Spout Yard Gallery in Louth was the opening venue for an original exhibition by partially sighted photographer Nigel Limb. ‘Life on Mars’ tells the story of Nigel’s passion for photography and his determination to re-learn his art after a motorbike accident and resulting brain damage left him with a severe visual impairment. Photography has always been an important part of Nigel’s life. The exhibition’s presentation recalls childhood memories of his father converting their kitchen into a dark room to develop his photographs: a ritual which marked the start of Nigel’s love of photography. . Nigel calls himself the “Blindbloke” because, although he is not totally blind, that is how he prefers to describe his disability as he feels this helps people understand his experience. Nigel’s remaining sight allows him to see, in good light, silhouettes and vivid colours but no detail. He cannot see faces or recognise people by sight, only by their voice. His photography therefore, is now very different to his former work and he has had to completely change his approach. The photographs Nigel has chosen to show in this exhibition have multiple references, the light, colour and contrasts reflecting his limited visual perception and the subjects giving an insight into the other passions in Nigel’s life, some remaining constant since his accident: racing, music, fairgrounds and family and some new interests such as ten-pin bowling. The exhibition is not just about being visually impaired, it is also a very personal story about finding and maintaining optimism in the face of trauma and dramatic life changes. Nigel said, “To some people putting some photographs up in a gallery and setting up some artwork, might not seem like a massive achievement but for me this is a significant step in my journey back to living a ‘normal’ life. Pushing myself, not just to prepare the work but also to overcome the physical barriers of getting to the exhibition each day and then sitting in my dark room not knowing who was going to come through the door, is a great achievement for me and an experience I have thoroughly enjoyed.” “The final picture of the exhibition is called ‘Lust for Life’ and that is just what I have found through my journey.” Nigel would like to thank the Spout Yard Gallery for hosting his show and all those who came to see him and his work over the duration of the exhibition.
Have you or a family member been diagnosed with sight loss? • Would you like to share experiences with other people in similar situations? • Are you interested in finding out about services available to you? Our free, informal, community-based courses and phone groups provide information, advice, support and practical solutions for people adjusting to sight loss and those close to them. We aim to help you adjust to your sight condition, increase your independence and boost your confidence. You’ll get the chance to meet and share experiences with others in similar situations. Sessions include: • Welfare rights • Getting out and about • Tips and gadgets for everyday living • Assistive technology – computers, tablets, phones • Eye health • Wellbeing • Leisure, hobbies and interests Plus, you’ll hear about a range of organisations and local groups about services out there to help you. It’s taking place on Monday 20th and Tuesday 21st May at Haven Methodist Church, Lord St, Grimsby DN31 2NF You are welcome to bring along a family member or friend with you. Book your free place today! • Call us on 0300 123 3933 •
Email us at firstname.lastname@example.org •
Visit our website www.rnib.org.uk/livingwithsightloss
My name is Bianca Pacifico. I am currently a Masters student in Design based at The University of Lincoln. My focus for my design project is to create wallpaper that caters especially for visually, partially and severely sighted individuals. I am aiming to rightfully identify and experiment with
tactile surfaces in order to design interior walls for individuals in their own personal space. If you would like to help further my understanding for my research, please email me at email@example.com
Kim is an exercise instructor and coach working within the East Lindsey area and her aim is to make fitness accessible and affordable for everyone. One of her current plans is to create fitness sessions for those that are visually, partially and severely sight impaired. She is experienced in using tactile sign language during activity days. Kim is looking for feedback about what things would make a fitness session more accessible, or indeed what makes it harder for you to take part. If you would like to know more, please email Kim at firstname.lastname@example.org
Our eyes are the windows that we see the world through. When the curtain closes over that window, never to be opened again, the world becomes a scary place.
My name is Jim Kirk and at the age of 58 I lost my sight.
I am just an ordinary man, not an educated man, just a man trying to make a comfortable living for my family. This story covers the last two years, between December 2015 and June 2018.
In December 2015 I was admitted to hospital with viral meningitis and a seriously infected right eye. Four months later I lost my sight.
This story charts the journey with sight loss, the emotional turmoil and the collapse of my world, twice. At the same time as losing my sight my 10 year old granddaughter was diagnosed with an aggressive form of cancer.
I write this as a thank you to all the people who have been on this journey with me. The Doctors and Nurses who put a broken man and his granddaughter back together again.
I will never get my sight back but this pales into insignificance with the stress that my granddaughter went through. I am so pleased to say that she is now in remission and getting along fine, fingers crossed.
I want to thank Paul, my Councillor who showed me how to be positive again and to use focus to put me in a comfortable place. To Lincoln & Lindsey Blind Society and Lisa for introducing me to other blind and sight loss people and also for helping me with the sponsored event and the Sight Loss Club I now help to run. Thank you to James Bole my Rehab Officer who taught me so many things and pushed me to do what I do now. Thank you to all the sight loss and blind people who have been so amazing and inspirational.
Thank you to my family, my sons and my wife June and all extended family, they have all loved and cared for me unconditionally and without who I would not have come so far.
Total love and respect to all those that have helped me on my journey but a most massive debt of gratitude is owed to my wife June. I love you so much, you have been my carer, my lover, my shoulder to cry on, you have and are always there for me with endless encouraging words. You are my rock, my life, thank you for being my wife.
Who can I turn to if nobody needs me? I never underestimate the love and kindness of family and friends.
My story begins in 2015.
I was just an ordinary guy trying to make a living for his wife and family. I’d worked in construction for 35 years, mostly as a sub-contractor but for the last 15 years I worked for Clugston Construction on the Scunthorpe Steelworks, on term contract. As you can imagine construction work is a very physical and demanding job, working in all weathers and conditions. I think sometimes the job is very underestimated and you don’t think about the toll it can have on your body. In this sort of job, you have to earn the respect of your workmates as well as give this respect back.
Five years after I was given a regular job with Clugstons I was offered the position of “ganger” which meant that I would have the responsibility of overseeing other men. It was Site Manager Keith Robinson who offered me the job but in the next breath told me that I needed to distance myself from my work mates in order to do the job. I took the job but there was no way that I was going to distance myself from my workmates, they were my friends and work family. Just because I had a little authority did not mean I could not be part of the team. I always said if the world had a team then we could achieve and if not then we get nowhere. I would never ask anybody to do something that I couldn’t or wouldn’t do myself.
Over the years I have tried very hard to make a comfortable life for my wife and family. I worked very hard and did every bit of overtime required but I sometimes wonder if this had something to do with the way I had to finish work.
In December 2015 I was admitted to hospital. Looking back, I think two or three weeks previously I noticed that I was getting very tired, I didn’t really want to do anything other than shower and sleep. We tend to think that there’s nothing like a good eight hour sleep to put us right but for me it wasn’t working. The week running up to my admission I contracted a very bad eye infection in my right eye. I think it was my body telling me it didn’t want anymore. I remember that week sitting on my sofa at home and noticing that the front of my trousers was wet. I didn’t realise straight away that I had wet myself, I didn’t know I had done that. After cleaning myself up I mentioned this happening to June but then thought no more about it.
On the Friday morning before I was admitted to hospital, I got up for work feeling very tired but knowing we had a big job on at work I took myself off so I didn’t let anyone down. We had to steel a job up ready for concreting and I knew I needed to be there to oversee it. As the day wore on I was getting more and more tired and to make matters worse I was now getting the mother of all headaches. I carried painkillers in my lunch bag which I took throughout the day. I must have looked unwell because my workmates kept asking me if I was alright – I told them yes, but knew that I wasn’t. I was so glad to see the back of that shift. I was so physically drained; all I wanted to do was go home and sleep.
CHAPTER 2 – CONFUSION
That afternoon when I got home from work I more or less went straight to bed. I don’t think I spoke too many words to my wife June. I managed to shower and get into bed and the rest of that day was pretty much a blur.I knew June was concerned for me, to be honest probably more that I was for myself. June had rung our eldest son Gavin and his wife Emma and told them of her concerns. As far as I know they came to our house straight away. Emma is a nurse and took one look at me and decided a visit to the hospital was in order.I remember Gavin asking me if I felt OK and I told him I would be after a good night’s sleep but that I needed to be up early for work as we had a big job on. I can’t remember too much after that but apparently they took me to A & E in the car. I was just so tired, I just wanted to sleep. The next thing I remember was waking up in a hospital bed, I think it was the Stroke Unit.There was a nurse stood at the side of me taking my blood pressure and temperature. I didn’t really know where I was or how I got there. The nurse told me I’d been brought in the previous night in a very confused state. I sat on the side of the bed and felt my right eye which was pretty much closed by now. I was also still feeling very weak. I don’t know why but I suddenly remembered a hole in the concrete that was due to be done that Saturday morning, so rather than ring June, I rang Mark at work to tell him that there was a hole in the side wall of the area to be worked on which needed covering up or he would lose the concrete.Mark already knew I was in hospital and he was more concerned about me and said I was to forget work and he wished me well. That was me again, not switching off from work, that was one of my biggest faults, not switching off when I left work, thinking of ways to make the jobs easier. I rang June next and she told me everything that had happened to end up with me in a hospital bed. She told me to rest and she would be up later to see me. About 10am that Saturday morning a Doctor came to see me and said they wanted to do some blood tests, a C.T. scan and E.C.G. He said they also wanted to take some fluid from my spine for testing. Later on I was moved to Ward 24 a clinical ward where I was put in a side room on my own. I was a little bit scared about what was going on, I felt so alone. What was going on?My wife and son came up to see me that afternoon. As soon as I saw June I broke down in tears, I remember holding her so tight she told me to stop before I set her off. I was just so glad to see her. We have been together for 38 years and I can honestly say that I have never needed her as much as I did at that moment.
I explained to them both about the tests I was having done that afternoon and when they left I was taken for a C.T. scan and E.C.G. and when I got back to my room was still wondering what was wrong.That evening, June, Gavin and Emma came to see me and a Doctor came in and explained to us that I may have Viral Meningitis. He also said I will need a lumbar puncture and later on a nurse came and put a cannula in my hand to start an antibiotic drip. I remember asking Emma if it was painful having a lumbar puncture…she said it does hurt.Sunday came and I had the fluid taken from my spine and some tests done on my eyes for which they gave me eye drops. That was me then for the next 6 days. Having medication, blood pressure and temperature done.I was really hoping to be home for Christmas but I knew there was a possibility that with the viral meningitis I could possibly be in hospital for some time. By this time, I had begun to realise just how serious my situation was so I just took my medication and hoped for the best.Sometimes Doctors and Nurses take unnecessary criticism but when your body is broken as mine was they try so hard to put you back together again.A nurse called Helen would sometimes bring my medication and we would sometimes chat and one day she said to me that nurses save lives, not people and as I sat there and thought about it and realised that nurses do save lives but they also save people with their kind words and reassuring smiles. I could not fault the staff that looked after me that week, they were amazing.At the end of a 7 day period in hospital I was allowed to go home…it was the week before Christmas. I was coming along fine, glad to be home with my family for Christmas and so grateful for the care and attention that I had received in hospital.
CHAPTER 3 – DARKNESS
After the Christmas break on January 8th I was feeling well enough to go back to work. I was told not to overdo things for a while. After about 4 or 5 weeks back at work I notice I couldn’t see very well out of my right eye. I didn’t think too much about it at the time I thought it must be something to do with drops that the hospital had given me. As time went on I became aware that it was getting worse, to the point where I could see very little out of my right eye and asked June to make me an appointment at the doctors. It took 4 days to get in to see the doctor so it was the Thursday evening before we got there and explained to the doctor about my eye.
She examined my eye and asked why I hadn’t been sooner. The doctor looked at me with a look of worry on her face and explained that I had a blood clot in a vessel behind my right eye. She immediately rang the hospital and made an appointment for me to see the eye specialist the next day – Friday. We went home from the doctors thinking that the hospital would give me some treatment or medication to make things better and sort me out.
When we got to the hospital the next day the Registrar called me in and put a cage around my head so she could look at the back of my eye. She confirmed what the G.P. had told us previously, that there were blood clots at the back of both eyes. I asked if there was any treatment for this and she said she wasn’t sure until I saw the specialist on Monday.
At home, over that weekend my eyes were getting worse very quickly so I asked my son Ben to take me to A & E where I saw another doctor; I remember he was a young man. I explained what was happening with my eyes and that I had an appointment the following Monday. I told him I was very concerned that I was losing the sight in my left eye now so he examined both eyes. When he had finished I asked him to tell me what was going on. I asked him not to lie but to tell me truthfully how serious the problem was. The doctor explained that there wasn’t enough oxygen in my blood at the back of the eyes and that this was causing the blood clots in the vessels behind my eyes.
The doctor told me he was very sorry but I would lose my sight and it was very unlikely that it would return. I could feel a lump forming in my throat and looked at Ben and he looked at me. At that point all I wanted to do was get out of the room and I thanked the doctor for his honesty and left.
Stood in the car park outside A & E, I think that was when reality really hit me. I looked at Ben and he said he didn’t know what to say to me. I didn’t want to break down in the hospital car park so I managed to hold it together until we got home.
I explained to June what the doctor had told me. I think I was in shock. June saw how distressed I was and told me it wasn’t my fault and we would get through this. June has always been the strong one in our relationship. Nothing seems to faze June. Sometimes I wish I could be more like her. Over the next 6 months she loved and comforted me as I finally lost my sight.
We saw the consultant at my eye appointment and he seemed to have concern on his face. I asked him what percentage of sight I had in my left eye and he told 10% and less in my right eye. He explained that he wanted to try steroid treatment to see if it would stop the clotting behind my eyes. He wanted me to stay in hospital and he was going to sort out a bed. The nurse took June and I to a ward near the stroke unit. I wasn’t overjoyed that I had to stay in hospital again I wanted to be with June at home. They put a cannula in my hand ready for the steroid drip. I told June to go home and sort some things out for me and that she didn’t need to hurry back, I would be OK.
About 5 o’clock on that Monday evening the doctors came and told me that I didn’t need to stay in hospital as I could be given my steroids at the I.P.C. unit, having 2 hour treatment sessions for a week. I couldn’t wait to ring June and get her to pick me up.
I explained to June that night that I could just about see enough to get me to the hospital for my treatment, it was only a 20 minute walk. I told June that I didn’t want her to stop work, she needed to be away from me for a couple of hours a day, she needed a distraction and this was the only way that I could think of, I didn’t want to put any more pressure on her than I had to.
I managed to get to the first 2 sessions on my own but my son has had to come with me for the last 2.
My eyes were steadily getting worse and I had to go back and see the consultant after I finished the steroid treatment. The weekend before the appointment near the end of March, was very quiet at home, we kept wondering what was going to happen when we saw the doctor again. June kept telling me everything would be OK but I knew in my own mind that things would never be the same again. I sat in my own thoughts for long periods at this point and didn’t sleep much at all.
A few days before we were due back at the hospital I started seeing vague shapes and human figures all around the house. I would tell June there was someone in the hallway or in the bedroom at night and each time June would tell me there was nothing there. These “visitors” however seemed to be getting worse, especially at night. I wasn’t sleeping very well and was spending a lot of the night awake when I would see what I can only describe as humans walking through the bedroom door or going out of the door. I never saw faces just the backs of the heads.
In our bedroom we have wall to wall wardrobes and I would often see lions and tigers and the funniest was a six foot tall speedy Gonzales playing a guitar, I really thought I was cracking up. I found out later that this was connected to sudden sight loss called Charles Bonny Syndrome or CBS and happens when the eyes and brain are not connecting properly and the brain throws out images. The funny thing is that when you see these images they look exactly as they would if you had normal sight, although my sight was now just grey shapes and shadows. Over the next few days my vision deteriorated to such an extent that I had started to bump into things and struggled to get around the house.
We went to see the consultant again not really knowing what he was going to say this time. June and I were concerned about seeing the consultant this time as we didn’t know what to ask him etc. so we felt we needed someone with us.
Our sister-in-law came with us that day. June always popped to Sylvia’s on her way home from work and she knew all about my condition. The consultant checked my eyes and then spoke to June and Sylvia. I couldn’t hear what was being said and had to have more tests done on my eyes. Back in the corridor Sylvia put her arm around my shoulder; I was very close to tears. We went back in to the consultant and he basically told me that my sight was gone because the vessels behind my eyes were now too small to operate on and there was no known treatment. He told me he would be registering me as severe sight loss/stroke. He told me that the CBS would diminish with time and that he wanted me to have a MRI scan to see if there were any other problems. We came away from the hospital full of emotion. I was very quiet for the rest of the day, thinking what do I do now. Losing one’s sight must be the worst thing to happen to anyone. People can live without speech and smell and taste, even a limb but your sight is the window through which we see the world.
The next few days were the darkest days it was like someone had shut the curtain on my life, never to be opened again. My emotions were so raw for days after.
I remember sitting in the back garden. The sun was out. June’s brother Louie and Sylvia were there as well as Gavin and Emma. I don’t remember much of what was said but at some point they were discussing the date that I had for my MRI and the fact that it was not for the next 3 weeks. I went into total meltdown; I started crying and somehow managed to get into the house and upstairs without banging into anything. I just sat on the bed and sobbed my heart out. June came up, put her arms around me and all I could say was that I didn’t know what to do, everything was broken and I didn’t know how to fix it.
I kept telling June I loved her and all I wanted was her. I said I couldn’t cope and needed help. We carried on talking for a while and then went back down where I apologised and said I was embarrassed. Everyone said not to worry. I thought, is this how it’s going to be, me having a meltdown every time someone speaks to me?
There’s a saying that men should not cry it’s a sign of weakness…that is so wrong, we all have feelings and it is not weakness to show those feelings.
Those few weeks after I was registered as blind were the worst days of my life, it was so final. To all the friends and family that were so supportive…I can’t thank you enough.
CHAPTER 4 – DECISION TO BE MADE
Over the next few weeks since I’ve been registered blind at the end of April beginning of May, I became very worried about how we were going to pay the mortgage and other bills.
We had bought the house at the beginning of 2001. June was worried at that time as to how we would afford the mortgage and I told her not to worry as I would work hard and we would get by. I worked all the hours that I could and I suppose that’s when I became a workaholic. I told my sons about my concerns now that I could no longer work and they both said not to worry as everything would work out ok.
We had to make a decision as to whether June carried on working or not or stop working and become my carer. We decided that she would carry on working as she only worked part-time in the mornings and the money would come in handy. I felt that she needed a break away from me and needed another focus. I felt that by carrying on at work June would feel happier about what was going on, so we asked June’s brother Paul if he would call each morning to check that I was alright and not needing any help. Paul only lived around the corner and was glad to help.
Another problem that we had was all the paperwork that had to be gone through and completed in order for me to claim for any benefits that I could. I had only ever been on benefits once in my life back in the early 1990’s and things had changed so much I didn’t have a clue what to do.
This is where my sister-in-law came in, she is called Sylvia but I call her my Fairy Godmother and she said that she would be happy to help. Sylvia made all the phone calls on my behalf and researched just what I could claim for. We spent hours with Sylvia asking the questions on the numerous forms and then filling in the answers on my behalf but eventually we got them all completed and sent off.
A hard thing for me was going down to my work and explaining that I would not be returning to work and why. I had arranged an appointment with Clugston’s bosses who knew my situation. They told me that the term contract on the steelworks was up for renewal and that they weren’t putting in for it. A company called Jacobs had got the contract so the Clugston’s employees would work under them but that they wanted to keep me on the books, which they did for the following few weeks.
The bosses had talked to the unions and had put together a package. I was to leave work on the grounds of ill health and they would pay me one and a half weeks wages for the time that I had been on their books, plus holiday pay and everything else they owed me. I was so grateful for everything these people did for me and it meant that the money would help us for a while until we got sorted out.
It was on a Tuesday when I went to say goodbye to my workmates and I knew it wasn’t going to be easy. My brother-in-law Bob who I’d worked with went along with me. June was to drive us to arrive around 3.30pm when the lads would have finished for the day and I stood the best chance of catching them all.
We got out the car and I had my white cane that my son Gavin had bought for me and Bob led me to the office. All the men were so pleased to see me especially Kev Watkins who I had recently been in touch with. More and more of the men came in as they finished on various jobs. I went into the joiners shop and said my farewells. They all wished me well and I went into the welfare. As I said goodbye to Mark Farr who had been my right hand man for over 8 years, he walked out of the room because he was so upset. Mark and I had been through a lot together and I really felt so sad. I got Bob to lead me outside to where Mark was stood then asked Bob to give us a minute. Mark was a big lad, about 16 stone, I put my arms around him and told him not to worry I would be ok. I could feel him shaking and with a cracked voice I told him “I love you man, take care” We both felt heartbroken.
After all my goodbyes I got back in the car and with a lump in my throat we went home.
That night I looked back on the day’s event. When you have worked with people for the past 20 years, seeing them every day they become like your family. You probable spend more time with them than you do at home. I was sad to leave Mark; he was like a brother.
A few days passed and Mark came to the house to see me. I was sat in the garden when Ben walked in with Mark. He came over and gave me a massive hug and asked how I was doing. Mark told me that although I couldn’t see it, he had a card, that everyone had signed and they had all had a whip round for me and he gave me £480. I couldn’t believe it; I broke down in tears at the affection and respect that my workmates had for me. Mark gave me another hug before he left and I sat there feeling so special.
When I told June she said it was a token of how much they all thought of me. She knew how stressed I was from all the emotion so got hold of Bob and we went for the train to Cleethorpes to get me out the house and take my mind off things. I hadn’t been on a train for years but it went alright and we had a lovely day walking up and down the sea front… We found a café and sat outside eating fish and chips and watching the world go by, well for me it listening to the world go by. A bit later we went into the beer garden of a pub and June and I had orange juice and Bob had a pint or two, (he likes a pint does our Bob). Eventually we arrived back home after a great day which I thoroughly enjoyed.
We had a pile of letters to get through so June made a cup of tea and she opened the letters. One letter said that I had been awarded a benefit which would be back dated. Another benefit was backdated the same as the first. The third letter was from the insurance company informing me that due to my condition the mortgage would be paid off completely.
I was overwhelmed, what a day. So much pressure taken off my shoulders, I broke down again but this time they were tears of joy.
CHAPTER 5 – DEVASTATION
We were getting to the beginning of June, all the paperwork was pretty much sorted out and things were getting a bit easier. I was more able to find my way around the house and wasn’t bumping into things as much. I tried to do the washing up but kept breaking the coffee cups but never gave up.
Then Ben came home from work one day and told us that Ebony, his daughter, had been complaining of a lump on her right arm. Her Mum had taken her to the Doctors and was to have an M.R.I. scan. We didn’t think too much of this we thought it was just to be on the safe side.
Ebony had the scan and after waiting for the results Ben told us that she had been diagnosed with a very aggressive form of cancer in her right arm and had secondary cancer in her ribs. No-one spoke for a moment, which seemed to last forever, then were lots of tears, we were all devastated. I hate that word – cancer – it ruins so many people’s lives, it must be the worst news to be told ever. We didn’t know how bad this was for Ebony, we just hoped the doctors could help her.
Ebony is such a bright, beautiful, active girl, we just couldn’t believe what was happening at this moment in time. It was only 18 months before that Ben had been diagnosed with testicular cancer so we knew the hurt and devastation this could cause. Thankfully Ben’s cancer was caught early and he had a testicle removed and chemotherapy and it worked well for him and he has been in remission for 2 years now.
Ebony had to go to the Children’s Hospital in Sheffield for treatment. Ben and Ebony’s Mum spent a lot of time with her and kept us informed on how she was doing and what was going on. Ben told us that because Ebony struggled to take tablets they put a tube in her chest through which they could give her medication. This had to be done via an operation and she had a tube going down her nose and into her stomach to feed her. She was so scared and frightened poor little soul. Ebony’s Mum and Ben were not together but they were always there for her. She was so brave, she started her chemo a few days after admission and they were all three coping so well with what was going on. Ben loves Ebony so much and she loves him too.
With Ebony being in hospital we didn’t know when we would see her again. She needed her Mum and Dad so much and they kept us up to date. Ebony was the apple of my eye being the only granddaughter. June always wanted a girl but we only got our 2 boys, although I wouldn’t be without them, so when Ebony came along we were so happy. I remember dressing up as Santa one year when she was little. Ebony had a little Santa dress on and when she saw me the look of amazement and excitement on her face was priceless – she didn’t have a clue it was me. I sat her on my knee and asked her if she’d been a good girl. As you would expect her answer was a yes. She then opened her presents and I don’t think I’ve ever been happier.
Over the next few weeks Ebony had chemo and seemed to be responding well. One Saturday afternoon she came to our home to see us for a while. Gavin, Emma and Harry were there, Harry would have been about 13 at the time I think, he is an amazing young man as well and we are both really proud of him
Ebony came into the room and we all gave her hugs and told her how brave she was. Emma had to leave the room for a little while as seeing Ebony upset her to see her like that. Although I couldn’t see Ebony I could feel her pain and it upset me so much and after she had gone home I asked June what she looked like. June told me that she looked so frail and she didn’t look like our Ebony which made me so sad. I didn’t sleep too well that night. I remember coming downstairs and just sitting on the sofa trying to figure out why my family were going through all this pain. I’m not a great believer in God but if this was his punishment for my past indiscretions, I’ll have to ask him when I get up there. Ebony was going through this cancer and my problem seemed very insignificant.
The weeks and months passed and Ebony was responding so well to the treatment that she only had to go into Sheffield Hospital every 3 weeks. One week me, June, Gavin, Harry and Ben went to see her on a surprise visit. When we walked through the corridors to the ward, I could hear the little children running around and having fun even though they were so ill. I began to question whether me coming was a good idea or not as I wear my heart on my sleeve and the thought of children suffering was heart-breaking. Emma is a nurse but she wouldn’t want to work on a children’s ward.
We all got to Ebony’s bedside and I went and sat close to her and gave her a big hug. I could feel myself filling up and was trying hard not to break down. I had to leave the ward for a short time to calm myself down. When you have sight loss, other senses kick in and even though I couldn’t see the children I could feel their pain and sadness. On the way home I decided that I wouldn’t go to the hospital again – I didn’t want to break down in front of Ebony.
When Ebony was up to it we decided to take her on a shopping trip at the town centre. When asked what she would like she said clothes and Lego. We shopped for the clothes she wanted then after taking her for lunch she chose a big box of Lego. We didn’t care about the expense, she’s worth it.
There was a lot of fund raising going on as people became aware of what Ebony was going through. A JustGiving website was set up and I was amazed at the amount of people who gave to this good cause, some didn’t even know our Ebony.
It’s now over a year that Ebony has been in remission and back at school. She still has to have oral chemo every day and has to go to Sheffield for check-ups but she is back to the bright beautiful girl she was. She’s not out of the woods yet but with hope and fingers crossed she is going to be ok.
June recently wrote a poem for Ebony which I thought was really good, so here is how it went
My Sweet Girl
To see you look so frail and weak
It made my heart skip a beat
It didn’t look like you that day
You looked so far away
You’re so brave and full of hope
You are a shining star
Full of courage, full of love
So beautiful you are
But now we see the girl we knew
Full of the light that was you
Making people laugh and smile
Just as you always do
Love you so, so much
CHAPTER 6 – COUNSELLING
I suppose over the last few months I have not been too bothered about my sight loss as I had Ebony’s welfare to worry about. We didn’t see too much of her as she began to recover as she often went to Skegness to Laura’s Mums caravan. The sea air would do her good and help her recovery. I suppose at this point I just put my sight loss to the back of my mind. I was still doing whatever I needed to do to get by. I was not sleeping very well, maybe only getting about 4 hours sleep a night. I was having nightmares with the C.B.S. and I spent a lot of nights just sitting in the dark and thinking. I hadn’t been out of the house much because of the anxiety, I knew I needed help from somewhere or from someone but I didn’t know where to start.
I had been registered as blind with the local council since April. The council were supposed to send a re-hab officer round to see me and assess my needs. June had rung them a few times but they said I was on a waiting list. When you lose your sight like I did you feel the need to say, come on, let’s get this sorted and having to wait for the next step seems endless.
Around the beginning of October, I had a call from the Lindsey Blind Society who were based in Louth. They told me a lady would be calling round to have a chat and see if there was any way that they could help me. The lady that came was called Teresa, she was a very nice lady and she was a co-ordinator for the Blind Society. She asked how I was and was totally shocked to learn how long I had been waiting for an assessment. Teresa did my assessment (which she told me should have been carried out within 28 days) and concluded that there was not a lot within the house that needed changing. Teresa said that I needed a stair rail and and a grab rail for the bathroom the help me get in and out of the bath. She asked if there were any mental health issues and I told her my story from the beginning. Teresa was shocked and told me she couldn’t believe how we had coped over the last few months.
It seemed that June was coping much better than I was but she told Teresa that she was worried about me. I think that was probably the first time that I had truly opened up. I told Teresa that I wasn’t in a good place and sometimes I had to put on a front and tell people I was fine when I was anything but. I told her about my sleepless nights and the C.B.S. and she suggested I see my G.P. to see about being referred to a counsellor. Teresa thought that I was suffering from depression and that medication could possibly help me. I told her that I wasn’t comfortable taking tablets as I needed to be in control of what I was doing. She explained that medication would not “zonk” me out but could help me get through this difficult period.
After seeing the G.P. a date was set and my brother-in-law Bob took me to where I needed to be. Bob was 68 at this point and such a trouper. A few years previously we were at work together and he had passed out in the work yard and had to be sent home. Later on that evening Bob’s wife Jane (June’s sister) rang to say that Bob was on the floor and in a bad way. I ran straight across the road to where they lived, took one look at him and told Jane to put his medication in a bag. I told her not to bother ringing for an ambulance, that June and I would take him straight to hospital in the car. We booked him in and while we were waiting to be seen he collapsed again in my arms. Bob had had a heart attack. He ended up having a triple heart bypass – I told him it was just an MOT.
I call Bob my guide dog. I would not know what to do without him, he takes me everywhere I need to go.
Bob went with me to my first counselling session. We filled in a few forms then I went through to see a man called Paul. I think he was a bit taken aback when he saw that I was blind, I don’t think he had dealt with a blind man before. After offering me a coffee I began to tell Paul a bit of my history and explained the problems that I was experiencing.
Paul asked about my family and I told him that I felt that I came from a dysfunctional family. Mum and Dad separated when I was young. Dad took it hard and took to drinking and smoking and passed away at 42 years of age. My Mum passed away 3 years before I lost my sight. I have a brother and 3 sisters but hadn’t been in contact with them for years. My real family, I told him, apart from my sons and grandchildren are June’s family. When we met in 1976 her family took to me straight away. I remember June’s Mum (she was a lovely lady) clipped me round the ear and told me that if I hurt her daughter I would get another one. June’s family are very close, no fall outs, just lovely people. My family could have been the same but it wasn’t to be.
Next Paul asked me how I was coping with my sight loss. I told him that I struggle with it every day. I told Paul that some days if someone offered me a bottle of pills to end it all I would want to take them. Paul asked what stopped me from doing this and I told him that it would have been the easy way out, the selfish way out and that I couldn’t do that to my family, I love them so much and wouldn’t want to burden them with that heartache.
Paul asked if I was angry about what had happened to me and I told him that I was at first because I thought I would lose everything, have my world taken away and never get it back.
I told Paul that when I had my sight I was “somebody”. At my work I was respected and gave respect back. I said it would take a long time to replace my anger with frustration. I watch my son pick his bag up to go to work where I did, calling out “see you later Dad”. I say to June, that should be me, I want to go to work. June could only reply “I know, I’m sorry”.
Paul asked about trust and confidence. I answered that my confidence was very low. I was struggling to get my true feeling out; I knew what I wanted to say but didn’t know how to find the right words at the right time. I told him that I spent a lot of time trying to figure out how to put the things that were broken back together again but I didn’t know how.
My trust was very low it was like I had a circle around me and because of my low confidence I wouldn’t allow many people in apart from my family. By the end of our first session, Paul asked me to try and think more positively, to try not to be negative and to interact with people that were close to me by talking about my problems, this in turn would build my confidence up slowly. Paul said my way back was like a marathon, not a sprint. I came away from that first session knowing that Paul was right. I always wanted to rush things and wanted things done yesterday. Things don’t happen like that anymore; I live my life at a slower pace now and wait for things to come to me.
I had 5 sessions with Paul altogether and we spoke a lot about positive thought. He used to tell me, when you’re in a bad place just think of something nice that your family had done or you had done with them. I often think about when June and I went on holidays abroad, walking in the sun or sat at the bar in the evenings watching the world go by without a care in the world. How I wish that time could be now.
I learned some valuable lessons from my time with Paul. I learned that positive helps patience to get you what you want. I finished my counselling sessions knowing that counselling does help but only if you want it to. Thank you Paul. Paul told me that I needed a focus. Little did he know that it was just around the corner.
CHAPTER 7 – THE FIRST TIME
We were getting to the end of 2016 and to be fair I would be glad to see the back of it. It had been the worst year of my family’s life; it had been so hard for everyone.
It was just before Christmas that Teresa called at the house to tell us that RNIB were organising a 3 in 1 day meeting at Lindum Street Community Centre and asked if June and I would like to attend. She said it would give me the opportunity to meet other sight loss and blind people and would be good for both of us to go and learn more about my condition, especially from those that had sight loss for longer than I had.
The first Monday morning we went along. I didn’t really know what to expect and was a little nervous but June said I would be ok. The room seemed to me to be a bit small and claustrophobic. We met Ian from RNIB and the meeting lasted from 9am to 4pm and there was a canteen where we could get our lunch. Everyone started to arrive and Ian set out what was going to happen over the 3 day course, things to do with guide dogs, benefits useful gadgets, counselling and befrienders on the phone. I was a bit taken aback as the day went on as the word bereavement was used but I came to understand what it meant.
Ian insisted that we go around the table to introduce ourselves and speak a bit about our situations. Edward was the first to speak. He had been sightless most of his life and was about 60 years old. He was very proactive with his sight loss and he’d done a lot of talks to help people as well as fundraising. Thirty years ago he had been left a house and some cash so had decided that he would turn the house into an office and a recording studio and that’s where he had started the Talking Telegraph. Edward would get sighted people to get interesting stories and items from the Scunthorpe Evening Telegraph and record them on to CD’s and memory sticks. He had about 100 people who took advantage of this service. I have met up with Edward on a few occasions when I needed information about things I was doing and things that were happening. I think Edward is proof that you can do things to help sight loss people: he has done it for 30 years.
Nora spoke next. She had been blind for 10 years and after listening to her story I realised that you still get emotional and frustrated even after so long being blind. She also suffered with C.B.S like me and as she was talking I could hear the cracking in her voice. Even after all this time it was still raw and emotional for her. Nora said that her husband was a great comfort to her and goes everywhere with her.
Vince started to tell his story. He and his wife were 80 years old and like me he only recently suffered sight loss. Listening to Vince’s story was interesting. He had been in the Army, done voluntary work with the police and other organisations. He had received an MBE from the Queen for his work. With Vince not losing his sight until later in life, he was finding it hard to cope and didn’t know which way to turn. I felt so much sympathy for Vince, all the fantastic work he had done and this happened to him – so sad.
Gillian told us her story. She was blind and a bit deaf, much like me. She had a signer with her to explain to us what she was saying. She seemed such a lovely lady.
Then there was Margarette who was intelligent and travels a lot. I realised that she was also struggling with her sight loss as she seemed very angry and frustrated. She told us that if things didn’t go her way she would shout at her husband and throw things about. It was a bit of a coincidence that her husband had worked with June at one time in the local bowling alley.
John was the quiet one of the group; he ran his own business trading in ex-Army clothes. I can remember going into his shop once or twice. He doesn’t have his shop anymore because of his sight loss. For John to have put so much hard work into his business and then lose it because of his sight loss as he did must have been so horrible for him.
After the end of that first session, I believed that my emotions and frustration were exactly the same as the others in that room. It had been a long day, tiring and so emotional.
June and I discussed the day and how it had gone. June said she felt that she was able to understand more of what I was going through.
In the next two sessions we talked about Lindsey Blind and the RNIB. Teresa had already given me an audio box so that I could access books and information on memory sticks. I joined the RNIB club and while June was at work I’d listen to my books. This was amazing because before my sight loss I had never read a book in my life. Last year I got through 280 books, guess I need to get out more.
After the meetings had finished I felt a little easier about my condition and June was coping brilliantly, as she had from the beginning. Now I attend a blind club at the Westcliffe Community Centre. June came with me and she said that it seemed a bit strange because the men sat at one table and the women sat at another one. I think it was another 3 or 4 weeks later that I came across Vince again. All the people seemed very nice and I was able to chat to a few of them. A guy called Richard had been blind from birth. He was 65 and made his way around with the use of a cane. He took me under his wing and he is now a good friend. We often have long talks with a bit of micky-taking.
After the first week I was able to go on the Age Concern bus which would pick me up from home about 12 on a Wednesday morning and I must admit I felt a little nervous not having June with me. Richard was on the bus so I didn’t have to worry as I get more and more used to the group it becomes a lot easier. Richard and I would have a coffee and a chat, play dominos, which I haven’t done in years. It was a bit strange at first I kept putting the wrong domino’s down, I had to learn to feel the dots. That was the first time that I realised that my hands had to take the place of my eyes.
CHAPTER 8 – THE ROAD BACK
2017 was upon us and the family had a good Christmas. We had gone out to a restaurant for our dinner and Gavin took me into town beforehand to buy gifts that I gave out after we had eaten. It was very special.
Ebony had been at our house over Christmas and June told me that she was looking a lot better, with more colour back in her cheeks. Her hair was growing back after the chemotherapy and she was back to the lovely girl that we all adore. She was still taking oral chemo on a daily basis and had to go for check-ups at the hospital every 3 weeks but it was heart lifting to know that she was recovering well.
A couple of weeks later, Teresa rang to tell me that a re-hab officer would be coming to see me to help with cane training. How would I describe James? He was a big lump of a guy, ex-Army and he was straight John Bull and told it like it is. The first time I met him I wasn’t too sure of him. He had come from Buckinghamshire because we didn’t have a cane trainer in the Scunthorpe area. The first time that James took me out I was very nervous to say the least. He taught me how to follow grass verges and lines and perimeter reference points so that if I was on my own I could backtrack. He knew I was a nervous wreck because by the time we got back to the house I was shaking like a leaf. James told me this was normal. I suppose I was shaking because I had never been out of the house apart from with my family
Over the next few weeks I continued to go to the Blind Club on a Wednesday and was really enjoying it and making friends easily.
My confidence was also improving, even with James when he came to do the cane training. We chatted about all sorts, his family, my family and the fact that he did cane training in London as well. He told me it was so congested that he was happy to come to Scunthorpe. James only came one day each month but he enjoyed the train journeys and the people that were on his books.
One day when we were out walking he told me about the sight loss and blind carpet bowling near to where he lived. A few days later I was talking to brother-in-law Bob and asked him if he would like to take me. We had been thinking about it but with him having work commitments we never bothered until now that he was retired and we had more time on our hands. I knew Chris who runs the community centre near us and also her son John. John does car boots and auction days at the centre. Car boots had always been a passion of mine before I lost my sight. June was forever telling me that I had too much “stuff” laid about the house and stuffed in cupboards. The “stuff she referred to was not rubbish stuff it was more antiques and collectables. I suppose, like most people who do car boots I was looking for I was looking for that one piece that would make a lot of money. I never found it but I’d picked up some good pieces in the past. I used to do a car boot stall myself every few months. I suppose I did it more as a hobby than anything else. If I made a pound or two profit, I’d be happy and would often come home with £150 to £250 profit and now that was another thing that I had lost since becoming blind.
I told Bob that I would talk to John at his local car boot and suggest that he could bring his mum along to the carpet bowls and give it a go. John told us that it would be ok and we made arrangements to go on a Thursday. I was still going to the blind club every other week on a Wednesday. The other Wednesday was spent at the bowls for dinner.
I was sat at the blind club and Vince was sat at the opposite end of the table and didn’t seem to be very happy, so I asked him if I could help. Vince told me that his son had been diagnosed with lung cancer. His son was only 50 and as he was telling me Vince broke down he was devastated, poor man was in bits and to see him like that really upset me. I knew what he was going through and told him about Ebony. It was so sad for this 80 year old man who had done amazing things in his life to be reduced to a broken man. The volunteer took him into another room to talk to him and he returned a little time later. Unfortunately, Vince’s son died just before Christmas 2017. I haven’t seen Vince at the blind club since his son died. James had been to see him and said that he was taking it very badly. I suppose Vince’s 2016 had mirrored mine what with his sight loss and his son having cancer. The difference is that he lost his son and we still have our Ebony. My heart is breaking for Vince. Whether or not he will recover from this I don’t know but I wish him well and hope to see him again soon. God bless Vince.
That Wednesday had been a bad day for me. I felt a little easier on the Thursday. It was a very wet and cold day and I was a little apprehensive – I didn’t know how the bowlers would take to me. They must have thought, this blind guy has just turned up and wants to try his hand at carpet bowls and I was so pleased that Bob was there with me to lean on. I believe that the bowlers really took to me in the first instance because I wanted to give it a go. Over the weeks I gradually improved, had started to feel more confident with the people there. These lovely people didn’t try to wrap me up in cotton wool, they just let me do what I had to do. All of them encouraged me and Bob and I have been going twice a week for the last 14 months. I owe Chris and John and everyone that belongs to the bowling club a great deal of thanks for welcoming me into their group. They do ask me about my sight loss and I feel comfortable enough to answer any of their questions. They are a lovely group of people who are glad to help me in any way that they can. Thank you guys.
I remember Paul the counsellor telling me that I needed a focus in my life and the bowling was becoming my focus. Now it is a way for me to help others with sight loss. I can’t wait to start, it’s a challenge but a big step forward for me.
CHAPTER 9 – HELPING OUT
In the middle of spring/early summer I decide to ask Paul and Bob to help me out with some repairs that needed taking care of at the front and back of the house. I decided to build a small compound to house my rubbish bins in. Whenever there was a strong wind our bins were blown over and the rubbish inside would be blown everywhere.
Paul and Bob did the work and I helped out as much as I could, holding posts and fence panels and passing tools to them. We also fixed the bottom of the shed with 8 x 4 foot ply boards and even fixed the fence between our house and the next door neighbours. I suppose there are always jobs that you never get round to and Paul and Bob were really good to help me get them done. I enjoyed helping them and spending time with them, it made me feel like I was doing something useful. Through the summer months I spent a lot of time sat out in the back garden going over my thoughts about what had happened over the last 18 months.
There were tears and sadness but things were beginning to get better. Gavin, my eldest, would often take me out for breakfast. He retires from the Army in February 2018 after 22 years’ service. The Army has turned the boy into a man and June and I are so proud of him. He has travelled all over the world and we know that he will miss the army life in a lot of ways. Gavin has a lovely wife called Emma and a son called Harry; he has made a wonderful life for himself and his family.
When I wasn’t in the garden I was at the blind club or the bowling club with Bob and my new-found friends. I would sometimes have a chat with James (my cane tutor) and he would tell me what the other sight loss people were up to. I enjoy my chats with James; I came to trust him, which I didn’t do with many people. Through James I learnt so much about sight loss. He would tell me that apart from the blind club on a Wednesday there weren’t many places for sight loss and blind people to go to enable them to get out for a couple of hours.
It was during one of our many conversations that James mentioned that there was a shortage of Audio Boxes for sight loss people. These were usually supplied by Lindsey Blind and Edward from the Talking Telegraph. James told me that the boxes cost £41 each. I told James that I wanted to help raise some funds to buy more and we came up with a blind sponsored carpet bowls event. The next time that Bob and I went bowling I asked if we could put the event on at the centre. Chris said it would be ok and that we could use their equipment – what a star. Over the next couple of weeks, we arranged for sponsor forms to be made up in conjunction with Lindsey Blind and North Lincs Talking News. Each association would receive half of whatever we raised to buy more audio boxes. We set a date of Sunday 18th June.
June had booked us a few days away in the Lake District with Bob and his wife Jane (June’s sister). My wife and sons took sponsor forms to work and also advertised it on the internet. I had been to Edward’s studio to do a piece for the Talking News. We hoped to be able to raise around £400 which would enable the purchase of 10 boxes. James was very pleased at what I was doing and supplied us with some blindfolds. He was sorry he couldn’t attend as he had family commitments but wished us well.
As the day got closer I started to doubt myself a little. What if the event turned out to be a flop, I knew that wouldn’t help my confidence if that happened.
The next time that I went to the blind club I told Lisa and Teresa what I was doing. I also stood up and told the rest of the group what I was doing and hoped that they would support me. I could not believe what happened next. Within about 20 minutes they had handed me over £70. I was so overwhelmed at their generosity; these people were really special. It gave me a good feeling to know that I was helping to do something worthwhile.
On the Sunday morning my sons and Harry (my grandson) came to help me set the mats up. June and Jane sorted the drinks and sandwiches out, Chris had made some cakes and buns. It got to 10 o’clock and people just kept coming in, I think in the end we had about 50 people come to our event. All the sighted people had a go with the blindfolds on to let them see what it is like to have sight loss. Ebony came and absolutely loved it. Everyone said what a great job I had done. Lisa from Lindsey Blind came down and told me that she was very impressed. Edward also popped in and told me he thought I was doing great to try to help others. Our event finished at 2pm and everyone left happy they had a good time.
When we got back home that afternoon, June told me how proud she was of me – that meant the world to me. June insisted we then relax before our Lake District trip the next day.
Monday came and packed and ready we set off to stay at a hotel near Oldswater. The weather that week was beautiful, it was well into the thirties. Everyone at the hotel said they hadn’t had weather that warm for a very long time. We went all over the lakes that week, the hotel was lovely and the food was great.
As we went around different places, June would describe what she was seeing and I would try and make her description into a mental picture in my head. June said the scenery was amazing and over the week I thought back to what I had been doing over the past few weeks. I began to understand that with a little help I can improve things for people with sight loss. I was understanding more about sight loss by talking to James and now I could make things happen. When all the money was collected in I was astounded that we had doubled our initial £400 target. When I announced this at the blind club they all started clapping. I can’t say I didn’t feel emotional. I did it! And I felt like someone again. I hadn’t felt like that in a long time, I felt so proud of myself, it helped me to believe in myself again. I had a saying when I worked – work as a team and you will achieve, if you don’t, you won’t. I didn’t realise how big a thing this was for me going forward.
CHAPTER 10 – SIGHT-LOSS CLUB
My thoughts. I started to think about the possibility of setting up a club for sight loss people at the carpet bowling club as this would be the perfect way to bring people together.
I had noticed at the blind club that there wasn’t a lot of interaction between the men and women who were there. I mentioned this to Bob and asked him if he thought it would be a good idea and if I decided to try and get this started, would he be agreeable to helping me if he could. Over the next few days I sat in the garden mulling over in my mind what I wanted the club to be like. I wanted it to be a place where people felt comfortable, where they could come to have a coffee and a chat and a biscuit.
June had bought me a set of pan-pipes earlier in the year, more as a distraction against my sight loss.
I would sit in the garden trying to play the pan-pipes and June would come in from work and tell me I was playing the wrong notes. This reminded me of a sketch with Eric Morecombe sat at a piano, his guest was Andre Previn who stopped Eric and told him he was playing the wrong notes. Eric stood up, grabbed Andre and told him that he was playing the right notes but not necessarily in the right order. June asked if I was ok and I told her yes and then told her about my idea. June told me that whatever I decided to do she would support me, bless her.
A couple of days later James called round and I told him what I was thinking of doing and he said he thought it was a great idea. James told me that something similar had been set up where he lived which had been going for a couple of years and that it really did help sight loss people get out for a couple of hours and have some fun. That really made my mind up for me.
The next time that Bob and I went to the bowling club I had a word with Chris about my idea and she said we could have the room on a Friday between 10am and 12pm. She told me we could also use the centre’s equipment, which included the bowls and new age curling. Chris said the cost for the room would be £30 so my thoughts were that we could charge £1 for the bowling and £1 for tea/coffee and biscuits which would cover the cost of the room if we got enough attendees. My thoughts were that I would run the first 4 weeks free of charge to see how many people were interested and if it was viable.
The next time I went to the blind club I spoke to Lisa from Lindsey Blind who works as a volunteer co-ordinator. I told her my idea and asked if she could help in any way and she said to leave it with her and she would have a word with her bosses. Lisa got back to me the following week and said that Lindsey Blind would pay the first months room rent and supply the volunteers. They would also put a newsletter out informing people on their books. I was thrilled at this news and told June and Bob what Lisa had told me; they were as happy as me.
This was going to be a big thing for me and I spoke to James who was supporting me to do things and he told me that I would get referred from people who wrote his books. We started putting things in place. I wanted to start the club at the end of October. I also went to see Edward at his studio and did a piece for the Talking News. We also advertised it on the internet.
It was the first day and I was nervous as I had been before the sponsored event. Gavin came to help out on that first day and as more people arrived I started to feel a bit better. The first day we had 12 sight loss people which was really encouraging and most of the sight loss people said they were so pleased to have somewhere to go as I explained what the aims of the club were. As the morning progressed I could sense that this was a good thing to be doing, helping other people. I came away from that first meeting feeling very good about myself especially after Lisa told me what a great job I had done. The club has now been running for nearly 6 months and the people that attend get on really well together. We have introduced a new game using bean bags and targets as well as the bowling and curling.
There are a lot of characters attending and every one of them is individual. There are different levels of sight loss and those able to help each other out. When we break for a coffee in what I call the comfy room, they get so carried away chatting that I have trouble sometimes getting them back out, it’s lovely really. We do all sorts of different activities like this week we are sorting out a carpet bowl competition, the first and second place will receive a trophy. This will be good for confidence building. It’s not about who wins, it’s about taking part and doing something enjoyable.
We try to encourage sight loss people to write short stories or poems that we can put on to CD’s and memory sticks so that other sight loss people can listen to them. A couple of weeks ago a lady came in and stated that now she had spent the first week with her husband, she now felt that while he was with us he was in a safe environment and she would therefore feel happy to leave him with us and go shopping. He’s called Ronnie and is over 80 years old, he’s only a short man and told me was a war baby, I told him he hadn’t grown much and his wife burst out laughing. Over the next few months Ronnie became a favourite with the group. His wife thanks me all the time for the improvement in her husband. She says it’s amazing and the group are amazing and I love every one of them.
I sometimes just take a step back and listen to their joy and laughter, it gives me such a boost. The club doesn’t belong to me; it belongs to all those amazing people that don’t let sight loss get the better of them. I have made a whole lot of new friends and am pleased to call all those people my friends. All of this would not be possible without the help of Lisa, James and the volunteers who help out and gladly give up their time to help others. Bob, John, (Chris’s son) need a special mention helping with the setting up. John stays now and again to help out and he loves all the characters. Bob is my human guide dog and without him I wouldn’t be able to get where I need to be. What I would do if he wasn’t here I just don’t know. Thank you Bob and John. The club is up and running now and I’m very proud to be associated with these wonderful people.
CHAPTER 11 – REFLECTIONS
I have come a long way in such a short space of time. I have had to learn very quickly to adjust to my sight loss. I suppose it’s like going back to school and learning the basics all over again. Learning things like tying my shoes (once I get them on the right foot), making sure I have the right clothes on, making a cup of tea. I know I will never get my sight back but although I may not win the battle an occasional little victory gives me a lift.
At the start of my sight loss I really couldn’t see any future, my whole world had collapsed. I suppose my thought was, what now, where do I go from here.
I remember Ian at the RNIB meeting talking about sight loss bereavement. I didn’t really understand it back then but two years down the line I think I understand what he was talking about a little better. It’s like losing a loved one, you never get them back but you have the memories. I’ve been fortunate to see most things that the world has to offer. I’ve been to some beautiful places abroad with June at my side and seen some amazing things.
Sunset over the Sahara Desert at 4 o’clock in the morning, climbed the Atlas mountain and been out on the sea looking at whales and dolphins. We’ve been up volcanoes, seen Fire Mountain, seen the Blue Lagoon (that Rachel Welch swam in, in the film 10,000 B.C.) We’ve seen the Acropolis and so many other places too numerous to mention, so yes I think I have seen some of what the world has to offer.
I’ve met some amazing people on this journey, not least my wonderful grandchildren. My world fell apart when we got Ebony’s diagnoses of cancer; not knowing which way this disease was going to go. For a ten year old to deal with everything that she has is inspiring, she’s been so brave. My sight loss has now been put into perspective after what she’s gone through. She is an inspiration.
At the time of my sight loss I was a 58 year old and I had nothing to moan about in my eyes.
Now I have so much to be grateful for as well as people to thank, who have taken this journey with me. The Doctors, the Nurses, who took a broken man and put him back together again and giving me back to my family.
Paul the counsellor was such a clever man. When I had my sessions with him, he seemed to get inside my head to sort my problems out. He taught me the power of positive thinking for which I will be eternally grateful.
James came into my life at the right time. He showed me that nothing is impossible. He has been a sounding board for me with advice and pointing out other options and opportunities available to us all. Emotions can be raw at times but the one thing I have learned from sight loss people is that just because I can’t see doesn’t mean that I have to stop living. Of course there are things that I can’t do but I will never give up trying.
Throughout this journey I have had to rely heavily on my family. I wish I could have relied a bit more on my own family but that was not to be, so sad really. This has made the family I have now so important to me.
June and I have been together for over 40 years now. I suppose as a husband and father I have made many mistakes and misjudgements. June’s family are wonderful, a very strong family and I have come to respect and love them all. They have accepted me and made me a part of their family and I owe a lot to them all.
Louie (Sylvia’s husband and June’s brother) is always available for a chat when we go to visit them.
Sylvia helped me with all the mountains of paperwork in the early days and is also typing this story up for me. God bless my Fairy Godmother, you were there when June and I needed you the most, thank you.
Paul (June’s brother) is one on his own, how to describe Paul. He’s a bit of a moaner but he’s always been there when I have needed him. Thank you Paul.
John (June’s other brother) has given me lifts in the car when needed and at the end of 2017 when we decided to decorate the house a bit, John did all the decorating and carpet fitting, he did an amazing job. Thank you John.
Then there is Bob, my wingman, my back-up and guide dog. I remember introducing Bob to June’s sister Jane all those years ago. Jane always blames me for them getting together Ha-ha. I love Bob to pieces, he’s a legend and what he doesn’t know about music isn’t worth knowing. Love you to bits Bob. Thank you for being such a good friend.
Then there is my beautiful wife June. I know I don’t say it often enough but I love you to bits June. It hasn’t been easy for you. We have somehow got to where we are now and it’s been an emotional journey in parts. You have loved me and cared for me. You are the last thing I think of at night and the first thing in the morning. I feel we’ve been together so long now that we are now best friends and soul mates. You are my rock, my shoulder to cry on. My comfort when I’m having a bad day. You say that none of this is my fault but I sometimes think that you have lost a bit of the person that I was. It hurts sometimes not to be able to see your face now but I have you in my head, my memories and in my heart. Thank you June, our journey continues…together.
I have dreams, your arms are lovely
I have dreams, what a joy you bring
I have dreams, every word you whisper
When you are close to me
How you look in the glow of evening
I have dreams, and the joy of you
In these dreams I’ve loved you so
That by now I think I know
What it’s like to be loved by you
I adore being loved by you
CHAPTER 12 – CALM
It’s a new year now, 2018 and we have had a wonderful Christmas. All the family came around and it felt a bit special this year with everything that had been going on for the last 12 months. Ebony was so excited to open all her presents and I could feel the happiness flowing from her. She thanked everybody with huge hugs and kisses.
With all the family there I felt a real sense of calm and hope that the troubles of the last 3 years were well behind us now. Ebony was in remission and rang the bell at Sheffield Children’s Hospital after her last Chemo session. She was so excited to ring that bell and we were relieved and thrilled as she had been through so much bless her – we’ve got our Ebony back and it’s wonderful.
The bowling club has gone from strength to strength. We have 13 regular sight-loss members. We’ve introduced new games such as a crazy golf course, skittles, which you swing on the end of a chain and we still have bean bags and curling. All the members get on so wonderfully, making new friends and when we stop for a coffee break you can hardly get a word in.
James, my rehab officer, came down for one of the sessions and was amazed at how well it was going and being run. I remember at one point whilst talking to him, I felt a lump in my throat. It gave me a great sense of pride to think that I was doing something positive and constructive to help these wonderful people. I don’t just help them, they help me. Thank you to them all.
Over the winter that has been so cold I haven’t been able to get out much, except for the clubs, so I decided to start writing short stories and poems (June says they aren’t poems because they don’t rhyme) and to be honest I don’t know where this writing is coming from. I was always in the bottom class at school, a bit of a dunce you might say, to be fair I didn’t really like school, I was a bit of a Jack the lad and am so surprised at what I’m doing now, I think the whole family is. I enjoy putting pen to paper, it helps me focus and also allows me to express my feelings and emotions. I suppose a lot of it comes from sitting in the garden. When we bought the house the garden was a blank canvas so we got stuck in and made it fit for the family to enjoy. We built new bedding areas, a patio at the end of the garden, a brick BBQ and put decking down with chains flowing through the posts.
We have a variety of shrubs and plants which took a long time to mature but it was all worth it just to sit and enjoy it now. I suppose my garden is my inspiration for a lot of my stories as it’s where I do a lot of my pondering and thinking. It’s like a jigsaw, all the thoughts are like pieces to be put together and written down.
Another thing that has come to the fore since my sight-loss is I can dream and using my imagination I can take myself off to anywhere I like.
Writing feels part of me now, I recite them to Ebony and she tells me if they are any good. She is my critic and most of the time she will give me a cuddle and a kiss and tell me that my writings are beautiful.
I wrote her a story called Flower and she love it so much that she copied it down so she could take it home to show her Mum Laura, and her Mum liked it too.
I enjoy telling people my stories to be able to experience their reaction.
There is a lady called Anne who lives across the road from us and she heard about my book. Anne has lung cancer. I lent her my book to, even though it wasn’t as complete as it is now. Anne told me that she had been feeling a bit low what with the cancer and the chemo. She said that after she’d read it through it had given her such a lift and made her feel so much better. She said that she didn’t realise how much I had been doing for other people. I felt a great sense of achievement that I had helped Anne with just a few words. It just shows how powerful words can be.
CHAPTER 13 – HOW MUCH MORE
Sometimes life has a habit of kicking you when you’re down. How much more must my family endure. I think we’ve been through enough in the last 3 years and what is happening now, you could not make up.
June has been saying that her leg is swollen and painful when she walks. We made an appointment at the Doctors who thought it might be a blood clot in her leg. June was referred to the hospital to be on the safe side and get it checked out. They gave her a scan and confirmed that she had a Deep Vein Thrombosis (DVT). She was put on medication to thin her blood which would hopefully disperse the dreaded clot. We thought that would be the end of it but the Consultant that she saw wanted a CT Scan doing from her chest to the bottom of her abdomen. June went for the scan on a Sunday the following week and her sister went with her for moral support. When June came home I asked her how it went. She told me that she had to drink copious amount of water before the scan but it was all done and we would get the results in a few days.
About a week later June got an appointment to attend the day clinic for a Cystoscopy examination. June didn’t tell me that they had found something on the scan when we went for this appointment.
We waited about 20 minutes then June went into another room for the procedure which I think took about an hour.
The nurse called me into the room where June was sat and they explained that June had a tumour on her bladder. My heart just sank. We were so shocked; we just sat and listened to what the nurse had to tell us. I couldn’t believe this was happening.
June was to have a pre-assessment before having an operation to remove the tumour, followed by chemotherapy.
As we left we didn’t say much to each other, I guess we were still in shock. We had gone on the bus as it’s so hard to park at the hospital, so we waited for the bus to take us home, just feeling numb I guess. We had understood what the nurse had told us along with the fact that June would have the operation in about 2 weeks’ time.
When we got home we sat and discussed the situation and told our family, who were as shocked as we were.
June was very calm. She told me there’s nothing we can do about the situation and we would just have to deal with it. June is such a strong woman; she will deal with it as she does everything else. She doesn’t let things bother her or get to her. I suppose when you are an adult you pretty much know what to expect – surgery and chemo. It’s not like when Ebony had cancer as a child when she was frightened and didn’t understand what was going on and why but the Doctors and Nurses know what they are doing.
I sometimes wish that I could be as strong as June and then maybe I would cope better with situations like this one but June tells me I| can worry for England.
We went up for June’s pre-op assessment where she had bloods taken and filled in forms. June mentioned that she was taking medication to thin her blood and the nurse said that in some cases the surgery may be put back as they were worried about a piece of the blood clot
in her leg breaking off and travelling to her lungs which would cause a big risk to her life.
I asked that if the operation was cancelled, how would the tumour be monitored. The nurse replied that it wouldn’t. I was very concerned that the tumour could grow unchecked not knowing what the damage could be by the time she got to surgery.
The nurse rang the Consultant and explained the situation with the blood thinners and the fact that June had a DVT, to be told that a plan would be put in place. At that point we weren’t sure what was going to happen.
After we got back home June got a phone call to say that we had to go back the next day to see the anaesthetist. When we saw him he said he was happy to go ahead with the surgery and it would take place on 17th May 2018.
June had to stop taking the blood medication for a few days before the operation to avoid excessive bleeding during the operation. If I said I wasn’t worried I’d be liar. What upset me most was that one doctor said one thing and another said something else.
My wife’s health was at risk and I wasn’t feeling very confident about things. We put our lives in the hands of the medical staff so we just have to trust they know what they are doing.
CHAPTER 14 – SURGERY DAY
I can’t say that I looked forward to 17th May dawning, the day is going to be so long and stressful. June got up at 5.30 so that she could have some breakfast – she couldn’t have anything after 6.30.
June seemed pretty calm while I was sick with worry about what would happen today.
We had decided that I would not go with June as it was a day surgery ward where she was going and wouldn’t allow me in because of the risk of infection. Our son Gavin took June up in the car so she arrived as instructed for 10am. I kissed June and told her I loved her and she told me that everything would be fine and not to worry. I knew that I would only be fine when I knew she was fine.
I think it’s the time being away from June that makes me so worried. We have been together so long now. I remember when I first saw her. We lived in the same street right opposite each other. She was a pretty girl with a Purdy haircut. She was often pushing a pushchair with her young son Gavin in it.
My best mate at the time was my cousin Bazz Drury. We worked at the same place but in different departments. Bazz was a big lad, he weighed about 17 stone and we often walked to work together back in 1978. There wasn’t a lot of money about and me and Bazz would often have a pint together when we were in a darts team.
This particular Monday night we were supposed to be playing darts at a club called Mill Road. I was skint so I went over to Bazz’s (he lived next door to June) and told him why I couldn’t go. Bazz told me to ask June to lend me a few quid until pay day which I said was rather cheeky. Bazz asked me if I fancied June and I said that I did. “Go and ask her then” said Bazz. So, I summoned up the courage and went and knocked on the door. June answered the door and there wasn’t any small talk or anything, I just asked her to lend me a few quid. And that was the start of our relationship. Not very romantic I know.
Over the next few weeks we got to know one another better and used to wave goodnight to one another from our bedroom windows – I know, all a bit soppy. June had introduced me to her Mum and Dad who were lovely people. Me and June would often sit and canoodle in the back room of her house. Sometimes I would pop my head round the living room door and say goodnight to June’s Mum and Dad, then go to the front door, open it then close it then nip upstairs to spend the night with June. Nobody ever found out.
It was probably 2 or 3 months into our relationship when I got some very upsetting news about Bazz. He had been killed in an accident at work. He had been getting out of a machine that he was driving and it’s said that he stepped over the front bucket of the machine but that as he did so he caught a lever and the machine ended up on top of him. I was distraught for day afterwards. June was there for me throughout that bad time and my lasting memory of Bazz will always be his red and white striped bobble hat that he always wore. He was such a lovely bloke. I should thank him as well for getting me and June together – thanks Bazz.
It was getting towards summer of 1978 when I asked June to marry me. She obviously said yes which made me so happy. I’d been with a few girls in my time but June was different. She showed me that I could care for and love someone. When I told my Dad that I was going to marry June he said it wouldn’t last 6 months.
He said that I was too much of a Jack the lad, too much of a rogue. He was right at that time I sometimes got in with the wrong crowd and played the prat. I know that meeting June set me on a completely different path. I owe her so much for that. We’ve been together now for over 40 years and like all marriages we’ve had our ups and downs and cross words and we’ve laughed and cried together as well.
I know that if I went back all those years and had to pick someone to spend the rest of my life with, June would be the one. She’s an amazingly strong woman, a wonderful mother and home builder.
I sometimes hear my favourite song by Barry White, “My First, My Last, My Everything” and that’s what June is to me. June is my world, I owe her so much, we have both worked really hard over the years to make a good life for ourselves. We plan to do so much more but things have been put on hold for now. I love the girl so much; I know we will get through this because our love is so strong. She is my best friend.
Unity, friendship and strength will see us through these trying times.
CHAPTER 15 – RECOVERY
June spent 2 days in hospital after her surgery and had her first lot of chemo. It was alright when she came home and she said she felt fine. It wasn’t long before she was up and about, she just can’t sit still. I keep telling her off but she doesn’t listen, but that’s June.
We were overwhelmed by the welcome and the flowers that we received, some from people June didn’t even know, such as the Blind Club and the Bowling Club and her workmates paid a visit too.
Friends and family have been amazing while June was in hospital. I didn’t expect to miss her as much as I did. My son Ben was at home taking care of me and I didn’t realise how much I depend on June. Before she gave up work I was fine for the few hours that she was away but while she was in hospital for three days I became very angry at the least thing and got so frustrated. I think it’s her physical presence that keeps me going.
When I sat and thought about it I felt that I didn’t like that side of me at all and a few others have said they don’t like that side of me either. Maybe this is something I need to discuss with my councillor.
June is recovering well and we are waiting for the results of the biopsy which could take a few weeks. Then the Doctors will put a plan into action going forward. June keeps telling me everything will be ok, there she goes again, my girl. It’s not going to be a quick fix it may take weeks or months; we don’t know yet. It’s just another battle and I feel sure we will deal with it – together.
We will laugh and smile again because we have love and support.
I’m coming to the end of this book and through it I’ve learnt so much about my family and friends and also myself. I know I have had to look deep inside myself to help me cope with my sight-loss and all the other things that we have had to deal with. I think I have found something I never knew I had, whether it’s inner strength or not I don’t know but it seems to me that when you lose one sense another one kicks in. Something has definitely happened to me for me to be able to do the things I am doing. I have started to enjoy writing; I think it gives me some form of release. I haven’t got a clue where all the short stories and this book have come from. I suppose it was waiting inside me ready to come out.
I have learnt that you should never be afraid of your emotions whether you are a man or a woman.
Positivity and focus can be a great help moving forward in our lives and friends and family become the most important things in sad and bad situations. I have also learnt that there are people and organisations out there that are always willing to help. I have to deal with my sight-loss a day at a time and I’m learning all the time about new ways to make my life a little easier.
Life’s not really bad but at times it can test peoples resolve and patience but life will go on. Just as my family and friend’s journeys will go on.
I have met some amazing people over the last few years, people that have helped me, my family and friends and I can now go forward into the future with a renewed hope and a smile.
We had a great day at the Louth Christmas Market where we raised a total of £1,100 A big ‘thank you’ to all the people that donated the prizes!
RNIB Connect East Midlands are working with Adrenalin Jungle to put on a driving experience for visually impaired people and their friends and family. Come along and experience driving a Landrover Defender while your team mates help guide you round the track!
Teams of up to 6 people with a sighted guide in each vehicle will help guide each other round a track and each take a turn at driving. Sighted friends and family will be blindfolded on their turn to drive.
When and Where
Friday 12th April 2019 from 11am at Adrenalin Jungle Activity Centre, Deerdale Lane off A614, Bilsthorpe, Nottingham, NG22 8SY.
£20 per person
Transport will be available from Nottingham Train Station to take you to the event.
Places are limited please email Hannah.Cave@rnib.org.uk or call 01509 632418 to book on or find out more.
For anyone aged 16 or over. Anyone under the age of 18 must be accompanied by an adult
Three years ago I found I was doing the same things every day of the week, nothing changed, then I was visiting Louth hospital and whilst waiting to be ‘seen’ I looked at a notice board and found a leaflet asking for volunteers with Lincoln & Lindsey Blind Society, I rang the number and was told there was a reading group to start soon, after an interview I was asked if I would be prepared to assist in leading a Reading Group in Louth and one in Mablethorpe with other volunteers.
Volunteering with Lincoln & Lindsey Blind Society is informative about how to help sight impaired, very helpful in teaching the best and correct ways to do this and it is very enjoyable. I have attended several courses which have helped me to understand and assist sight impaired people. The most recent course being ‘Sighted Guiding’ which taught the best and most appropriate ways for a sighted person to assist someone sight impaired.
In addition to this there is the Befriending Scheme and the Talking Newspaper. We started a New Friendship Group in Mablethorpe every third Monday in the Month it is becoming popular and being enjoyed by everyone who attends
If you feel you would like to do something different, meet people and have a few hours to spare each month do what I did become a volunteer for Lincoln & Lindsey Blind Society.
I am sure you will enjoy it.
Morrisons have been generous supporters to the Lincoln & Lindsey Blind Society for local people and always give a lot of help to sight impaired shoppers.
Mandy Johnson, LLBS Chief Executive, said “We are thrilled that Morrisons have helped us again. The hamper is great and will help raise much needed funds”.
The newly formed Lincolnshire Bombers: (left-right), Cyril Hellewell, Belinda Barker and Nigel Limb.
A newly formed trio who are competing together for the first time are hoping to make the finals of the blind and partially-sighted national bowling league. The Lincolnshire Bombers Bowling Team – made up of Cyril Hellewell, (52), from Mablethorpe, Belinda Barker, (46), from Alford and Nigel Limb, (53), from Sutton on Sea have all joined together and become friends through a shared loved of bowling. Mr Hellewell, who lost his sight 22 years ago through ill health, started bowling three and half years ago and his wish to form a bowling team to play and compete nationally has now become a reality after meeting Ms Barker and Mr Limb.
Soz as he is known to friends told us : “It is very hard losing your sight when you were able to see before, but we don’t want it to define us.
“Life doesn’t stop and we want to make the very best of our situation and it’s great to now be part of a national competition as a team for the first time.” The trio have received some fantastic support from the volunteers of the
Lincoln and Lindsey Blind Society
who oversee their games and keep score.
Ms Barker, who is partially sighted due to cancer, and Mr Limb who is partially sighted following an accident where he sustained a brain injury, both love the game and try not to take the competition too seriously, with all three of them enjoying each game as it comes. They all meet once every two weeks to play competition games and their scores are then sent off to the national league for analysis and final placing. With the team being half way through the league already, they stand a good chance of making the national finals in Wigan in October.
But in order to continue going, they need some extra support. If you are interested in making a donation, please email: