I suffer from Complex Regional Pain Syndrome (CRPS), which is very painful and affects my entire body and mobility severely. I have been in hospital for the past three years and have only recently started going home for short breaks from treatment. I used to be into sports but since the accident my hobbies have changed. Now I enjoy DS Light Brain Training and listening to Beyonce, Rihanna and Take That. Because my disease is so rare, I am writing a book about my experience.
At the Hospital
When I Have Time to Myself
About Me Tree
A Typical & an Ideal Day
My 18th Birthday
Illustrations of Pain
Wellcome Collection's Medicine Now
‘Medicine Now’ is a permanent exhibition that is hosted at The Wellcome Trust, London, it is an exhibition which combines art with science and medicine. ‘Medicine Now’ is separated into five main sections: The Body, Genomes, Malaria, Obesity and The Experiences of Medicine.
The Body section includes a 3D life size body where you can press a button and it lights up the organ or part of the body matching up to the button you press. This is very good as it is interactive and the buttons are accessible for children and disabled people. Another exhibit is Annie Cattrell’s ‘Sense’ 2001-03 which includes five glass boxes, one for each sense: sight, smell, hearing, touch and taste. They contain 3D sculpted images of the activity pattern of the brain reacting to each individual stimulus. This is up a small raised area, which is ramped allowing access for disabled people; the only disadvantage being that the text plates are too small, making it extremely difficult to read, for those in wheelchairs or with a visual impairment.
In the Genomes section, I particularly like ‘23 Pairs’ by Andrea Duncan. Which uses 23 pairs of socks to depict the variety of different chromosomes. It helped me to visualise and understand more about the vast number of chromosomes and their individuality. This was portrayed by different sizes, colours and patterns of socks.
The Obesity section displays a very strong, unforgettable life size model, ‘I can’t help the way I feel’, by John Isaacs.
I think that the exhibition is laid out well. It allows plenty of space around each exhibit, this is good, as it does not feel too crowded and allows sufficient space for wheelchair users or pushchairs to get around comfortably.
I really like the fact that there are sound chairs in each section where you can learn more about the topic by listening to an expert talking. The chairs are at a good height for children and wheelchairs to access. It is good that they have the sound chairs as it is varying the stimulus that the visitors are using, making it more interesting. It is encouraging to see that there is also ‘Young Explorer’s Packs’ for children; this means that it covers a broader spectrum of ages and I think is suitable for all ages.
Overall, I would recommend this exhibition to others. I think that it provides a varied exhibition, with information to read, visual displays, interactive exhibits, short films to watch and speeches to listen to. There is something for everyone.
This is a draft copy of my book.
Introduction to 24 Hour Day
Hannah Deakin is a student of Protégé. She was referred to us as a young person who has not been able to access mainstream education due to a netball injury which she sustained at secondary school. Hannah’s story is highly unusual as she not only endured pain at the time of the accident but has endured pain ever since.
Hannah experiences pain for every minute of every single twenty four hour day.
Hannah is special, like so many Protégé students she accepts her situation but doesn’t let this compromise her creativity and cerebral prowess. Protégé has worked with her to develop her writing skills and tell the story from her side of the hospital curtain.
This is a story of a medical condition from the inside looking out, seeing the nurses, doctors and drugs that dominate Hannah’s day as she clings to her sense of self as a young woman and not just a patient. All the while she continues in her unceasing quest to overcome the pain that she is fighting. As an individual Hannah is a continual fighter, as a student of Protégé she is an inspiration to other Protégé students who hear of her situation and follow her progress on Protégé website.
Hannah’s rare condition is know as Complex Regional Pain Syndrome. The medical issues surrounding her situation are explored here in an introduction by a leading specialist in the field, Professor Candy McCabe (also a Protégé trustee).
This manuscript is a sample of work that Protégé is developing further with the expertise of Professor McCabe. For the next stage we hope to attract interest from publishers as we believe that this highly unusual story of the claustrophobic world behind the hospital curtain would be of interest to a wider medical and non-medical audience who, like us, would be moved, informed and inspired by Hannah’s optimism and endeavour.