Life’s Not Over It Just Looks Different

Originally presented May 16, 2022

by Christopher Gordon

Public speaker and author Christopher Gordon shares the powerful insight that inspired him to continue living his life to the fullest despite sudden vision loss. Since losing his eyesight, Christopher has changed careers, written and self-published two books, and became a popular speaker and advocate for people with vision loss. He delivers an inspiring message for overcoming life changing events and experiencing life, rather than just merely living it.

Transcript

Christopher

Actually the first thing I want to do- I’m just gonna put it out there. I don’t know how many of you have ever had a dream that was so big, that it was all you could think about and kind of all consuming. I realize that this is a little harder to do by zoom, asking for a show of hands or people to pop up. Sometimes if you’re anything like me, who gets narrowly focused on things. When I was 12 years old, I decided that I wanted to be in broadcasting. And it was all that I ever wanted. It was all I could think about. It was all consuming.

And, all through junior high school, I was trying to get things arranged so that we could take tours of radio stations or TV stations, and I had the help of the school guidance counselor. And, when it was time to move into high school from middle school, she knew that I wanted to be in broadcasting, so she actually hooked me up with a high school that had a broadcast program as one of his program offerings in the school. So, I was able to spend some time in a television studio and radio control rooms, while doing my high school courses, all my English science, math, etc. It was all I wanted to do, all I focused on.

One year out of high school. I started working in television, and was working for a television station in Winnipeg, Manitoba, Canada. And I was on my way, my career was there, I was hitting my goal. I went from Winnipeg to Regina, Saskatchewan, one province over, and then from Regina, I went over to Toronto, Canada, down in Ontario, north of Lake Ontario. I was enjoying this career that I wanted to be in and that I always wanted to be in. And everything was going really well living in Toronto. I had my dream career, I had a great condo, I was married, life was good.

And then in 2005, I had to go in for brain surgery, because I have a condition called hydrocephalus or water on the brain. And with the water on the brain, I have a shunt that goes through my head to my chest to drain fluids away from my brain because the body is producing too much fluid and it can’t drain on its own. So they put in a shunt to drain it away. And I’ve had that since I was three months old. They’ve changed it periodically, because as one of my surgeons so eloquently put it once, “it’s plumbing, it breaks down.” So, they’ve had to go in and change the shunt periodically. And they hadn’t changed it in a very long time. In fact, I think I had it in my body for about 21 years, until it finally failed in 2001.

So, they went in, they changed it everything was good, carry on. In 2005 the shunt failed again. So, I had to go in for surgery, but this time, it was a little more urgent. I was actually not very conscious. I was in and out of consciousness. My wife got me to the hospital and everything else, because I wasn’t really with it at all. I went in for this emergency surgery, they went in, revised the shunt. I went into recovery, but I didn’t recover quite as quickly as I thought I would. So, they had to go in and do another shunt revision within 24 hours. When I finally woke up from that second shunt revision, all I could see was light and shadow. So, I had gone from having almost perfect eyesight and almost perfect color vision before the surgery, before going into the hospital. And I woke up from the operation only able to see light and shadow and only shades of gray. That’s all I could see.

So, they did some investigating and they found that the pressure had built up in my brain and squeezed the blood vessels that feed the occipital lobe of my brain, which is the part that processes eyesight. So the doctor, after reviewing the results and seeing what had gone wrong, said, “well, you’re probably going to get some of your sight back, but we don’t know how much and we don’t know how long it’s gonna take.” He said we’ll give it about a year and we’ll see what happens.

So, in my head, I thought I was going to be the guy that had the miraculous recovery, right? He was blind for a year and then he got his sight back, and wow, what a story – books and movies and whatever. That was a good fantasy. It was probably about six or seven months into my recovery, and I was getting some of my sight back through that period of time. But about six or seven months into my recovery, I went for a follow up visit with the neurosurgeon, and then a neuro-ophthalmologist. And both of them said, yeah, you’ve probably got about all the recovery you’re gonna get. And I’m like, “Well, wait a minute, hang on, it hasn’t been a year.” You told me I get a year to see how much I get. And they said, no you’ve probably got all you’re gonna get.

So, that was pretty heartbreaking news. I will be very honest with you that in that, not only that seven months, but actually for about a year. Actually, no, maybe closer to two years after that surgery and after waking up seeing only light and shadow. Even though I was getting some of my vision back, which was good. I went through all five stages of depression. I had the bargaining, the anger, the denial, the depression, and the acceptance. But it wasn’t a linear process. It didn’t go all nice and straight. You know, some days, I’d have a great day, some days I’d feel really good. And other days, I would be absolutely in just the depths of despair. And thinking, Why me, what’s going on? Why did this have to happen, you know, life is ruined. All of those things. And I went through this whole grieving process, grieving the person that I was and the life that I had.

And like I said, that took about two years, maybe even a little longer. And I did get a little bit more of my vision back than what the doctors had originally said, but it finally leveled out after about two years and I’m considered legally blind. So, my acuity checks in when I go to the doctor, I check in at about 20 over 200 or 20 over 400, depending on the day, depending on how good my eyes are that day, or how well my brain is processing what it’s being given.

One of the funny things about it, that I thought, or that I’ve looked back and thought, wow, that was really weird. Nobody actually gave me a diagnosis. They just kind of said, yeah, okay, so you’ve lost your sight. They said, go to CNIB, Canadian National Institute for the Blind, they’ll help you out. Nobody really gave me a diagnosis or told me anything about it – it was really weird. And the other thing that I know that I thought about later that the hospital didn’t do, none of the doctors did, was ask me about my mental health. Because here I am going through all this stuff with depression and anger and bargaining and, and nobody in the medical system seemed to think about, oh, yeah, this guy’s got to deal with the fact that he just lost his eyesight rather suddenly. Those were a couple of things that I learned from it.

Finally, I was given, sort of, a diagnosis. It was a few months after getting out of the hospital. The insurance company who was covering my short term disability, and then my long term disability from my workplace. They wanted new eye results, so I went to see my optometrist who had been seeing me, you know, pre-sight loss. So I went to see him afterwards because I knew that he’d have the best comparison, and he said, “you have cortical blindness.” I’d never heard of that before. I had to go look that up. Turns out that that’s a fairly old, outdated term that he was using, more appropriately now most people call it cortical visual impairment or CVI. Some people call it cerebral visual impairment. But still, even after I was given that diagnosis by the optometrist, and I’m living life as a person with sight loss, when I went to CNIB and I got O&M training. The low-vision specialist helped me find a magnifier that worked with the usable vision that I had, or have.

I got assistive technology training to help you get set up with Zoom Text and a CCTV for reading text, and I did all of those things. Oh, yes, and Independent Living came to see me as well, they helped me put Bumpons on all my appliances, so that I could still do cooking and cleaning and do all of those things myself, using the appliances, just by putting Bumponson some of the buttons that I use most often.

One of my favorite stories is on the Independent Living help, we put the little Bumpons so that I could feel the buttons on the microwave. So, we put one on the one-minute button, because that’s an important button that I was using fairly regularly. And we also put one on the popcorn button, because that’s an important button, too. So, these are the kinds of things that CNIB helped me do. And they gave me all that kind of training. And that was all good, because it helped me sort of start to live life again, as a vision impaired person.

Still, even at CNIB, even though they had the results from the eye doctor and all that, they never said what the condition was either. So I only heard that term, cortical blindness, once and it wasn’t until many years later that I learned about CVI. And then I actually learned about Dr. Christine Roman-Lantzy’s books on CVI and cortical visual impairment. When I read her books, it was like, wow, this woman gets me, she understands.

As I was reading through her book on CVI, and the 10 characteristics, and thinking, “yeah, I know what that is. Yeah, that’s how I see the world. Yeah.” And it all started to make sense. So that was really great. But again, I kind of found those things all on my own. Nobody really pointed me in the right direction, which was kind of weird.

But I wanted to get back to living as close as I could to the life I had before. And there were a couple of reasons for that. One, I had really great support from friends and family, who really rallied around me and helped me out. And then I have this motto that I had kind of adopted prior to my sight loss. So, before I ever knew that I would need it. I had this motto that I am on this planet for fun. That’s the way I liked to live my life before. And even through the depression and all of the stages that I had to go through, I think that was actually the thing that kept me moving forward, along with the help from friends and family.

But, I think having that motto, and wanting to get back to that stage, played a big role in getting to where I wanted to be, as far as having as much of my life as I could from before.

Now, I couldn’t go back to the television business, because television is a very eyesight-dependent business. And in my state of legal blindness, 20/ 2200, 20/2400, I can’t see the screen well enough to see who the actors are on the screen. I can’t read the closed captioning. If I’m watching a hockey game, I can’t look at the score up in the upper right corner or left corner of the screen to see where it is. I have to get right up to the screen to see it. And so, I couldn’t be in the television business anymore. So, I had to find a new career.

I’d always had an interest in the world of finance and investing and personal finance. So, I started studying courses to get into that. Once I took one course, then I thought okay, well, I’m gonna take another course in that industry. Once I’d taken that second course, I thought, I’m going to give this industry a try. I’m going to see what happens. And, so I went to one place, and it didn’t quite work out. They weren’t very good at helping me with tech support to put the software that I needed on my computer. They weren’t very supportive, just in general, really. So, I left that agency, but I landed in another agency where I was working in an inbound call center for a discount brokerage. I was buying and selling investments for clients, and it was a really great gig. I loved that gig. It was so much fun. And I found out that a call center is actually a really good place for a person with sight loss to work. Because once you kind of figure out your workstation you know your program that you’re working with your computer and all of that. If you don’t have to get up and move around and find people. Finding people is one of the biggest nightmares in my life. Trying to find a person because I don’t see faces very well, that’s one of the characteristics of cortical visual impairment. So, finding people in a huge environment where a call center had 200 people, finding any one of my colleagues at any point, it was a really tough gig. So, it was good to just sort of stay at my workstation and do my thing.

And I really enjoyed that. I was there for three years, until I moved to Calgary. I had quit the job in Toronto and moved to Calgary, at the foot of the Rocky Mountains, which I love being out here, so it was an easy move. But, I do have to share one story from my experience with the call center, though, that was kind of fun. So, they set me up. They were actually fabulous. This place was actually amazing. When I interviewed for the job, did the interview, and I was kind of in a blurting mood that day. And I told them, you know, I’m a guy with sight loss, and I took my magnifying glass and I flipped it on the table. And it just kind of left it there for the entire duration of the interview. It never became a focal point of conversation. But, it just kind of left it there as the elephant in the room.

And then, after the interview was done, a couple of weeks later, they called me, they said, “yeah, we want to bring you on.” They said, we’d like you to come in and have a little meeting before you start. We want to have a meeting with you and one of our managers to talk about the accommodations that you’re going to need. And, so I said, “okay, great.” So, I went into this meeting, and I was kind of expecting a little bit of pushback in the meeting. So, I went in and I said, Well, I use ZoomText software on my computer and a large letter keyboard and a CCTV to read print.  I was expecting pushback on the cost of some of these things. I said, “well, if you can’t get the CCTV or can’t get ZoomText, I can magnify or enlarge the print on the screen.” “If you can’t get the CCTV, I can use my magnifying glass” and the guy said, no, no, no. He stopped me and he said, “Tell me what you need. And we’ll make it happen.” I was blown away.

But I told him everything I needed. I told him where to get it, what shop to go purchase it at, because it was a shop in Toronto that sold this stuff. And when I showed up there to work it was there. It was all there on the first day. So, it was really amazing. And so I had a great three years with that company. I would have stayed longer if I hadn’t moved to Calgary. But the draw to move close to the Rocky Mountains was something I just couldn’t pass up.

So, I left Toronto and moved to Calgary, Alberta, where I’m only an hour away from the Rocky Mountains. I don’t get to drive out there, but I do get to see the mountains and my wife drives out there. She drives and she’ll get us out there. She loves the mountains as much as I do. It’s an easy sell to say, hey, you want to go to the mountains this weekend? Sure. Let’s do it. I know I’ve been rambling on for a few minutes here. I’m going to stop for a moment. Just to see if there’s been any questions. I think I’ve seen some stuff pop up in the chat and see where we’re at so far.

Maggie

A question did come in from Nadia. What was the name of the book or author that you had mentioned?

Christopher

Oh, yeah. The book on CVI. She’s actually done three different books. I can’t remember the exact titles right now. But Cortical Visual Impairment is the main title of the book. And the author’s name is Dr. Christine Roman-Lantzy. I’m sorry, I showed off. I showed off my Canadianism there, I said zed.

Maggie

Dr. Roman also joins our tele-support group for parents of children with CVI frequently. So, if that’s an area that you want to learn more about, too, we can also connect about that.

Christopher

Oh, yeah, if you get a chance to see or talk to Dr. Roman and hear her speak, that lady is amazing. I am such a big fan of her. Reading her books and finding out that she actually knew about this, and knowing how much she knows about CVI and how she made this basically her life and career has been amazing. When I got to meet her back in 2019, she came and did a two-day conference in Calgary here. I was just an absolute fanboy in her presence, just like oh my gosh, I am not worthy. She was just so amazing to sit and be able to listen to her and talk to her, and ask her questions. It was amazing. So if you get a chance, you should absolutely take advantage of that and hear her.

Maggie

Wonderful. Does anyone else have any other questions that you want to enter in the chat or feel free to unmute yourself and ask?

Christopher

That’s okay. No pressure. So, life after sight loss – I’m legally blind. It is what it is. And you know, I get around pretty well. I don’t always use my white cane. I do carry an identification cane when I’m out and about on my own. But, I don’t typically carry my cane when I’m out with friends or family. I like to call it hitching a ride on their eyes. I let them do all the seeing for me, and they can just tell me what’s going on.

But, even the cane, oh gosh, I was given a white cane. I was given an identification cane when I first saw CNIB Back in, early or late 2005, not long after my sight loss. I used it for a while, and then I when I thought I had sort of recovered enough of my sight that I could get around pretty well without tripping over things or bumping into things, I thought, I don’t really need the cane, I’m going to put it away. So I did. I put it away for about probably about a decade, maybe 12 years. I put it away. It was always in my bag, I carried a little shoulder bag with my magnifier and a few other things in it. I like to call them all by blind toys. I would put the cane in my bag, but putting my cane in my bag is kind of like going out on a boat and having the lifejacket sit on the seat of the boat. Right? It’s not on your body. It’s kind of how useful it was for me.

But, I always kind of thought, well, if people don’t really know about my vision, they don’t need to know. If I need them to know I’ll tell them. That’s kind of the way I looked at it. And I tried to sort of get through as much as I could. Not letting people know. Until about four years ago now. Four years ago, I was out for a walk near the place where I work and there was this building that had been under construction for quite a while. And I was walking up the sidewalk, everything was good. I walked up the sidewalk and crossed the back lane. As I got across the back lane and went to step back on the sidewalk, I felt something kind of soft and squishy under my foot. And before I could stop myself from taking the next step, I realized that I was stepping into wet cement. Once I realized it was wet cement, I quickly stepped off, brushing my feet off on the grass on the Boulevard. And there were three construction workers standing nearby, who should have been watching and didn’t, and missed me until I stepped in their work. And so they were absolutely furious. And they were dropping all kinds of colorful language about the fact that I had ruined their work. But they didn’t yell at me, personally, they were just yelling in general, because they realized they probably realized that they should have been watching more, or that they should have had a barrier there.

But, that was kind of a sign for me at that moment because when I got back to the office, and I was thinking about it, and I was telling our O&M specialists about it and she said well, yeah, but the cane wouldn’t have helped you detect the wet cement because it’s an ID cane, it’s not touching the ground? And I said yeah, but the the ID cane, you know, it probably would have caught the corner of the eye of at least one of the construction workers to go, “Hey, wait, we’ve got to stop that guy.” So, it was kind of in that moment that I thought to myself, you know, if a client came to me and said, “Hey, Christopher, I had this happen, I stepped in wet cement. My question would have been, “where was your cane”? So I thought, oh, okay, doctor, take thine own medicine. I’m not a doctor, but I have to take a little of my own medicine and so I started using my cane again.

And I’ve been using it now pretty consistently, like I said, anytime I’m out on my own. It’s been good to have it with me. It’s actually been really good through the pandemic. Because in the pandemic, when they started putting arrows on the floor, or they started having notes on the wall, or on the doors to say, don’t come in this door, go in that door over there. If I miss these things, and I go in the wrong door, or if I missed the arrows because the color contrast wasn’t very good. People got a lot more forgiving when you’re carrying the cane, then if you’re not carrying it. 

Case in point, I was in a grocery store one day. Sort of an early days of the pandemic when we were allowed to go shopping, but not much else. I did my grocery shopping, I put some stuff on the conveyor, and the lady snapped. She’s like, sir, you need to take your stuff off that conveyor until this person ahead of you is done so I can wipe everything down before you start. Okay, fine. I sheepishly put my stuff back in the basket. And then when it was my turn, I went up, put my stuff on, she’s checking me through, the guy behind me did exactly what I did. And before I was done dealing with her, he started putting stuff on the conveyor. And the cashier snapped at him, too, and said, “Sir, you need to take your stuff off of that conveyor, didn’t you see the sign?” She didn’t say anything to me about seeing the sign, she must have saw the white cane. So it cut me a little bit of slack, which was good.

This is where I have found the cane to be very helpful. It also helps that I can use the ID cane to test surfaces and things so that I can take that next step a little bit more safely. And hopefully, if it ever does happen again that I’m walking by a construction crew, hopefully, they’ll get me out of harm’s way before something goes really wrong. I felt so bad for that guy with the cement though, man, because the guy was at the other end of the sidewalk, he was almost done. I felt so bad for ruining his work. So that’s my experience with the cane. 

The other thing that I’ve learned over the years, is just what an absolute heaven-sent device the smartphone is. My iPhone, for all of its talking capability, the accessibility features that are built right into it, because that has absolutely opened up the world for me. When I got my first iPhone, actually, a friend of mine got an iPhone first and I kind of poo pooed the idea. I thought what am I going to do with an iPhone? I can’t see the screen, I’m not going to be able to make it out. I don’t want to sit there like this looking at the screen, you know, what am I gonna do with that? But this friend of mine, I don’t know who showed her this or taught her this, but she found out about VoiceOver on the iPhone. She showed me VoiceOver and then I just was like, oh my god, I gotta go get an iPhone today. So I went and got an iPhone that day, and got myself set up.

And now I text, I email, I surf the net, they do my banking, I get directions, I can do anything on my phone, because of the voiceover and all of the features that are built right into that. So, that has given me my life back. That might sound like a bit of hyperbole, it might sound a bit big to say that, but it’s not. It’s really allowed me to do everything that my friends do. I do it a little bit differently on my phone than they do. But, I do everything that they do, to use phones just like they do. In fact, some of my friends are a little less tech savvy than me, so when they have problems with their iPhone or their iPads, they’ll actually give it to me. I turn on VoiceOver, fix their problem, turn off VoiceOver and hand it back to them. So, VoiceOver has also allowed me to be the tech support guy, which is kind of fun and kind of cool. So, I’ve really enjoyed that. That’s just another thing that has come up.

So ,you know, whether it’s the cane or whether it’s the assistive technology, these are just amazing things for a person with sight loss. If I sound like I’m bouncing out of my chair, as I’m talking- it’s because I am. I’m really excited at how, as Maggie said at the beginning, life goes on after sight loss. This is what I learned. Yes, it was hard in those first couple of years. But it’s been so amazing since. I look back on the last two, then almost 2022, so it’ll be almost 17 years now. Except for those first two, maybe three years, where it was really tough- I love my life. I love my life with sight loss because I’ve been able to do so many great things and have so much fun because of my sight loss.

If somebody actually offered me my sight back tomorrow, I don’t know that I take it because I’ve been on an amazing adventure for the last 16 plus years and and it’s been just a completely different experience. I’ve met so many wonderful new people. I’ve been able to go places that I never thought I’d go. I’ve written and self-published two books. It’s just been an absolutely amazing experience having this Cortical Visual Impairment. Even the fact that I’m here today, and on this call with you folks. None of this would have happened if I hadn’t lost my sight. I’d probably still be in the television business, actually, I’d probably be laid off in the television business now, because it’s becoming so automated. But, I’d be probably still working in some form of broadcasting and just continued on a very fun path, but not necessarily an interesting path. Whereas now, I feel like I’ve been on a very fun and interesting path. I’m gonna stop there for a minute, and I’m going to tell a few more stories about driving.

Maggie

So Christopher, we had a question come in from Yujia. And I’m sorry, if I’m pronouncing your name wrong. She said she wanted from your perspective, what do you think corporations can do to be more inclusive for visually impaired people? Or employees?

Christopher

Oh, absolutely. Great question. You know, it’s still taking a little time, but I think we’re at a really good place right now, to really get the attention of corporations, businesses, everybody, especially when it comes to employing people with sight loss that, if they truly want to call themselves inclusive, and if they truly want to call themselves, that they help people with disabilities, and that they hire with people with disabilities – if they really want to walk the talk, this is the time to capture them on it.

And so, what those employers can do, I think, is be more open to it. Don’t be so closed minded about it. I know for myself, if I’m looking at a job posting, and I’ve applied to that job, I know that I can do that job, right? I’m not going to apply to be a bus driver, I’m not going to apply to be a pilot, because I know that I can’t do those things. I know that they’re very eyesight dependent. But if I’m applying for the job, it means that I know that I can do that. So, if they will have the conversation with me and put the right accommodations in place, like that discount brokerage did all those years ago, then I can absolutely be a rockstar in the job.

That discount brokerage was so willing to do that for me, which was amazing, because I’d had a different experience with an employer just before that, where they were like, “Oh, that equipment is kind of expensive.” The hesitation was what made me be willing to backpedal when I was talking to the bank, or the discount brokerage. But then to have that experience was like, okay, that’s the new bar, and every other employer has to meet that now, they were just so open and welcoming and willing to do it.

I remember my manager when I was in that discount brokerage, I remember him standing over my shoulder one day, and when I finished a client call, he said to me, “man, I don’t know how you do what you do, but I’m glad you do it.” So, that was a pretty amazing feeling. I have to tell you one story from that discount brokerage experience. It was kind of fun. So, occasionally, I would engage the clients in conversation, and we talk about other things and whatever. And I don’t know why, I don’t remember the full conversation, but I mentioned to a client that I had sight loss, that I was vision impaired. And he said really? He said, “Well, you don’t sound blind.” I still have no idea what that means. I don’t know what a blind guy is supposed to sound like. I don’t even know what a blind person is supposed to look like. People say all the time. Well, you don’t look blind. I don’t know what that looks like. I mean, I probably look more blind nowadays if that’s what their perception is because I do wear dark sunglasses because it’s really bright and sunny outside and I do have a white cane. So maybe now I do look blind, but man I’ve had that comment a lot of times over the last 15 years, 16 years even.

Maggie

Does anyone else have any questions or comments that they want to share?

Christopher

How much more time are you gonna give me?

Maggie

You have about 15 more minutes.

Christopher

Okay. All right. I’ll do just a couple of quick stories. Oh, gosh. So – driving. People asked me, all the time, actually, they say do you miss driving? And the answer is, yes, sometimes. I miss going out on a nice, long, leisurely drive out to the mountains, or going out to the lake or something like that. I miss those nice, long, leisurely highway drives. However, I don’t miss commuting. I don’t miss road rage. And, I don’t miss winter driving. Here in Calgary, we get a lot of snow. We also get a lot of freeze thaw cycles because of the heat coming off of the Rocky Mountains. So, we get a lot of icy times. I don’t miss any of that.

Two weeks before my sight loss back in 2005, I had renewed my driver’s license. And when it was found that I had sight loss, and when I was found to be legally blind, my doctor didn’t pull my license, and I was really glad he didn’t. Because it was still a really good piece of ID, right? I mean, if you go into a bank or anywhere else that they need to see an ID, what’s one of the first things they asked you for? Can I see your driver’s license? Right, so I was really glad that they didn’t pull my driver’s license, because it was a great form of identification.

But five years later, 2010 when it came time to renew my driver’s license, I thought for sure they were going to pull it because I hadn’t been driving now for five years, and was still legally blind. I thought for sure this was going to be the day that I’d have to give it up. But I thought, well, it’s still a good piece of ID. So I’m going to try anyway, what the heck. I got the form in the mail for the renewal. I filled out the form. And on the second page of the form, it said, “Is there anything that might inhibit your ability to drive”? So I wrote legally blind. And I went down to the ministry office and I handed them my form, and I handed my credit card. And two weeks later, I got a driver’s license in the mail.

Now, I’m smart enough not to drive. I know that my sight isn’t good enough. I know that my reaction time isn’t good enough for things in my periphery that I may not react. So, I’m smart enough not to drive. But when I want to be behind the wheel. I go to a go-kart track. The last time I was there was last October. So about seven months ago. I went to a go-kart track with some friends and family, because I was having one of those big number birthdays that ends in zero. And my wife said, what do you want to do to celebrate? I said I want to go go-kart racing. She said, okay, let’s do it.

So, we got a bunch of friends and family together. We went go-kart racing, we did three races that day. The first race, I took first place. The second race, I took third place. And in the third race, I took second place. The only person who beat me in that third race was my younger brother, who was actually born vision impaired. So the two vision impaired guys kicked everybody else’s butt.

I have to go back a step, because my brother was born vision impaired, whereas mine came later in life. When I lost my vision, having grown up with him and seeing him get around, he’s about 20/200 as well. He’s got pretty good usable vision. He’s actually albino so he’s got white hair, pink eyes, and when you are albino, blindness comes with that. So he’s about 20/200. And he did everything that we did when we were kids. He kept up with his two sighted siblings. So when I lost my own vision, he was actually my inspiration. I thought, well, if he can do this, so can I. And he was the one who kind of you know, he wasn’t a cheerleader or anything like that. That’s not his style. He’s really a very introverted guy. Absolute polar opposite of his brother. But  just in his own quiet way and by doing his own thing, he was a huge inspiration. And so that’s what kind of got me through to be the person that I am now, living my life and loving my life as a guy with sight loss.

Maggie

While we pause for a second, there’s a question. I think Neil is on the call. And he has a question that he would like to ask.

Neil

Okay, first of all, I love the program, and I’m very impressed with you. I’m blind myself, obviously. Are there places that you could look up, or that you could Google, with respect to people in the industry, real estate or in investment banking that are hiring the blind?

Christopher

I would say to that, to be fair, Neil, I’m not in the States. So I can’t speak specifically to things in the States. But what I would say is this, I would say just, whatever assistive technology you can use to go on a computer, you can look up and go to the website of the the investment banking firms or, or whatever firm it is that you’re interested in working at, and see what kind of postings they have. When you read the job descriptions, this is what I do. When I read the job description, I just think to myself, you know, do I have what they’re looking for? And I don’t necessarily have to tick every box. But if I can tick most of the boxes, I’ll throw my name in. And when I get the call for an interview, hopefully, but when I get the call for an interview, then I will have the conversation with them at some point during the interview about accommodations that I need. I don’t put it in my cover letters. I don’t put it on my resume. I don’t do those things. I get invited to the interview, and I let them meet me and get acquainted with me. And then at some point, when it’s appropriate, I’ll have the conversation about accommodations. So, I would say whoever you’re looking to apply to, if you see a job that’s of interest to you, and you think you can do it, go for it.

Neil

When do you tell them the news that you’re blind?

Christopher

You know, it kind of depends on how the interview is going. Like I said in that one case, I was very upfront about it and I sort of blurted it out very close to the beginning of the interview. Other times, I’ve sort of waited for it to come up, at some point in conversation when I thought it was appropriate. Or, if it doesn’t come up at all, where I will sort of force it to come up, is when I get to the end of the interview, and they say okay, do you have any questions for us? One of the questions that I often ask is, what is your policy on accommodating people with disabilities? So, I still don’t necessarily tell them about the sight loss when I ask that question. But I get the conversation started that way, so that once they start answering it, then I can reveal my sight loss and we can get deeper into the conversation.

Neil

Okay, and are there any business clubs out there for the blind, that people meet at? You know what I mean? Like, meet-up clubs or something to that effect?

Christopher

Nothing that I’m aware of specifically, but what I would say to that is, if you’re familiar with the app or the group called MeetUp, I would do a search on MeetUp and see if there’s any groups meeting near you or in a place that you can get to. The groups probably won’t be specifically for people with sight loss. But, does it have to be? I mean if you’re all there, because you’re interested in investing- it’s an investment club or something like that. I don’t see why it has to be specific to people with sight loss. I would say you can talk about investments with anybody else in the room. If that’s something that you’re interested in.

Neil

Thank you.

Christopher

Absolutely.  

Maggie

Grace, did you have a question? I saw you raise your hand before.

Grace

Am I unmuted? Can you hear me? Okay, thank you. Hi. It’s a pleasure to meet you. My question has to do with the early days when you were first facing the reality and getting over the hardest part of realizing what your problem was and engaging your natural abilities to challenge the problem. How did you do that?

Christopher

That is a great question. Two things I think really helped me with that is I had amazing support from my wife and from some very, very close friends who really rallied around and supported anything that I wanted to do- like the very first time that I told my wife I wanted to go go-kart racing, she was a little bit panicked. But she went, well if he thinks he can do it, let’s give it a go. A couple of friends came with me, and we went, and we had an amazing time. So, having the support of family and friends definitely helps. And I think it has to come from within, too. You have to find the willingness to want to go forward. And like I said at the beginning, I think having that idea, that motto for myself of being on this planet for fun. I wanted to get back to that person. I wanted to be that person as much as I could. Yes, I’m that person with less eyesight, but I’m still that guy. And I’m still having fun.

Grace

Okay, thank you. And there’s just one one other thing. I’m old enough to be your grandmother, so with your permission, can I give you a hug?

Christopher

Of course you can. Please do. Yes.

Grace

There you go.

Christopher

I don’t think you’re old enough to be my grandmother, Grace. I said I celebrated one of those ones that ends in zero. I celebrated 50 not that long ago.

Grace

Okay, well, yesterday was my 80th.

Christopher

Yeah, so, still not my grandma, my love.

Grace

Okay.

Christopher

Thanks for being here, though.

Maggie

Happy belated birthday.

Christopher

Yeah. 80th birthday, Awesome. Yeah. 

Grace

Thank you.

Maggie

The next question that came in was from Audrey, who’s here to support her daughter who may eventually be completely blind, due to continued retinal detachments. Currently, her vision is 20 over 300 with a small field of vision. So, do you have advice on how she can best support her through the grieving process and how your family was able to support you?

Christopher

Just be there for your daughter as much as you can. Just be there, that’s all my friends and family really did is they were just there, they were there to hear me when I was suffering. They were there to cheer me on when I was having a good day. And they were there to cheer me on, through all the little accomplishments. The very first time that I was able to recognize color again, because I did some of my color vision back. So the first time I was able to recognize color, that was a huge day for us, we celebrated. Just celebrate the good days and just be there with kind words in the bad days. And, just let her know that life goes on. Life goes on with sight loss. It’s not the end of the world. It’s hard. It is hard, but it’s not the end of the world.

I’ve got a couple of very good friends who are completely blind, they’ve never seen a day in their lives and they do stuff that I can’t even imagine doing. One guy goes out, (he lives in Halifax, Nova Scotia, Canada,) goes out sailing on the Atlantic Ocean, he’s got friends to help them steer the boat and such. But he goes sailing, and he’s completely blind and he loves every minute of it. I’ve got another friend who’s completely blind, who went out with his brothers to the farm and he drove his own ATV around, he just followed them. So life is not over with sight loss. And that’s the message. I wouldn’t necessarily send that message on the bad days. But I would say, “you know what, this is just a bad day, it’s going to pass, Tomorrow’s gonna be a better day, we’re gonna move on.” And when it is a good day, then you can talk about you know what, see, you’re getting through this- life goes on. That’s just the wannabe psychologist in me, I’m really not. It’s just how it’s worked. For me.

Maggie

I think it’s really important that you emphasize the mental health component of vision loss, and that you’re going through stages when you receive the diagnosis. And it’s really important to recognize that, and not be so hard on yourself and give yourself grace. Let your daughter know that.

Christopher

Absolutely. Yep. It’s very natural, especially with progressive conditions like RP, like retinal detachment, those kinds of things. I have a number of friends who have RP, retinitis pigmentosa, and anytime that they get to a stage where they realize that their vision isn’t as good as it was three weeks ago, they sort of sink back down again, a little bit for a day or two. And they sort of have to bring themselves back out of it. Because it keeps changing on them. But they bring themselves out, they carry on. And every one of them is an amazing person, and I’m happy to know them.

Maggie

Does anyone else have any other questions, or anything that they’d like to share? I see a hand raised- you can go ahead and unmute yourself.

Speaker

When you go out by yourself alone how do you handle things like crossing the streets?

Christopher

Well, I’m always thankful for the intersections that have the beeping pedestrian signals. Those make life much easier. But with the vision that I do have, my head is always on a swivel, looking back and forth, left and right, to make sure nobody is going to make a right turn, while I’m in front of them, or a left turn while I’m in front of them. I use my ears a lot. I’m really listening a lot to know when the traffic has stopped around me. And I’ll be honest, I’ve had some I’ve had some near misses. I’ve had some people bump me, you and I’ve given them a whack in the hood. You know, to wake them up because it’s like, hey, you’re the one with vision, you should have seen me, you know? So yeah, it can be a bit nervous to be out. But just use your ears a lot and if you can find yourself in more of those intersections that have the beeping signals, I would say do it.

Speaker

When you go to a restaurant, can you see the food in front of you?

Christopher

Yes, I can. But I can’t always tell what it is. I can see that there’s food on the plate. But I can’t always tell what it is that I’m eating. That has led to some really tricky situations because I don’t have any food allergies, thank goodness. But I absolutely cannot stand beets. And I’ve had beets on my plate and sometimes not realized it until they’re in my mouth and that’s gross. So yeah, I can see that there’s food on the plate, but I can’t always tell what it is. And so sometimes it’s caused some unfortunate taste situations.

Speaker

Okay, thank you.

Maggie

We have a few minutes left, and there’s a lot of really positive comments that are coming in through the chat, Christopher. One of them I want to share with you, it says, thank you so much for sharing your positive attitude, and your outlook on life. The mental health component is very, very important and this presentation was more valuable than you know.

Christopher

Thank you so much. Thank you, that means a lot. I am a huge advocate for that. I am a huge champion for that. The mental health aspect of sudden sight loss. The mental health aspect of progressive sight loss, even. When somebody who has RP for instance, and gets diagnosed as a teenager and realizes, they get a diagnosis at like 12 years old, and they get to realize that they’re not going to have a driver’s license. That’s a mental health moment that they need to come to terms with the fact that they’re not going to drive like all their friends are doing. So it’s huge for anybody that has to go through these kinds of things and it saddens me that the medical system in general doesn’t take it more seriously. 

We’re going to fix that. I was telling Maggie about this. Is this a good time to talk about this, Maggie. Yeah, I have a goal. I have a goal. So, we mentioned at the beginning that I work for CNIB, Canadian National Institute for the Blind. But I’m actually leaving CNIB because I have a goal and a dream that I want to advocate more for CVI. I want to advocate more for mental health as it relates to sight loss. So, I am actually going to go off and start doing my own project. I’ve got a couple of friends who I’m going to tap on to help who are much smarter than I am, who also know about CVI, and I’ve got big plans for this. We’re going to have to roll it out in phases. We’re going to start with advocacy and then hopefully we’ll get into some O&M, and independent living, and some other skills training and stuff like that.

So, we’re gonna unravel it or unfurl it as we can, and as we go, but my goal right now is to advocate loud, much louder, and make much more noise for CVI, and the mental health component that goes with it. Because, even in the last five years, I’ve met way too many adults who have had similar experiences to mine, where they’ve had a stroke, and the stroke has affected their vision and the hospital has said, “Oh, it affected your vision? Oh, that’s too bad.” And then they don’t do anything and it just breaks my heart. So that needs to stop. So, I’m gonna make as much noise as I can to make it stop.

Maggie

We wish you the best of luck with everything. You’ve a lot of cheerleaders here, supporting you. Anything that we can do to support you, please let us know at any time. We’re hoping that you end up coming to New York for possibly a book tour.

Christopher

I would love to do that. Actually, I have to write another book. Now I have to sort of tell more of the story of living with CVI. The first book was just about sort of the sight loss and learning to live with it. Now I get to talk more about life with CVI. So there’s another book project going to happen. Oh, it’s fun. Real quick on that. When I was in grade 11, my English teacher actually busted for a lack of effort in her class. She pulled me aside and she said, Christopher, look, I know you can write, I don’t know why you won’t. And I said, because you’re not giving me anything I want to write about. So, if you give me something I want to write about, I’ll write you a novel. And so when I published my first book, I actually tracked her down. She had long retired, but through some friends, I tracked her down and I sent her a copy. And I said, see, turns out we were both right.

Maggie

Oh, great. Well, we’re, we’re just about at 9:30. Grace I see your hand up, feel free.

Grace

Yes, Christopher, you’ve given the gift that is ungiveable. And that is the gift of hope. Through your example, you have provided the hope that answers the question: I’m going blind, what am I going to do? And what you’ve provided here is the idea that it’s futile to ask that question. Because the answer is, you just keep going. And that’s what you have illustrated tonight. Thank you.

Christopher

Thanks, Grace. Young lady, you’re gonna make me cry. But I’m trying to resist. Thank you for the kind words, I really appreciate it.  

Maggie

Thank you, Grace. I think that you wrapped this up very beautifully. And Christopher, thank you so much for coming on and sharing your experience with us. Your story is really, truly inspiring. And your positive outlook is really incredible. If anyone does have any other questions that might come up, you can reach out to me and I can relay the message to Christopher and get those questions answered for you. And I will also be sending a recording of the presentation later this week.

Christopher

Maggie, if you’ll let me- I’m more than happy to have people contact me directly. It’s just Christopher@lifesnotover.ca

Maggie

I’ll put that in the chat for everyone.

Christopher

You can go through Maggie too, but if you want to come directly to me and ask questions, I’m more than happy to take questions or provide any assistance I can. I’m not a I’m not a guru of all things sight loss. I just have my own lived experience to share.

Maggie

Thank you for sharing that. We’ll also send out Christopher’s contact information with the recording. So, you’ll have that in the email also. Thank you so much. Thank you everyone for joining us tonight. I hope you have a great rest of your week. We’re looking forward to seeing you next month.