DIARY OF THE LITTLE DEALER

Here I am just waiting. I have been waiting for a few weeks now for the new gardener to come and today for the fifth day, I, wait. Again. As day one I just hoped as it was a nice day, day two and three the same. Day four, he said he would come end of last week so I waited. Now day five? I have the best text so far from him.

“Fiona, I will TRY? To get to you today.”

Well, dog run cleaned and scrubbed. Rain has come just to give an excuse not to come perhaps? Even though it’s lovely now and sunny, I wouldn’t   mind and we don’t have grass at the back to do. Really, we have 90% concrete but you almost wouldn’t know it. It’s almost like an Egyptian carpet out there with weeds coming through the cracks of the slabs. I know we have an eighteen year old son, I can hear some of you shouting that, but others are shouting Yep, he’s a teenager. And he has lazy its

 

So my cheque is ready for £80 for the two hours. I have cash if he asks for more if he has bought any plants to put where the huge shrub is in the front garden.  I like the shrub, but, it’s so close, no, it’s against the brick work and this worries me. mind you, the road out the back with its enormous trucks going by if they don’t do damage to our house, I will eat my hat. I swear it’s on a tilt now. The dog toys roll along the floor on their own, unless it’s my darling Black Beauty coming to play? God rest her soul.

 

Can you believe it’s been seven months now since we lost her? There isn’t a day when I don’t think of her and remember the absolute pain Hub and I went through. Oh it was torture. I hurt so much in my stomach. I really thought we would have her for another few years. She is a miss in our family for sure and LC hasn’t been the same since BB died.

 

I had a pet dog for seventeen years so many years ago and she was my life. I didn’t get out of the house in those days unless my ex took me and he worked so much as he didn’t pass on the lazy its genes to my son that must be me. Haha. Well I had my Kara ten years before my Son was born and she was my baby. At the age of seventeen, we lost her and it killed me. But to lose BB? It was ten times worse. I think because BB was my first guide dog. There is something so very special about them. As especially you’re first. It’s like they have given you their lives. They live to give life to you. I hold my girls faces and tell them how much I love them every single day. Mind you, right now, I have Long Chops face on my lap and really she keeps insisting on plonking her head on my lap top and it looks like I’m writing in  a foreign language until I delete all of the words my darling LC has typed for her Mummy. So right now, I’m not telling her I love her but, shouting “For goodness sake!!!”

 

Sitting in my conservatory, the rain has started again but really, no reason why the guys can’t come? I have seen more water from a bird flying by after a night on the lake. Hehehe.

 

Teen at college. All day. Then where? Well, it depends on where Jo the taxi will take him?

 

Really, he thinks he’s got his little business going. He charges a pound per lad to take to college. He’s blooming going there himself?

 

I guess more people more weight, right? Hmm. My lad has always been a wheeler and dealer. Ever since he was six and came in with a rule from school. I asked him how he got that. As I knew it wasn’t his. Answer?

“Mummy, I had a rubbish pencil and I saw the Rule so asked Tom if he would swap.”

Next day, he came in with a beautiful pen. I was shocked. “Where did you get this?

“Mummy, remember that rule? I saw Billy with this pen and swapped him.”

After I told him off telling him that Billy’s Mum would be cross when he took a plastic rule home in place of his beautiful stainless steel parker pen, I was mortified, he said it was fine and because Billy had loads of pens, but no rule, he swapped.

 

Oh next day? A full set in velvet and chrome case of sub tractors and other mathematical equipment was found in his bag. Yep. He swapped his pen.

 

Next day? In his bag? £15.

“Little man? Get yourself in here?

He only blooming sold his or who evers chrome kit.

 

And that followed him right through school. Even finding a shop when he was fifteen that sold cans of coke half price. Oh my garage was full. He sold them and had a little profit going.

 

I must admit though I wouldn’t tell him at the time as in the early stages, I was ashamed. But I’m quite proud of him now. He just has one more thing in his life to swap then he and I would be happy, as specially him in the future. Thing is, no one wants to buy what he has.

 

OK before I say too much. I shall go now and groom the girls before it rains again. Then do the floors and then make dinner. Last night we had a very healthy salad. Hmm. I made loads of different kind of salads. The boys loved it. Tonight? Me think something with taste this time, what do you reccon? Xxx

 

BLOG STATS APRIL 2015

So this month’s stats? A bit of a change from last month. These stats are just the top ten, thank you again to the other 43 countries who have come along to join this crazy family and tour with me on the big Blogget bus.

 

United Kingdom	1184
United States	1031
Russia	117
Canada	96
Germany	80
France	31
Australia	23
Switzerland	22
India	19
Greece	14

 

And this week? We have had one new country join us and hope they will visit again? I would love to know how most of you come across this blog page. Either by recommendation, advertising or by chance? This week we have had

United Kingdom	435
United States	385
Canada	46
Germany	22
Greece	13
Australia	12
India	12
China	11
France	9
Spain	6

And now in total?

United Kingdom	34355
United States	21011
Ukraine	7076
Russia	2621
Germany	1740
Mexico	646
France	604
Canada	601
Japan	597
Poland	265

 

You Bloggets keep this blog going. Thank you for all of your comments this month too. Really appreciate them all.

 

A FULL SHELF BY FIONA CUMMINGS

A FULL SHELF

BY FIONA CUMMINGS

A little girl so lost and alone

No pals has to play on her own

Constantly falling and hurting herself

Sits in the library last book on the shelf

Silence surrounds her

Feeling like no one there to care

Treats she can’t share

Touches her hair

What does it look like?

Looks in the mirror

Nothing, as she has no sight

Wants to ride a bike

But her parents are too afraid

Wants to make sand castles

With a bucket and spade

As the ocean roars in the distance

She hears children playing

Who is that girl

She can hear them saying

So badly she wants to say hello

But in fear of rejection

Just like before

Once again she will face a closed door

Chained to her Mother’s hand

Who doesn’t’ understand

This little girl needs a life

Yes she will get into strife

But this is better than feeling so lonely

At her house it’s so homely

But the little girl isn’t happy

She hears tears from her Daddy

She wants to run free in the woods so sappy

Climb Mountains

Dance in fountains

Run for the ice cream van

Go out whenever she can

Not be tied to her Mum

Restricting her of any fun

She doesn’t want to be treat differently

She wants to sing in harmony

She wants to read like you

She wants to put on paper ink of blue

She has been told she has to live away from home

In a strange and cold zone

This is her only chance in life

But the pain of that cuts like a knife

This little girl is so much loved

But she is fed up of being laughed at and shoved

Her parents have to cut the rope

If there is to be any hope

As sadly this world

Has no time for this little girl

So behind gates she must go

To learn how to cope

To run freely

And be with her other family

Children like her

So sweet and pure

Born into this land

Where still people don’t understand

Next time you see a little girl like this

Show her your heart

Rather than your fist

Know she is like you

Just her eyes don’t work like yours do

In the future you just don’t know

A little girl like her, could be born to you

Please compassion, can you show

Perhaps it’s not fashion, but it won’t hurt you know?

She could be your sister

You’re Mother of the future

Your granddaughter

Your teacher

Allow the little girl to laugh

Love and believe in her

And give her the books, to fill up the shelf

 

Copyright Fiona Cummings 2015

YOU BY FIONA CUMMINGS

You

By Fiona Cummings

 To love you is to understand you

To need you is to want you

To trust you is to believe in you

To feel safe is to be held by you

To know love is to be kissed by you

Butterflies flying is to be excited by you

Trembling hands are to desire you

Our two hearts beat as one, because I love you

Each breath I take, is for you

I wake each day to look at you

I sleep at nights next to you

I dream of you

I guess you could say, I’m in love with you

 

Copyright Fiona Cummings 2015

FLUSHED

As blind and partially sighted people, we do have moments of great embarrassment shame and totally humiliating, but some time later, we can laugh about it.

 

Me trying to dry my hands in public toilets not in a hand drier, though that is what I first thought it was, but after banging it to fix it, as that’s how you fix everything,

 Right?

 After calling the machine in front of other ladies, only to find out I was trying to dry my hands under a sanitary towel machine.

 

In public toilets again, I once pulled the toilet roll I was horrified to find out that you had to get your paper outside where the sinks were and ladies putting on makeup? I also had never seen such a machine. It was huge.

 

Well, blush away, rather than flush away, but it was some kind of disposable plastic covering to put on the toilet seat for hygiene.

 

And another toilet moment, the door was open. To go into.  I went in as you would; only to lock the door, well try to as it wouldn’t lock. Anyway you know what it is like you have found a toilet, so use the blooming thing, right? Just keep your foot against the door. Well, in those days I didn’t have a dog or cane. So no one would know I was blind. As I turned to find the loo. I found a lady sitting there rather terrified.

 

That was an Oopsie moment. Or a poopsie moment.

 

Then with another blind friend. We needed the loo. So we had only enough money for one. So we said there was no one on the gate so we would just pay for one and the other would squeeze through. It was 20p too. Whatever happened to the expression to spend a penny?

 

Well, I went through. Then I tried to hold the gate for my friend. I pulled the bar with one hand and with the other, tried to pull her through, telling her to hurry, as the lady would be back from her break.

 

Only to hear the lady saying

“I’m not on my break.

 

And finally, nothing to do with sight loss. But to do with toilets. I was in America with my dear friends. The three of us all ladies went to the toilet. When we were in there, there was an old lady shouting down her mobile. Well, she was obviously a little hard of hearing. So she really shouted in the deepest voice. She was new-fangled with the mobile and kept saying over and over again. Not thinking we could hear I’m sure.

“Wan a buy me? Wan a buy me?

    Well, my friends and I were in our own toilet cubical, and we didn’t’ dare come out? We couldn’t face the lady, well; we at last, had to come out as our men were waiting, obviously so was hers? Haha haha

Question is, who was buying her and how much for?

 

 

SO TURN ON THE LIGHT?

I was chatting the other day, just wondering out loud. I’m in groups for those who are affected by RP. My eye disease. I have oftern wondered about those groups and what would happen to them if we were all blessed with sight? Some kind of new treatments, cure or a gift from our maker?

 

Would those groups still carry on? If so, what would we talk about? As the majority of conversations on there are troubles with our eyes, sometimes we have a light laugh about something and then we ask advice. There are people on there who have partners or siblings even children who have this condition rather than themselves.  It’s kind of to let off steam.

 

I remember when I first went blind, I had no one. No groups, no friends not even family. How could I talk to my Mum about it? All her life, she spent trying to find help for my eyesight. All over the world we went! She lived in the bubble of fight for sight. To face facts that her little girl would end up blind was a nay nay in her linguistic ability.

 

How could I tell her or talk to her properly when A, my Mum and I never had that kind of relationship sadly and B, we as a family were with the knowledge that my Dad was very ill little did we know he had weeks to live just after my blindness occurred. Quickly and brutally overnight, I went blind. It was a total shock to my whole system.

 

So if only I knew about groups in those days? Mind you, would I have been ready then to contact people? Not sure as to even try to breathe was a huge effort. I have never been so afraid in my life. Not ever. And my life has been full of fear from first night at boarding school when I was six, to being left in a dreadful hospital with archaic conditions in Moscow in the mid-seventies at the age of six for almost seven weeks without seeing my Mum Dad brother or even anyone who spoke English. From the Russian Mafia to so many other times in my life that I haven’t written about here or even spoken about.

 

I was totally terrified. I hadn’t been around blind people since the age of twelve and really believed that I would never go blind.

 

Now days there is so much help out there and the internet provides a safety net and thank goodness for that, but way BAC for me seventeen years ago, there wasn’t much about, well, not that I knew of. The so called experts of their time were cold individuals. Right then, I needed a shoulder to cry on and the groups now days are great for that.

 

So, brings me back to what I wanted to talk about. If we all have sight in ten years’ time, will the groups survive? If not the groups, what will you talk to your other ex-blind friends about?

 

Now our blind friends we talk about so much, politics, weather, holidays, but a lot of what we discuss ends up asking how we did it? Where did we find it? Was there any help there? Is it accessible? We laugh at each other’s mistakes and feel pride in each other’s achievements. So in ten years?

 

For me? Oh I can dream. I do dream. What will I do in life? Where will I go? What will I do when I get there? I will be in heaven as far as I feel.

 

I hopefully won’t get arrested. As I will just want to look at everything with great detailed recording from eyes to brain to heart. I would eat the air of sight. The pain free life of walking without falling, bumping into anything mind you, I must say, since I have lost my sight, I hardly if at all, fall now but when I was partially sighted, I did have the odd fall. Perhaps a few times a year.

 

Because I see through my feet now. Sounds OD I know, but I feel I do, I concentrate more.

 

I would have constant butterflies in my stomach. Pure excitement. What would be next just to open the front door and know who was there would be a huge delight for me. The stress of not knowing is awful. I used to have an intercom but not now, though I for sure would recommend those for people without sight.

 

My friends, I would meet up with them and we would be free to go wherever. Not where dogs were happily accepted or where we knew the route to or stay in the house because it’s easier.

 

We would see each other more oftern I think.  Because it would be easier to get there and back.

 

For the first time, we would be able to look into each other’s eyes. What would we see? Would we look at our friends in a different way? Rather than look into their soul their words their hearts, would we look at their appearance? Their figures? Hair make up clothes? Would we become more critical? I wonder if we would not hear the voices of true feelings and see the false ways.

 

I hope not. I would hope I would have learned a very difficult lesson of life and that is to see someone for whom they are rather than what they are.

 

I would hope I would never forget how difficult life could be and help others who need it. I hope I would spend the rest of my life dedicating it to the needy. Needy? What a dreadful word that is. But how else to put it? I have been spoken about before as needy. I hated that person and I will never again speak with them. Needy? Really? Is that why they came to my rescue? No. I thought not.

 

My Husband and I need no one. Would like someone but need nothing. We have made this life on our own. If occasionally we may get kind help, we are grateful. But we can survive without it. And survive it is. As lifes challenges are expensive. And challenging to the mind heart and soul.

 

So we could tell stories of what we have done on that day and I expect the first year would be simple things that sighted people take for granted. But second year, would we be too busy in our new lives to come onto the groups we are in? I hope not, I would hope we would never forget our black days and it could become like a kind of religion, I suppose. A gathering of people who are grateful and respectful. I mean, that is what religion should, be all about right? Sadly now days that’s not really the meaning.

 

So do you dream of days of sight? If so, what would be the first thing you would do? For me? I would look at my Son until he told me off I would look at my first and forever love my Husband and see how he has changed. He was twelve when I could see him.

 

My Hub always says. I would see him and run a mile. No. I wouldn’t. He was a good looking little boy and I’m sure is still lovely. But I would remember him saving me from madness and total forever darkness and showing me that the blind can see, just differently to those whose eyes work better than ours.

 

I would remember the love he showed me after so many years apart and I would remember the days when I melted into his arms. The safety of his love and I would remember the times we have struggled. But we got there as a team. He and I will be a team forever I pray. I adore him and want to walk by his side my whole life. And when time comes when we must move on to the next land, if there is such a place, I hope to wait for him or find him if he goes first.

 

I won’t stop loving him because I will see.

 

I won’t ever forget this sometimes hell of a life in the dark.

So please turn on our light?

 

SUPER BLIND? NOT ME!

Hi it’s the evening again. My heart has stopped crying, no organisation have stolen my Son. He hasn’t been hijacked. The blanket wasn’t used.

 

So did you not read my last blog? If so, then you will not know what the heckers I’m talking about

 

Anyway, all is kind of restored. The grumpy teen is home. I dare not talk to him. Goodness knows what is going on with him. All yesterday he was acting weird. This morning angry and tonight after his bike ride? Oh it’s hell here. Those who are going through teenage troubles, I’m right there with you. I hate this generation. Wouldn’t wish the arrogant little twerps on anyone. Haha. Having said that, he is loved by me more than the most loved thing in the world

 

Just made dinner. It was gross. Am I alone in this field? No, not as in cow in pastures green. But I have been cooking since I was seventeen. And my cooking is getting worse. I’m so dull in the kitchen now. I can’t be bothered. I haven’t even eaten today because I simply can’t be bothered to cook for one person. The boys eat meat and I don’t so there you go. I have a love hate relationship with food. I love to eat but hate my own cooking.

 

I have found it is stressing me out beyond belief. It doesn’t help that I can’t work the hob. It’s one of those awful anti blind cookers. You know the flat glass without buttons?

 

Like touch screen. Hub can do it but he is under the category of super blind.

 

It’s so depressing too when you can’t’ see what’s in the freezer. I am great at guessing. And guess nine out of ten correctly. But the thought of just going in there and trying to find something in the dark to eat?

 

Then packets. I buy them. Put them away. Then forget what they are. I should buy one packet per week one jar and leave it at that. Then I would know the difference. But shopping for one pasta sauce means I can’t buy jam or marmalade.

 

If I order mayonnaise a jar that is, I can’t buy a sauce. If I were to stick to one jar per week. And sometime I order mayonnaise, and it comes in a jar, other times it comes in a bottle. If it comes in a bottle, I can’t order tomato sauce. Problem is, I still shop like a sighted person and then get so cross and upset trying to find things. Tins? Oh don’t start me on them. Let’s just say, we have a lot of casseroles in this house.

 

Don’t get me wrong, I know of blind people who are amazing cooks. I’m not one of them that’s all.

Because I have been doing it for more than half of my life, I’m bored fed up of it. Rebelling against the kitchen. Haha haha.

 

OK I have done enough whingeing over the past couple of days. I promise tomorrow, no matter what rubbish is thrown my way, I will not write about it. Tomorrow, I am going to write about something that has interested me for a long time. More on that later.

 

For now? I shall love you and leave you.  For those who are having a bad time, tomorrow I hope will be anew day and remember to do something today for you. Don’t think for a minute that you are being selfish. For me today, I’m going to eat a bar of guilt free chocolate. If one of the boys says one single word to me, they will get it big time. I haven’t had chocolate for six days. This bar that is coming with our shopping has my name on it and it’s in capital letters.

Melting kisses. Laters.

 

SICK WITH WORRY

All I’m saying is what a day. Really. I could punch someone very hard in the face and I’m never this won up. I just feel very sorry for someone right now because of a total greedy unintelligent mean cruel person who has just really really P’d me off. I thought I could trust someone with something but obviously not. And this person who has been ripped off by the ****, I hope they will get their day where they will see the person rot in hell.

Yes, I’m one angry Mama.

 

Well, that was yesterday, last night, this is today. A new day they say, right?  I’m still cross angry and whatever, but boxing gloves are off.

 

Waiting now for my neighbour to come over. Just had some work to do and will continue after my neighbour leaves. My poem I wrote yesterday has had a lot of kind response and I have had a few contacts with regards to that and the other article I wrote on treatments and research for RP.  It’s always great to receive feedback from you.

 

So I think this blog will be written in three parts, as I think my neighbour is coming over now.

 

I shall write till she comes though.  So my day so far?

 

Well, I’m glad to announce I’m not so red, more like a pinkish kind of girly colour. The wind is wild, and my Son is on a charity bike ride fifty miles away. Last thing I heard was he was “in the back of a van. He was told if the police stopped the van, to put a blanket over himself.

Oh my God. So what van? Who with? No seat belts in fact no seats?

 

Tried to phone him now but not picking up. Not even ringing so what does this mean? Has he run out of batteries? Is he in an area where there is no signal? Is he in trouble? He told us last night that he had to sign a form to waver any responsibility if there was an accident. Now I’m feeling very sick and very worried.

 

 My neighbour came. And now is gone. She is having so much trouble with her building work. Trying her best to stay friendly with everyone. Stress? She has some bless her. But she went away with a smile, and this is the main thing.

 

I wish it were so easy to make me less stressed. Now I don’t know where my Son is and who with? I sware I will give myself an early grave.

 

On that note, I have some work to do hopefully it will help to break down the blooming chest pains I’m having right now.

 

Until later with I hope good news. X

TREATMENTS AND RESEARCH FOR RP 2015 PART TWO

From my basic knowledge of our retina, it is in the back of the eye and is as delicate as a wet bit of tissue paper.  It works the same way as the film in a camera and it has the complex job of collecting the light that enters the front of the eye and converting it to electrical signals that are then transmitted as information to the brain.

 

So our best hope is cell transplants.  Research is being studied and the cells not only migrate to the retina, and show early signs of connecting to the brain, a necessary step in restoring sight.

 

The transplants worked best when the eye was damaged. Whereas a healthy eyes the stem cells do not migrate to the right area or even the right part of the eye.

 

This is amazing. So healthy eyes transplanting the cells don’t know where to go, damaged eyes, the transplants work so well, finding the correct place to go and start to work by restoring sight.

 

These cells somehow sense they are needed, and begin to differentiate into cells that could take on the job of retinal neurons.

 

But first the technique has to show good results in animals, and then start on human trials. The experts suggest within ten years a number I have heard so much before. But let’s hope less than that as I heard last week someone saying that in science, just one penny needs to drop and before you know it, there is a huge change. Well, that is the simplistic interpretation of what was said.  

 

Sometimes when we look online it’s really confusing and so much medical jargon. Terminology that may as well be a foreign language to us. I hope I’m writing these words in a way we can all understand.

 

I’m sure most of what I am writing the majority of you all have read before and even have been able to find more advanced research, but from my knowledge, there are still a lot of people out there who can’t seem to obtain any useful information, for whatever reason.

 

As for Gene therapy

Researchers at Oxford University have discovered by replacing a missing gene into the retina they can prevent cells from degenerating.

 

The therapy even improves the sight of those who are just starting to lose their sight. The treatments have surpassed expectations.  

 

For two years now two men whose sight was dramatically failing, have shown signs of improvement.

 

Gene therapy can be applied before the onset of vision loss.

It will be a one off treatment too.  The two men, who have been tested with the gene therapy, don’t have RP but a form of a disease which is similar.

 

The process takes between forty minutes and two hours. It has been likened to a cataract operation and has shown to have immediate results.

 

Roughly forty million people across the world are blind and for a long time most forms of blindness, were permanent conditions. But recently scientists have made headway into changing that.

 

 New treatments like stem cell gene therapy and bionic eye implants are already starting to restore some patient’s sight.  These technologies are expected to keep improving.

 

Some researchers are working on the benefits of using a patient’s own stem cells. This would be better because it skirts the ethical issues of embryonic stem cells, and the patient’s body won’t try to reject the cells  

 

Another project which is in early stages implants for the brain, rather than the eye. The idea here is to tap direction into the visual cortex, the brain region that processes sight.

 

So there is hope for the blind. It’s now all about awareness, funding and great minds who believe in the work they are researching!

LOOK THROUGH MY EYES BY FIONA CUMMINGS

LOOK THROUGH MY EYES

BY FIONA CUMMINGS  

 Look through my eyes

There’s no disguise

Not one single surprise

Look through my eyes

 From my point of view

No sunsets

No pretty view

Regrets?

I have a few

That’s how the old song goes, right?

For one day and night

Take my lack of sight

See how much it changes your life

Simply pour from a boiling kettle

Cut your leg on sharp metal

Sting from the prickly nettle

Have headaches

Bruises and breaks

Sunshine?

Not for me

For these eyes of mine don’t see

A pretty bluebell?

Yes I have smell

But just to see for me

Would take me out of hell

To walk free

And go wherever

To know others are not ashamed of you

And will love you forever

If only I could see

It would mean freedom for me

To leave the four walls at whatever time

What have I done to stay in this prison?

Committed a crime?

Just for a moment listen?

 

To look through my eyes

Just for a short while

See how I paint on my smile?

Simple things in life

To you, give me such strife

To look in the mirror, before I go out

Is so frustrating I just want to shout

What do I look like?

Old young?

Why have my eyes

Deprived me from fun?

Waving my fingers in front of me

Trying my best to see

Even a shadow?

Would mean the world to me

My child’s beautiful face was stolen

When he was just born

Now he’s an adult, what does he look like?

I’m so torn

I wish you could see like me

Just for a day and night

You would see a world full of shivering fright

Open your eyes turn on the light

There would be no difference

From sunset to dusk

Difficult to judge distance

Always feeling like you are a hindrance

Hating your every existence

Pain is a must

Feeling alone

No one is in

When you pick up the phone

Not knowing the time

Can’t see the clock

Can’t turn the heating on

Or off when it’s hot

Hearing laughter outside

But they don’t hear you crying

Seeing your smile

But don’t know you feel like dying

Turn on the TV

It’s much of nothing to me

Put the radio on

It’s full of where to go for the day

Wishing the nightmare would go away

Pick up a book

What for?

Trying to cook

Can’t see the numbers on the dials

Washing clothes?

Gardening, thorn from the rose

Getting lost somewhere you knew so well

Get me out of this garden of hell

A place I found so peaceful

Tranquil and beautiful

Now blades slice through

Where flowers once grew

Friends who were never away

Are suddenly busy every day

 

Just see through my eyes

For one single day

At least you will see again

Say goodbye to the pain

 

Copyright Fiona Cummings 2015