Why Our Stories
Ans Vaessen
It is nearly ten years ago since I woke up one morning to find my sight was a bit blurry. Okay, I’d had a few glasses of wine the night before but this was weird. It got worse over the next few days. I went to the GP and had some tests. By then I wasn't able to see the big letters on the chart with my left eye.
The GP was concerned and immediately sent me to the hospital for more tests. Soon it became clear there was nothing wrong with my eyes and I was referred to the neurology department. After an MRI scan, a Lumbar Puncture and an EEG, I learnt they were testing for MS.
Within a week the results came back and they suggested I probably had MS. I think I understand how it feels to get a death sentence. There wasn't a cure then and no-one could tell me what would happen next. I felt like I was walking in the dark. I was numb for at least a week but slowly I started to see things clearly and in perspective. My sight slowly returned and I chose to take control over the one thing I could take control over: how I would deal with it.
I asked my then boyfriend to marry me the minute I came out of the hospital. He said yes, without knowing what the future would hold. His unconditional love for me no matter what is something I am still very grateful for.
I also wanted children, which had now become a difficult decision. What if I wouldn't be able to care for them at some point? But then again, nothing is certain in life. So I decided not to start with medication as was recommended, because it could harm an unborn baby.
Little did I know it would take a long time to get pregnant. In a way that was a blessing, because in spite of not taking any medication I didn’t have any loss of function again. The signs didn't look good after the tests but as it turned out, I was lucky.
I learned a lot during this time. I lived my life as if I had one year remaining. I did the things I wanted to do; I got married, joined a political party, travelled, became a senior policy advisor and went back to teaching for a couple of months. But most of all I enjoyed the small things that make life worth living.
After five years, our long awaited daughter was born. Together with the MS clinic and my doctor, I then decided to not do any more tests. This was mainly because I was content with my life and felt healthy and happy. However, I kept my outlook on life. Let's live life to its fullest and celebrate all the good things. Don’t wait for the future but live in the moment. This was an important factor in my decision to chase another dream after we had moved to London: becoming a guide.
Now, almost ten years after being diagnosed with 'possible MS', I look back and see that the resultant change in mentality has brought me joy in life. But I also understand I was one of the lucky ones, and I wanted to do something for those who weren't as fortunate.
This is how the idea of a guiding event to raise £20,000 was born. The event will consist of a walking tour beginning every hour and there will also be some exclusive walks. For me it was important to do something that everybody can take part in, so there are special walks for people who are visually impaired or in a wheelchair.
Heleen van Schoonhoven
Increasingly, my father suffered from an unexplained loss of sight, especially on his left eye...a strange tickly feeling in his skin…stumbling sometimes over his own legs... On some occasions we even giggled a bit, my brother, sister and I. “He is a bit clumsy lately, isn’t he...?”
I still remember the day, when the doctor told us it was Multiple Sclerosis (MS). My dad was 38 years old, father of three children…I was 10 years old when the news hit us. Little did we know about this disease. Many questions, yet no one with definitive answers as to what to expect. There is no such thing as one MS.
In the first few years, it was this uncertainty which was causing a lot of pain. As hard as my father tried to hide his fears, we all felt it too. This was merely the beginning though.
He was tired most of the day, and slowly but steadily he started to lose important body functions. As a result, he had to give up his much beloved job which he carried out with so much pleasure. Walking became difficult, a crutch was needed, followed by a walker and eventually and inevitably the wheelchair was needed. Frequent visits to hospitals, grief over a deteriorated quality of life and always that aching thought... what’s next?
My father was not the only person in the family who suffered. The lives of all of us changed. A game of football in the back garden, a bike ride to the cherry orchard, we loved it…Taken away from us by this disease. Over the years, the number of friends gradually declined. Unable to understand what MS does to a person, and how it can change a person’s character as well.
Twice a week my father visits a day centre for people with physical disabilities. There he discovers new talents and spends valuable time with people in a similar situation. He enjoys himself in a safe and caring environment. He is not a patient but a guest. A mosaic mirror was a true piece of art and proof of his creativity. Seeing him like this makes me very proud.
It is sad to witness the ongoing struggle and his fight against a disease you can’t win. My father refers to "the assassin" when he tries to describe MS. You can never tell when it is going to hit you again.
Over the years, and to the best of our abilities, our family has learned how to cope with MS. Mentally we are very strong, and even though we know we will need to deal with a setback once more, we also know we will find a new balance again.
When Ans and I met, she asked if I wanted to help with this fantastic fundraising initiative. Immediately, I said yes because I believe MS should get more publicity thinking of my father but also to all those other people fighting against this terrible disease.
I feel privileged and proud to be able to contribute and I am sure that this exciting initiative will become a big success!