Metamorphosis: A Life in Pieces

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Metamorphosis: A Life in Pieces

Metamorphosis: A Life in Pieces

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Not everyone is able to access a timely diagnosis, have a choice of DMTs let alone reach the "holy grail" of stem cell treatment.

An account of its author’s experiences of what was then known as “disseminated sclerosis” – Cummings died the year it came out, aged just 30 – it had a powerful effect on Douglas-Fairhurst, one he describes compellingly in Metamorphosis. Metamorphosis is the best book I have read about multiple sclerosis, and that is because it is about so much more. Amongst many other devastating reassessments of his life and his place in the world, Douglas-Fairhurst was faced with the question of how to tell family, friends and colleagues what was happening to him. Radio and television appearances include Start the Week and The Culture Show, and he has also acted as the historical consultant on TV adaptations of Jane Eyre, Emma, Great Expectations, the BBC drama series Dickensian, and the feature film Enola Holmes. Reading', he suggests, 'allows us to work out who we are by imagining who else we might have been, or who we might yet become.I found this upsetting as myself and others simply have to choices, the NHS is too streched and the only option is to muddle through a descent towards increased poverty and dissolution. This ought to be a very depressing book since it describes the onset and development of multiple sclerosis in an Oxford don. Too often, us middle-aged blokes with PPMS (the one that just gets progressively worse) get forgotten amidst the mass swirl of the c. It really is time that there is a concerted effort by the NHS to level up diagnosis, care and the longer-term options. What he [Douglas-Fairhurst] gives us isn't just the story of an illness but a story about the importance of stories.

AHSCT cannot repair existing damage to the brain and spinal cord, but up to 70% of patients with primary progressive MS who undergo it are able to halt the disease’s development.He had the latter, with no effective treatment, it seemed, let alone a cure: “My body was like a dying coral reef.

Photograph: Antonio Olmos/The Observer View image in fullscreen ‘My body was like a dying coral reef’ … Robert Douglas-Fairhurst. That in turn suggests that life, even for those who feel well, is something we have to navigate and negotiate, and this is where elements of autobiography enter welcomely in - above all, Douglas-Fairhurst's faith in books and the imagination as sustaining presences. And there is mischievous laughter breezing throughout the book, forbidding any maudlin false sentiment. This is a very honest account of MS and it is clear the author has encountered many of the issues which people face. This is a homage to the healing power of reading as much as to the incredible medical advances of stem cell transplantation.

MS sufferers who suffer with the more common relapsing/remitting ('good days and bad days') form of the disease, which is more prevalent amongst women. Written by an entertaining storyteller and offers a rare insight into a situation that few people will have to face, but that it does us good to contemplate. But it recalibrated so many other things besides: his relationships with other people, and with his surroundings. And though his book of diary entries charts depths to which Douglas-Fairhurst doesn’t sink, it’s also gloriously life-affirming, “embracing the sheer multiplicity of the world”.

He experienced “bladder urgency”, a condition that affects up to 80% of MS patients; his voice began to grow faint.The whole thing sounds to have been so gruelling and lonely: much more so than I’ve made it sound (you must read his book for the full horror show). On that day, a neurologist briskly explained to him that his recent MRI scan had revealed the existence of lesions on his spine and brain that were almost certainly the result of MS, and in that moment – whoosh!

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