Making others aware of my condition

Hi. I have a leftHomonymous hemianopsia as a result of my craniotomy to remove my AVM. .I have adapted well since my surgery in september of 2012. Driving is not an option for me at this time because I am dealing with intermittent blurriness that no one has been able to figure out. My work is in Manhattan and I commute via public transportation every day for an hour each way. This involves A train, a transfer to a subway and about a 10 minute walk through the city streets. The only problem I have is when someone is unaware of my condition and expects me to adjust for them. For example, the other day I had a close call when a truck pulled onto the sidewalk and almost hit me. He cut in front of me and just assumed I would adjust. It was scary to say the least. Some lady screamed and another bystander thought that I was on drugs or trying to kill myself. The truth is that I have adjusted so well that it is impossible to tell that I have this disability by just observing me. If Believe it or not if I bump into someone it is usually their fault and they are quick to apologize. I am constantly moving my head and my eyes. If I bump into a person there is a good chance that they were not there a 1/2 second ago. They were probably running to catch a cab or a train etc.
Social situations are awful. I have a tough time recognizing faces. I know that I unintentionally snub people all the time. How many times have I not returned a wave from someone who has no idea of my condition. Not to mention all of the unreciprocated handshakes. If someone puts out their right hand it is not in my field of vision. (I have gotten better at always checking for it). It has been brought to my attention on several occasions that I am anti-social because of this. In fact, the failure to return a handshake has cost me business on at least one occasion. Sometimes I wish I had a tattoo on my fore head that alerted the world of my condition. It is very difficult to describe how we see the world to our loved ones not to mention explaining it to people who think you might be on drugs because you walk in front of trucks. Half of this post is venting the other half is looking for advice. Thanks for listening!!

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Hi Mark. Sounds like we have the same vision, although you are new to this, and I have had a left Homonymous hemianopia for over 50 years. I had an AVM bleed and craniotomy when I was 9 in 1959. I have spent my life appearing “normal” to everyone. My family eventually forgot about the vision and it took me years to come out and say to them, hey do you remember I had brain surgery when I was a kid? No one but you and me and others with a left HH know how it feels to be knocking people over, walking into anything on the left, misplacing things that are right in front of you, not driving, hating crowds, not enjoying too many people at one time. I forget faces, and have been accused of ignoring people. Only we know that we don’t see black on that side, that we see nothing on that side. I also forget sometimes that I even have a left side or that there is more world over there. Along with that I have no binocular vision, no 3d, trip on curbs.

Now for the best part, I now have a guide dog, who is my left side. I was accepted to Southeastern Guide Dog School here in FL. I spent a month there a couple of years ago. I love this dog so much.

I hope I can answer some questions for you. Beans

Mark I get it. I’ve got left HH. It’s almost exhausting to have to constantly look to the left to make sure there’s not something or someone there. Grocery stores and department stores are the worst. They have to cover every square inch of floor space! I usually do fairly well but inevitably I bump into someone. All I can do is apologize. There’s no point saying I have no vision on that side. Beans…YES! It’s impossible to explain to people that it’s not like seeing black. There’s just nothing!

Hello Mark, my husband had an AVM bleed in April 2011 and has right sided HH. I must say I am with my husband mostly all the time, and I am his look out. I am so glad that someone screamed and made you aware of the truck and you were not hurt! I am beginning to understand why 2 weeks ago Rick walked right by in the grocery store when we spilt up for a minute! He did not see me standing there at ALL!
Please take care!

Thanks for the replies and Happy holidays! I’m thinking of using an ID cane for when I’m commuting in the city by myself. Has anyone had any experience with this type of cane? Also, in New York state it is illegal to use a cane unless you are legally blind. Does anyone know if these laws apply to ID canes or just long white canes? The 2 close calls I had commuting where when cars assumed I saw then and would adjust. in NYC cars will turn onto the sidewalk to pull into a parking garage. It was this exact situation with both my close calls. If I had a smaller fold up white (ID) cane I could have avoided both instances. I am having a VERY tough time with admitting I that I may need a cane, but the city streets are BUSY. Thoughts?

hi mark

I used a white cane for a few months in preparing to go to guide dog school. It was a requirement. Previously, I had always been told I was not legally blind and could not use a white cane unless I was legally blind. More recently, I was told I am legally blind, was accepted to Southeastern Guide Dog School here In Florida, and have the best dog in the world. I do not use a cane now. I do not know what an ID cane is, only the long fold up type which is white. I know you are not allowed to use a long white cane if you are not legally blind. If you need a doctor to state you are legally blind, you need to change doctors. I have a left Homonymous hemianopsia like you. I come from NYC originally, and it is unsafe for you to be without a long cane. You have gone through enough and are alive. You don’t need an ignorant NY driver to run into you.


Hi Mark,
I can only imagine how it feels to have Homonymous hemianopsia. I have been trying to imagine it for the past 4 months. I was diagnosed with my AVM in September 2013 and I'm a looking at treatment options. In my most down hours I've imagined not being able to work or read. Can you tell me are you able to read? I realize my loss could be to my right visual field and they say that is harder on reading. Thank you for your post. It sounds like you are doing things that I thought might be impossible for me.


Im sorry that you are going through this. It has been my experience that everybody handles their hemianopia differently. I have been told by doctors that I have adapted extremely well and that others find this condition to be completely debilitating. I find it hard to believe that anyone would find this to be that debilitating. The truth is that you kind of get used to it. I have made peace with my blind side and I get better everyday at compensating for it. I find that reading is easiest on an iPad. I can move the text on the screen and zoom in as necessary. Facial recognition is an issue for me. I feel a little awkward in some social situations. I often wonder if I missed a friendly wave or unintentionally snubbed someone. I'm getting over that fast, though. I have been warned that if I choose to live my life this way that I am destined to have an accident at some point. I am ok with that. I stick to familiar routes and move my eyes and head constantly. Tawnie, I promise you that a hemianopsia is not the end of the world. You will adapt. And if you dont adapt at first on your own there is therapy to help you. You will remain in my thoughts and prayers. Please stay in touch

Hi Mark,

My HH is on the right hand side so the exact opposite to you. I use a white cane in an effort to make people aware that I have a vision issue. Beans, they must be a bit more relaxed in Australia in relation to white canes as even though I am not legally blind I received one from Vision Australia after I was assessed. Does the cane help? Sometimes. People either give me more room, freeze as they know the cane means something but they are not sure how to react, have target acquisition syndrome - they actually walk straight at you or they are oblivious. If the latter is the case they score the cane in the ribs as they walk past, I can only see them up to a particular point so when they are past that point I cannot gauge where they are. It does help of public transport. I only use it in crowd situations. I carry it with me whenever I am out but on the trails there is little traffic and I rarely need to give people a heads up. Unless I am negotiating stairs, no one could tell that I have a vision impairment.

I am incredibly impressed that you are still working and in Manhattan.

I know what you mean about the tattoo but I would rather just explain it to people. It's a talking point and they may gain an understanding as to why you do not react to visual cues that you cannot see.

Hang in there.

Thank you for the support I really appreciate it. I’ve been so scared about so many things the last 4 months. Please be careful and stay safe. You definitely are an inspiration. I have an appointment to talk to Dr. Spetzler next week about surgery. Did you have embolization?

My Avm was embolized in may of 2012 and my surgery was in September of 2012. In my case surgery was clearly my best option. I was 38 years old and my AVM was in a low risk area. My doctor said my main risk was vision loss. The risks of leaving it in were greater than removing it. It was too big to to try a less invasive way of getting rid of it. Besides my initial bleed had pretty much left me 1/2 blind and the Dr didn’t think the surgery could make it much worse. Get a Dr. You can trust and then do just that… Trust him/her. I know you are scared…so was I…very scared. Even if you need surgery (recovery was not that bad) you are going to be fine. In the future this will be behind you and you will live life to the fullest. This does not have to define you. Good luck, god bless and stay in touch.

I think you’re about a year younger than me. I have not had a bleed. The doctor I’m going to see is recommending embolization and surgery. Do you remember the size your AVM was? You have really made me feel like I can do this. Thank you for that. Have a goodnight

Don't be so hard on yourself Mark. We are dealing with enough jacked up stuff as it is. You sound like a perfectly nice guy. Did you call the lost business, to tell them that your sorry and explain what happened? Even if it's a situation that happened some time ago, it might help.

Try to be especially nice when you can. Your already doing your best to scan the environment to avoid missing things but hey, even when people are not affected by these conditions or symptoms, these sort of mistakes happen.

I have been accused of being aloof too but not because I have a visual field loss, just because sometimes I'm uncomfortable.

Hi Mark, I am going through the same thing. I accidentally bump into people on my left side. I feel like wearing a sign on my head saying I have left peripheral vision loss so What is your excuse for bumping into me, haha. I have not started driving yet but hoping to be able to soon. Did you receive some driving assistance or training? I feel like I just need to practice turning my head to the left.It sounds like there is some hope for me since you can drive. I was terrified that I was not going to be able to drive anymore, that would be a nightmare for me.

I had a hemorrhage and hoping to have surgery soon. Did your vision or any of your symptoms get better after your surgery? I am just trying to see what I am in for.

I wish you the best,

Totally know how you feel Mark. Last summer I accidentally elbowed a woman in the face as I was heaving my knapsack on in the subway platform.. I apologized profusely and quickly explained that it was an accident and that I'm blind on my left side. It was embarrassing to say the least.. now I wait to put on my bag on when I know for sure that there's absolutely no one around me.. it gets easier though. I'm getting a lot better at scanning and also listening on my left side for footsteps.. your brain finds ways for compensating!

Hi Mark: i have been a member here for a long time, but I don’t spend a lot of time here anymore. But I read your post about having a left homonymous hemianopia, a spokesman result of the AVM. I had the same happen to me, but it was in 1959 when I eas 8 years old. I also lived in NY near the city, my AVM bled, and I had seizures, and lost vision in spots previos to the AVM bleed and craniotomy. I was told the vision could come back, but it did not. I got what is now called bulying because I went back to school bald. My large family neverreally understood my vision or loss of it. Now they don’t even remember much about it.

I did well without rehab, without high school even knowing, actually with only a few people who knew. I know they uaed to wonder about me and why I was walking into everything and people. I was always falling. I was a kid, though. I think it must be easier to have this loss of vision as a child rather than as an adult. I used to think everyone had the same vision as me, I did not. Know it was both eyes until I was much older. I know how lucky I am to be alive after brain surgery in 1959. I became a legal secretary, then a paralegal. I an smart, and with hard work, learned to do what I needed to, and succeeded. You cannot see a lot of peoples’ disabilities. I had to learn to not explain to anyone why I did anything they may have thought of as odd. It is not their business or their life. I learned to not care what anyone said or thought about me. It took a long time to get there, but it feels so much better. You and me and everyone here should be proud of keeping on geting up and trying again.I wish I could tell you it gets easier as you get older, but now I have cararacts and till have small seizures which show up as bright lights in my sighted area. Anyway, you have much to lookforward to, so dom’t get impatient, angry, or mad at stupid people who don’t know whT they are saying. Be happy and stay well.


into things and people.