James Behre is living with the loss of identity due to Aphasia after a stroke at the age of 68.
08:39 Living with Aphasia after a stroke
18:53 How other people deal with my aphasia
28:30 Communication challenges after a stroke
35:59 Adjusting speech approach
44:10 Aphasia and stroke survival
James Behre 0:00
I have to write stuff down or I will forget it, one thing I’ve learned is I can no longer be the narrator of my own life. Well, I can, but it takes forever. As you can see, I talk this way and with pauses, and while I’m thinking of the next word to say or a way to say it, get my mouth ready to say it.
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Hello, everybody, my book The Unexpected Way The Stroke Became The Best Thing That Happened is now available for purchase on Amazon. Just search by the name Bill Gasiamis. Or follow the links in the YouTube description and the show notes.
Introduction – James Behre
And if you are an Aussie, and follow the Aussie link, rather than purchase it on Amazon, you can even get your copy signed by the author, me. This is episode 281 of my guest today James Behre, who experienced a stroke aged 68. And despite his aphasia, wanted to appear on the show to inspire other stroke survivors going through something similar. James Behre, welcome to the podcast.
James Behre 2:03
Thank you. It’s good to be here.
Thank you for being here. Tell me a little bit about what happened to you.
James Behre 2:12
I had a stroke almost five and a half years ago. It happened while I was asleep. And sometime between 10 and 5 at night. I woke up around five. And the only symptom I had was presence involving the right side of my mouth. It didn’t hurt but I felt it felt strange.
James Behre 2:58
And I got up to go to work. I am retired and had a part-time job at the time. That involves opening houses for vacation road rail companies. And this morning it happened I will only have one house to open. So I got up and took a shower and did everything normally and drove off to work.
James Behre 3:44
And I got to an arco station which sells coffee. And I got my coffee and gave the guy two bucks at the counter because it cost $1.60. And I went and opened the house. I didn’t talk to anybody because I didn’t need to. And so after I opened the house, I started to think about the right side of my mouth. I went home to try to say it to my wife.
James Behre 4:39
And when I got there and started to talk, I found out that I could and she thought at first I had been in some terrible accident and was so stressed out and out thought about it. I couldn’t talk. But she finally noticed a droop in my lip and said, I think you’re having a stroke and we went to the hospital.
Did you offer any resistance to the “I think you’re having a stroke” comment, or were you pretty compliant?
James Behre 5:24
I was completely compliant. I knew something was wrong, especially when I couldn’t speak at the hospital. It’s a remote location, Big Bear, California, they curtain curd that I had the stroke, and immediately put my knee on a helicopter and transported me out to a stroke unit that was in a nearby town, it took 25 minutes by helicopter, and it would have taken an hour and a half to get there. By car. So once I got there, I don’t remember a lot about it.
James Behre 6:28
But I had a CAT scan. In the MRI, I checked into the stroke unit they had, but that confirmed that I had a stroke. But I didn’t quite believe it because I associated a stroke with being paralyzed. And to some degree, and I wasn’t, I was not paralyzed at all. So I was in the hospital for about a week. And then they discharged me. I had a bad experience there.
James Behre 7:17
I had been fighting AFib attacks for about 10 years at a time. And as it happened, I had one the next day I was in the hospital. And they sent me to a different unit because I was they said My heart was beating too fast.
James Behre 7:45
And I couldn’t explain to them what was going on, they kept me in a different unit for three days. And back in the original stroke unit, the AFib went away. And they released me to go home. And I frankly was no better off when I got home. And I was in the hospital.
Living with Aphasia after a stroke
So you were 68 when this happened, and that was in 2018. And your voice at the moment is quite labored. are you demonstrating some major improvement since your hospital stay? Was your voice nowhere near what it’s like now?
James Behre 8:44
If you asked me and you did, I think it’s about 10% of what it used to be. That isn’t to say that I have come a long way in that I can speak rather laboriously, as you say, and my speech has no rhythm to it. And it’s enough to get by and getting by is not what I have been used to all my life before this stroke.
What was life like before the stroke? How did you occupy your time?
James Behre 9:30
I spent 30 years in the home-building business. That was my career as a superintendent, customer service manager, and purchasing manager. Those three jobs I did in those 38 years and I never was afraid to talk to large groups.
James Behre 9:58
I liked it and I did it all the time in my work, I had meetings that I did when I was a Customer Service Manager, meetings with homeowners who were about to close escrow on their house. And I ran the meeting. And I told him what to expect with, as through closing, and the walkthrough, and presented them with a manual our company had made.
James Behre 10:37
And I enjoyed it, I did about 50 of those meetings. I’m also very creative. I think I’ve written songs and played guitar since I was 16 years old. Some of the songs I’ve written are, frankly, pretty good. If I do say so myself, I’ve been creative in my job. I I thought, though, the meanings I was just telling you about, I came up with that concept for our company.
James Behre 11:23
And I did other things like I’ve reworked their construction, scheduling to fit a better way of doing it. And that could be trapped on a computer computer was just starting at that time. It was in the early 90s.
James Behre 11:52
But, later, I started a construction class amongst the employees who didn’t work in the field, our company at the time, had about 150 employees, and about 30 of us worked in the field, the rest didn’t. So I wrote the textbook I was going to use in the class. And I did it.
James Behre 12:29
I conducted a two-day class, I gave diplomas out. To those who were there both days, if you were there one day, you didn’t get a diploma. But I had fun with it. And it was something of value and the company, company, company loved it.
Tell me. So you were quite independent, you’re responsible for a lot of things. You had a lot of people that you communicated with. And then you experienced a stroke. And the one thing that’s impacted the most is your ability to communicate. How does that impact your identity and how you see yourself in the world now?
James Behre 13:24
Glad you brought that up. Because I have notes that I’ve made. I hope you don’t mind, my attention span is so bad due to the stroke that I have to write stuff down, or I will forget it. One thing I’ve learned is I can no longer be the narrator or have my own life. That’s out. Well, I can but it takes forever. As you can see.
James Behre 14:07
I talk this way and with pauses and while I’m thinking of the next word to say or a way to say it, get my mouth ready to say it. I had a website about a year ago. One of the articles I wrote on the website was Aphasia, the Real Identity Thief I talked about that and it’s true because how else can you or anybody tell the story Worrying about who we are if you don’t speak well? You can’t?
Yes, perhaps. So, out of curiosity, when I speak in the speed and the tone and the way that I speak to you, is that difficult for you to grasp any of that? Or is that okay still?
James Behre 15:27
No problem at all. Okay, I can understand everything you say, or most people say to me, reception is not a problem with me. Getting words out is.
And the words. So I have to, I don’t have to think about the next word that’s coming up. Are you formulating the whole sentence before you say it? Or are you formulating it as you go?
James Behre 16:02
A little of both? I formulate a few words, and then try to connect those words as I go.
Is that requiring a lot of a lot of your battery? A lot of energy to have a long conversation with somebody?
James Behre 16:24
Yes, talking for any length or, of time wears me out, It’s physically hard.
Does writing have a similar impact on your energy levels? And is writing able to be as fluid as it was before? Or is there a harder-to-create written text as well?
James Behre 16:54
I write exactly how I talk. Therefore It wears me out to write. I’m writing a book about my experience with aphasia. And at the same time, I’m, I think my life has been rather interesting. If I do say so myself. For other things that I’ve not mentioned to you.
James Behre 17:29
I tried to combine those things in the book. The book starts with me, with what I told you originally about what happened to me. And then the next chapter is the summer of 57 when I had my first open heart surgery.
James Behre 17:56
Then the next chapter continues my journey with aphasia, and so on, eventually, I’ll finish a book, the book, but it takes, like I said, I’m right, exactly how I talk. And when I type the words, I’m careful to not leave anything out.
James Behre 18:23
But I have to re-read about every four sentences to make sure Yeah, I haven’t left it thing out. And I do that because my intelligence hasn’t been affected. So I know what it is supposed to look like. And that if I have to, and I have to all the time, I fix it. Okay, tell me takes a lot of time.
James Behre: How other people deal with my aphasia
Tell me about how other people receive you. So I’ve interviewed a lot of stroke survivors, and many of them have had aphasia. And I have to listen and also have to edit the episode so that I can decrease the pauses to make it easy for people who are listening to listen.
But what I like to do at the beginning of each episode, where there’s somebody who has aphasia, is to leave the first few minutes of conversation at your normal speed so that people can get a sense of what aphasia is like.
And then we can hopefully give them a bit of an understanding of what happens when people have aphasia. When people opposite you are having a conversation with you, how do you find them struggling with your aphasia, it’s not an easy task, to give somebody the amount of time that they need to have a deep and meaningful conversation. It’s a new skill they need to learn.
James Behre 20:03
Well, my daughter, who you saw momentarily, is my technical advisor. And my wife, it’s been five years, but they struggle with it too. And I’m not the same person I was before. That’s a fact.
James Behre 20:34
And most people that I, on the calendar, at the grocery store or fast food store are right away. I tell them if I have to, I’ve had a stroke. And it’s difficult for me to talk. I don’t say aphasia, because most of them don’t know what that is. So I leave that out.
James Behre 21:02
And people understand for the most part, that one of the stroke symptoms is having trouble talking, I’ve met a couple of people who didn’t care that I have this deficit, but for the most part, people understand it, because chances are, I’ll never see them again. And I move on. But what I like to tell them, if they have time is.
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid?
In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.
If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke.
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now recoveryafterstroke.com and download the guide. It’s free.
James Behre 22:42
I have trouble reading, and writing, and working with numbers drives me crazy. My attention span is all but zero which affects everything I do the concentration I require to stick with something wears me out also, I have to remind myself as I’m going to the kitchen, why I’m going there. And sometimes I don’t then I have to concentrate. And usually, I figure it out.
So you have a memory deficit as well?
James Behre 23:27
I call it concentration and the ability to concentrate on one thing is gone. I know I’m getting old. And old people have those bouts, where they have to think about why they’re in the room and from time to time. But this is something different. I’m not conflating the two of them.
James Behre 24:00
I think it’s because my attention span is so low that for example, people, like my daughter and my wife turned down the TV when I approached them. After all, I can’t stand loud noises of any kind. And if the TV is going at a normal volume, I can’t concentrate on what I’m doing.
Yeah, sounds like sensory overload kicks in as well. And that then derails your ability to speak your ability to focus on a task, your ability to get done, the things that you’re attempting to get done. Exactly.
James Behre 24:52
Sensory overload is a good way to talk about it. And it requires minimal sensory overload. It doesn’t take much at all. Now to get me off track, I wasn’t like that. Before the stroke. I was no multi-tasker, but I couldn’t do as they say, I could walk into gum at the same time and now, I can’t.
Fair enough. Yeah. Fair enough. How does it affect your psychology, your mental health, and your emotional health when you wake up one day, and you’re different in so many ways, and trying to navigate your life?
James Behre 25:48
Well, I watched your podcast this morning with Brooke Lang. For the first time, you struck on two topics that are the crux of the way I feel now, those topics are loss of identity. And you talk a bit about feeling stupid.
James Behre 26:19
I’m a person who questions everything I ever did as an adult, for fear of looking stupid, or the appearance of looking stupid. And now you can imagine how I feel because people aren’t cruel to me. They don’t tell me I’m stupid, but it’s me. I feel stupid talking this way.
Okay, so it’s not that you care what people think. Do you give a shit about what you think about yourself?
James Behre 27:03
Yes, I do. And when I open my mouth, it doesn’t take a rocket scientist to tell me that I have a problem. You can tell immediately. You touched on something else with your talk with Brooke, the invisible deficits. I’ve got a bunch of those.
James Behre 27:33
And she said, in the podcast, she was referred to if I’m paraphrasing, of course. But she thought if I approached you with a no, this a bull limp, or my hand collects in a certain way before I spoke, you would be somewhat prepared for the way I speak.
James Behre 28:08
And I had that very thought a year ago. And it’s nice to know that Brooke Lang said what I was thinking, someone else that cut caliber proved me, right, because I can’t read right?
Communication challenges while living with aphasia
Well, you can, it’s just that you do it differently.
James Behre 28:34
It’s harder for me, too. When I first had a stroke, when I would attempt to read something, everything looked like a word salad to me. And I just couldn’t
It even looks different. It’s not only that your connections are different than the way that you make sentences and smooth things through. It’s also that it looks different than it did before. So is it you know, some people explained that they’ve had that condition all their lives. What’s a call did some were the words get jumbled is that what you’re experiencing?
James Behre 29:23
Sort of dyslexia. I’ve used that term before, but it’s not quite right. The words didn’t seem to go together. When I look at something, and I’ve gotten so I can read, but I read one word at a time and try to make the words connect their meanings I’m thinking, and I get lost because my concentration is so bad, I have to start over.
James Behre 30:11
I can’t even concentrate that long. I had, I went back to work with my job two weeks after the stroke. And I could barely speak, but I didn’t have to my job was sets that I didn’t have to talk to anybody. And if I did, I would call the office and tell them something was wrong with a particular house that had to be opened. And they understood.
James Behre 30:50
And sometimes when I had to do that, I drive to the office and just tell him or show them in some way, what was wrong. I found that I couldn’t count things, I couldn’t tell to a million in my head. But I couldn’t. If you gave me anything to count, I had trouble.
James Behre 31:19
And I got to where I used to count days, houses on my schedule, they give us a schedule every week. And I got so much money per house. I counted the houses every Monday when the schedule came out and knew very close to what I was going to make that week.
James Behre 31:48
And when I tried to do that, after the stroke, I couldn’t I learned to count in increments of five and make a mark five more and make a mark, and so on. And then I use a calculator to add up the fives. So I know how much I would make. It was embarrassing for me. Even by myself, it was embarrassing.
What do you think of that? What do you think? Embarrassment is interesting. But it’s embarrassing. I mean, because are you judging yourself? Why is it embarrassing?
James Behre 32:47
Because I have to do all these things that I could have done in a minute. Before it took me 10 minutes to figure it out. And it’s just embarrassing to me.
Yeah. Is it because the world is not set up to operate with people who are at a slower pace?
James Behre 33:25
No. I feel like I’m 33 rp in the record. The world’s going at 78. And I don’t know how to catch up. And I can see it in people’s eyes. The way they want to hurry me up with talking. Everybody’s in a hurry.
Were you in a hurry? In the old days?
James Behre 34:01
No, I didn’t talk fast. I know some people who talk fast. Some people that I didn’t necessarily like and I hope they get aphasia because that is one of the biggest problems. I can speak rather well. If I slow down.
James Behre 34:35
And I was taught that in speech therapy, there are problems with slowing down. First of all, you sound like a robot. When you do that, you can talk and make words more or less bold to others by slowing down your speech, and I forget to do that most of the time because I don’t like sounding that way. But okay, well, when I talk, faster rate, you know what happens.
It’s not about what you like, it’s about what’s more effective in helping you communicate James, there I’m going to tell you, I’m going to whack you over the hand and tell you. So I know that you’re frustrated. And I know that it’s challenging. And I know that people don’t understand.
And they never will, the only way they’ll understand is if they go through what you go through, and then it’s too late anyway, because, you know, it hasn’t solved your problem at the beginning of the conversation that you had with them.
Adjusting speech approach
So right now your conditions are different, you’ve got to navigate them differently, you’re in a boat. And when you set sail, it will smooth seas. But it’s not smooth seas that make the sailor, it’s the difficult conditions that make the sailor.
And that’s the whole point of the adjustment in your approach to life, you have to let go of the way they used to do things and find an alternative route, you see a highway, and it’s got, you know, four lanes one way and four lanes the other way.
And then there’s a massive tree in the middle of the four lanes, where you’re not going to try and drive over the tree, you’re gonna find a way around the shore, if you’re in the right car, you might get over the tree to an extent.
But now that you’re not in the right car, you’ve got to use the car that you have in the most appropriate way to get you to your destination, as efficiently and using as low fuel and as low energy as you possibly can. So that when you get to the other side, you still have some reserves, left in the tank to get back to where you started.
And I, I know, it’s easy for me to say all of this stuff to you because it’s I’m not in your shoes. But from the observer, you’re doing well. And I reckon you could do you could get better by being the tortoise instead of the hare.
And then once you are the tortoise for a little while, you’ll start to be able to increase your speed. And if you don’t become the hair, you’d be able to work towards speaking quicker. Not as quick as the people you disliked. But quicker than your current five-year post-stroke speech.
James Behre 37:59
Thank you for the kind words, I mean it because I have come a long way with very little help. Eight weeks of speech therapy. That’s it, looked on YouTube for videos about aphasia and educated myself from then on. That’s why I know a lot about the condition.
James Behre 38:37
I know about this artheria. Because I’ve been diagnosed with this arteria, that’s more prevalent than aphasia. But What you said makes a lot of sense. I can’t argue with that. But before the stroke, I was always from my emotions would take control. And my elastic would be second. And that’s the dilemma you placed me in currently.
I understand. So you wear your heart on your sleeve, and that gets in the way. You know, so the skill, the skill here is going to be that you need to get out of your way. Because what I noticed with a lot of stroke survivors is that most of them get in the way of their recovery.
Of course, they’re dealing with some serious issues, but the skill that they need to learn is how to get out of their way. With people who have aphasia, the third skill they need to learn is not how to talk, it’s how to be more conscious of the things that they do that get in the way of their recovery.
And then once you master yourself, the thing that you’re trying to overcome becomes a smaller obstacle to overcome. And you also start to deal with it better, you start to deal with the fact that you have the condition better, because when you’re going fast, your vocal cords operate at a different frequency, you’re your lungs, your chest expands differently, your brain works differently, your blood flow changes your oxygenation changes.
So if you’re working at a rate that is far more rapid, well, then that energy drain is taken up by things that you don’t want to be stimulating. While you’re talking, what you want to be doing while you’re talking is just allowing all the energy resources to go to the vocal cords to get the words out, and to make the connection from the brain to the mouth.
And it just seems like a lot of people recovering from a stroke, and particularly aphasia use a lot of their energy in other areas, and if they learned to disengage those areas, they would have more resources available to put towards the talking tortoise and hare. And anyhow, because you’re an older guy, when you talk slowly, you sound wise.
James Behre 41:52
I’ve been told that I can verify what you just said. When I get upset, or mad, I can barely say a word I think it might as well be, that I have to come down if I can. For instance, we had an example before the video, and I was so scared that I would do something wrong. In the podcast. I didn’t know how to set it up. I’m I’m when it comes to technical stuff. I’m nowhere.
James Behre 42:48
And that’s why my daughter helped me. But I could see it welling up in me. And I tried to control it because I was going to be with you eventually. And that proves what you just said when I get excited mad or upset. I can’t find any words.
James Behre 43:19
And when I’m talking to you at a slower pace, it comes easier. And so what you said about me being a tortoise makes complete sense except when I want to be the hare.
You can be the hare sometimes as well, there’s no problem. You can be the hare you know 10% of the time, and that’s okay. You are the tortoise 90% of the time you’ll get more results. And then when you want to be the hare be the hare.
Aphasia and stroke survival
James Behre 44:01
I did some homework before I started this podcast. I watch a view of your videos. You’re calm and patient demeanor sold me that I wanted to be a guest. If you were talking fast and as a car salesman, I wouldn’t be here.
James Behre 44:32
But I didn’t expect it. I expected you to be patient and well-informed the way you are and I thank you for that. I don’t get to talk this long about aphasia in my condition with anybody.
I don’t normally record our long episodes with somebody who’s had aphasia because A, they can’t get their B, it doesn’t usually make good listening, like we just spoke about people on the other side, don’t get excited to listen to a one-hour conversation, they’re impatient or whatever, I understand that not everybody has got a lot of time.
But this podcast is exactly that. It’s I’ve got time, we have an hour and when the hour is up, we will wrap it up. But until then, this is your platform. It’s about you. And the people listening, and it’s less about me, I’m just the vessel to allow this type of information out, you understand?
So I, I’ve interviewed now, I think you know, you’re well in the 270, range of podcast episodes. So it’s not unfamiliar to me, I’m completely familiar with it. But how many people come across 270 stroke survivors? None.
James Behre 46:04
That’s what, my intent for doing this would be for others who have aphasia. And I understand it affects everybody differently. But if I can get them to say, oh, yeah, I felt that way. At times, and I, I can relate, then I’ve done my job as a helper because this condition sucks. Well, for lack of a better term, I’m still learning new things. Almost every day I didn’t know I was affected by this condition.
And yet, you still decided, after all of these challenges and issues, you still decided you’re going to put a book together?
James Behre 47:24
Yes. Like I said, I think my life has been interesting before aphasia, and now that aphasia has happened, it’s more interesting. And I put that together in the section called notes from the author, where I say, I planned on retirement, telling my story to grandchildren or whoever wants to know, but now I can’t. And the book does that. Yeah. It’s a perfect excuse if you want to call it that, for writing the book.
Yeah. Well, we are at that time where we have to wrap up this interview, I do appreciate you reaching out and sharing part of your story. And, unfortunately, you cannot participate the way that you prefer. But still, I want to emphasize that participation. And the way that you go about it, you’ve gone about it so far, is amazing.
You’re doing a fabulous job. And you’re being an example, of how to keep going, Despite the setbacks that we faced, and to do something like coming onto a podcast, where speech is the main tool for getting the message across.
And the decision to do that I think is fabulous. It’s great because it just goes to show that even though you’re dealing with all the things that you’re dealing with, and it sucks and you dislike it and you get frustrated, and you get all those things, you’re still looking for solutions. You’re still looking to help other people, and you’re still practicing your speech.
James Behre 49:48
Thank you for saying that. It’s true. That’s all I can say.
Well, thanks for joining us on today’s episode remember, grab your copy of the book, go to Amazon type in my name Bill Gasiamis, or the unexpected way the district became the best thing that happened. And get your copy today. If you’re an Ozzy click the Ozzy link, and you’ll even be able to get your copy signed.
As always, to learn more about my guests, including links to their social media and other pages. To download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. Thank you to everyone who has already left a review for the podcast on iTunes and Spotify, it means a lot, it makes a massive difference to people who are looking for this type of information.
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