Homonymous Hemianopia. Hard to say, hard to explain, sometimes hard to live with.
What is it?.
HH is a blindness in half (hemisphere), or quarter in which case it’s called a quadranopia, of both eyes caused by damage to the brain.
The eyes are not the problem, they work fine. The way I explain it sometimes is “hardware fine, software stuffed,” or as has been explained to me some strokes take out bridges, some strokes take out the city. In my case the stroke took out the bridges.
The eye sees a stereo image, a left and right image, in both eyes. The information from the right image is passed to the left occipital lobe for processing and left to right. My stroke prevented the visual information from getting to the left occipital lobe so I do not receive visual information from my right visual field. The stroke bombed the bridge, everything works but the visual information can’t get to the city, my occipital lobe, so I can not see it.
I get questions when trying to explain what HH is, like “are you blind in your right eye Adrian?” My answer is no, but I am in both eyes on the right side. In fact a person who is blind in one eye sees more than a person with HH. Best way I can explain it when talking to someone is to stand opposite them and tell them to draw an imaginary texta line down the middle of their face. I see nothing on the right side of that line.
Pictures say a thousand words. I’ve borrowed the traffic lights photo from a booklet called “Neurological Vision Loss A Guide for People With a Homonymous Hemianopia,” produced by Royal Society for the Blind.
The other two images are the results of a visual field test I did shortly after my stroke.
What do they mean? Well, what white van? That image is exactly how I see. I do not see things right in front of me. The field of vision tests are self explanatory too. The tests are of both eyes. All that black is not good. Some hemi’s are mild. Mine is dense, or complete, or textbook as I was told. At best I am aware of movement on my right when, for example, someone is wearing light colours and I see on my right better at night.
If there is no improvement in a hemi after the first 6-8 weeks further improvement is unlikely. Mine has been the same from day one.
Pluses and minuses.
Unlike walking with a limp or having a ‘mongy arm’ and hand that don’t work very well, a hemi isn’t physically inconvenient day to day. You learn very quickly to scan and adapt, at least I did, because I got sick of belting my head on a particular cupboard at home I didn’t see. You don’t need to wear an AFO (ankle-foot orthoses) for it, you don’t need botox injections for it, you don’t need to do hours of rehab for it, you don’t need to see doctors about it or take pills for it. It can’t, in my case, get worse and is unlikely to improve. I knew the hemi was the thing about my stroke that would bite me on the bum. I quickly learned to walk again and was a model patient in rehab for both walking and my arm and hand, doing all the exercises and more that was asked of me. But I knew the hemi just was and there was no exercises I could do to improve that. If I didn’t tell you I had a hemi you’d probably never notice. My six year old daughter is just starting to get her head around it and people including my best mate who is a stroke neurologist sometimes forget about it.
But it means I can’t drive.
The least inconvenient and least noticeable part of my stroke has the greatest impact on my life and is the greatest inconvenience. Not having a licence affects my earning capacity, ability to compete in the job market and my independence. Bit of a bastard really. I don’t like its impact on my family. Having had a licence for 17 years I had to argue to hand it back. The RTA, (I’m in NSW), told me they needed a letter from my doctor, I couldn’t just hand it in. I said that seeing you won’t take it back I’ll just drive there and get it.
“Oh no, you can’t do that.”
And that was my point, but they were going to make me pay a doctor to write a letter when I was standing there offering to hand it in. Not an easy thing to do considering its implications and instead of being understanding and pleasant they had to assess me. Six years later it still sticks in my craw. If you take nothing else away from what I say remember this, a licence is a privilege not a right. Treat it like gold, as life without one is hard.
Without the hemi, my stroke left me mildly disabled but still able to get back my life pre-stroke and drive. With the hemi it has really thrown a spanner in the works. And I now only drive on my sister’s farm and dodgem cars.
Another effect of a hemi is that people think I’m rude as I walk straight past them, or my neighbour who sat next to me on the train one day and after two stations pinched me and asked if I was going to say hello.
Trains are great alone time and I spend a lot of time on trains these days. I always sit on the left, put my earphones in, look out the window or read a book and even on a packed train none of you are there and I have a pleasant journey. Same with planes.
Because I can’t drive I do lots of walking, which can only be a good thing. I’d like to ride a pushbike to expand my horizons a little further and make a trip to the shops that bit quicker, physically I reckon I’m capable, but I just don’t think it is safe to do it.
Not driving has a financial impact and has brought my career prospects to a grinding halt. I am a horticulturist, a job that needs you to be able to drive. I have a job, for which I am very thankful, but I am also ambitious. I have applied for jobs where I have been told I am a fantastic candidate, or have great skills and experience, “but we can’t interview you because you don’t have a licence”. I may as well be told I can’t be interviewed because I don’t have blue eyes or am left handed, a couple of other things I have absolutely no control over. I keep banging my head up against this and it is hard not to let it get you down. My stroke costs me money in pills and splints and appointments and all the stuff that goes with it but it also costs me money by not enabling me to earn more. Stroke really is the gift that keeps on giving. My hemi is the opportunity cost. It is probably this more than anything else I dislike the most.
I have to think about where I sit at meals so that everyone is on my left so I can see them. When I go out in crowds with someone I keep them on my right so they stop me walking in to people. Movies aren’t good and there is no point in a wide screen TV for us. Watching fast moving things on TV or going to a rugby game is a bit frustrating because as soon as the ball moves out of sight I lose the action until I find it again. When I see bands I always stand at the front and on the right so I see everything. I once saw a band and didn’t realize there were two guitarists. Reading is different. It’s just different. As I scan across the page e a c h l e t t e r a p p e a r s t o m e. Looking at the start of a word I can’t see the end of it and it slows you up.
And I really don’t like that my daughter Eve has to walk home from school with me in the rain because we have no choice. But because we have no choice we’ve done a lot of walking together and spent lots of time walking and talking and looking and I’ve always felt that’s the good part of it and enjoyable. It has taken away but it has also given. Having hemi has also made me a better photographer and I like that. I still use film and I really have to look at what is in the viewfinder before I press the shutter. I learnt that early when I had some photos developed and was surprised by what I’d missed because of what I was looking at. Or wasn’t looking at. Now I compose an image much better because I look more carefully. To go with the photography, I like bird watching. Bit hard when you can’t see half the bush. My best mate and I were on a four day bush walk, we were sitting on a rock enjoying the view and He said, “what sort of bird is that?” and I said “what bird?” it was right in front of us. So now I’m learning to identify birds by their calls so I know what to look for. Losing half my sight has paradoxically made me a better bird watcher.
I hope you have a better insight, boom-tish.
Hard to say but just call it hemi. Hard to explain but I hope I explained it and if I didn’t I know a good neuro who can. Sometimes it’s undoubtedly hard to live with but compared to lots of other effects of stroke the effects of them are pretty benign. I can still walk, I can still talk.
As I said it has taken away, boy has it taken away. I was and still am fiercely independent and now rely on others, but it has also given. I would not swap for a moment all the time it has given me walking with Eve in her formative years. It is a pretty high price to pay but the dividends are life long.