Professor Mary Reilly interviewed at The National Brain Appeal's A Letter in Mind exhibition

Christopher Samuel, aged 44, is a multi-disciplinary artist whose practice is rooted in identity and disability politics, often echoing the many facets of his own lived experience. This October, Christopher is taking part in The National Brain Appeal’s A Letter in Mind 10th anniversary exhibition of art on envelopes, and has very personal reasons for doing so.

For more than 20 years, Christopher has been a patient at The National Hospital for Neurology and Neurosurgery in Queen Square, London - the hospital that The National Brain Appeal is dedicated to fundraising for.  He credits his consultant neurologist, Professor Mary Reilly, and former clinical nurse specialist (CNS) Karen Bull for turning his life around, and not just from a medical point of view, saying “They changed my life in so many different ways. I don’t think they know how much.”

Christopher has a neuromuscular disease, similar to Charcot-Marie-Tooth disease (CMT), but exactly what it is has baffled Professor of Clinical Neurology and Consultant Neurologist Mary Reilly for decades: 

“There are over a hundred of different causative genes for CMT and we currently make a diagnosis in around 77 per cent of cases. Unfortunately, Christopher is one of my unsolved cases but we will never give up and each of my new research fellows are asked to try to solve Christopher’s case.”

Although he still hasn’t received a diagnosis, this has never affected Christopher’s care and Professor Reilly and team have always supported Christopher in managing his symptoms - especially focus on helping him optimise the enjoyment of his life.

After a journey of many ups and downs, Christopher gained a first class degree in Fine Art as a mature student. The key to unlocking his future was not his medical care but CNS Karen’s dogged determination on Christopher’s behalf to get him a specially adapted car.

Karen knew that he wanted to live a fulfilled life and aim higher than he had been. She said:

 “It is so important to treat any patient as a person, not a disease process. Treating Christopher as a human being is what was going to make a difference for him, not pills and potions. I knew that he was very depressed and that having a car could transform his life.”

Thanks to Karen’s efforts, Christopher was provided with a state-of-the-art car that was tailored for his individual needs, designed so he could drive his wheelchair into it. One of his hands controls the steering. His other arm controls the acceleration and brakes. There is a head sensor for him to activate the indicators, and voice activated ignition and controls.

Once Christopher had his car, he then signed up for an art and design course. It was a lightbulb moment and from then on he was unstoppable. He completed the three year course - a BTEC and Foundation Course -  in one year with distinctions in all of his modules. He said: 

“I became obsessed with art, learning about it, pumping out so much work and trying every genre. I had never been to a gallery before. It was a whole new world. My mum was so happy. She could see this new light burning in me. I felt alive again. I wanted to live.”

At university, he tried everything that was available to him - working with glass, pottery, steel, screen-printing, embroidery. “I was like a child in a sweet shop," Christopher recalls.

He was the highest performing student at the university and graduated with a first class degree. And now, Christopher has his own art studio and his own business, employing four staff.

Karen is now semi-retired but stays in touch with Christopher. “Christopher has always met every challenge full on. Getting his car was pivotal for him. He has done so well. I’m so proud of him. He sends me prints of work he has done and he also makes me handmade Christmas cards, which I love.”

Karen continued: “We answered his problems in a different way. We met the needs of his life. If you can teach anyone anything in medicine and nursing, it is to look at the person and how you can make things possible for them.”

Professor Mary Reilly, who is also co-director of the Queen Square Centre for Neuromuscular Diseases, that The National Brain Appeal charity helped to establish, said: 

“Christopher is an exceptional person. His condition means that he has a lack of sensation and numbness in his arms and legs. He needs help breathing day and night. Our approach to his care was to manage his symptoms and help him optimise the enjoyment of his life and what he could do in spite of his disability. Karen’s persistence in helping him to get a bespokely designed vehicle was crucial. It gave him a purpose and unlocked his amazing talent as an artist that we had no idea was there. He’s phenomenally talented and has so much to contribute to society. He’s also a testament to what Queen Square can achieve even when there is no specific treatment available.”

Christopher, who still has annual check-ups at The National Hospital, said:

 “My nurse specialist, Karen, and my doctor, Professor Reilly, are very special people in my life. They are strong women, like my mum was. It is an absolute pleasure to be taking part in The National Brain Appeal’s A Letter in Mind exhibition, a perfect way for me to show my gratitude to them and to all the staff at The National Hospital.”

A Letter in Mind, marking its 10th anniversary this year, takes place at Gallery Different from 24-28 October 2023. Artworks will be sold via the charity’s online gallery aletterinmind.org from 25 October. 

Christopher’s artwork will be displayed anonymously alongside creations by artist and broadcaster Sir Grayson Perry, fashion designer Dame Zandra Rhodes, children’s book illustrator Axel Scheffler, Oppenheimer director Christopher Nolan CBE, comedians and television presenters Joe Lycett and Leigh Francis, Game of Thrones actor Indira Varma, Sherlock creator Mark Gatiss, and many other leading artists and celebrities.

All artworks will be identically priced at £85. The identity of the artist is revealed at the end of the exhibition, once the artwork has sold. All proceeds from sales will go towards supporting vital projects at The National Hospital for Neurology and Neurosurgery, where Christopher is a long-standing patient.

A Letter in Mind previews online at aletterinmind.org and at Gallery Different, 14 Percy Street, London W1T 1DR from 24 October with online sales from 10am on 25 October at aletterinmind.org. The exhibition runs until 28 October. Gallery opening hours are 10am to 6pm.

Main image (Left to right: Professor Mary Reilly, Christopher Samuel, Karen Bull)

Links

• The National Brain Appeal
• aletterinmind.org
• Professor Mary Reilly's academic profile
• Christopher Samuel
• BBC London news (watch from 21:30). Please note, the link is only available until 7pm 24 October.

Credits

• Image: Marie Mangan
• Text: The National Brain Appeal