What Does Independence Mean to You?
My heart sank in a way that can make me weep even now, 10 years on. I had turned to look at my daughter and realised I could not see her face, she was only 2 meters away but appeared as a little blur at the end of our hall. Later that week, after lots of tests I remember hearing the ophthalmologist saying “you are now registered blind” and thinking, “don’t be ridiculous, I can still see”, not much admittedly but outlines and colours.
Initially, I was so angry to have been given medication that was supposed to cure one thing but had ended up giving me toxic optic neuropathy. When I asked about others experience of recovery I was told, “well two people had it in Britain, one got better and the other did not”, so 50/50, I was not loving those odds.
As someone who thrived at work I was devastated to hear so many recommendations to give up work, being told I would not be able to carry out my job and I should settle into a life of being disabled. I found this astonishing and I will be forever grateful to my employer at the time Cyrenians and amazing boss, the late Des Ryan, who reminded me “Rachael you are stronger than you think, you have not all of a sudden lost all your experience and knowledge, you can’t see at the moment and I hope you will teach us how to work with you?”
I did not feel strong, I felt angry, scared and confused. As a fiercely independent person it took me a while to realise that what I had previously thought of as independence, being in control of what I do, being able to do everything for myself, being able to pick up my passport and get on a plane and go anywhere in the world, may have to be reviewed and that if I wanted to continue to be independent, which I most certainly did, I would have to get used to asking for help.
It felt counterintuitive, asking for help to remain independent and it did not come easy but I found that the more I asked for help the more I was able to do, the more I was able to do the more in control of my life I felt, the more able I felt, the more independent I felt.
I am very happy to report that after 18 months of not taking the drug my sight returned slowly, I still have no depth of vision, am photophobic and my perception of colours has changed but I can certainly live happily with that as I can see my beautiful daughter, it makes my heart swell just to remember being able to see her again after 18 months.
Having had sight taken away and then returned I am conscious every day to be grateful for the beauty of nature and to notice the world we live in. Hugely grateful to my husband, friends, family and colleagues who were all very patient and I am hugely thankful for their kindness and compassion, through what was quite the most extraordinary time.
Having taken this time out to reflect on the past 10 years this question sticks with me and I am genuinely interested to know, what does independence mean to you?