I had become one of the vision-impaired, and I was off on a trip I had never in my life expected to take. I learnt to live successfully with sight loss. My hope is that, I can help others deal with the emotional distress and sense of helplessness that I did when I first faced a future with vision impairment.
In May 2009 I was taking one of my Military Boot Camp Classes. The Boot Camp workout is a fast-paced military style interval training class that incorporates a wide variety of exercises such as, push-ups, jumping jacks, sit-ups, running in place and a load of others. Alternating between quick movements and short rest periods a very challenging interval session.
As the instructor my role is to keep everyone going even when they’re ready to give up. I played the role of drill sergeant perfectly, yelling over loud pumping music to a room full of devotees. We all loved our twice weekly class. Under these conditions, I guarantee you’ll push yourself to the max. They did, and I did.
Those who participated in this class always brought their all to it and perfectly demonstrate the never give up philosophy. I really gave them a routine designed to beast them. I’d invite them to give up and quit the class, and they’d just carry on no matter how exhausted they already where. They were as determined to not let me beat them as they were to get fitter which was the reason they were in the class in the first place.
Well on this particular day, May 16th, 2009 things didn’t go quite as normal.
There I was standing in the front of the class. They were in two lines. But suddenly those to the right hand side of me just vanished. Literally, whoosh away they’d gone.
Now either they’d been beamed up by some alien space ship unlikely, they’d done a runner, even less likely, they’d never have been that brave to have dared my retribution, or …..
My right eye had suddenly lost total vision.
Being the strange soul that I am, there was no way I was letting on to this occurrence, I continued with the class, ended it, and made a quick exit from the club. Although I must be changing because I’m revealing things through this story that I thought I’d keep buried forever. It is amazing how change can come about within us.
The journey back down the motorway was interesting. I’d done it every week for over 3 years, 4 times a week at least, yet suddenly this 3 lane motorway seemed to have shrunk down to one lane.
I made an easy decision to divert from my journey home, off to the nearest hospital. To cut a long story short, about 5 hours later, and after being examined by literally 10 different doctors, I was then offered a choice … let them operate at 9am in the morning and have a chance of saving my eye and some of my vision, or go home, and lose both. That was a no brainer.
I won’t go into any of the gory details, or the causes etc., but we will just say that the simplest explanation for what had happened was my retina came detached with a few other complications.
Retinal detachment is a disorder of the eye in which the retina peels away from its underlying layer of support tissue. Initial detachment may be localized or broad, but without rapid treatment the entire retina may detach, leading to vision loss and blindness. It is almost always classified as a medical emergency.
Anyway following the operation, I remember seeing the surgeon looking over me through my good left eye, telling me the operation had been a success, my eye had been saved, and about 25% of my vision restored.
I admit the next 18 months proved an incredible struggle. I left the hospital after 5 days and for 6 weeks rehabilitated at home. This simply meant I kept my eye covered and spent almost every minute lying down. Very little of that time did I spend thinking about my future. I just wanted to get back to work and put this all behind me.
On returning to work I tried to struggle through. But things were different. Many of the activities I had done for years proved impossible for me to do. It took me a long while to accept that I had to make changes, big changes and that would include completely changing career.
Matters weren’t helped by the pain that I was experiencing in my eye and the constant visits I made to the emergency department at the eye hospital. After a year this led to another eye operation, where they removed the buckle that had been inserted because it had slipped and was the cause of many of my difficulties.
Slowly but surely I adapted to the difficulties and went on to rebuild my life. Then in the year 2014 it happened all over again.
From about September I began to notice changes in my vision. I was now an author and would spend a lot of time on my laptop writing articles. I realized that I was having to place the screen closer to myself and had to increase its brightness up to its maximum. I refused to allow myself to think what this could mean, I wouldn’t let myself consider the idea that maybe something had once again gone wrong with my eye. I simply carried on.
My daughter had been having terrible problems with gallstones. They wanted to operate but thought the risk was to high with her being pregnant. In November she had a severe attack and was hospitalized. So there I was one lunchtime sitting by her bedside. It was approaching the end of visiting time. My mobile phone vibrated in my pocket indicating a text message had been received. I took the phone out, clicked the button and the phone lit up, but I couldn’t read the screen.
To allow me to best cope with the loss of vision in my one eye it had been found that by wearing a contact lens in my other eye I could see perfectly well in the distance through that eye. Although this meant I couldn’t read through that eye my ‘bad’ eye which couldn’t see much that was in the distance was perfectly able to read. Well now it couldn’t.
I waited until visiting hours were over and headed straight downstairs to the eye emergency clinic that I knew so well. Sitting in the waiting room for 3 hours was the most incredibly frustrating time. I kept trying to read my phone but couldn’t. I just sat, waited and worried.
Eventually my name was called. It was like deja vue. Eye drops galore put into my eye. That old familiar stinging that I’d grown to hate. Then the investigation began. Chin in the rest listening to the words I’d heard 100 times before. Look right, up, down, look left, up, down, look straight ahead, up, down. It went on and on. Then I was left alone for about 10 minutes before the doctor returned with one of his colleagues. This new doctor went through the same investigation. They then had a quiet chat just out of my ear shot before telling me, ‘unfortunately you have had a retinal detachment.’ It appears to be in exactly the same place as your original one, we’re sorry, but of course we need to operate urgently. Off they went to organize this.
So there I was sitting back in the same hospital I’d been in 5 years ago and received the same diagnosis. I was in a state of shock. In fact I was hurting, I couldn’t believe life could be so unfair.
They returned and informed me that they’d spoken to the surgeon, the same one who operated on me originally. I was told that they were afraid to say I couldn’t have the operation immediately. The surgeon had a few cases already come in today, and these people were ‘fully sighted’ where I was already ‘very poor vision’ so they have to be regarded as higher priorities. Both of the doctors facing me looked disappointed with the news and you could tell they weren’t happy with the decision. But the decision had been made and I would have to wait 5 days before the operation.
Even now I don’t remember anything about those 5 days. I never expected this to happen again and I was just down.
Things had obviously moved on in the medical world. My original operation was done under a general anesthesia with a scleral buckle inserted into my eye to connect the wall of the eye with the hole in the retina. This time around it was done under a local anaesthetic using a procedure called pneumatic retinopexy where they inject a bubble of gas into the eye which floats up to the hole in the retina and pushes it back into place. It is then sealed with a laser. In a matter of hours I was in recovery then a few hours later I was allowed to leave.
I had to posture for the next month where you keep your head turned to one side so the gas bubble kept the retina in place. I needed to maintain this posturing position for 50 minutes in every hour. There’s not much you can do in 10 minutes, but in the first few weeks there didn’t seem much that I could do.
For the first week I could actually see the bubble or what looked more like a small sea of water going up and down like a waves coming in and going out. This excited me because it meant I had vision through my eye. But as the gas evaporated so did my vision. As the days past I seemed to have just a fog through that eye. There was no focus everything was off both long and short distance.
I felt incredibly down. Living on my own made things that much more difficult. My good eye, the one unaffected by retinal detachment had previously been my bad eye. It never had good vision and had always been supported by glasses or lenses.not having a pair of glasses and being unable to wear contact lenses I was truly limited by my sight. Pouring water out of the kettle to make a cup of tea normally found me pouring it all over the work surface. Seeing the dials on the cooker was a challenge and being able to see whether food was fully cooked was impossible. I could go on and on about the things that challenged me but many of you will already know from your own experiences.
The week before Christmas I went for my second appointment with the consultant. Sadly these two appointments were the only time I left my home well with the exception of walking to the local shop for groceries a challenge in it’s own right.
The good news that my consultant was very happy about was the fact that my retina was still properly attached. The operation was a success. The fact that my vision was almost non existent, I had a permanent irritation in the back of my eye and I seemed to be devoid of any energy didn’t seem to faze him. He informed me that over time I may see some improvement, but this was now in the hand of fete. I asked was there anything I could do to help this and he said nothing. Then I asked what could I do to avoid it happening again or worse still to my other eye, and he said that was in the hands of God. Then the words that will stay with me forever that I’ve already written in this book were said ‘for 50 years you’ve had 2 eyes, now you have to get used to having only one.’
I was what could only be described as shell shocked. He brought the appointment to an end by saying we will meet again in 3 months and if the retina is still attached I will discharge you. On leaving his office I had to immediately take a seat in the waiting room. I then brought my head into my hands and broke down into tears.
His attitude shocked me but worse still he offered me no rehabilitation or support, I felt abandoned by the medical world. He completely ignored the emotional consequences sight loss was having and implied there was nothing more, clinically, that could be done. He offered no empathy, information or counselling.
For the next couple of days I was completely down. But Christmas week had arrived and I tried to get myself into the right spirit, but it wasn’t easy. For so many reasons this was to be a Christmas like no other.
For starters it was my first Christmas without my mother who past away in the February. Also the first in a very long time that I was a single man, my divorce having been finalised this year and my new relationship having come to an end. I felt very alone particularly with the fact that my father, sister and daughter lived 50 miles away. My other daughter who lived 300 miles away was with them for the holidays. I could have stayed with them but my ex wife and her new fiancé were visiting. I didn’t feel well enough to have to face them so stayed at home. This made me feel more down than I’ve ever experienced before.
Christmas Eve was like any other day. I postured throughout, getting up to just make meals, eat and go to the toilet. The hours crawled along so slowly. I admit I felt abandoned and incredibly lonely. I felt the negativity growing and I was tormented by the fact that I’d been unable to go out to buy any presents for my children or my wonderful granddaughter. Christmas Eve came and went.
Christamas day I felt much better. I was able to get over to my family home and spend some time with everybody. It had been agreed that my ex wife would go in the morning to see my granddaughter open her presents and leave by 12 when I would arrive. I was to have Christmas lunch and leave about 6 so she could return. I admit that on entering the house I just didn’t feel it was right. My negativity again took over. This was my family home yet I was playing second fiddle to my ex wife. My daughters, worse still my sister were ignoring my situation, my feelings and simply weren’t being there for me at this time of crises. My feelings were completely uneasy, and I couldn’t get out my mind that this was the first Christmas without my mum, and if she’d been still here would she have allowed me to struggle with my problems alone.
Even our loved ones at times make their own visual diagnosis and come to the conclusion that we are embellishing our situation or trying to pull the wool over their eyes, because we look fine. Even professionals struggle with believing our conditions and the difficulties it causes. At times we question our own self sometimes wondering whether we are frauds. They all seem to ignore the emotional trauma that takes place.
I was sitting in the lounge alone everyone else being busy doing things. I was thinking to myself this was no different to being at home alone. I made my way to the kitchen to make a coffee. I took a mug, boiled the kettle. Having put the coffee in I then began pouring the water. Unfortunately, not for the first time, I missed the mug, and then having readjusted kept pouring until it began to overflow. I just snapped.
I went in to my dad bent down gave him a kiss and said I’m going. I didn’t wait for his reply. I headed out the back door and found both my daughters in the back garden. I explained to them that I didn’t feel well and needed to head home and get back into bed. They asked me to stay for lunch and I said I really wasn’t in the right frame of mind, and didn’t want to ruin the Christmas spirit.
I was told that I was ruining every ones Christmas. I just looked at them, shocked, and walked off. My youngest daughter followed and stopped me. She said ‘please stay dad, its Christmas.’
I felt my emotions erupt and an outpouring of words just flowed out my mouth. I explained my feelings, shared how I was hurting not just from my vision problems and my precarious health but the lack of support I felt I was getting from my family. For a month I’d lived on my own yet not once had anybody been over to see me or help me. The words just kept coming. Yet I also kept saying this isn’t the time, I really don’t want to ruin their Christmas.
I did stay for lunch and had a lovely meal. Then I headed home and went straight to bed. Having driven for the first time in a month, 100 miles round journey I was simply exhausted. I want to add that I’m legally able to drive as I still have one eye that with glasses or contact lenses can see perfectly well. Although using this eye seems to tire me out so quickly.
I woke on boxing day at about 6am but was to exhausted to get out of bed. I was going between sleep and just lying there thinking, all negative thoughts. It got to about noon and I was still wasting the day away in bed. I reached for my phone to see if I’d received any texts, but nothing. My thoughts just spiralled down. I matter to no one. No matter what I was going through, loss of vision, a blood pressure out of control, 220/110 and a total lack of energy it seemed nobody was interested. This crazy thought came to my head, that if I died here in bed I wonder how long it would take for anyone to notice.
Then the words ‘what is the point of going on’ reverberating around my mind. How could I keep struggling through, so limited by my vision. I was struggling with so many normal standard activities. I’d never been prepared for living life through just one eye. I never realised how difficult it would be.
I was lost, felt on edge, seeing my situation as being the beginning of the end for me. I felt exhausted. Sadness took over. I knew I was now a victim to my vision loss and totally lost sight not only externally but internally too. I could see no future. Everything I had worked towards now seemed impossible.
For 5 minutes I felt myself sinking further and further down. Then this thought came to me ‘Do I want to go on anymore or is now the time to end it?’
Then I suddenly bolted upright and said ‘No more, this isn’t me, I can get through this.’ My mind immediately changed and from that moment forward my life began to transform.
I am now excited by the life I’m living, and I am empowered. Now I have the mission to help others struggling to come to terms with visual impairment rebuild their lives, and share their stories, so they in turn can help others to find their way.