For those who are newly diagnosed blind, or have been told
you are losing your sight, this blog isn’t just, for you but for everyone. Yep,
you, every day in the world people start to lose their sight or, they go blind
totally. People like you, who can see perfectly well. No previous symptoms. So
many things can cause blindness, hidden symptoms and sometimes conditions you
wouldn’t imagine can cause you sight loss! As many as 30,000 people per year in
the UK start to lose their sight.
So, what goes through your mind when you first hear those
dreaded words. “You are going blind.”” Or, you have lost your vision and it
can’t be restored!
Stop what you are doing, please come with me on a terrifying
journey of in my opinion the scariest news you could ever get. Some say it’s
not death, really? I know when I went blind, I didn’t want to be alive I was
too afraid. Pure fear ran through my entire body. I shivered inside I couldn’t
breathe properly. I felt as if I was walking on a thin wire and I was up high
in the air looking down at sharp buildings, spikes, glass and fires burned below
me and any second I was about to be pushed. But by whom? As there was no one
around me. No one I could hold onto and certainly no one to hear my fears.
I called the RNIB who to be honest were cold and couldn’t
wait to get me off the phone and if only they knew just what I went through to
pluck up the courage to call them. The RNIB
(The Royal National Institute of Blind people)
Of course, I thought would be helpful. And then there is the
hospital back then, I wasn’t offered any help when I was told the devastating
news but now days there are people at hospitals who are there to offer help,
what help do they offer though, paperwork? Numbers to call? Leaflets in a
format that you can read. So, let’s go through the ways you can receive
information. Braille, most people don’t read Braille, by the way, in the US,
less than 15% of people who are blind, are said to now use Braille and it’s
less than that in the UK. Personally, I believe schools should teach children
from a young age Braille whether they can see or not, also sign language is a
lesson that I believe should be taught as an inclusive society. Even the basics
would be so helpful in so many ways that I won’t go into today, but an hour per
week or even ten minutes in Assembly before lessons start in my opinion is essential.
Large print, that’s not much good if you have already lost
your sight. And then there are CD’s. but at the end of the day, nothing beats a
real-life person. An empathetic voice. Someone who understands you, who has
been there where you are now. Not what or whom I call a super blind person as
the last thing I, wanted to hear when I was first diagnosed was you can do it,
you will be fine, why not join a sports group for those who are blind, why not
try your local walking group or cooking classes for the blind or, a tandem
group? Go to your local blind society and see what they have as far as equipment
that will help you around the house.
Stop, stop right there and let me off your very fast bus of
positivity. Please. That kind of talk is far too far down the road for me. Firstly,
I want to grieve. When someone dies, you don’t start to tell that person who
has just lost their wife that there is a dating website for widowers. I needed
to feel like there was someone there even on the end of the phone. And then
comes helpful equipment like in my case, a clock/watch. Oh, my goodness when I
went blind I had no clue of the time. I had a baby to feed I needed to stick to
a regime. When I first saw what the talking watches looked like, I was
horrified. From someone who used to love pretty delicate jewellery, to suddenly
have a large black plastic watch, even that took some getting used to but at
the same time, pardon the pun, I was grateful to my local society who did provide
me with this. No one gave me a clue how to record phone numbers. At the time
just before my sight loss, I used to take details for my ex Husbands business. I
had to keep a kind of diary that let his clients know when he would be able to
attend to their requirements.
From the day I went blind, Paper was just that, paper,
nothing on it, I learned to hate paper. Even now, I open a letter and now I
have moved on so much down that road for the blind that I know how to read
print in a way that is challenging and not pleasant, but at least it can be
done sort of. I still dislike paper.
So, it was me who thought of buying a Dictaphone to take
numbers down and messages. But that came the second most important thing to
get. Then my ex could read the number onto the Dictaphone I needed to contact
my local blind society.
But the society could only offer tools and to use those
tools I had to want to leave my safe chair. I had to get out of bed only because
I had a baby to look after on my own, this dam curse of blindness couldn’t have
come at a worse time for me. As my old Bloggers and readers will know, within
six months I lost my sight, overnight and my Dad died then my Mum. But still
there wasn’t anyone out there I could turn to for help. I pray no one will ever
have to go through what I went through. I wish I could do more to help those
who are newly diagnosed.
It’s not just us who are affected by the way, it’s an entire
family. In my case, my situation at the time, I’m not really sure my ex was affected
as I quickly learned to do everything he needed like cooking and cleaning,
which is a blog on its own and one I may tackle next. But for most families, a loving caring
partner or, older children or siblings, are really affected.
For an elderly parent, you would worry about your grown-up
child as you are not going to be around to see if they are going to be cared
for. Let me tell you, when push comes to shove, your child no matter of their
age, will be OK. I promise. Just OK though. I honestly lived through hell and
if not for my baby I wouldn’t be here now. so, your grown-up child doesn’t have
a child or loved one so, when you are gone, who will keep them from ending
their life? please pass on my blog to them read it to them or get them to go to
typing classes and buy the software called Jaws, or use a free screen reader. I
can type without looking and thankfully I have the software so that every word
I write my software reads aloud. I don’t fancy things up, I keep it real.
There is so much on line now many groups of support for
sight loss but again that has to come after the voice, the ear, the
compassionate person holds their hand as they walk along this road. One step at
a time and one hour at a time before they or, you, know it, you will be doing
one day at a time then a week and so on. I know a lot of people right now will
be saying, no that may have been you, but me, I can’t move on. I’m paralysed. As
was I and not for days or weeks, for years in so many ways. I think it took me
about twelve years to except some kind of submission but at the same time, I
still hunt the website weekly and surf groups to hope for a cure for my eye
disease. So, have I totally excepted blindness? Not on your Nelly. Will I ever?
I doubt it. Am I glad I lived and didn’t end my life? Absolutely. But if my
maker came down now and told me I would be blind forever, am I glad I lived? I
have to say yes but would I sink into a deep depression? Yes, absolutely.
You are a wife with two children. You are a Mum and don’t
work out of the house. Your Husband is the only earner. He goes blind, or, is
told he will go blind. How do you feel? Afraid for your future? Will you lose
your house? Who will drive you and your children places? Who will pay for a car
for you? How will you tell your children that Daddy can’t take them out on
their bicycles at weekends anymore? How do you help support your Husband as you
can’t for a second understand what he is going through? How are you handling
your parents who suddenly have turned against your Husband for their ignorance
forbids them from understanding? Your love life is suffering because your
Husband has totally lost interest. All the jobs your husband used to do are now
up to you. You are exhausted.
It’s up to you to take your children to school. You have to
help with homework. You have to take your daughter to dance classes. You have
to do the gardening now and the shopping, as well as the housework and if your
child is ill it’s up to you to juggle the school run with some of your children
and with your child who isn’t well, you have to try to fit in a Doctors
appointment. You have to sort out paying all the bills now and you are the
adult eyes of your household on top of all that, you are seeing your Husband in
a way you have never seen him before. You don’t know what to do. You don’t know
who you are anymore. What is your future? As a person, who may now be known as
the blind mans wife. Suddenly you have lost the identity that you have had all
of your life. A couple, a family?
You don’t get invited to places any more. You used to work
and now your colleagues never bother to contact you. Your parents don’t know
what to say so they either don’t visit you or totally avoid talking about your
sight loss.
Your Brother has gone blind but you still can see. Are you
going to have to look after him when your parents are no longer around? The
responsibility on your young shoulders now. Well let me tell you, it’s our eyes
that don’t work, us blind people once we have learned the route along that
road, do marry, do have children do go to university and can do jobs and have
very successful careers!
I guess the point I want to put out there in my blog, is to
ask you when you were told of your sight loss, what would be the one thing that
you really needed then? For me it was a person who had empathy. That person
didn’t exist then, I don’t even think they do now. Certainly not in
organisations for the blind. Once you have got over the first stage of losing
your sight, then there are organisations that can teach you how to do things in
your house, even get back into education so you can progress in the work place
of course you will probably have to look at a totally different job. And there
are not that many job roles that you can do if you are blind. I always say
University is the best thing you can do if you don’t have any or much sight,
but that takes a certain kind of person. A strong person, a determent soul. For
most the prospect of University is as far away as ever being able to see again.
So, a lot of people stay at home and in my opinion, this is the worst thing
anyone can do no matter what disability. Staying at home can lead into a very
deep depression and you won’t meet new people in your life the more positive
and confident you are on the outside, the more people will want to be near you,
if you release positive vibes, people will want to be close enough to catch
them and their human instinct a need to learn how to copy your amazing attitude
so they can simulate your behaviour, will gather people around you like a
magnet.
At this point you will realise your powerful psyche and then
you should sort out who you want around you who you want to spend your time
with and who you actually are, where you want to go in life, and then you will
be along that road and stop. Look at how far you have come along. You will feel
so good about yourself. You will be somewhere you never ever thought it would
be possible to be.
But how to get to that stage in life? Start off with
knowledge. Know that no matter how bad you feel now, how down, how scared, this
time next week you will have had something in your life to push you along, even
if you don’t recognise what that something is right now. You could find
yourself at rock bottom, and once there, there is nowhere lower to go. So, the
only way is up.
What we need to do as a society is get our organisations to
recognise our needs. Be grateful that there are people trained to teach us how
to get around with a white cane or a guide dog, but there are many countries
who don’t even have that luxury, but before we get that far, and that is very
far down our road, we need help someone to talk to someone who will understand
and someone we can trust. Trust is the most important word when you first
either lose your sight or, get told that you will lose your vision!
Everyone has let you down, your Doctors, even surgeons. Your
family and colleagues. Your friends, your God and yourself. But one person has
to be there for you, one person who can help you. One person left in the whole
world has a gift for you and that gift doesn’t have a fancy bow on it, it’s not
in glittery paper and it’s not fragrant. It’s one word. It is one person.
Trust. Someone who will be so compassionate that they will make you believe
that you know, you are going to be OK.
© Fiona Cummings
No comments:
Post a Comment