This is a very strange one! My hemianopia means that I cannot see (in my case) the left side but hemi-neglect is that I “neglect” that side. What? Yes, I actually forget that the left side exists and it somehow doesn’t really exist to me. As crazy as this sounds, I forget that the left side of my body is there and tend to ignore it. Because my left leg and arm don’t automatically move in coordination with my right side, I have to pay attention to them, especially, for example, when walking. It takes a lot of concentration to move my left leg in time with my right leg to be able to look like I’m walking “normally”. Likewise I have to concentrate on my left arm, to swing it in coordination with my right leg. That took a LOT of practice! This can all go horribly wrong at times if I’m distracted, or am tired and can’t concentrate. It can be challenging to walk whilst having a conversation! This is when I forget to lift my left leg and trip!
I also need to pay attention to make sure that my left side is dressed appropriately before I leave the house in the morning. Do I have my left shoe on? Is my left arm IN the sleeve? Have I brushed the left side of my hair? These are the things that I sometimes forget…even though my right side IS dressed. I try to always focus on the left side first but at times, I still forget! But it’s not only the left side of my body that I “neglect”, it also happens with the left side of my visual field, i.e., what I can see.
It is really difficult to move my eyes, head, legs, arms, or body towards the left. For example, if I’m reading, it’s exhausting moving my eyes to the beginning of each new line of text, i.e., the left, as I read…or write. This has improved over the years but I used to have a bright red ribbon down the left side of the page so that my eyes would eventually find the left side! Nowadays, I use a marker (long strip of card), which I can just move down a line after reading it, and this helps too. Also, if I have to physically move to the left, e.g., to avoid walking into something, I often have to stop because my body just refuses to move to the left. Once I stop, I can force myself to move left through sheer determination and concentration. So, how does this affect me in my normal daily life?
This can be a challenge in many ways. Crossing the road can be difficult because I cannot depend on my eyes/ brain to acknowledge the left side so I have to find a pedestrian crossing. I have learnt over the years not to rely on my hearing in this situation either because, on a few occasions, I have been in a rush, was bored of waiting for the traffic lights to change, couldn’t hear any cars coming so stepped out to cross the road…in front of a cyclist! On the few times that this has happened, the cyclist has swerved, shouted abuse at me and I have shouted apologies at them. Even hearing something from the left just doesn’t register the same in my brain. People sometimes come from my left side and then tap me on my left arm. This always gives me the fright of my life because I haven’t seen, heard, or noticed them approaching me. My fright at least gives them a laugh!
Another funny thing that happens fairly often is when someone waves at me when they are walking towards me. Bear in mind here that I also don’t recognise faces (prosopagnosia) so I have no idea who the person is. Most people wave with their right hand, which, if they are walking towards me, is to the left of them. Therefore, I don’t see them waving but often notice that the person is staring at me. I then smile as I would to a total stranger, and am surprised when the person suddenly stops in front of me and speaks. On hearing their voice, I usually know who it is.
If you know of anyone with hemi-neglect, hemianopia, prosopagnosia, stroke symptoms, left/ right -sided weakness, or anything similar, please let me know or tell them about this blog. I would love to hear from others who go through this or have had similar experiences.
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