I was admitted to hospital with loss of function of my left leg and left arm. The doctors told me that I had had a stroke (but I know now that it was actually an MS “event”) and I was put into a stroke ward. I was 35 years old and the youngest person on the stroke ward. I remember the cleaner coming into the ward and doing a “double take” when she saw me, unable to believe that I was there. Every morning on waking up, I would find something else (of my body) that didn’t work. My leg was getting worse and worse, my arm was getting heavier, my face was getting even droopier, and the doctors couldn’t tell me if I would be able to move my arm and leg or walk ever again. I couldn’t take it all in! I honestly thought my body was just closing down. A day or two later, I woke up one morning and found, to my horror, that I couldn’t see!
I was opening my eyes wide open but couldn’t see anything. The daylight coming through all the windows was unbearably bright and I couldn’t focus on anything, make out any shapes, or recognise anything. It was as though the ward was full of bright light and, although I could hear the familiar sounds, I couldn’t see anything. I remember trying to look at the woman across the ward from me, trying desperately to find her and focus on her but I couldn’t. Eventually, I heard a nurse nearby and told her that I couldn’t see anything. She went off to get a doctor and came back with a doctor who asked me questions and then left. It truly was a shocking, scary moment and I don’t remember anything from that day but I do remember going to sleep that night thinking that I was going to die. I thought that my body really was closing down and that I wasn’t going to wake up again. I actually prayed to God that night and eventually fell asleep. As you might have already guessed, I woke up the following morning alive!
Time passed in hospital and although I couldn’t focus on anything, I could see fuzzy people, and could mostly make out what things were. Later, I was wheeled down to the eye department and had to try to read the eye chart (of letters) on the wall. I could make out some of the letters and read what I could from the vertical column of single letters. This was when I was told that I had hemianopia, which is that I could only see one (right) side of things. I had only seen the last letter of each line of six or seven letters.
I couldn’t see people’s faces properly either. They were out of focus and I could only see the right half. I had to rely on listening to their voice to identify who it was. When I finally left hospital, able to walk a little, I couldn’t see well enough to walk anywhere. Over the following two years, my eyesight gradually got more in focus but it still wasn’t great. After a week at the Royal National Institute for the Blind (RNIB), I learnt that I could not tolerate fluorescent lighting and that some coloured glasses might help with the brightness of the light. This was life changing because I couldn’t bear going outside in the light. I went to an optician who had colour equipment. As soon as I looked at text through the green tint, the lines of text went into lines and I could see it properly. It was amazing.
Eventually, I was able to get coloured glasses that also helped my eyesight, however, as things became clearer, I became more aware of the fact that although I could see the right half of peoples’ faces, I still couldn’t recognise who they were. This prosopagnosia (face blindness) has caused some difficulties. I have lost friends through this because they cannot understand that I don’t recognise them (when I am looking directly at them) or have taken it personally believing that I am ignoring them on purpose. It is such a hard thing to explain and I can’t understand it myself and I live with it!! I can see the person’s right half of their face but cannot recognise it. If there are several people all together, it is even worse and my brain goes into “overload” and I cannot recognise anyone or anything. It is like there is just too much information going into my brain and it can’t process it. However, since starting on this high fat, low carb (HFLC) lifestyle, things have definitely improved.
Improvements in my eyesight and face blindness (prosopagnosia)
This is a difficult thing to measure and monitor but since being on this HFLC lifestyle, I do think that there have been improvements to my vision. Not only has my eyesight improved in general, i.e., my focus is slightly more stable, but I can also see more of the visual field too (the space that you see with your eyes). For example, where before, I could see the last letter of a word, I can now see half of the word.
Likewise, I can see the right half of objects, the right half of scenes/vistas and the right half of peoples’ faces. Isn’t it amazing that my brain, on some level, must be perceiving the whole object but only an exact right half of the information gets through?! On a really good day, I can sometimes see a little of the bottom left corner of a face, i.e., the full chin and jaw. I’m hoping that this will continue to improve as I stick to eating HFLC. Another strange thing is that after my MS event, I couldn’t even visualise someone’s face, and had no visual memory of faces. Now, however, I can sometimes visualise (or visually recall) a face. So, if I’m thinking about someone, I can sometimes see them in my mind. This doesn’t always happen. For example, if I meet more than one person at a time, my brain gets overwhelmed and can’t process all the information. This means I ignore most people if I join a new class until I have met them one to one and my brain has had a chance to process all the information. Similarly, before, when I went to new places, I wasn’t able to record it in my mind and indeed would not recognise it if I returned to the same place at a later date. Now, I can often remember and visualise places and can often recognise them when I return.
Finally, I have to admit that, despite it being a huge irritation at times, it can also be hilarious! I have walked past people who I’m looking for, have taken someone’s arm thinking it was my friend but it wasn’t, have been unable to find things that just happened to be slightly to the left. People ask “why can’t you just turn your head round and see the other side then?” As obvious and completely rational as that sounds, it doesn’t work! Obviously, if I read the letters “rple”, I know that there’s something missing and can then make my eyes move over to the left to see “purple”. However, for other things, it’s not that obvious and I forget all about the left side’s existence (hemi neglect). I will talk about this in more detail next time.
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