Wednesday 18 September 2019

'Being a single mom was tough especially when I couldn't hear Sara in the night'

Carol Brill suffers from Usher syndrome, a genetic condition that deeply affects her sight and sound. Her thirties saw Carol fall into depression, which lifted with the birth of her daughter seven years ago.

Carol Brill and her daughter Sara
Carol Brill and her daughter Sara

Carol Brill

As I lay in the cold operating theatre in the maternity hospital, the chill not only entered my body, but also my mind. I had been prepared for emergency Caesarean section three times in the previous three weeks.

I thought it was a case of the boy crying wolf.  But now, this was it; I lay there shaking with the cold and fear as the surgeon made the incision to bring my daughter, Sara, into this world.  I never believed she would actually be born.

After all, I had lost my darling son Peter the year before. Pre-eclampsia dominated my pregnancy yet again, and there were further complications after a terrible fall over the open door of the dishwasher that I did not see, causing the placenta to leak into my bloodstream. I really thought I lost my baby.

And then Sara was born. I could not wear my hearing aids during the c-section, but boy could I hear her piercing and deafening scream. I thought to myself, should I give up wearing hearing aids for a quieter life?! 

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When she was held up in front of me I tried to get her in my narrow field of vision. As soon as I saw her I panicked. I thought to myself, I am going to struggle to see her. But I was determined that I would find a solution to this problem.

I have a condition called Usher Syndrome, a genetic disease which causes hearing and sight loss. The sight loss is caused by Retinitis Pigmentosa (RP), where the retinal cells gradually die over a period of years, starting with night blindness and then a gradual loss of peripheral vision. I now have five degrees of tunnel vision. There is currently no treatment or cure for Usher Syndrome, but I have great hope that one will be found during my lifetime.

From the age of four I have worn hearing aids and attended mainstream school. Problems with my vision started when I was ten years old having difficulty seeing in the dark. At the age of 11, my parents were told by an eye specialist that I was going blind due to RP and they were best to send me to a school for blind girls.

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Naturally my parents were devastated to be told of this diagnosis, it caused my mother to faint in the specialist's office. My parents decided not to tell me until there was a cure or treatment as I was already having a hard time wearing hearing aids and being teased by other children. My teenage years were difficult; I remember only feelings of embarrassment because I didn't see someone or something properly.

At the age of 21 I found out about my RP diagnosis - my doctor told me. I went home and told my parents and they were distraught. They wanted to protect me from my diagnosis so that I did not worry about losing my sight and that I could live a 'normal' happy life. There was no internet in existence at that time, or much scientific research going on. So it was a very difficult situation, one I admire my parents greatly for coping with.

The day after my diagnosis, I looked up Fighting Blindness' phone number in the directory. Thanks to the wonderful staff there I became aware of Usher Syndrome. They put me in touch with Dr Paul Kenna in the Eye and Ear Hospital who diagnosed me with Usher Syndrome Type 2.

Read more: The impact blindness has had on my life and family

After absorbing the shock of my diagnosis, I thought it was time to start living, really living. My twenties were filled with fantastic and memorable experiences, such as parachuting, trekking in Nepal and tandem cycling in the USA and Australia. I realised the part I needed to play in helping Fighting Blindness and threw myself into charity work and raising awareness about Usher Syndrome. I became the youngest ever Chairperson of Fighting Blindness and took on various positions in European and International patient-led organisations.

However, it hasn't all been rosy. In my thirties, I broke away from everyone and everything to do with Usher Syndrome. Those years were to see some tough days including depression, not only due to my deteriorating sight, but also due to divorce, the deaths of my dear father and my son Peter, and general poor health. The depression really took over my life as I forgot to find positivity in my days. I felt absolute despair and lost all zest for life. I refused to accept Usher Syndrome because I felt I was giving up, giving in.

But looking back at this now tells me that depression was not such a bad thing after all. Depression is a very normal process of grief - grief for loss of sight and loss of loved ones. Those tough years have taught me something very important: I got through it all. I did not bail out. Why? Because, now, I strongly believe that having Usher Syndrome made me stronger as a person to cope with all the losses of my loved ones. If I could change anything about those tough years, I would have continued my voluntary charity commitments. My charity work boosted my confidence, my self-esteem and my motivation. It gave me a chance to connect with people who were also going through the same things in adjusting to the gradual loss of sight. It helped to end the isolation that one can feel when losing sight.

So what helped me snap out of those tough and depressing years? The birth of my daughter seven years ago.

Sara's total acceptance of my Usher Syndrome is refreshing and has taught me so much in helping me to come to terms with my sight loss. Her attitude to my Usher Syndrome showed me how to accept my condition. Changing my attitude to Usher Syndrome has really changed my life for the better, thanks to my wonderful daughter and her actions. When she was two-and-a-half, she would wake me very early in the morning and I would say I could not hear her. She would then proceed to push a hearing aid in my ear!

However, being a single mum has been quite tough especially with my Usher Syndrome - not hearing Sara cry in the night - she quickly learned not to wake up in the middle of the night! Not seeing her when she started crawling around. There were plenty of moments of panic when Sara crawled out of my view. There still remains panic, when Sara disappears from my view at the local playground, but countless moments of joy overtake the stressful times.

She inherited my sense of stubbornness, which I consider healthy. I am stubborn by NOT letting Usher Syndrome define me. I am stubborn in that I will not let anything stop me in achieving my hopes and dreams. I recently spoke to over 200 guests, many of whom are living with sight loss, at Fighting Blindness' Retina 2014 Conference which was supported by Novartis. The conference focused on new research and developments in the search for a cure for blindness. It was an incredible feeling to get a standing ovation after my speech.

I choose to see the positivity of my years of depression in that it has helped me to mature in such a way that I now know exactly what my Dad had tried to teach me about the positivity in life. He always used to say "never look at the problem, always focus on the solution".

When I wake up in the morning and it is pouring rain, I could choose to be gloomy and see no point getting out of bed and think negative thoughts. But thanks to the power of choice, I choose to say, so what? I can have a day off and cosy up with my little girl to watch a DVD.

Sara taught me to see the positive in rainy days. She would get so excited and would put on her wellies and her raincoat and take out her favourite umbrella. This child's approach has taught me so much to see the innocence and the joy of rain, and so I apply this positivity to everything I do every day. If something does not go right for me, I look for the positive. It is so empowering to choose to see the positive in everything. It is incredibly energising.

For more information about Usher Syndrome or other causes of sight loss, please contact www.FightingBlindness.ie.

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