Words from a stroke survivor

published in Reader's Digest,
06 June 2019

link to Reader's Digest article

brain disability stroke

Roald Dahl is one of Britain’s best loved writers. Less well known is the autobiography of Patricia Neal, his wife of 30 years, powerfully portraying her recovery from a debilitating stroke at the age of 39.

The stroke

Patricia describes the moment the stroke struck, whilst bathing her daughter and pregnant with her fifth child in 1965. “I soaped the cloth and began rubbing her shoulders,” she writes. “It was a special moment with my daughter. A pain shot through my head. Maybe I overdid it today, I thought, I shouldn’t be bending. I stood up.”

As the pain grew more intense she began seeing things and remembers Roald asking her, “What sort of things?” She couldn’t tell him; she had forgotten. 

“I suffered three strokes altogether. One at home and two in the hospital. The third was the one that did me in. No one believed I would make it. A team of doctors conducted an operation that lasted seven hours. They opened my skull and found that I had suffered an aneurysm. I was as one dead. Gone. Even my obituary was picked up and published by several newspapers.”

“The aneurysm was congenital,” she explains, “meaning it ran in my family. My life had been slowly building to that moment while bathing Tessa. For 39 years I had lived with no knowledge that some evil force lurked in my head, just waiting.”

According to the Stroke Association, 100,000 strokes occur each year in the UK: that’s around one every five minutes.

Learning to speak again

Patricia had no speech after her stroke and describes how her mind “just didn’t work”. Even listening was hard. “Trying to listen to two people was like watching a tennis game, and a roomful of guests was like being on a firing range, words shooting past me like bullets,” she writes. “Once in a while there would be a word I understood, and for a second I knew exactly what was being said. But before I could focus thoughts and trap words of my own, I would forget what I had heard.”

Singing was the key to unlocking her speech, as it can be for many stroke survivors. Patricia remembers her nurse Jean Alexander washing her feet and singing, “I Could Have Danced All Night.” Suddenly Patricia chimed in, just one word. “After 22 days of silence, one word,” she reminisces. “So Jean sang her head off and I found more and more words to join in, to everyone’s relief, since it showed neither my voice nor speech was destroyed. The whole hospital would come to hear me.”

Patricia found it hard to find the right word to say and would create nonsensical words, using “oblogon” or “crooked steeple” for cigarette, for example. Inspired, Roald created the weird and wonderful language of the beloved BFG, inventing the trogglehumper, the quogwinkle, squinky squiddlers and snozzcumbers to name but a few.

Learning to walk again

Mobility problems are common after stroke. Immobility, even for a short time, can result in muscle wastage, pneumonia, pressure sores and deep vein thrombosis: physiotherapy and even functional electrical stimulation can help strengthen muscles.

“Rehabilitation is not pleasant and it takes work, work, work” said Patricia after her recovery. “From the time I got up in the morning until I went to bed at night, everything I had to do fought my natural inclination, which was to just lay myself down and let it all work itself out”.

It took years for Patricia to rebuild the muscles in her right leg and her right hand never fully recovered.

Learning through loss

Patricia experienced more losses than most in her lifetime, losing a daughter to measles (and a baby son sustaining a brain injury), losing Roald through infidelity and losing her mobility and independence after her stroke.

She did though learn several life-affirming lessons as a stroke survivor: first, that the brain has a “magic gift for healing”; second, that loss can force you to make surprising—and often blessed—choices; third, and most poignantly, that her progress was important to the morale of others. She was no longer watched just as an actress, “but as a public survivor”.

Her legacy

Hope and healing and accepting help from others are abiding themes in Patricia’s autobiography. 

She attributes her recovery to an inspirational teacher called Valerie Eaton Griffith—and an army of committed volunteers. Patricia’s story, and countless others like hers, are a testament to the power of another’s support through illness. Valerie set up the “Volunteer Stroke Scheme” across the country (with more than 1500 volunteers in total), recognising the skilled, selfless support of others as essential in stroke survival and recovery. 

To this day, volunteers remain a vital part of the work of the Stroke Association. Mentors, befrienders and peer supporters help survivors to relearn skills and regain independence. What part might you play?