An empowering vision

HOW BHAVINI MAKWANA TURNED THE TRAUMA OF SIGHT LOSS INTO INNER STRENGTH

by ASJAD NAZIR

GROWING up, Bhavini Makwana led a normal happy life and then everything changed in 1997 when she was diagnosed with retinitis pigmentosa. Since then the 37-year-old has been gradually losing her sight. Instead of being defeated by the incurable condition, she has led a full life and found strength in her own silent pain over time to help others who have sight problems with tireless work.

The London-based mother of two recalled the moment her extraordinary journey started. “I was 16 when I noticed it had started becoming difficult for me to see in dim light, but as teenagers do, I didn’t take it very seriously and hoped it would just go away. However, it quickly became a real issue because I started bumping into things and became clumsy. I realised I couldn’t see people if they walked up beside me, but I covered all this up. I was frightened, but didn’t tell anyone what was going on,” explained Bhavini.

Things quickly came to a head when she left a family party one evening and realised she couldn’t see anything.  Bhavini had walked out of the venue and froze in terror, but luckily her mother was there to help.

Not surprisingly the teenager was devastated and couldn’t stop crying. She also couldn’t ignore what was happening any longer so visited an optician, who in turn referred her to a leading eye clinic. “Within a few months, just after I was 17, I had a diagnosis. I was told I had retinitis pigmentosa (RP) for which there was no treatment or cure. I would lose my eyesight, but they couldn’t tell me how long this would take. It could be months or years,” she recalled.

The devastating diagnosis was crushing and in order to cope she buried her head in the sand. She didn’t want to know more, but deep down was terrified about a future without eyesight. The fear meant Bhavini didn’t fill in the university application, despite desperately wanting to pursue her dream career in business law. “I made excuses to not go out. I hid away, not wanting to confront what the future held.”

Eventually, a local rehab worker and her mum encouraged her to attend college to continue her education, which she pursued but she resisted all other offers of help and refused to be registered as vision impaired. “I hadn’t spoken of my RP to anyone outside my immediate family or to friends, so I quickly became known as ‘the clumsy one’.”

Independently trying to manage and come to terms with her deteriorating eye condition, she became more and more isolated as normal activities with friends her age like bowling, cinema were all in dim lighting or in the dark.

Bhavini didn’t know how to explain that she was different and would struggle seeing in low lighting and would require being guided and supported by her friends and the easiest option was to make an excuse not to attend.

Things changed a few years later when she met her future husband at an event. “I felt completely at ease and comfortable around Paresh and told him about my sight loss fairly early on in our relationship. He went away and did some research, telling me things about my own condition I never knew. With his encouragement, I finally did my own research and this gave me the confidence to tell a few more people about my RP. This was still limited to close family, as I was still worried that my friends would feel differently about me if I told them.”

Bhavini had gained strength from Paresh and their love for one another grew stronger and they married in 2002. She had her dream wedding and very few knew about her RP condition. “In fact, people often commented that I was very dependent on my husband. But I was happy for them to see things this way as it meant I would not have to disclose my slight loss.”

They became a strong unit and in 2005 were blessed with their first daughter. The pregnancy and labour took its toll on Bhavini’s vision and reduced it even further. The symptoms had become worse, but the young mother managed to get out with her baby and purchased a big, bulky pushchair so her baby would be safe if there were any bumps or obstacles in the way. Four years later they had another beautiful daughter. But by this time her vision had changed so significantly she was unable to go out alone. “I became withdrawn, depressed and dependent on those around me. I came home one day and realised I couldn’t recognise my own house from the street. A meeting with a new rehab worker swiftly followed. By the end of the meeting he’d put a strip on my front step so I wouldn’t have the same problem again and gave me some other coping strategies for day to day living.”

Most importantly the rehab worker provided reassurance and inspiration. Much to Bhavini’s surprise he too was visually impaired. Then one day her husband Paresh noticed a poster being put up whilst at her annual eye check up regarding a Retina Day event at Moorfields a few months later. Bhavini attended the event, where she heard a talk from one of the RP Fighting Blindness’ (RPFB) staff members. “I’d never heard anyone speak about RP before so to hear more about the work the charity did and to learn more about the eye condition was fascinating. This in turn encouraged me to call the charity’s helpline. They offered advice, support and helped me overcome some of the day-to-day difficulties I was experiencing.”

This was a big turning point for the mother of two, who became a member of the charity shortly afterwards and suddenly realised she wasn’t alone. The life-changing moment showed her that with support and assistive technology available she could continue living the life she wanted. Bhavini felt empowered and that she could achieve great things. “I could finally breathe again,” she said.

The confidence I gained from RPFB coupled with a near miss led her to long cane training which meant she could get out and about by herself again. She was able to pick up her daughters from school and visit local shops along with other things usually taken for granted. These massive triumphs enabled her confidence to grow even further to the point she started helping others.

Bhavini has volunteered for the last three and half years on the RPFB helpline and worked as a volunteer eye clinic liaison officer for one of Moorfield’s satellite eye clinics, as well as a telephone facilitator for Royal National Institute Of Blind People (RNIB). In addition, she founded a support and social group for the visually impaired in Barking and Dagenham called SocialEyes.

In April 2016, she started a full time role as an activities co-ordinator at East London Vision, part of The Thomas Pocklington Trust. “My role here is to support blind and partially sighted people living in the seven boroughs of East London with vital information to assist their daily living with confidence and independence, arrange outings/activities and meetings with guest speakers to enhance their way of life. I have recently started creating workshops in my spare time for people with sight loss, which are open to anyone across London and beyond on various topics that can empower, motivate and encourage people with sight loss, feel part of this sighted world which we live in.”

Her workshops so far have covered a diverse range of subjects including self-defence and hair, makeup and skincare training for people with sight loss. She has many other workshops lined up for the future. To keep up to date with future workshops and to see videos from the events, like and follow her Facebook page, where she shares information on her charity fundraising events, experience living with a vision impairment along with hints and tips.

Bhavini was awarded the Prime Minister’s Points Of Light award by Samantha Cameron at 10 Downing Street for her immense charity work and for making a notable change in the community. Bhavini was also awarded The Lynda Cantor Founder Award for the Future of the Charity, for her work dedicated to RP Fighting Blindness.

Moving forward, she is looking to empower more people with visual impairments including those in the Asian community and to raise awareness of those affected with sight loss and their loved ones.

Today Bhavini has come a long way on her journey and has helped a lot of people, but the thought her sight will completely deteriorate and one day she won’t see anything at all still fills her with dread. “I still have moments of isolation, sadness and fear for what the future will hold. I find it very difficult to accept that I won’t be able to see the faces of my two daughters, family and friends including my little nieces and nephews’’

Finally she urges others to be more compassionate and aware about those who are struggling with sight loss. “It is extremely hard when attending social events as people think it is easier if you are sat down in a corner, safe, intact, but people like myself would rather be involved and feel included. It just takes a little knowledge of knowing how to guide someone with sight loss while maintaining their dignity and just giving them simple information about what is around them, who is there and what is going on.”