The struggle is real, and lonely...

The struggle to overcome the emotional and physical affects of undergoing major cranial surgery has been by far the most difficult aspect of this journey.


Knowing that when you wake up from your surgery you will be profoundly deaf on one side is a really tough thing to get your head around.


I spent two nights on HDU due to the effects of being under anaesthetic for such a long time. I remember the screeching of the tinnitus that first night. It was like having a light sabre fight going on inside my head. And it wasn't just on my now deaf side. It was almost as though my ears were screaming at each other, trying to figure out what was going on. Thankfully, after that first night this seemed to settle, and I was just left with the roar of white noise and dog whistles that I still hear now. Constantly. Every second of every minute of every day. It is sometimes so loud it will wake me up at night.


A couple of days after my operation, I was taken to a side room. The TV was on my 'good' side, and for most of the day things were very quiet. Not being able to hear properly wasn't too much of an issue. If I was asleep when the nursing staff came to check my neurological responses and change cannulas and drips, they would often have to shake me a little, as I just didn't hear them! "I've got this" I thought to myself. At times this is debilitating.


But when I returned home a week later, I began to realise just how life changing this was going to be. I struggled to hear the people speaking to me if the TV or radio was on. If someone put the kettle on in the kitchen, that would drown out the sound of anything else going on. Turning up the volume in turn increased the volume of the tinnitus.


Thankfully, we were blessed with good weather, and so I spent most days outside in the garden enjoying the sunshine, listening to audiobooks and talking to the many visitors I had. Unfortunately though, the summer didn't last forever and as the weather turned I moved back indoors.


People underestimate the difficulties faced by people with unilateral hearing loss. It's true, there are some benefits. There is no such thing as a noisy bedroom or hotel room. I just lie on my good side. You can choose to ignore people, as you just didn't hear what they said. And I can get free companion tickets to theatre events.


But these 'benefits' are far outweighed by the difficulties.


A visual explanation of just how I'm affected by hearing loss. I am on the green 'monaural' line of the chart, with less than 20% speech understanding in noisy environments.

Socialising has become a nightmare. You do not realise just how loud 'background' music in public places is. Bars and restaurant have become the stuff of nightmares as I spend all my time looking at people's mouths, trying desperately to lipread. It's a bit like trying to read a book but only being able to see one word in every four. Being in a noisy environment is exhausting, and the prospect of a night out no longer fills me with excitement and anticipation, but dread and anxiety. So much so that I will often find an excuse not to go out. There is no way I can cope with the noise associated with working in a school, as I had until this nightmare started, and as for playing my violin, well let's just say that my philharmonic days are well and truly over.


I have lost directionality of sound. If someone calls my name, I cannot locate where the sound came from. If I put my phone down somewhere and someone calls, I struggle to find it before it rings off. If I'm out running, I have to stop at every crossing place to double, and triple check that there are no cars coming. If I'm out cycling on the road, I'm filled with panic the entire time as I can't hear where traffic sound is coming from.



I bought myself a high vis jacket with 'Deaf Cyclist' on the back of it. It remains in my kit bag though, as part of me doesn't want to admit that I'm 'disabled' by this, and I don't want to be an embarrassment to my husband - he really didn't seem keen on me getting it.