Helen, life changed forever when haemorrhages were discovered behind
As a result she lost her sight and her independence. But thanks
to her own determination that has all changed now.
Here, Helen, tells her amazing story.
"Seven years ago I sat in an examination room in the West of
England Eye Unit and listened to a Consultant say, "I'm very sorry.
There is nothing we can do to either improve or save your sight.
can now be registered blind, which will ensure that you get all
the help you need and we'll see you again in two months' time."
a few moments to pull myself together and wipe away my tears, my
husband and I left the hospital having had no offer of information,
emotional support or any idea of how we were going to cope.
were devastated. As we approached the exit doors a nurse, who had
run after us, gave me a phone number to ring when we got home.
the journey, I felt like I was dangling over the edge of a cliff
by a thread, with nobody to save me.
on tight to the phone number - my lifeline. As soon as we got home
I made the call and told the very sympathetic person on the receiving
end my news.
name and address was recorded and the lifeline was severed by the
words "thank you for calling, we will send someone to see you in
six weeks' time."
had only recently moved the 80 miles to Devon, where we had no relatives
and hadn't had time to make friends.
We live above a shop in the centre of town and therefore have no
my husband left for work and our two children for school each morning,
I was left completely alone all day with my panic, my fear and total
I not been so desperate that I tearfully demanded help from the
Social Services a few days later, I would have waited eight weeks
for the practical help I needed - and actually waited six months
for financial support.
took a full year before it felt like I was coping and three years
before I truly felt back on track.
was at this time I was introduced to an organisation called Living
attended some of their User Consultation meetings, where I met many
other visually impaired people who all had the same story of isolation,
vulnerability and fear to tell.
soon realised that the feeling I had experienced had nothing to
do with not living near family, friends or neighbours.
made no difference whether you lived alone or with family, in the
town or country or whether you were 25, 85 or any age in between.
- telling it like it is
same bewilderment and hopelessness was experienced as a direct result
of being left unsupported by health and Social Services systems.
Options Devon set up the Visual Impairment Research Team. The team,
with support from Living Options and Folk.us, are investigating
people's experiences on receiving a diagnosis of permanent sight
findings will be produced in a written report at the end of 2002
for circulation across the county.
has been a challenge to say the least, but what I have learned along
the way is immeasurable.
As an added bonus, I have met some very interesting people and made
become involved in other projects and by way of influencing changes
from another angle I completed an accredited training course and
have been delivering Disability Awareness/Equality Training to healthcare
staff for the last year.
am probably more confident now than I have ever been and I have
never felt more "equal".
anyone had told me that I would be doing any (let alone all) of
these things in a few years' time, as I sat wondering how I was
going to make it through the next 24-hours on that awful day back
in 1995, I would have said "Never in a million years - not possible!"
as I write this, I can foresee a day in the not too distant future
when, as a direct result of a research project occupying a few pages
of a medical journal, people with permanent sight loss will no longer
be left in a void of despair.
the report will be a list of the researchers. One of the names in
that list will be mine - me, Helen Smith, wife, mother, registered