Patient H69 The Story of My Second Sight (Audible Audio Edition) Vanessa Potter Audible Studios for Bloomsbury Books
Download As PDF : Patient H69 The Story of My Second Sight (Audible Audio Edition) Vanessa Potter Audible Studios for Bloomsbury Books
Imagine what it would be like to one day wake up and find that you were suddenly completely blind. This is what happened to Vanessa Potter. Her condition is unique. It has no name. Over the course of the next six months, Vanessa slowly recovered her vision. Opening her eyes onto a watery, two-dimensional landscape, she saw an unrecognisably monochromatic world. As colour reappeared, Vanessa encountered a range of bizarre phenomena, from synaesthesia to discussions with inanimate objects - all part of her brain's mechanism for coping with the trauma of sensory loss and the recovery of her optic nerves.
Vanessa soon became a one-woman experimental subject, as a multidisciplinary team of neurobiologists, psychologists and immunologists tried to work out what had happened to her, and why, and what incredible things they might be able to learn from her. The scientists were fortunate to know exactly what she was experiencing through her audio diaries; her unique medical recovery offered a window into the way that the human optic system develops. A foetus can't explain what's happening as its optic system grows, develops, and clicks into action. Vanessa could. This mesmerising account tells the story of Patient H69 in her own words, based on these detailed diaries she kept during her time of blindness and through the scientific research that was to follow. Having helped open windows into some areas of developmental neurobiology that were barely understood before, this gripping story is a testament to the resilience of the brain itself.
Patient H69 The Story of My Second Sight (Audible Audio Edition) Vanessa Potter Audible Studios for Bloomsbury Books
The writer puts you in her shoes and you can feel the pain,struggle,confusion and hopelessness early on..Amazing will to fight despite the odds and persevere..Product details
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Patient H69 The Story of My Second Sight (Audible Audio Edition) Vanessa Potter Audible Studios for Bloomsbury Books Reviews
This is a memoir about a young English mother of two who was suddenly stricken with a catastrophic medical condition that left her blind in three days and with most of her extremities numb. It took a long time for her to be diagnosed with a rare autoimmune disease called NMOSD, or Neuromyelitis Optica Spectrum Disorder. This particular autoimmune disease attacks the optic nerve and spinal cord, and may also cause sleeping and eating disorders.
Potter amazingly recovered almost completely, but her vision came back gradually and in ways that frightened, fascinated and flummoxed her. Even after she regained her sight, she wanted to understand just what was going on at a neuroscience level to explain what happened to her.
The book is organized in two parts. In Part One, Potter tells the story of what happened to her, from the day her catastrophic health problem began, to a few months into her recovery. In Part Two, she describes her project to understand the neuroscience, which involved a lot of conversations with neuroscientists and the creation of an exhibition that she called the beach and that melded large images with tones (music?) that related to neurological wave frequencies.
In Part One, Potter talks about her emotions a great deal and how other people deal with someone who has a mysterious medical condition that is so incapacitating. There are some real lessons here for medical professionals and how they treat their patients. Although Potter, in Part One, vividly describes her emotions throughout, and the almost hallucinatory oddities of her visual journey into and out of blindness, one thing that frustrated me is that she doesn’t write that she spoke with medical professionals in much of any detail about the experiences she had with her vision and feeling in her extremities. But that may be because she found so many of the doctors she dealt with were rushed and focused on the issue of whether she could see or not, period.
While Potter’s journey in Part One was interesting, I was far more interested in Part Two, when she works with neuroscientists to understand the science behind what happened to her. This was fascinating. But Part Two also describes Potter’s work on the beach exhibition and I was just confused by this. It never seemed clear to me how the exhibition worked. There was a whole lot of verbiage about it, but it just didn’t result in a coherent picture for the reader.
There are a lot of compelling bits to this memoir, but Potter doesn’t integrate them well and some of her descriptions just don’t do the job. This memoir could have delivered so much more with the help of an editor focused on reworking the manuscript into a more cohesive and coherent whole.
In 2012, Vanessa Potter was happily living her life in London as a TV producer and raising her two young children with her husband Ed. Suddenly, within the span of just a few days, she would completely lose her vision and partial use of her hands and legs. To say life changed was an understatement.
It turns out that Vanessa was eventually (and I say eventually - many autoimmune diseases take months to years to diagnose correctly) with a rare form of NMOSD, or Neuromyelitis Optica Spectrum Disorder. NMOSD itself is so rare, that only a few hundred people in England have it.
What Ms. Potter does so well here is describe in vivid detail her experiences those first few weeks and months, both in the hospital and at home. Because of her job and her analytical mind, she was able to both observe (not as in seeing but experiencing) what was happening around her and then describing it to us, the reader. It is a riveting and frightening experience and we are right there along with her.
The first part of this book is called Diary of Events, and is self-explanatory - it's the story of what happened to her and her experiences in recovery (she never fully regained her sight).
Part two is entitled The Science of Sight. Here she gets more into the technical and scientific aspects of sight and functionality, and covers books by such authors as Oliver Sachs and Susan Barry. She goes into such topics as memory, synesthesia, spacial frequencies, and topics about neurology, neurobiology, and neuroscience. As she says herself, "It's complicated." She explains how the brain can start to reeducate the sensory system. All fascinating stuff.
What initially got me so interested in this book is that one of my dear friend's has a daughter that was struck down by NMO, sometimes called Devic's Disease. It's so complicated there are even different variations of this. Her daughter was only in her mid-twenties and was spared her eyesight, but the NMO affected her spine and she is at this time confined to a wheelchair and is constantly fighting infections and flareups. I hadn't even heard about NMO before.
I, myself, have a very rare autoimmune disease, and this book really spoke to me. I liked the way she had pet names for the doctors and nurses (who she couldn't see) such as The Bold Doctor, The Brisk Woman, The Protege, etc. She describes the feelings she experienced from them talking about her as if she wasn't there - an experience shared by so many patients. It's not easy being a doctor or nurse, but it's certainly not easy being a patient either; and worse for someone suddenly without sight. We also read about some of the different tests (MRI's) she took and the frustration she felt trying to find out just just what was wrong with her.
With an experience like this, there really is a "before" and "after" and you really do always wonder when the proverbial other shoe might drop next. Life is different afterwards, and not just physically. Whether that's for the better or not is hard to say; you're certainly more appreciative of the little things like being able to comfortably curl up in bed and the ability to take nice hot showers. I also understand the author's not having "the emotional space for anyone else's drama." - everyone has a different experience and it's just too easy to be overwhelmed by someone's else's negativity which isn't helpful. Getting useful advice is something different.
I just want to thank the author for writing this book. It's so important for people to learn about these rare autoimmune diseases. We are always reading about the common ones that get all the attention - but it's these rarer ones that need more medical research and funding.
Amazing read. Great story! Love the uniqueness.
It dragged in some places....but a horrific experience.....makes one appreciate a normal life
The writer puts you in her shoes and you can feel the pain,struggle,confusion and hopelessness early on..Amazing will to fight despite the odds and persevere..
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