Heather’s story of an American in London

Nystagmus Network logoRead the first part of this article by Heather written for the Nystagmus Network and published in the 100th edition of their newsletter Focus in October 2013.

When my company relocated me to London in 2011 to start their European technical support office I was very excited but nervous. I’ve never been afraid to move somewhere new where I don’t know anyone, but having never been overseas before, moving to another country was a bit intimidating. Initially I focused on the main logistics, such as finding a flat and working out the timing for the move. My company put me in touch with other employees who had or were relocating to answer question and make recommendations. A few weeks into the planning process I realised I had questions that my colleagues couldn’t answer effectively because they were around being visually impaired.

Previously I had joined a mailing list related to aniridia to learn more about my condition. I decided to post on the list to see if anyone had or lived in London and would be willing to help. I immediately got a positive response from James at Aniridia Network UK. He not only volunteered to answer any questions on e-mail but also meet and help me in person once I moved over. I’m extremely thankful for the help that James provided me. Although being visually impaired provided me additional challenges and considerations when relocating, it also provided me access to a local friend and support group that I wouldn’t have had otherwise.

Aniridia Network UK and conferences

I am a shy person and have never before joined a group for people with a visual impairment, so I’ve never had the chance to share experiences and meet people similar to me. James not only helped me with my move but got me involved in Aniridia Network UK (ANUK). I was able to make friends that have aniridia, nystagmus and other conditions that I have. It is very comfortable to interact with them because if I have an issue with something due to my vision, such as not being able to read the menu or a sign, they will likely have the same problem. With already being the new person and the outsider because of being American, it was nice to meet people and not worry as much about issues with my visual impairment. The organisation has also helped me learn a great deal about not just aniridia but my related conditions.

After being a member of ANUK for six months they recruited me as a volunteer and since then I have been their conference coordinator. I was responsible for their 2012 and 2013 annual conferences. It has been extremely rewarding to put effort into a charity that means something to me personally. I had no experience in organising a large event when I started and have learned a tremendous amount. Additionally, I have had the opportunity to work in depth with ANUK members and medical professionals that I would not otherwise have been able to work with. The work in the months leading up to the conference can be very time intensive but the positive feedback from those that attend make it all worth it.

James and the other members of ANUK have made me more comfortable with talking about and exposing my visual impairment. When I am regularly surrounded by fully sighted people it is easy to feel like the outsider even though there are a lot of people going through the same things as me. Through Aniridia Network UK I connected with Nystagmus Network (NN) which provides similar support for people with nystagmus. Prior to joining ANUK I don’t think I would have been able to share my experiences with NN.

Life with a visual impairment

My visual impairment has been both a disadvantage and an advantage. Most days no one notices that I’m visually impaired. Some of my friends don’t know about it, not because I’m embarrassed to mention it, but because it has never come up in conversation or been relevant. Because I’m accustomed to being visually impaired, most the time it is only a minimal consideration. For example, while on a trip to Switzerland the biggest problem it caused was I had to buy a new pair of sunglasses because I lost mine and the sun is too bright when hiking in the Alps for me to not have them. During the trip my travel companion actually relied on me to get us around more than I did her. There are times in everyday life that it can cause unexpected trouble though. For example, when I’m in a dimly lit restaurant when a menu is in tiny print it can be very difficult for me to read the menu. Normally I look-up menus in advance for this reason, but when I don’t know in advance I’m going to a restaurant I can’t do this.

What I’ve learned is rather than hiding my visual impairment and trying to be “normal” I have to embrace it and use it to my advantage. I have skills that I probably wouldn’t have without it. There are opportunities available to me exclusively because of it. Overall I am a stronger person because I am visually impaired and accustomed to challenges, which has helped me generally throughout life. It is only as much of a hindrance as I let it be.

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One Response to Heather’s story of an American in London

  1. Pingback: Heather’s story of growing up with aniridia in the USA | Aniridia Network UK

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