When I was first diagnosed with progressive sight loss, I found myself googling how I was feeling because I was so unsure about what was going on in my own head. The search results chorused the same: being told you’re going blind triggers a process like grieving. The stages of grief are, as we may commonly know them, shock, denial, anger, anxiety, depression, and acceptance.
But I do not want to start at shock for my first post.
Instead, I want to work backwards and give you a glimpse of me now, in the final stage of grief.
For me, a large part of acceptance is being open to adaption. I make small changes so that I can continue to do things myself. RP has cast a new framework over parts of my life, and it is one that I now try to embrace.
For instance, when I had more usable vision, I had a floordrobe and a CD collection that escaped cupboards and cases. Discarded plates and mugs were my ornaments. As my sight declined, I chucked my clutter and mapped clear paths in my flat. Nowadays my clothes are folded and categorised so that I can identify them by touch. Tops on the left and trousers and skirts to the right. From chaos to Tetris.
At first, I really resented the gradual apparition of rules like these in my life. I refused to rearrange obstructive furniture, ignoring flowering green bruises in the bath. I turned cupboards inside out every morning for years because I could not see their contents but didn’t want to admit it. I’m trying to put a stop to my stubbornness. True, making adaptions is proof that I can no longer do some things the way I used to, but adaptions are also time saving, and they make me safer.
Yet acceptance does not mean that I am no longer upset about the state of my eyesight. Every few months I find myself researching clinical trials and treatments, while day to day I feel that I would not change a thing. My stomach drops when I notice I can no longer make out the edge of the curb in daylight, but I have a strange delight in seeing how my sight loss has materialised to provide a new lens by which I view my world. Acceptance is both hot, fast tears when I’ve fallen down the stairs again, and forgetting I am disabled for whole days because I blend in. It is being afraid and excited by the prospect of not knowing what my future will look like. Most importantly, acceptance is advocating for my rights.
I deserve access.
When I walk into a café or bar (and in York there are lots), I ask that the lights are sunshine bright. I request a hand down the stairs, and I let managers know when their spaces don’t meet my standards. I have laws and legislations like the Equality Act of 2010 memorised – perhaps these quotes should be classed as aids, because they have helped me out on a few dark days.
But I am not daredevil. I am vulnerable, in new places (sometimes even familiar spaces) I feel self-conscious and on edge. I am stunned and embarrassed when a stranger doesn’t understand why I’ve crashed into them on the street. It takes me a few panicked moments before I can find the words to explain, I’m sorry, I didn’t see you. There is no hidden power here, sight loss makes me slower. Navigating a world that is made for sighted people feels lonely.
Still, it’s swings and roundabouts. I think I have become more broad-minded, which is not a superpower but a clear sign of growth. When I see someone with a cane or a mobility aid, I no longer feel a token pang of gratitude (“thank god that’s not me”) but am just energised to spot a kindred spirit. I understand the pitfalls of aging oddly well for someone in their twenties, so I try not to dismiss the ailments of the elderly. My grandparents are losing ability with age, and so am I.
I have been given some of the secrets of the world. Disabled people are people. Many disabilities operate on a spectrum. Sight loss is a spectrum. Most blind people maintain some usable vision. Blindness is not blackness. You can be blind and happy: I am happy.
This first post wrote itself; it came flying out like it was itching to be written. I’m going to end this fast spell of writing by citing some things a couple of my favourite people have told me.
I remember playing the oppression Olympics with two close friends. They took turns swapping and trading elements of themselves. When they got to me, one mate just laughed and said that my identity reminded him of a spaghetti junction; he was suggesting I am an amalgam of different pathways both separate and converging. He was right. I am brown, British, queer, and disabled. I am not lost in between each of these worlds, but I exist in all of them at once.
When the optician delivered the news to me, my fiancé, who is generally quite reserved, reassured me by saying that “everything has changed, and nothing has changed.” Two years on, I wonder if his words are at the heart of acceptance when you are living with sight loss.
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