurosurgery.

The operation went well: Rob survived. Here he describes waking up, and identifies himself as an enthusiast for Paul McCartney, Christmas, and being alive.

 

Listen to Rob talk about waking up after his operation.

However, the next few months were not easy: the mental and physical consequences of brain injury and neurosurgery can be severe, and recovery can be difficult. Rob suffered from a bout of severe depression, which was not helped by him immediately trying to write his first novel.

 

Listen to Rob talk about his recovery.

Among its other consequences, Rob’s brain haemorrhage left him with severely impaired vision. Here he talks about adapting to life as a disabled person: how he learned to cope, the new skills he learned, the strange experience of wondering if you’re a “proper” disabled person or not, and the problems of negotiating (and then being ejected from) the benefits system.

 

Listen to Rob talk about adjusting to life as a disabled person.

Recovery and aftercare, of course, is a long process that doesn’t necessarily end during your lifetime. I asked Rob how his prognoses had changed, and how he felt about living with the possibility of further haemorrhages. Brain injury, we find out here, forces you to think about questions like whether it would be worse to die or to go blind; it also forces you to rely on social structures which might be taken away – as indeed Rob’s disability benefit was. (He later wrote about his experience with the DWP here.)

 

Listen to Rob talk about his prognoses.

These days, Rob is doing well. The novel he wrote about his brain haemorrhage was published in 2017, and continues to sell; he is working hard on his second, and has recently been told that his chances of another brain haemorrhage are now very slight to nil. As the interview drew to a close, I asked him how he felt about all the big questions of mortality, being dependent on a brain and a body, and whether a near-death experience makes you better or worse at writing books. “You get a new sense of yourself,” he says, “as a failing sack of flesh … but that’s probably salutary, and good”.

 

Listen to Rob reflect on his experiences.

Do you have a story like Rob's? At NHS at 70, we'd like to capture everyone's healthcare stories. Click here to contact us and share yours.