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.
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.
So, no matter the weather, my 'happy' place is now somewhere in the middle of nowhere, usually up a remote hill or mountain, well away from people and noise. I love the silence, and the challenge of getting up hills on more technical ground than a pavement or other flat surface. I know that even though it is difficult, and tiring due to the fact that I am having to compensate with just one functioning balance nerve, each step is helping me to make progress. And the views from the top (on a clear day!), make it well worth my while, and are a reminder that as quoted by Arnold Bennett, "It is easier to go down a hill than up, but the view is from the top." This is very applicable to life in general. Hard works is paying off in my recovery, but no matter how hard I train, exercise, look after myself, I will never get my hearing back.
Last summer, I asked my GP for a referral to audiology to explore hearing aid options. And so began another journey. I will spare you all the details, but I have discovered so much about our health service.
I was given, as a way of helping me cope with my hearing loss, an outdated wired CROS aid. CROS stands for Contralateral Routing of Signal. It is not your average hearing aid. I wear what looks like a hearing aid on my good side, and a microphone on my bad side. This helps me to hear people immediately on my deaf side.
Unfortunately, the microphone is connected by a wire that runs around the back of my head. My audiologist suggested I just cover it with my hair. However, when I do this I hear constant rustling. If I put my hair up, it's on full view, and gets lots of attention. I have no issue with wearing a hearing aid. In fact, this would be far less conspicuous as this is what people are used to seeing. The sad, upsetting thing is that there are more modern models available, that can be controlled by the wearer through remote controls or smart phone apps. Mine however, is either on or off. And to turn it off if I'm in a noisy situation, I have to take it off altogether (not easy when you try to hide it in your hair!), disconnect the mic and open the battery compartment. As a photographer I have had to reassess the assignments I take on. I can't attend noisy environments anymore, so these days there are very few weddings or events bookings.
Unfortunately for me, funding at my local hospital doesn't stretch that far. I have been offered a 'surgical' alternative. A Bone Anchored Hearing Aid, or BAHA. This works by having a hearing aid device attached to a metal abutment that is fixed into your skull. The sound picked up is transferred via bone conduction to the cochlear nerve on your good side.
The downside to this is that there are associated risks of recurrent skin infections around the abutment site, and besides, I really don't feel ready for more surgery on my skull.
Having met and spoken numerous individuals who have unilateral hearing loss from either natural or surgical causes, it seems that what I have been offered is the exception rather than the rule. It is nothing more than a postcode lottery, and so very unfair. I have taken up this matter with my hospital, who have no intention of providing wireless CROS aids anytime soon, and so I have contacted my MP, Justin Madders, who is investigating the matter. Whilst I know a wireless CROS aid won't be a miracle cure for my hearing loss, is it so wrong to ask for access to the equipment that would best help me to get on with my life? I am desperately hoping that something changes soon, or the only way I will get access to better equipment is through private purchase, at the cost of approximately £3,000, which we just don't have right now.
I will continue to raise awareness of acoustic neuroma and the problems that individuals face. I hope that by continuing to make noise about it, policies will eventually change and patients will receive the help they need to get their lives back on track. In the meantime, if you come across some crazy, wobbly person who can't hear you next time you're up a mountain, please come and say hi, as sometimes it can get really quite lonely.