Own the Equinox Day 22: Let There Be Light

September 13, 2016

by Carol Brill

Carol Brill lives in Dublin, Ireland, and has Usher syndrome Type 2a. She is a single mother to her daughter, Sara, and is a passionate Ambassador for Usher Awareness. Her current #ImNotInvisible campaign is to have deafblindness recognised as a unique disability in Ireland. She works very closely with the Irish national organizations, Fighting Blindness and the Anne Sullivan Foundation. In her spare time, Carol is a keen golfer, playing with the Irish Blind Golf Society.  

Here we are, preparing to celebrate the second annual “Own the Equinox” campaign. Part of me hopes we do not have too many more of these campaigns. Part of me hopes that there will soon be a cure or treatment for Usher syndrome. Part of me hopes that I will get to benefit. A lot of me hopes that my daughter’s children will never be in my shoes, coping with the gradual loss of hearing and sight, and everything else that is lost along the way: playing tennis, driving a car, seeing someone’s face fully or hearing our world without hearing aids.

On the other hand, against all this wishing for a life without Usher syndrome, I am grateful for Usher syndrome. I have made wonderful friends through Usher syndrome. In fact such great friends, that I have come to regard them as family.  And I am not alone in this feeling. A lot of us have come to regard the Usher Coalition as family – the Dunnings, Moira Shea, Krista Vasi, the researchers, those affected by Usher syndrome and their families too. I cannot for one single nanosecond imagine life without my Usher friends.

Picture of a candle with an Usher Syndrome Coalition bracelet around the candle.

In a bid to help my friends in the Usher community and the deafblind community in Ireland, last year I created the #ImNotInvisible campaign, to ask the Irish Government to recognise deafblindness as a distinct disability. Sadly, we have made little progress despite a hearing before a government committee. Needless to say, the change in Irish Government with a general election in February has not helped. Now we wait for the new government to return from summer vacation. In all honesty, I find it soul destroying to start all over again, communicating with new government ministers and their personnel. To be totally honest, I find myself dipping into depression. Depression about doing this all over again, depression about facing the long dark winter nights, depression about losing more of my vision. But this depression is a little bit different to cope with. When my friends ask me how I am, I am honest and can say I am depressed. They know I have a 100% success record of coping with depression in the past. Being honest with my friends actually makes it a little easier to cope. 

Earlier this year, I had major abdominal surgery along with some complications. My recovery was a lot slower than anticipated.  My stay in hospital was challenging. I was in a small room alone with a tiny television in the corner of the room – too small to see and no subtitles either. There was no WiFi for internet. So I was quite isolated in my bed. The surgeon said I must walk regularly. But this hospital had compounded my isolation because I was unable to walk outside my room due to the many obstacles outside my door and along the corridors. All I could do was walk in circles in my small room. Nevertheless, at every opportunity, I would tell every staff member who entered my room about Usher syndrome. I was determined this hospital stay was going to be beneficial in more ways than one. On the morning of my surgery, three medical students asked my permission to observe my surgery. I told them they could on the condition they would learn about Usher syndrome.  As I met them in the theatre, they answered my not so easy questions. They had eagerly done their research in their lunch break. I was thrilled that three more medical students, soon to be doctors, had learned about Usher syndrome. 

All we can do, not just here in Ireland but in every country, is to educate as many people about Usher syndrome as possible. We may complain that we feel excluded by our society. That people do not think about disability. These people are not at fault. We cannot simply demand inclusion. Education is key and then inclusion will hopefully naturally evolve more and more. 

Having Usher syndrome has been a very important part of my recovery from surgery. My best friend, who also has Usher syndrome, was a rock.  Debs, known as @ushereire, traveled from the south of Ireland to Dublin to care for me and my daughter and my exhausted mother a few times, too. She travelled through Dublin, with its road construction works and dark winter evenings, to help me. Not many people went to the extent of cooking, cleaning, shopping and doing laundry for me like Debs did. If I did not have Usher syndrome, if I did not know Debs, I dare not think of how I would have managed. 

Debs was my light and remains my light. Today, she messaged me to see how I was. I was able to tell her I was depressed. It helped me so much to share that with her. Thanks to the Usher Syndrome Coalition, and thanks to Usher syndrome, we have all made wonderful friends through the social media networks - from America to Australia, within Ireland and the European countries too. I have my wonderful friends in the United Kingdom and the Netherlands. We may be miles apart but we are all close to each other. We are indeed an Usher Family. The Equinox is a powerful symbol of our family. This is why we Own the Equinox. We are the light to each other on the dark days. We are all in this together. It’s not about who is better than anyone else, who does more or less than anyone. We are all a family, a wonderful global support network, bringing love, support and friendship to one another. The Usher Coalition is the foundation of this very precious family. 

Here in Ireland we are still struggling with the isolation imposed on us by our economic, political and health structures. It seems our government is unable to hear or see our cries to have deafblindness recognised. So here in Ireland, we will ask everyone to light a candle on the 17th September. It will be the light of support and friendship, saying “Yes, we understand and support your campaign to have deafblindness recognised in Ireland”.

#LetThereBeLight #USHEQX #USHFAMILY

Learn more about Usher Syndrome Awareness Day and how you can Own the Equinox.

 

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