First day

If you really want to hear about it, the first thing you’ll probably want to know is when it began. The answer I guess is about 50 years ago. I was sitting in a school classroom one afternoon and the teacher came and spoke to me and asked a question. I looked up and all of my visual field was broken into shards as though the teacher was in a Picasso painting. I was terrified, couldn’t answer and I didn’t know what happened. I thought I was going blind and perhaps I was, but not then. That was one of many episodes but they all resolved quickly.

So when does the real story begin? One evening last week I went upstairs to wash my feet, of all things. While washing them I sensed the usual aura coming on where I see the jagged castellations or the flashing lights, classical symptoms of a certain type of migraine which Hildegard of Bingen seems to have suffered from, attributed to visions from heaven. On the strength of these she wrote some rather beautiful music but they weren’t visions from heaven, but events taking place in Hildegard’s brain.

This time there was something different that I had never experienced before. I felt a sense of confusion and I came downstairs to my computer where I’d been working. The document was on the screen with red text where I’d been using track changes, but I couldn’t remember what the document was about. I knew it was important and I felt I should pull myself together and get on with my writing but – I couldn’t.

After a little while I managed to gradually come back to a normal feeling of consciousness. I still had the classical migraine symptoms and I’ve still got them right now. Perhaps they aren’t as bad now as they were the day before yesterday, but they haven’t gone away, there’s still a flashing light and there’s another problem which I didn’t realise at first. I think I went for a walk round the block. I felt better for having taken a little exercise. When I came back into the house, I’m not sure why but it occurred to me that I’d lost some peripheral vision.

So then I went in for the usual self-diagnosis. I Googled migraine. I read about ocular migraine and how it should not be confused with retinal migraine. I can’t remember it all now but ocular migraine probably occurs in the brain (in spite of its name) and I read it may eventually cause some permanent lasting damage. I discovered that if I moved my hand in from the right I couldn’t see it until it was close to the middle of my field of view. So I recognised then I’d lost most of my peripheral vision, and yet I was still confused and I thought to myself that I hadn’t realised my peripheral vision had deteriorated over the years. I hadn’t realised it because of course it hadn’t deteriorated over the years, it had deteriorated in the past half an hour.

I went down to my local, as I do most evenings, and when I arrived there I stood at the bar. I turned to my right and realised there was a person standing beside me who had been completely invisible to me. This was a shock and I realised I had a serious problem and I didn’t know what to do. I didn’t know whether to call an ambulance; I hadn’t got anybody to drive me, I couldn’t drive myself so I wondered what I should do. Luckily the landlord who knows me well saw that I was distressed and he asked if there was something wrong. I was so grateful, I blurted out, I have a migraine and I can’t see properly any more, I shall have to go to the doctor in the morning but I can’t drive. And he said you don’t have to drive, I’ll drive you, just ring me in the morning and I’ll pick you up, so I had another drink (probably a bad idea!).

And that was the end of the first day.

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About partialinsight

One evening I had a stroke. Half my sight vanished overnight. Adapting made me grasp how amazing the visual system and brain are. It also taught me to understand disability completely differently and I'm grateful for the lesson.
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11 Responses to First day

  1. Marion says:

    Losing sight is a scary thing. I wish you well and hope you continue to write and share your experiences.

  2. Reblogged this on purplepersuasion and commented:
    My dad blogs as he comes to terms with sudden partial sight loss – day one

  3. Astrid says:

    I’m so sorry you’re losing your sight. I have been legally blind all my life and graudally lost the vision I had. It is hard coming to terms with vision loss.

  4. Clutter says:

    One of my worst fears is losing my sight. I hope you’ll be helped to protect the remaining sight left to you.

  5. Nyxynyx says:

    My daughter has a rare disease which is robbing her of her sight. It’s heartbreaking, and I can only imagine how scared you must be. Sending best wishes.

  6. Clare Townes says:

    Thanks for this blog. My sister has hemianopia and it’s very helpful to read about personal experiences with it. She fell off her bike last May, hit her head, and had a concussion, which caused the hemianopia. It’s been very tough for her to adjust. Recently she was told by her neuro-opthalmologist that she would not be able to drive again. Also, I have had ocular migraines fairly often, so your blog interests me, too. I wish you the best!

    • Hi Clare

      Thanks for the feedback and so sorry to hear about your sister, I’ve heard that a blow to the head can cause hemianopsia. It must be very hard for her not being able to drive any more.

      Hope your ocular migraines are not too severe, from what I read they must be very unpleasant.

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