How do you see the world when your eyesight fails? One young painter is helping us understand a major cause of blindness
When Don Curran first saw the portrait that Adam Hahn had painted of him, with part of his face a dark blur of confusion, he was delighted. Ten years ago, Curran was working as an airline executive when he was found to have the progressively blinding eye disease, age-related macular degeneration (AMD). Now, thanks to the portrait, the world can understand just how he sees.
In AMD the light-sensing cells in the macula, the central area of vision, stop working and eventually die. The disease is thought to be caused by a combination of genes, environmental factors and age. It might seem an incongruous inspiration for visual art, but Hahn was inspired by his late grandmother's experience to paint a series of 17 portraits of AMD sufferers the way they would see themselves.
“Grandma had macular degeneration. It was my way of trying to understand how she saw the world and how it affected her,” says Hahn, 29, who studied at Glasgow School of Art. The painting project, now on exhibition in Kent,offered a way to comprehend the mystery of her condition. “While she was alive she never talked about her sight or how it affected her,” he says. “People with macular degeneration don't tend to talk about what they see. I think it's because it's a very personal experience and they don't want other people to know because it might upset them.
“The condition is very disabling at the beginning, but people do accept it and get on. With macular degeneration you will always have some degree of vision; you rely on using the peripheral vision that you have left.”
To learn more about AMD and to find sitters, Hahn sought help from the Macular Disease Society, and from Peter Coffey, a research scientist at the University College London Institute of Ophthalmology, who is working on a day surgery stem-cell cure for the disease (see box below).
“It's not just a black hole”“I asked the patients what they saw and where things came into focus, and what they perceived in the void at the centre of their vision,” says Hahn. “It's not just a black hole, as the medical journals say. Everyone has their own unique experience of this blurred nothingness.”
He photographed each sitter and manipulated the image to represent how they would see it. He then showed it to them and, by using their remaining peripheral vision, they suggested adjustments. “It was imperative that I got it scientifically accurate,” Hahn says.
“Then I incorporated it all into the painting process. Each time I went over the painting, I diminished the clarity, so there was a sense of a degenerative process. All these people came to see their finished portraits for the first time at the exhibition's opening and I was pleased to hear them say that I had got it spot on. It's encouraging to know that I captured their world through their eyes.”
Curran, the past chairman of the charity AMD Alliance International, says Hahn's representation of his impairment is “outstanding”. He took photos of the portraits and blew them up on his computer at home, “so I could see them better through the corner of my eye”.
The 70-year-old, who lives in Chislehurst, Kent, was a vice-president of United Airlines in Hong Kong when the disease was diagnosed. Now he works voluntarily for the AMD charity.
“Most of us who have the condition had gone through life with healthy vision for many years, so have had to readjust the way we live. I had incredible suicidal depression when I first developed it but, well, I just had to get over it. I had never heard of the disease before having the diagnosis, but 25 per cent of over-75s have it in the Western world.
“One of the biggest difficulties we have lies in explaining its impact to others. I spend a lot of time trying to show how difficult it is living with central-vision blindness, and how the condition varies between each individual,” he says.
“I am about to speak at an international congress in Hong Kong and I am going to use some of Adam's portraits on PowerPoint. Even clinicians and pharmaceutical companies don't understand how it can cause such depression. Simple blindness is far easier to comprehend than this kind of partial-sightedness.”
Coffey says that AMD is nearly four times more prevalent than Alzheimer's but is little discussed. “Even in the health service, the problem can be misunderstood. The impact of the disease is thought to be as bad as a stroke or chronic pain, yet the psychological support that you would get for those diseases is not there for people who suffer from AMD.
“When I saw the exhibition, I looked at one painting and just knew it was a patient of mine. I knew what his level of visual acuity was like. It was quite startling to see this person and see his portrait as he sees himself.
“A lot of clinicians could benefit from seeing these pictures.”
Adam Hahn - Paintings of Macular Degeneration is on display at the Mascalls Gallery, Paddock Wood, Kent, until July 17. mascallsgallery.org ; 01892 839039. AMD Alliance: amdalliance.org
Stem-cell research sheds light on a cure
Peter Coffey's work on stem-cell surgery for AMD, at the University College London Institute of Ophthalmology, has brought him to the point where he hopes that a quick and widely available curative therapy will be available by 2011.
His team first worked on giving autologous cell transplants, taking a patient's cells out of a healthy area of their own eyes and transplanting them under the macula. But extracting the cells involves a long, complex operation and carries serious risks. But recently it has been found that stem cells may be turned into eye cells, which saves surgeons from having to remove patients' own eye cells.
“In animal studies this has been achieved successfully and we believe we can do the transplantation in humans in 45 minutes, so it could be performed as an outpatient procedure,” Coffey says. “We have got to go through the European regulatory process to get approval for the operation and then into a final long-term animal study to make sure that the sight improvements are long-lasting and safe.”
He says that the first trial in humans could be performed between 2009 and 2010. “We are also talking to pharmaceutical companies to try to ensure that this system does not have to take a further two or three years to get into British hospitals, because the actual surgical operation itself is an already standard procedure.”
The famous masters whose eyes failed them
Adam Hahn is not the first painter to document the impact of AMD. Georgia O'Keefe, the American painter, contracted the disease in the 1970s; some of her later work featured black disc-like masses in the centre of the canvas.
Other eye disorders are believed to lie at the heart of some of the world's most famous paintings. Michael Marmor, a Stanford University ophthalmologist, reported in the Archives of Ophthalmology that both Degas and Monet, founders of Impressionism, became more abstract in their work as their eye problems increased.
Shading and details became less refined
Degas had retinal eye disease that frustrated him for the last 50 years of his career. Monet complained of cataracts interfering with his ability to see colours for ten years before he had surgery to have them removed.
Marmor claims that his experience of treating hundreds of patients with similar conditions shows that both artists' works were the product of visual problems. “Degas' works in the 1870s were drawn quite precisely with facial detail, careful shading and attention to the folding of ballet costumes and towels,” he says. But by the 1880s and 1890s, the shading and details became progressively less refined.
Monet wrote of his frustration with his deteriorating vision, describing how he was forced to memorise where colours were placed on his palette. In 1914 he wrote that colours no longer had the same intensity: “My painting is getting more and more darkened.” Marmor says: “Cataracts also blur vision but, more importantly for a painter like Monet whose style was based on the use of light and colour, they can affect the ability to see colours.”
Was Turner's eyesight affected too?
Likewise, Michael Lamensdorf, an ophthalmologist in Sarasota, Florida, believes that Turner's fuzzy landscapes were the result of bad eyesight. He compared the fine detailing and clear blues in the 19th-century painter's earlier work with his later work, which is limited to reds. “In my opinion, Turner developed a dense, red-brown cataract that blocked out all the blue and green colours,” he argues.
Such medical views are, however, greeted sceptically by many art historians and critics, who prefer to believe that the artists' development was driven by intellect, instinct and inspiration, rather than ocular degeneration.
AMD - The lowdown
What is it? Gradual deterioration of the macula (part of the retina, responsible for detailed vision such as reading and writing). “Dry” age-related macular degeneration (AMD) is the most common, and means that visual cells simply stop functioning, causing gradual loss of vision. “Wet” AMD is caused by the growth of new blood vessels behind the retina, which can bleed, leading to scarring and possible sight loss. Who does it affect? It is more common in women and smokers.
Symptoms Blurred vision, sensitivity to light, a blank or dark patch in field of vision.
Treatments Wet AMD can be treated by laser surgery if caught early; there is currently no fully approved treatment for dry AMD.
Further information amdalliance.org;rnib.org.uk; thelondonproject.org
To view more of Adam Hahn's paintings visit: www.adamhahn.co.uk;mascallsgallery.org
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