Page

The Loneliness of Sight Loss - My Journey with Cam Sight

 Blog by Vera Shilling and Dawn Preston

Cam Sight is a Cambridgeshire charity that supports local people of all ages living with blindness and low vision to live the lives they choose.

The RNIB estimate 21,200 people live with some degree of sight loss in Cambridgeshire. By 2030, it is expected there will be 27,900 people in Cambridgeshire living with sight loss.

Introduction

Vera commenced her journey with Cam Sight in 2014, following sudden sight loss, initially accessing services for support. Since 2017, she has been a Cam Sight volunteer, providing telephone friendship and organizing social activities for the Cam Sight community in Fenland. Since 2018, Vera has been a Cam Sight Trustee.    

Dawn joined Cam Sight’s Fenland service in 2013, having previously worked in social care in the London area. She has reached out to local people living with sight loss to help develop and embed services across the county.   

Dawn met Vera in 2014.

 

Vera’s Story                                                                                                                   

In 2014 I was receiving treatment in hospital following a long running illness. On waking after a procedure, I noticed the lights seemed to be flickering. I couldn’t understand what was going on, I was in a state of complete confusion. I ordered a newspaper to see if I could read it, but I could not. I kept rubbing my eyes and thinking this will clear in a minute. I told the ward staff and they organized for me to visit the eye clinic immediately. The clinic staff completed several tests and I had to suppress my feelings of panic as I began to realize how bad things were.

I was discharged after a week without an understanding of what had happened to my sight or a diagnosis of the condition I had. An appointment was made for me to return to the eye clinic a week later. This felt like an eternity and shock, fear and horror set in.

When returning home, on leaving the car I almost fell. It began to feel difficult to put one foot in front of the other. Home was unfamiliar and I felt isolated and alone. Family came to visit, I couldn’t see their faces, I felt isolated and alone. I stopped people visiting and communicating generally as nobody seemed to understand. I was isolated and alone.                                                           I began to realize the enormity of the situation as I started to think about my life and all the things that had changed and were missing.

I worked for the National Trust, holding a senior position, which took me around the country. I had a good income and a lovely company car. I loved my job and the lifestyle it enabled. My social life was busy and free time always full. There were never enough hours in the day, suddenly I was bored. How could it have all come to this?

I couldn’t do anything to relieve the boredom. I couldn’t connect with anything or anybody. I couldn’t watch the television, use the phone or my computer.

During eye clinic appointments staff talked to me about saving the eyesight I had and not about options for restoring it. I realized then that there was no hope of any improvement. My life as I knew it was gone and I felt complete and utter despair.

My family and friends offered words of support and encouragement but unintentionally trivialized my situation. “I have an Aunt who is blind, and she copes OK”. “Don’t worry it will get better”. “You’ll be alright”. And some turned me into a ‘she’. “Is she OK”. “Does she want a cup of tea”.

After sitting on the sofa for two days in the dark, feeling like I was in a ‘back bubble’ or some sort of solitary confinement, I knew I needed help. I felt like a non-person, who was just breathing. I couldn’t see a way out.

I contacted the RNIB not knowing what I really wanted. I told them that I could see but not very well. I asked them if they could do anything for me. They told me that most people living with sight loss had a degree of usable vision and that there was help available for me. They gave me information on their services and provided details of my local sight loss service, Cam Sight.

I called Cam Sight straight away and the phone was answered by Dawn. She asked me a few basic questions, I didn’t know the answers, I just fell to bits. The reality of not knowing what my eye condition was, if it would get worse or better and the horrible lack of support, really kicked in. Dawn reassured me that Cam Sight would help and arranged to visit me the day after. During the visit she talked about the practical and emotional support available. I felt lifted, a glimmer of hope, but did I have the strength to embrace this lifeline? Dawn picked up on my apprehension and told me about Rita, a Cam Sight volunteer. Rita’s sight loss history was very similar to mine and Dawn offered to arrange for me to meet her. I also mentioned that I was really upset about not being able to make myself a cup of tea. Dawn produced a little gadget called a liquid level indicator, which enables a person with sight loss to make hot drinks in a safer way. We had a practice and she left it for me to try out. (I didn’t want to do this in front of Dawn in case I couldn’t do it)! It took me ages to make my first cup of tea, from start to finish but I did it. I remember shouting through to my partner “I’ve made a cup of tea and it tastes like tea”! I felt completely elated for days and everyone who came anywhere near the front door got a cup of tea!

The following week I met Rita. Straight away I asked her “what do you do”? She told me about her full life and said she was never at home. In sharing her story, I realized that she had felt the same as me during the early stages of sight loss. I had made a connection with someone who understood. It was inspiring to hear how she had overcome her sight loss, taken control and forged a different purposeful life. Despite this, I still doubted whether I could muster the strength to achieve what Rita had. I decided to take small steps and set myself daily tasks. One day I emptied the bin, another I put the washing machine on, I put the shopping away and I cleaned my teeth on my own – Rita advised me to put the toothpaste in my mouth and not the toothbrush!

Rita and Dawn encouraged me to attend the Cam Sight monthly peer support group the following week in Chatteris. I gave it a try and was surprised at how many people were there. It was my first contact with a group of people with different eyesight conditions and degrees of sight loss. The meetings are facilitated by Dawn and follow a structure which enables information exchange, peer advise, social interaction and a slot for a guest speaker. I was made to feel so welcome and by the end of the meeting I began to get a feeling of belonging. I wasn’t on the fringe of things I was part of something. I relaxed and felt safe when I was there.

The two hours at the group were lovely but then it was back to reality. I continued to regularly talk to Dawn and she suggested I join an emotional support group, facilitated by Annette, a Cam Sight counsellor, due to commence locally. There was six people in the group, and we supported one another for the duration of the eight-week course. We shared experiences, feelings and fears. We talked about how our sight loss had turned our worlds upside down and the devastating affect it had on our relationships with partners, family and friends. I slowly began to navigate my feeling of failure and accept that I hadn’t let everybody down. The group was supporting me to really understand how I felt and to put things into perspective. They gave me the strength to challenge and fight back.

After a period of long-term sick, the time had finally come to give up my job and my car. Handing my car back was devastating and I cried more then than at any other time. It was final. Welcome to the world of the visually impaired. No going back. Even if there is a treatment that could help me see a little bit better there will never be a treatment which gives me the freedom and independence that my car did. Now I really am just an old blind woman, forever.

My lifetime of work had gone, and I had to commence the benefit application process. I didn’t understand the complexity of the benefit world and I didn’t know how I was going to survive. I realized the lifestyle that I had enjoyed had gone, and I had to cut down on everything, even the food I would eat. Dawn put me in touch with a member of Cam Sight’s Community Support team and with their help I successfully applied for the benefits I was entitled to. The Cam Sight friends I had made really helped me through this period of uncertainty and adjustment. They offered me advice regarding a more economical lifestyle and tips for shopping, transport availability and social/entertainment opportunities.

Whilst I was making new friends and enjoying the comfort of these friendships, I realized that my work and social friends were slowly disappearing. They had just stopped calling and I wondered why. Was it because we had nothing in common and nothing to talk about anymore? Did they feel awkward and sorry for me? Had I become a difficult person to be around? I felt rejected and betrayed.

Over time I joined more Cam Sight peer groups across the county. We often shared stories of the ‘accidents’ and ‘incidents’ of the week. I remember the laughter when I told of how I’d stored cheese in the washing machine and froze a bag of nuts thinking they were prawns! Slowly my despair was turning into laughter and I was discovering new depths in my friendships. With the support of the Cam Sight community I became determined to tackle every challenge, find solutions and embrace my new life.

I visited the Low Vision Equipment Centre in Wisbech, initially to undergo a magnification and lighting assessment. I tried different types and strengths of magnification and task lighting. I took the items we identified that would best meet my needs home, to try out in my everyday surroundings before purchasing. Whilst there I was amazed to discover the diverse range of equipment available to enable independence both at home and whilst out and about. I tried talking watches, kitchen scales that would tell me ingredient amounts and even a little gadget that would tell me the colour of the clothes I was wearing – no longer would I be wearing blue and green without a colour in-between!                                                                       I became aware of resources that would enable me to continue to do some of the things I enjoyed prior to sight loss. I tried large print and tactile board games (love Scrabble) and enjoyed a world atlas that was specifically sourced for me. I discovered large print books and the RNIB talking book service. I now get through 4 to 5 books per month.                                                                                                        During the visit I was given information on the more sophisticated technical equipment available. I was eager to find out more and to also explore new ways of using the IT equipment I already had. Dawn referred me to Cam Sight’s IT service based in their larger centre in Chesterton, Cambridge. As a result, I now use my iPhone to search the internet, attend Zoom meetings, for travel & navigation, shopping, everything!

As I grew more confident, I began to facilitate discussion groups as part of the rural support programme. It became apparent that members craved more social interaction and experiences. For many it is impossible to go out without support and for many there is no support. I worked with Dawn to develop a programme of day trips. We have enjoyed the peacefulness of a river boat trip, the chaos of Christmas shopping and the cheesiness of Pantomime jokes! We feel proud that we have enabled groups of people with varying sight and mobility needs to enjoy some fab, fun times.

I then began to organize local lunch outings with my Cam Sight friends, independent of Cam Sight. Eating out can be difficult and sometimes embarrassing, as it can be tricky finding the food on the plate and getting it into our mouths. Being part of the group and all being in the same situation eased our embarrassment and made us less self-conscious.

As I became more involved with Cam Sight, Dawn asked me if I would consider becoming a volunteer. She said she had identified people who were unable to access Cam Sight services due to health, mobility and confidence issues. She explained she would be extending the regular phone contact service (Ring-around) and thought I would be the right person to deliver this. It also meant that folks who had requested a volunteer befriender would receive immediate support until one could be found. I now provide regular support to 25 people and demand is increasing due to the social restraints of COVID-19.

My word was changing, and I felt proud of how far I had come since those first dark days. I was achieving again, being useful and of value to people who were most in need.

I began to try new things and when Dawn suggested coming along to a lawn bowls session I jumped at the chance. I’d never played bowls in my life and never thought I ever would. I learnt something new and made new Cam Sight and bowls club member friends. Over the months our team somehow improved and by the end of the season we were no longer playing on each other’s pitches!                                 One person I met told me about the Cam Sight tandem service and how much she loved it. She was a cycling novice prior to using the service but had reached a fitness level which allowed her to take part in the London to Cambridge bike ride challenge.                                This made me think about setting new goals and pushing myself further.

When listening to one of the 2018 Cam Sight newsletters, I came across an advert to fill a Trustee vacancy. I explored further and realized there was no representation from the Fenland area. I immediately thought, I could do that; I could be a voice for us folks here in The Fens. My application was successful, and I felt excited and pleased that I would be employing skills I had used in my ‘before life’.

In addition to supporting the charity’s management and administration, I have joined several working groups, forums and partnership boards. I am now a voice representing the vision loss community in Cambridgeshire.

I continue to feel different as I have a snippet of the life I once knew. However, I still miss my old life and I have bad days when I cry and feel useless. There is never a single day when I do not curse my poor sight. I wake up every morning and do not want to open my eyes because I don't want the reality of facing another day without my sight. I will never get over my sight loss, but I will try to live with it. 

I have a new life now and I can laugh again.

The sun does shine, I can feel it.

 

Get in touch with Cam Sight

Low vision and blindness affect an increasingly large proportion of the population. One in five people will experience sight loss in their lifetime and over two million people in the UK are currently living with sight loss that has significant impact on their daily lives. By 2050, the RNIB estimate the number of people living with sight loss in the UK will double to nearly four million.

 

www.camsight.org.uk

Cambridge - 167 Green End Road, CB4 1RW - 01223 420033

Wisbech - 14 Chapel Road, PE13 1RF - 01945 660795