Merrill wears numerous different hats. At home in England, he is a husband, father, brother, grandfather, great-grandfather, craftsman, and traveler. The recipe which brings great positivity to his life consists of time spent engaging in hobbies and enjoying family – his wife of 47 years, two daughters, seven grandchildren, and four great-grandchildren.

“So, family life is busy, fun, and the main focus of my life,” he says.

On the surface, it may not seem that Merrill is diagnosed with a rare chronic pain disease. However, in 2001, after the death of his mother, he began experiencing facial pain which would later be diagnosed as Trigeminal Neuralgia. After six months of dental visits, it was Merrill’s general practitioner who achieved diagnosis. Until that point, he had never heard of TN and initially felt confused.

“I was originally told by my GP that it would probably go away after a couple of weeks,” he says. “When it didn’t, I looked it up on various web sites and was not encouraged by what I found.”


Merrill describes his initial treatment plan as “confusing” and “erratic.”

“When I was really suffering, I felt very alone mainly because it is very hard for anyone who has not had the experience of TN to really comprehend just how much pain you are in,” he says. “On really bad days/nights, I felt totally hopeless as there is nothing you can do to stop the constant waves of pain – just curl up in a ball and pray that the pain will cease.”

It wasn’t until 2017 that he was referred to a pain clinic with a specialist and neurosurgeon. He was put on the list to receive a microvascular decompression, however, Merrill decided to postpone the surgery.

“I decided that I would continue with the medication rather than have surgery with all of its implications,” he says. “I have been told that I can change my mind at any time if I feel the surgery becomes necessary.”

He currently manages the pain with a medication regimen that took about eight years to find. Merrill currently takes 1,800 mg of Gabapentin and 1,000 mg of vitamin B12. He has also tried acupuncture and physiotherapy, with results that he said differed depending on the practitioner. Merrill stays highly active, engaging in a Tai Chi class weekly and exercising daily, which he credits much of his current state to.

Merrill continued to work until retirement in 2018, though he had to modify the ways in which he engaged with clients – especially during periods of severe pain.

“It was sometimes difficult trying to talk to clients in the middle of an attack with tears running down my face and my nose running,” he says. “Also sometimes speaking to someone on the phone if the pain was present, I could never remember what I had been said. Have had to hang up and then call back when the pain had subsided.”

Post retirement, Merrill stays busy with family and hobbies. Although he said that age itself garners greater appreciation for the things in life which matter most, the addition of TN has also created increased perspective.

“It has made me more mindful of others, also made me more aware of doing the things that I want to do because, when the pain returns, life will change and my ability to live life as it should be lived will be seriously curtailed,” he says. “… I suppose having chronic pain does concentrate the mind on the people and things you value the most.”

His typical days starts with the sunrise, meditation, coffee, and 45 minutes of exercise. Merrill then ventures into the woods to make split Hazel hurdles with his brother or go fly fishing and is back home by dinnertime to enjoy a cup of tea with his wife Rose-Margaret before they retire for the evening.

“Very quiet life, just the way we like it,” he says.


At the time this article is written, Merrill is experiencing remission with six months of pain relief. He said that his current treatment plan has been successful and that “If it ain’t broke, then don’t fix it.” Merrill has come to a place within the past three months where he experiences hope when considering the future. Contributing to this mindset is a nurse named Mandy who makes him feel seen and heard, offering advice and care in a compassionate, understanding way.

“I no longer feel so alone as I know I can speak or contact Mandy,” he says. “I know I am dealing with a professional who understands.”

Merrill admonishes more practitioners to be like Mandy – listening to their patients and being open minded toward their wishes and unique situations. The same is true of family members and friends.

“If you are lucky like me, (family and friends) just keep loving you and you love them right back,” he says. “If you are not as fortunate and your family or friends don’t understand the awful pain you are in, then just try to find others that suffer as you do – even if you can only talk via email. Any support is better than trying to face it on your own.”

Merrill also encourages those in his situation to be their own advocates – learning all they can and working hard to fight for their own wellbeing.

“Doctors are there to help, but in the end, it’s up to you,” he says. “Self-help is so important.”

Merrill also found support through the Facial Pain Research Foundation after his daughter introduced him to the website. He says knowing that researchers are pursuing aid for TN patients also contributes to a hopeful future.

“At last something is being done to take this awful disease seriously,” he says.

Cultivating hope through self-help and surrounding oneself with a quality support team is critical to cultivating hope for tomorrow. In this mindset, Merrill pursues life with the goal of living and loving as fully as possible.

“If you do not have hope, then you have nothing. There is always hope. Never give up. There will be something or someone out there that will help you,” he says. “You just have to keep looking. What works for one person just may work for you. Never be afraid to try something new. It may just work.”

Author byline: Hanna Shae Smith is an award-winning journalist, student clinician, and daughter of a person with Trigeminal Neuralgia. Smith lives in Phoenix, Arizona, where she studies chronic pain neuropsychology and neuroscience, teaches emergency basic life support, and volunteers doing search and rescue/recovery. If you are interested in sharing your story as part of this project, please contact Hanna Shae Smith at