If you met me in December 2015 you would have met a bright, bubbly and fun-loving woman with a busy social diary and a demanding job in a London Local Government policy department.
One month later illness had struck and I’d become a hermit. The diagnosis was Sudden Onset Hearing Loss – the prognosis is permanent. The illness is defined by hearing loss, tinnitus, vertigo, dizziness and hyperacusis/sound sensitivity. And I’ve been extremely unwell for over twelve months.
This blog chronicles my experience of recovering, in defiance of the evidence against recovery. I’ll share all the twists and turns and different stages I’ve been through while my body has tried to work out how to heal. It also gives tips for how to support someone suffering from this debilitating illness.
A monochrome colour code charts my progress as I slowly move through the different, depressing and hopeless shades of grey towards a palette of off white. I still don’t know where my healing journey will end but I’ve worked too hard for it to end in monochrome. I want the full Pleasantville experience. I want it to finish in a burst of high definition Technicolor.
At the height of my illness I spent a lot of time online searching for cures and hope but I only found people struggling at their point of crisis, sharing negative experiences. I forced myself to stop reading these horror stories and vowed, when sufficiently recovered, that I would post something to give some much needed positivity to people suffering from tinnitus, inner ear problems and for anyone who has a long-term illness.
There are some amusing moments but not every entry will be funny or hopeful. I have to share the full extent of my illness and the depths of my despair so that a fellow sufferer will know, however severe their symptoms are, I’ve been there too and crawled out the other side. This blog is a testament to the human body’s amazing ability to heal.
Throughout my illness I’ve felt like many things: a rag doll unable to sit upright; a Disney character with birds flying around my head; Jason Bourne with the alert senses of a trained assassin. But what I haven’t felt like is myself.
The analogy I’ve used most is that I am Rapunzel, the isolated maiden from the Brothers’ Grimm fairy tale, imprisoned in her tower. My hair grows longer and longer and I can’t visit the hairdresser because the sound of a hairdryer is intolerable. I’ve become ever more despairing. I am Rapunzel.
Illustration by Amy Rosenthal