So I last left you falling asleep with Clarence and me in our own beautiful bed, after we escaped from the dreaded hospital. It was the end of November and the days were getting shorter and I was getting ready to spend my birthday, for a third time, in the midst of cancer progression and chemo. But It was a relief to be back in my little haven of a flat, and although I could no longer enjoy the beautiful views out of my windows, I could certainly appreciate the feeling of sun on my face as it streamed into my living room. My flat seems to be able to find any hints of sun that might be out there and direct it straight my way. This beautiful feature often leads to me thinking the weather is much more pleasant than it actually is, and walking outside to a grey day, when I am hit with an icy wind that rattles through my bones, always comes as a complete shock.

Being at home was certainly an improvement on the hospital. Things (mostly) stayed where  I expected them to be, and I could run my hands along solid walls to navigate around. When entering a room I would ask ‘where are you guys’ to ascertain Mum and Dad’s location so I could navigate around them, which reminded me of playing games of Marco Polo with friends in my swimming pool when I was younger. I got the hang of it all pretty quickly, but It amazed me to find that although I know  my little flat so well, it took time to learn the exact  distance between furniture or walls, or the very precise angle I needed to set off from the dining table to make it successfully to the far end of the sofa, rather than ending up at the window on the other side of the room. I learned of a concept called ‘squaring up’, which basically refers to making sure you’re orientated at the correct angle before setting off. Depending on the journey’s distance, the error could be negligible, or immense. 

There was a recalcitrant chair in my living room that seemed intent on playing the trickster and sending me off course.

There was a time back during my hospital stay when the bed was moved (during the PICC line insertion) and it threw me completely that whole evening. I could hardly find my way around anymore. I had to relearn my way around my bay the next day. I was talking to my bed neighbour D and I mentioned how silly I felt for getting so disorientated from what must have been such a tiny change. Was I just overreacting? But it honestly felt like the whole room had shifted from where I expected it all to be.

‘No baby girl,’ she’d told me. ‘Things were definitely moved in here, and of course it’s going to change everything.’
‘Is it?’ I sniffed, feeling slightly demoralised by it all.
‘Absolutely,’ she assured me. ‘I had a friend growing up who was visually impaired, and her parents had to use masking tape for all the furniture, so that whenever they cleaned the house, nothing got moved even slightly, so she could still navigate around. It was a relief to hear that was completely normal and expected. I had no idea.

I was still at a loss about how to survive in the world, blind, though. I could hardly use my phone, I couldn’t send an email, pop out to get some milk or go for a walk. I just had to sit around in the darkness and wait for my parents to talk to me or let me dictate a message for them to send to my friends, or start an audiobook playing for me. Most apps hadn’t really added Siri support, and those that had were not particularly fit-for-purpose. It felt nearly impossible to keep hold of who I even was anymore without being able to do so many of the things that made me me. What was this existence I was fighting for? I needed to know there were other people out there surviving, and in fact living well and happily, blind.

I listened to a couple oF memoirs written by blind people, on audiobook  (though for some reason, most of the ones my friends found for me didn’t have audio versions. The ones I managed to get my ears on were a mixed bag, but I still got some useful bits and pieces, like the concept of ‘squaring up’. One of them even narrated their own audiobook, which was pretty cool and made me wonder how she’d managed It! They also helped validate some of my experiences, helping alleviate some of the loneliness caused by being ‘the only blind person ever to have been at UCLH’ (eye roll). Such as the fact that when you are blind, any unexpected contact becomes startling and feels amplified (and scary). One author described it as feeling like ‘smack, smack, smack’, every time someone touched him with no warning. I could certainly relate. Before I’d read that, Mum had been pulling hairs off me whenever she saw one (which was often – chemo was wreaking its usual havoc), and I couldn’t work out why it always felt like such an attack and threatened to reduce me to tears. Once again, I wondered if I was just overreacting, being silly? This time it was the memoirs enabling myself to provide the comfort in D’s place – ‘It’s ok Baby Girl,’ I soothed myself, with D’s voice in my head. ‘It’s very valid and normal’.

The worst thing though was whenever someone randomly grabbed me. (I have certainly collected some instances of serious breaches to my personal space, but that’s another story.) When I’m reaching out for a wall I’m about to use to navigate with, or on my way carefully to the toilet in the hospital, for example, it was absolutely terrifying to suddenly get grabbed out of nowhere with no warning. And even worse when that grab comes with a pull. Reaching for a wall and instead, coming in contact with a human who you had no idea was standing there silently watching you, who then decides you’re doing it wrong in some way, and they take it on themselves to take over, is incredibly patronising, infantilising, disruptive, and disorientating. Every journey I take now, whether it’s a short shuffle, or a longer wander, involves a lot of extra brain work, whether that’s counting steps or keeping track of angles and obstacles. Someone deciding I’m incapable and that they need to somehow ’save me’ from myself, completely throws me off course. I don’t need the interruption or the shock to the system, and I will just ask for help if I need it, and I’ll be incredibly grateful for getting the assistance I actually need, rather than scared and confused, and in a situation I don’t feel comfortable being in. If in doubt, the best nurses upon finding me shuffling down the corridor, might just say; ‘you ok Jen?’

Anyway, moving ever onwards, the appointment at the Royal Free Opthalmology department came and we all set off. We were a bit early, so we managed to fit a quick coffee in at a nearby café I’d been wanting to try for some time. There was quite a wait for my appointment, as they were so oversubscribed. But eventually we heard my name. First I was taken off to a small room, led by Mum and brandishing my stick. The woman sat me down and after a brief chat, asked me to read the letters off one of those eye test signs that was on the wall.
‘Umm…’ I said, confused. ‘I can’t, I can’t see…’
‘How about this line?
‘Huh? I’m blind…’
‘In both eyes?’ She said, and I got the distinct feeling of the makings of a drinking game every time someone asks this.
‘I only have one eye… I’m completely blind.’
‘Oh, Well, hold this.’
Before I could work out what was going on, she thrust something into my face, smacking me across the eye and nose. I jumped back, completely terrified. Thankfully, Mum spoke up brilliantly in my defence.
‘She’s blind! Don’t you understand? She can’t see at all!’
‘Oh, well, these tests won’t really work then.’
I know!

It seemed that the Royal Free hospital, even with their Opthalmology department, had never come across blind people either.

Eventually we were called in to see one of the doctors, who actually remembered me from my previous trip. She was very kind, but the extent of what she was able to do was to shine a light in my eye and tell me it seems fine.  I told her that of course it was fine, as we now knew it was the cancer causing damage to the optic nerve.
‘Have you already had the results of the scan?’ she asked me.
‘Yeah… Do you not have it?’
I knew the answer of course, before I even asked it. Before I escaped my hospital stay, I made multiple doctors promise they would send ALL my information and results over to the Royal Free ahead of the appointment they all kept telling me would give me all the answers, even after I’d tried to explain it wasn’t that kind of appointment. But of course, they hadn’t sent anything. Thankfully I’d had the foresight to print off my scan report and bring it with me. So I handed it over.

Unfortunately the best the eye doc could give me was to say ‘Oh yes, ok then, it’s cancer…’ and to send me on my way.

Before we left, we thought to ask about something the kind Aussie Occupational Therapist at UCLH had found in her Google search about blindness – how could we get a certificate of blindness so that I can be officially registered as blind (whatever that actually means)?
The kind doctor said she would ask the Opthalmologist to do it for me, and it would get sent in the mail to me, my GP, and the local council. So that felt like something at least,

Though it’s been two and a half months and we’re still waiting…