Fading from the world – a visual record of Alzheimer’s

William Utermohlen’s self-portraits vividly chronicle his descent into Alzheimer’s disease.

Some time ago, the New York Times ran a story on an exhibition of paintings by William Utermohlen that chronicle his descent into dementia. I only came across it yesterday, but thought I would share it, as I found it profoundly moving.

William Utermohlen self portrait 1996Utermohlen, now 74, was diagnosed with Alzheimer’s in 1996. He now lives in a nursing home and is unable to paint.

As Utermohlen’s self-portraits progressed (his own attempt to understand his disease), you can see the image of a human being once engaged in life becoming more troubled by it, less confident, the colour draining away from the palette, the spatial sense beginning to slip. His eyes retreat into the canvas, beginning to stare mutely out – in the end almost invisible.  His wife, a professor of art history, says that he knew that technical errors were creeping into his work, but did not know how to correct them. But what is left is, in a way, the essence of painting – the feeling of pure emotion on canvas. 

Perhaps these paintings move me because on a personal level, Alzheimer’s is now the disease I fear more than any other. Something bodily, I feel, you might fight with your mind, but when losing your mind, what weapons can you fight it with?

William Utermohlen self portrait 2000My parents are both dead, but I am now at the age when my contemporaries are encountering dementia in theirs. A few weeks ago, one of my friends finally committed her mother to a nursing home. The fight has been exhausting. Mrs C was a tough and intelligent woman and as Alzheimer’s has eaten away at her mind, her essential character has in some ways remained unchanged. But her husband could no longer cope – the endless ‘sundowning’, with his wife up all night, turning lights on and off, turning the gas on and off. Insistent, determined, the most difficult of patients, and yet at times like a frightened child. To see this once-confident woman consumed by fear and uncertainty has been the most heart-rending aspect of this disease for her family. 

Dementia is the cruellest of diseases, ebbing and flowing, returning people’s sanity for brief seconds or minutes, them removing it again, leaving families shattered and a person finally lost unto himself. And it is looming on the horizon for many of us if science cannot make a breakthrough – to find why the brain ‘oxidises’, rusting like an old vessel. But all we can hope for is that they make that breakthrough – and as quickly as possible. 

I am: yet what I am none cares or knows
My friends forsake me like a memory lost,
I am the self-consumer of my woes—
They rise and vanish in oblivious host,
Like shadows in love’s frenzied, stifled throes—
And yet I am, and live—like vapors tossed 

Into the nothingness of scorn and noise,
Into the living sea of waking dreams,
Where there is neither sense of life or joys,
But the vast shipwreck of my life’s esteems;
Even the dearest, that I love the best,
Are strange—nay, rather stranger than the rest.

I long for scenes, where man hath never trod,
A place where woman never smiled or wept—
There to abide with my Creator, God,
And sleep as I in childhood sweetly slept,
Untroubling, and untroubled where I lie,
The grass below—above the vaulted sky.

John Clare, Northampton General Lunatic Asylum, 1844

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