HAPPILY EVER AFTER
By John Sanders
This article first appeared on nurseseyesite.nhs.uk in 2003.
Once upon a time, about 15 years ago to be exact, hundreds of people responded to a newspaper article and a radio item about nystagmus. The avalanche of enquiries was very exciting for us new and naïve committee members of the then Nystagmus Action Group.
The letters echoed our personal experiences, either as adults with nystagmus or as parents of children with the condition. They also made us more convinced than ever that we were fulfilling an unmet need.
“When I saw the article in ‘The Independent’ I was amazed at the strength of the emotions it caused in me – relief, hope and gratitude,” wrote the mother of one toddler with nystagmus.
Like many other parents, neither she nor her husband had heard of the condition before and were anxious about the outlook for their son whose prognosis she described as “not so much negative as vague.”
At the same time, an adult wrote: “As is probably the case with most other persons who have nystagmus, little knowledge of my condition has been gleaned from opticians or reference books.” She went on to mention a frustration common to many of us: “The general public finds it difficult to believe that any eye defect cannot be corrected by glasses.”
In our innocence, we committee members imagined back in 1988 that 15 years on the Nystagmus Network (as we are now) might be almost redundant. We hoped that after a few more articles and media appearances everyone would know about nystagmus. At the very least we expected all parents of newly diagnosed children would be given lots of information and pointed in our direction.
Sadly, that is not the case. We still hear from many people who are struggling simply because they have been told so little about their wobbly eyes. In the worst instances, some people -- we would like to think fewer than in the past – don’t even know that they have nystagmus.
NN will be celebrating its 20th birthday next year, but many people are still surprised to learn of our existence. As a result, they suffer alone and in silence, as this email (at least advances in technology make spreading the message easier) from Canada shows:
“I have had congenital nystagmus since birth. I am now 40 but I have never met or talked to anyone else with the same problems. I have read the information on the website and the guestbook postings with great interest. I can really relate to a lot of the comments that are being made here and it does really help to know I am not the only one.”
ABRACADABRA!
Our aim has always been to fill this information gap by working in co-operation with professionals in the fields of health, education and social services. We know it may not always be possible for you to spend the time you’d like with patients because of the pressures of work.
That’s where support groups like NN come in. We do have the time to talk to the parents of a newly diagnosed child. And we have parents who have been through the maelstrom of emotions – the guilt, the worry about the future, what to do next – themselves.
Of course, many of us are adults with nystagmus, so we can talk about our experiences at school, work and life in general. Parents – indeed other adults as the email above shows – usually find that very reassuring.
So, if we were granted one wish it would be this: for ophthalmologists, optometrists, orthoptists and of course eye nurses to tell people about NN. You are the gatekeepers. With your help, we can hopefully put an end to emails like this:
“I have congenital nystagmus with astigmatism. I am now 28 and recall all manner of difficulties in early life. Teachers seemed to have no understanding of the condition, I found it hard to read notes on the blackboard and subsequently could not keep up with the class. I found sports very difficult and this led to bullying. All of this left me anxious and depressed, no doubt worsening the condition!”
If the parents of that young man had known about NN when he was at school, I’d like to think he would have had a much easier time in the classroom.
Don’t get me wrong. We don’t claim that we can help everyone with nystagmus. Some people simply don’t accept that there is no miracle cure. And you don’t need me to tell you that there are a minority of very difficult patients out there. No matter what any of us do for them, it won’t be enough.
But most people do benefit either from joining NN or reading or listening to our information. Sometimes all they need to know is that there are others out there in the same boat. Or that there is someone they can turn to if they’re having problems due to nystagmus, want a question answered or a shoulder to cry on.
We don’t have a magic wand we can wave and make everybody with nystagmus better. But we can help most people with the condition live a little more happily ever after.
© John Sanders, 2003
This article expresses the personal views of the author and does not necessarily represent the views of the Nystagmus Network.
Email: John Sanders
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