Genome Research Project Now in our fourth year of supporting Muir Maxwell Trust Clinical fellow Dr Simona Balestrini - please click here for further information. Close notice
Bg Top Edge Bg Bottom Edge
Home > News > Blog

Confronting your own disability

My son is disabled - more specifically he is profoundly learning disabled. As his mother I was forced to face the question of my own disability recently when I had to complete a Government questionnaire designed to profile parents of disabled children. Am I or am I not disabled? Many would say that I am because I live with an incurable cancerous brain tumour. Some years ago I had life saving brain surgery which resulted in my inner ear being removed. I am now 100% deaf in one ear, amongst other things that are the consequence of cranial nerve damage. 

My answer was my choice and I chose not to be disabled because in my eyes I am not. Although I imagine I could apply for disability living allowance if I wanted to apply for it and I am sure I would also be entitled to a disabled badge for my car - but I have never even contemplated these things. It's not about the money, or the badge, it's about being disabled or not. And I am not. 

I recently invested in a state of the art hearing aid. I have struggled with seriously compromised hearing for years now and finally surrendered to a hearing aid, such as it is, for the sake of my manners as much as anything else. I regularly ignore people when they are talking to me because I don't hear them. I am deaf in my right ear so I am the most rude to waiting staff who generally approach from the right. I say 'such as it is' because when you have no inner ear, all a hearing aid can do is pick up the sound you are missing and send it across to the hearing ear. All that sound that once was shared by two ears is now down loaded in to one ear. It's known as a cross system and sometimes it makes me cross when the high pitched sounds are too many. 

So let's rewind to the day I had my inner ear removed - I lost my balance too because the inner ear is vital for balance. In the hospital the bathroom sink slipped sideways on the wall. I fell in to an unseen hole as I turned quickly and reached out for the hand towel on the radiator. Things I thought were there within reach were simply not. I was determined to make fast progress and did all the balance exercises prescribed by the physiotherapist and I climbed up and down the hospital stairs all day long like a mad person, determined to acquire depth perspective once again. 

My husband took me to the museum which was a short walk from the hospital. Fresh air and a little bit of exercise seemed like a good idea. I was wearing my slippers. In the museum I felt incredibly vulnerable as visitors, oblivious to my serious balance issues, were engrossed in the exhibits with no sense of those around them. Watch them next time you are visiting a museum or an art gallery - so absorbed are they that their eyes and their feet are always moving in different directions. I clung on to my husband's arm fearing they would bump in to me and I would fall over. Strangely, they would look at me as though I was the one that was not paying attention. 

At night, with just one ear, I had to lie with my hearing ear in to the pillow - my deaf ear was on the same side as my surgery where there were 38 staples in my head. Without ears to hear you 'feel' sound instead and through my pillow I could feel the footsteps of the night time hospital staff vibrating across the floor and through my hospital bed, connecting with my brain. The feeling was very clear and strangely recognisable, almost familiar like an old friend. Those sounds made me feel safe. 

When I left hospital and tackled the next stage of my recovery I soon started running outside again. It was a little like running on a trampoline. My horizon would bounce up and down with every step. At night the darkness was my enemy and any balance I had was compromised again. A night light became essential or open curtains to allow the moonlight to light my way and keep me safe. Without it I would walk in to walls - and still do. 

My sense of direction on sound is very poor. I can never find the phone when it rings, or my children when they call me from another room - each sound is all around me and that makes the world a very big and noisy place. When I hear a siren in the distance I can never tell which direction it is coming from. These are frantic moments in the car when I know someone else's life might depend on my delayed reactions whilst I work out where the emergency vehicle is likely to emerge from and determine the best place to be to enable the emergency vehicle to pass by quickly and safely. 

Of course, being deaf in one ear has its advantages too sometimes. Selective hearing is a great thing when you would prefer not to hear. There are also those nights when you can't sleep because of the sound of your own heart beating as the blood rushes through your ears. I turn my deaf ear in to the pillow and sleep soundly, not even woken by gale force winds or torrential rain. I could sleep through anything and often do, including our son's seizures sometimes. He is severely epileptic. 

I was challenged by all of this for a while when in addition I had double vision as a consequence of my brain tumour. It lasted about a year and was resolved with surgery only once the doctors had determined that it was a stable condition. So my very noisy world with no direction on sound was also twice as large as it had been before with two of everything instead of one. I have a vivid memory of one particular image when I was out running one day, two paths to run on was normal but three sets of triplets in triple buggies - even I had to laugh that day! 

Ann Maxwell

I still run but not as well as I use to. I am fitter than most people though and I am extremely active. I cycle now too but discovered recently that cycling was easier in the USA than the UK where they drive on the right hand side of the road because with my left ear which works, I can hear the traffic coming along behind me and then overtaking. I play golf too but gave it up for the year that I had double vision. Not much is beyond me, although I gave up skiing and tennis but for different reasons. I was even at back to back Texas gigs in Paris recently and sang my heart out just like everyone else. 


So if I am forced to confront my own disability as I was for the purpose of the Government’s questionnaire, then  I suppose it would be true to say that I have a disability but I am by no means disabled and therefore the answer I chose to give was no - and long may it stay that way! My cup is definitely half full but that's my choice.

< ┬áReturn to blog

Commenting is now closed.