LIVING WITH STARGARDTS
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Paulina from Sweden

Paulina’s Story – Updated March,2014

Onset of ‘Stargardt’s
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. He then 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 Stargardt’s 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. Reading text and music became increasingly difficult. 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. This was in the days before the amzing adaptive equipment that we have today. By reading the Coles notes on various course 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, a geography teacher. After doing the first year of the A-level courses, I applied to a Teachers’ Training College that specialized in Geography. 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 was not worth it, I would find a satisfying job working with children instead – so I left school.

Working life
My first job was working in a residential children’s home but this, of course, did not offer the same challenge as teaching. After working there for 6 months, I just felt that I had been thrust into motherhood ahead of time with the daily washing and cooking involved with 14 kids of all ages! 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 using hand-held magnifiers.

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. There were no specific adaptations to the housing just because we were visually impaired.

Travel
Cheap air flights from England to the States became a reality thanks to Freddie Laker. 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 countries 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 for some 11 months.

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 deemed 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. Bj√∂rn was born in March 1991 and Jessica in January 1993.

Later years
Moving to Sweden was a big adjustment 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 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. I listen to talking books which took me some time to adjust as I read large quantities in earlier years and enjoyed “seeing” the written word. A bad reader or one with a voice that I do not enjoy, can ruin the enjoyment of a book.

In my spare time I love to run by myself. I have run for so many years so it has become automatic and is a great stress reliever!

I am lucky – I can get out and about by myself 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 disabilities to have than Stargardt’s – and, in fact, having Stargardt’s has opened up all sorts of hidden worlds for me.

Divorce
In 2009 my world was turned upside down by my husband saying he wanted a divorce. However, now in 2015, I can truthfully say that I am coping really well. I took over the house and the (now adult) kids lived with me for a while but now I have an “empty nest”. I had to ride the emotional rollercoaster for a long 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 over 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 vision 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 made her teachers very aware of her limitations (always sat at the front of the class, asked for enlargements of overheads) and asked for more time with reading-intensive homework etc. She left school with top grades. She is very ambitious and strives for the top! She loves animals and is now working in this field – which she realises is ideal as it does not have to be as challenging on her vision. The fact that she will not be able to drive has been her biggest disappointment.

Feel free to contact me via e-mail

May the force be with you!
Paulina