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.
to be cont.,