Paulina’s Story – Updated December 20,2011
Onset of ‘Stargardts
When at 13 I began having difficulty reading the blackboard, my vision was tested. As my twin brothers also had vision problems, we were referred to the eye specialist at a local hospital, who referred us to Mr. Bird at Moorfields Eye Hospital in London where we were diagnosed as having Macular Dystrophy and, more specifically, Stargardt’s Disease. We were told that it was hereditary and that both of our parents were carriers of the gene – my father was Polish and my mother English and there was no history of such eye problems in their families. Our younger sister was not affected.
We were told that we would have to learn to adjust and live with Stargardt’s and referred to the RNIB for low vision aids.
Coping with Stargardts at School
After the initial onset of Stargardt’s, there was a very gradual deterioration in my vision. I had to copy notes, maps etc. written on the board from friends’ books. If I knew I had to read in class on a particular day, I would “fake” an illness and so miss school! One finds all sorts of weird and wonderful excuses to avoid admitting that there is a problem – I wanted to be like all my friends. Music played a large part in my life at school. I played the flute in the orchestra and sang in choirs and began having real problems reading the music. I almost had my nose on the music when playing the flute!
I chose to do English Literature, Music and Geography for my A-levels. The heavy reading load in English was a real challenge for me and I began to be very behind in course work. By reading the Coles notes on various books, I was able to cope in exams without actually having read much of the book!
Choice of Career
My dream career always was to be a teacher. After doing the first year of the A-level courses, I applied to a Teachers’ Training College that specialized in Geography – my chosen subject. A letter from the College informed me that academically I was accepted but because of my vision they could not accept me. I was not registered as a “disabled person” at this stage so did not know that colleges had to accept up to 3% of their intake from “disabled” persons.
Subconsciously I had been very worried about the stress of having Stargardt’s and developed a stomach ulcer at the ripe old age of 18!
Once my college rejection was known, I could openly explain just how bad my vision was – and then my music teacher understood why I was not exact when writing music compositions when my note would cover at least three options!
As my dream career would never be a reality, I decided that carrying on with the struggle to keep up with the course work, I would find a satisfying job working with children – so I left school.
Working life
My first job was working in a children’s home but this, of course, did not offer the same challenge as teaching. I went through a number of jobs that had no real future. Finally, the RNIB informed me of their secretarial school. They had a residential college in the heart of London and I attended for 6 months getting a sound secretarial training that was modified for those with visual impairments.
I worked as a secretary in various levels of management for some 15 years. I used a computer large print program in the later years but could otherwise cope quite well.
The Dating Game
Going to dark discos with friends was a real challenge and just forget eye contact from the opposite sex! However, I did not put my lack of boyfriends down to my vision problems – just that I had not met the right boy.
In My Twenties
By this time, I had real probelms seeing bus numbers, recognising people that drove by in cars or on the other side of the street. I was able to read large print books. I moved into an apartment complex in London that was owned by a blind association and all my neighbours were visually impaired – many of whom I knew from my secretarial course.
Travel
Cheap air flights from England to the States became a reality thanks to Freddie Laker and so I planned a solo trip over to the States visiting distant relatives in San Francisco and then taking the Greyhound bus over to New York to visit my Mum’s old school friend. This opened up a whole new world. Although my vision was limited, experiencing life in other lands was very fulfilling. You will read below that I moved to Vancouver in Canada to work/live for a year. At 29 I took my backpack and headed off alone from Vancouver to the South Pacific visiting Hawaii, Fiji, the Cook Islands, Tahiti, New Zealand and Australia.
Marriage
Having visited America, I toyed with the idea of moving over there for a year but the Green card problem was a bit of a hinder and going to Canada was much easier. I found a job as a mother’s help and headed to Vancouver in 1980 – only planning to stay one year but 10 years later I was still there and had become a Canadian Citizen! I saw a TV program about the visually impaired learning to ski – growing up in England, this had not been an option! After my first time on cross country skis, I was seen to have real determination and was asked if I wanted to compete in the British Columbia Winter Games – this led to being invited to go to Norway to represent Canada in a yearly ski event for the disabled and then to becoming a member of the Canadian National Disabled Cross Country ski team. My life then revolved around training for the season and little else!
At a World Cup in March 1989 I met Bertil, who was a member of the Swedish team. That summer he came to stay with me in Vancouver for 8 weeks and that December we were married! We moved to Sweden in February 1990. Bertil’s visual impairment was not hereditary and after genetic counselling, we decided to start a family. Björn was born in March 1991 and Jessica in January 1993.
Later years
Moving to another country has been the biggest challenge as it is very hard to make new friends as I find it hard to recognize people. A new language was also challenging. I realised that I learn through seeing the written word – consequently, my spelling in Swedish is just awful! My kids were my eyes – and they began to read numbers and words at an early age!
Once the kids were a little older, I took a multimedia course and now work as a web developer. I have all the adaptive equipment I need with a lovely, huge flat screen monitor on an arm so I can have it closer to my nose on “bad eye” days!
My only access to print is via a CCTV or talking books which can be very frustrating as I read large quantities in earlier years and enjoyed “seeing” the written word.
Still, in my spare time I run by myself, can get out and about and ask if my eyes fail me. As my mother always told me, “Your eyes may not work that well but your voice does”!! There are far worse ailments to have than Stargardt’s – and in fact having Stargardt’s opened up all sorts of hidden worlds for me.
Divorce
In 2009 m y world was turned upside down by my husband saying he wanted a divorce. However, now in 2011, I can truthfully say that I am coping really well and took over the house and the kids live with me. I had to ride the emotional rollercoaster for a while but my positive attitude and stubborn streak has helped me enormously. I now take a white cane to use in places I am not familiar with and have even managed international travel by myself. Airports are a real challenge but, by hook or by crook, I always manage to get on the right flight! After a year of being divorced I even ventured out via Internet dating …. but I could write a whole book about that part!
My daughter
My daughter had poor vision which was corrected with glasses when she was young. Because of our history, she was checked regularly every year. In my daughter’s teenage years the specialist saw a development and this has worsened – it seems that she has Stargardts. However, at 15, she was very down to earth about it all and has seen that I have led a full and active life and that she can do the same. She has made her teachers very aware of her limitations (always sits at the front of the class, asks for enlargements of overheads) and asks for more time with reading-intensive homework etc. She is very ambitious ans strives for the top! She loves animals and wants to work in this field – which she realises is ideal as it does not have to be as challenging on one’s vision. The fact that she will not be able to drive has been a disappointment for her. She has been to support group meetings for a visually impaired youth group and has regular contact with a vision team.
Feel freee to contact me via e.mail: pauteg@gmail.com
May the force be with you!
Paulina
