My journey:  From light into darkness!

‘I am the unlucky one’ I said to the Consultant. I was sobbing away on my own with nobody to hold my hand or support me. Where did I go wrong? What had I done? I always helped everyone – young old, needy and desperate. So why did it have to be ME? I didn’t understand. 

The consultant was a Chinese doctor from what I remember, short and smart. He said,’You have done nothing wrong. In fact, you are lucky to be here – you could have lost your sight completely. You have a detached retina. Tomorrow we will operate on your eye so please don’t be upset. Here, phone your family to bring some clothes and your personal belongings. You’re going to stay here for a few days.’ 

My heart sank.

What will happen to my family? 

How will they survive?

Will I be able to keep my job?

Will I lose my house?

I gathered myself and rang home. Within half an hour my boys arrived with a bag full of my things. All three of them were upset but they reassured me that I was in good hands and that tomorrow will be a new day.  

I was taken in a wheelchair like an invalid to a Ward to settle me down. I was forbidden to walk or even move my head. I wished the earth opened up for me to disappear forever!

So my journey into the World of darkness started here!

I lost most of my sight after I had injured my head. It was very difficult to cope – especially because many people in our society make judgements. There is a stigma attached to being ‘blind’.

I am now officially Registered Blind. 

No one understands the ‘inner, mental or emotional’ side of being blind! I am still struggling but coping very well. 

Apple applications on my iPad, iPhone help me and my white cane is my partner – in -crime. I feel that my independence is sliding away gradually. Does anybody actually understand what I’m going through? 

I suffer from rare and multiple conditions resulting into night blindness, gradual peripheral vision loss, and near advanced stages of complete blindness.  Regular eye hemorrhages 

I have FEVR, (FEVR is short for Familial Exudative Vitreoretinopathy.  A big name but actually it is simply a description of the condition which affects people around the world) a progressive eye disease as well as Chronic Uveitis giving me spasm-a-tic headaches without any warning.

I’ve led a very busy life at home, work and in the Community.  

And now, there seems to be a full stop. I feel tied down and it looks like my world has ceased to operate. Even shopping in supermarkets is a frightening experience. What a journey! 

I have travelled from light into this darkness. 

I didn’t choose this. It just happened!

Most things and people seem out of focus even at about a span’s length. I can recognise a familiar person by their silhouette or when they speak. Even up close, I can hardly see very fine details. Sometimes, I can guess the identity of a person by the way they stand or walk. Too much bright light hurts my eyes and too dim makes it black and shadowy. I can’t see anything in the distance. Everything looks as if it is sunken in darkness. 

Scary and confusing. I avoid going out in the dark unless someone is with me. 

I was offered a choice between having a dog or a white cane. I chose the latter, simply because I thought it would be better at the time. and I’d had a bad experience with a dog when I was a little girl.  I am also allergic to the fur.

The white cane is my ‘friend and a guide’ when I am outdoors. It helps me feel the ground for cracks and holes, grass and bushes, parked cars, pushchairs and people going past me. I have to use it in a variety of styles depending upon the familiarity of the place. In a new place, I hold my breath and move gently in case I hurt someone or that they might swear at me?

I will be forever grateful to VISTA and RNIB Professionals for the support.

I have always been a perfectionist . When I can’t manage I feel I am a failure. I have broken many things at home, in shops, museums or theatres (displays). I also dread misplacing things so I instruct people to put my stuff where it belongs. This may seem ridiculous to some but it helps me find things I need quickly by touch and it gives me a sense of success! 

I am getting there by accepting my vision loss. However, there will always be a gap in my heart of being ‘a failure’ not being able to drive a car, keep the job of my dreams, seeing fine details of places as well as expressions on the faces of loved ones! 

This hurts! 

Sometimes I ask people to describe things and situations to me, I try to associate it to ‘what my brain understands as prior knowledge.’ I feel obliged and move on.

 But I also know that things change, situations can be different and the perception of one person can be different to another. 

My journey is unique, from sighted to severely sight impaired.  I have been through many life changes from how I am treated now. At times, I am like ‘Moses’ and many times I am ‘invisible.’  

I’ve lost only my sight but not my Vision. 

My life will never be the same again, such thoughts leave a lump in my throat! 

Now that’s not true, believe  me …

My life has taken a new turn during the Covid Period when I attended ZOOM Music Sessions led by Kyle @ LMMB ( Leicester Music Memory Box) organised by VISTA,  for which I will be obliged forever.  It impacted my well- being in a positive manner. 

I have started attending Geet Sangeet @ LMMB participating in singing songs in different languages as well as genres. Thank you Team Beena…

How has that helped me?

Well, I’ve always wanted to sing/recite Sanskrit Stotrams and Stuti ! 

Now I can share my knowledge and understanding of the subject. These sessions are held in person and on ZOOM on a weekle basis.  

How has that affected me? 

I have become more confident, it has helped my mental and emotional well being. I know I have far to go yet but I believe in myself. I have made good friends who share their stories with me .   Together we have made a new family of friends. 

Here’s the Song I sang recently :

मैत्रीं भजत अखिलहृज्जेत्रीम्

मैत्रीं भजत अखिलहृज्जेत्रीम्

आत्मवदेव परानपि पश्यत ।

युद्धं त्यजत स्पर्धां त्यजत

त्यजत परेषु अक्रममाक्रमणम् ॥

जननी पृथिवी कामदुघाऽऽस्ते

जनको देवः सकलदयालुः ।

दाम्यत दत्त दयध्वं जनताः

श्रेयो भूयात् सकलजनानाम् ॥

Celebrate friendship, to conquer all hearts,

Look upon others as thyself. ( refers to Atma) 

Renounce war.

Do not compete.

Don’t be aggressive .

Mother Earth produces in abundance.

God is kind and loving.

Ye people of this world!

Restraint yourself from harming others, be charitable.

Let’s all be happy and kind

Let’s all be joyful.

I love this song .

So here’ I enter a new Realm  of Peace and Joy ! 

Written thoughtfully by

Urmila Sharma-Valand