MS: ‘I am very angry about this disease’

January 28, 2008 by
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When celebrated graphic artist Johnny Hicklenton learnt that he had multiple sclerosis, the news was delivered with a brutality that stuns him still – nearly seven years later. “The doctor, a locum, just stared at her computer screen,” he says, “and never once looking at me, said: ‘You’ve got MS. You’ll be dead in 12 to 15 years.’ Just like that.” Her remit, he says, was presumably not to become emotionally engaged. Johnny’s is the opposite.

 

Celebrated: Johnny Hicklenton

This 40-year-old artist, world-renowned for his work on comic books such as Judge Dredd and 2000AD, is passionately involved in a fight against what he terms “this terrorist illness”. MS, a disabling neurological condition, occurs when the protective sheath – or myelin – around the nerve fibres of the central nervous system suffers damage, causing interference to messages that pass between the brain and parts of the body. Sufferers, in Johnny’s experience, have been largely abandoned by the medical establishment. So he has allowed himself to become the subject of a documentary, Here’s Johnny, which shows his frustrating and sometimes surreal world. Now virtually bed-bound, he cannot move without a wheelchair and is often confined to his west London home, which he shares with Claire, an old friend. He talks candidly about his problems, but also with great humour; at times he has relied utterly on that to see him through some very bleak days.

His smile is open and warm and, with his fashionably close-cropped light brown hair, trendy T-shirt and sunglasses, and easy manner, it is sometimes hard to connect this jovial artist with his alter ego in the documentary, who explains: “Yes, I could walk 500 yards and I could fake a normal walk, but it was just agony. You could never take the tension out of my face.” He points to a pretty garden path with his walking stick and says: “To you, that is a few cobbles, a bit of uneven surface and a couple of gates. To me that is the ninth circle of f***ing Hades and pain.” As we see him walk along it, using a stick for balance, he adds, “Now watch this: ow, ow, ow, ow” – each exclamation of pain coinciding with a step.

The first indication that anything was amiss came during a game of tennis. Johnny, then 28, was playing with his father and eight-year-old niece. He found himself dragging a foot that would not move of its own accord. Later, he began suffering mood swings, as well as bouts of numbness and tingling in his fingers, face and shins. “MS sneaks up on you,” he explains, “it can be deep into your body before you realise anything is wrong.”

For five years, Johnny found himself going to the doctor, complaining of aches and pains, and feeling unable to do something as simple as run upstairs. There is no one simple test for MS; doctors typically diagnose it through an accumulation of symptoms, although it can be confirmed in more than 90 per cent of cases by an MRI scan, which will reveal areas of damage, called lesions, on the spinal cord. On doctors’ advice, Johnny would embark on a health kick: get more sleep, stop drinking. But when the day came that his whole body felt numb, enough was enough. Johnny visited a doctor and this time refused to leave – “Well, I couldn’t walk” – until something was done and he was examined properly.

Still, that locum’s harsh verdict on the results of an MRI scan was shocking. “I felt as though I’d come into a new life barbed with pain.” Referred to a neurologist, Johnny was again left dismayed by the medical profession. “My consultant said to me, ‘Take it as read that it is in your spinal cord.’ Which was as good as saying that the disease was seriously advanced.”

MS, an auto-immune condition, affects 85,000 people in the UK, principally adults aged between 20 and 40 (although that range seems to be widening). No one is sure what causes it, but the reasons are believed to be both genetic – although not directly hereditary – and environmental. Its severity ranges from the benign to the terminal; every case presents differently and many people will manage their illness successfully. But treatment is mixed and success rates vary, with the four licensed drugs (three forms of beta interferon and Copaxone) not being appropriate for all cases or severities.

Johnny has tried several other treatments, including an anti-spastic agent, Baclofen, and Aimspro, a controversial drug derived from a serum made of goats’ blood, which has never been formally trialled. It is only available privately and Johnny found it too expensive. Now he relies on a combination of the sedative diazepam and anti-depressant amitriptyline, plus he is trying an experimental treatment, LDN, or low-dose naltrexone, which is believed to boost the immune system by increasing production of the body’s “natural” painkillers, endorphins. Again, it has to be paid for as it is not available on the NHS. “This is a most effective drug for me – the other day my legs felt really strong. “More importantly, it is giving me my personality back.”

The weakness in his legs has been one of his greatest frustrations. “At first I only needed one stick, then I needed crutches, but I got fed up with being barred from pubs and clubs because the bouncers thought I was drunk. Walking was painful and unsteady so I had to accept that I needed a wheelchair. At first it was awful, but now I have a groovy new French chair, which helps.”

Depression has also been a problem. Johnny admits to suicidal thoughts. “I don’t like living in this vacuous limbo, yet I do remember that it is a joy to be alive, if only for my family and friends.” The LDN seems to have left him feeling calmer and more in control. The most difficult part of the illness is the one that Johnny is only just facing up to – it is stealing away his powers to draw. In the film, he says: “I haven’t got MS when you are looking at my pictures. I haven’t got MS when I am drawing them.”

Sadly, in the past month, the spasms have begun to affect his arms and Johnny has found himself making excuses not to get the drawing board out. So this talented artist, who discovered his passion at 10 when he saw a comic book, immediately surrendered his football to a friend and began to draw and draw for days on end, has found himself almost frightened to begin work for fear of what he might no longer be able to do. ”I am grateful for the amount of drawing I have done so far, but I’m scared to put pen to paper now. The last time I drew anything was last year.” However, he remains remarkably upbeat. He has the strong support of friends and family – sisters Jane and Sarah, plus that niece who is now at medical school. “The more intense the disease gets, the more intense my relationships become. I never feel excluded because people are really sweet and they forget I am ill. My mum has been particularly helpful.”

Johnny accepts his fate with remarkable ease. “I am staring death in the face and I want to move on. I believe in euthanasia. I want to go my way when the time comes. And I am not demoralised, but I am very angry – this disease makes me angry. ”But I’m not bitter – when I see kids running up the street, having fun, skateboarding, doing what they do, I say thank God for your myelin sheath and may you always be happy and healthy.”

 

Here’s Johnny’ was made by Animal Monday Production and funded by the Channel 4 British Documentary Foundation and the Wellcome Trust. MS Society Helpline: 0800 800 8000

 

UPDATE: On 23 March 2010 it was announced via the 2000 AD forums that Hicklenton had died the previous week following his battle with multiple sclerosis. Hicklenton had travelled to Switzerland and died on March 19 at Dignitas.

About the Author

Victoria Lambert has been a journalist for more than 20 years, and specialises in health and medical matters. She writes for the Telegraph, the Times, the Sunday Times, the Guardian, the Mail and the Mail on Sunday. She contributes to Saga, Geographical and First Eleven magazines – where she is the agony aunt.

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