Candice Vogel is working to overcome vision problems after a stroke. Ironically before the stroke, Candice was employed as a reading and vision therapist helping children do better at school by addressing reading and vision issues.
Email: [email protected]
Highlights:
02:09 Introduction
03:31 Stroke and Vision Loss
15:40 Dealing With The Symptoms
22:46 Ischemic Stroke
31:32 Vision Problems After Stroke
37:44 Emotional Recovery
41:57 The Post-Stroke Deficits And Therapy
48:36 Finding Somebody To Relate With
56:06 A Better Therapist
1:03:10 Level Of Empathy
1:12:16 Emotional Challenges
Transcription:
Candice 0:00
I would oftentimes have to by three, four hours in, close the door, turn the lights off, and sleep in my classroom with the lights turned off and hope that no one came to the door.
Candice 0:13
Because I just couldn’t go one more minute. Teaching, looking at a computer looking at print, my brain was just hurting. And I’d set an alarm and about 25 minutes later, the alarm would go back off and I would wake up and I would get a cup of tea and I would go about the rest of my day.
Intro 0:41
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill 0:54
Hello and welcome to recovery after stroke a podcast full of answers, advice, and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future.
Bill 1:05
I’m your host three-time stroke survivor, Bill Gasiamis. After my own life was turned upside down and I went from being an active father to being stuck in hospital. I knew if I wanted to get back to the life I loved before, my recovery was my responsibility.
Bill 1:21
After years of researching and discovering I learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve.
Bill 1:39
If you enjoy this episode and want more resources, accessible training, and hands on support, check out my recovery after stroke membership community created especially for stroke survivors and caregivers.
Bill 1:52
This is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence into recovery after stroke.com To find out more after this podcast. But for now let’s dive in to today’s episode.
Introduction – Vision Problems After Stroke
Bill 2:09
This is Episode 156. And my guest today is vision and reading therapist Candice Vogel. Somewhat Ironically, the stroke of Candace experienced caused her the same kind of vision problems that she had been working a lifetime to help others overcome.
Bill 2:30
Candice Vogel, welcome to the podcast.
Candice 2:33
Thank you for having me.
Bill 2:35
It’s my pleasure, thank you for reaching out and being willing to share your story, I know that it’s taken you some time to get ready to be able to share your story more publicly. And I think it’s a big step in recovery, because it does help to get things off your chest and put it out into the universe and see what comes back. Before we talk about your journey. From here on, tell me a little bit about what happened to you?
Candice 3:11
So it was a Sunday on January 12 2020. I was with my husband at my parents home. We were meeting with a contractor they had had some water damage. Prior that weekend, we had done a lot of trying to get water out of the home.
Stroke and Vision Loss
Candice 3:31
And looking back it was a stressful situation. But I certainly didn’t expect a stroke to come out of it. I it was early in the morning at 10am. And as I was listening to the contractor speak and looking back and forth from my husband to my parents, and their reaction and taking in the information, I noticed what I thought was just the sun in my eyes, or my hair in my eyes and kind of brushed it aside.
Candice 4:02
And as I looked closely at my husband from across the room, I noticed that there was a very sudden loss of the vision and what I thought was just my right eye. He describes the look on my face as sheer panic. And he and I left the room and went to the laundry room and my parents home.
Candice 4:25
And I was you know, this close to him. And as I looked at his face, to me, what I thought was just my right eye, the left side of his face was completely gone. As if there had been a line drawn from the top of his head right down completely the center of his face.
Candice 4:49
It wasn’t dark or black. My husband had actually had a torn retina a few years prior and we were concerned that it was something like that and he kept out Asking me, what does it look like? And it was just completely blurred out.
Candice 5:04
I describe it as white like looking through an opaque shower curtain almost. And it was gone. And I was extremely frightened, but truly believed that it was an ocular event something that was, you know, wrong with my eyes, not a neurological event.
Bill 5:29
Is that the only symptom that you had?
Candice 5:31
Yes, I was the only symptom. So when I think about signs of stroke and the FAST acronym, I had no facial paralysis, I had no paralysis, no facial drooping, no problems with my speech and language, nothing cognitively.
Candice 5:47
It was just this sudden loss of vision, or this blurred vision. It was a Sunday I called my optometrist and, in December, the month prior, I had had an episode, which they called an optical migraine where there’s almost like an aura or you’re looking through a kaleidoscope.
Candice 6:11
And that was almost exactly a month prior. The doctors say now that they really don’t think that it had anything to do with my stroke. But when I called the doctor on Sunday, he said, I really believe it’s another optical migraine, I want you to lie down, rest, you know, take it easy, which was great advice.
Candice 6:33
And so that’s what I tried to do. Again, I was at my parents home, not in my own home. But it was a home that I grew up in and carefully made it to my bedroom. At that point, I started to get a headache and felt nauseous. But again, very much like migraine symptoms, kind of tried to just sleep throughout while my husband was finishing up with my parents.
Candice 6:59
As soon as he could, he came to get me and we just decided to drive home. Our home is located about 10 miles from my parents house. And the drive itself was the worst thing I’ve encountered in a very long time, the movement of the car, the speed, even though my husband wasn’t speeding, just the feeling that I had as if I were on a roller coaster and I were upside down.
Candice 7:30
Again, continued to feel so nauseous, my head was pounding, got home, and I really was unable to walk into my home. upright, I kind of hid behind my husband, my children were sitting on the sofa, and we’re concerned but I really felt like this is the worst migraine I’ve ever had. I need to get to my bed, we need to close the blinds and I need to sleep. You know, I still no other symptoms of stroke at all. And I at that point didn’t know that the vision that I was experiencing or that was related to stroke, either.
Bill 8:13
How could you I mean, you’ve never met anybody who’s had a stroke probably. And if they did, they didn’t have a vision issue with it maybe and they were probably older and all the things that we associate stroke to wouldn’t be you. And how old were you at the time?
Candice 8:30
53 I was training for a half marathon with my daughter. People would describe me as very health conscious. I’m very aware of my body and really felt like at that point in my life I would have known if something you know traumatic was happening. And I didn’t and honestly looking back at that time, there are times when I struggle with the feeling of I should have known.
Candice 9:00
I should have known that this wasn’t right, I should have gone to the hospital. And and I didn’t I treated it as if it were a migraine and honestly trying to you know my my family was helping me with ice pack on the front of my head heating pack on the back of my head. And I really feel like the amount of time I took to sleep.
Candice 9:26
Kind of because my eyes were closed I didn’t even realize I was still suffering with the vision issues. Sleeping was a way to escape from the pain. And, from you know, I wasn’t aware of the loss of vision or that it wasn’t coming back.
Candice 9:46
So I kind of just hold up like you would with the migraine and stayed in bed for most of the day and about this five-hour mark. I woke and actually felt like I could get out of bed like I was hungry.
Candice 10:05
My son made me a grilled cheese sandwich, I came into the living room, the other big concern for me at that point in time was the light sensitivity and the sound sensitivity. My husband and my son were watching television, it was much too loud for me, visually, I asked for the lights to be turned off.
Candice 10:28
But again, looking back that presented as a migraine to me. So I went to bed that night. I’m a school teacher. I’ve been a teacher for for 30 years. And ironically, I am a reading specialist. So I help children who struggle with reading and the visual processing skills that they struggle with.
Candice 10:57
So the next day was a Monday and of course, I had to go to school and said to my husband, I know I can’t drive but you have to take me to school I, I greet children as they arrive, I walk children to their classroom, it’s Monday morning, I have to be there. So chose not to put myself first.
Intro 11:16
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. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?
Intro 11:32
Doctors will explain things that obviously, 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.
Intro 11:55
It’s called the 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, recovery after stroke, calm and download the guide. It’s free.
Candice 12:18
I showered and got dressed and tried to look in the mirror at my face and get ready and went to my husband and my daughter and said do I look okay? My visions kind of coming back, but I still had these deficits.
Candice 12:32
And he drove me to school, and as I walked about and did my daily activity, as I did every single morning in you know, smiling and getting children in and out of cars and greeting them.
Candice 12:51
I felt I just kept saying I feel off, I just feel off, I still had a headache, my vision was still not good. And I would notice some balance issues and just felt off. So after about 5-10 minutes, I said we’ve got to go to the eye doctor.
Candice 13:16
When he had said come in at any time. You don’t need an appointment, come right to my office. And so that’s what we did. And honestly, that is the point where I really started to feel concerned that something was wrong. But that was the 24-hour mark basically, about almost 24 hours to that point.
Candice 13:38
Arrived and he was wonderful. And he ruled-out a torn retina, any kind of optical issue. And he said I really want to do some further testing with you. And he did the it’s a test a visual test of your peripheral vision.
Candice 13:56
Basically, you look at the screen and you click a button every time you see a white flash of light. It’s a very long test. And it proved that I had no peripheral vision left at all, it was completely gone.
Candice 14:18
And when he showed us the results, he said I just need to let you know that this is not an ocular issue, your vision, your eyes, I had 20-20 vision at that point and maybe needed a reader a cheater, you know to read in from printed information.
Candice 14:35
He said this is a neurological event that has already happened and you need to go to the emergency room immediately. Do you know a good neurologist? And I didn’t know a good neurologist.
Bill 14:50
Who does?
Candice 14:51
At that point, I really still never thought stroke immediately thought it’s either an aneurysm or it’s a tumor that’s pushing on an optic nerve or something like that. That’s where my head went.
Candice 15:06
And again, you know, to back up, my mother in law had had a stroke in 2015. And so again, she was in her 80s presented itself with this call issues, some speech and some cognition.
Candice 15:20
My grandfather, you know, in his 80s, had had a stroke. But like you said, other than that, I just didn’t think that at 53, that I would go into the emergency room and be diagnosed with a stroke. So that still never came to mind when we were on our way to the hospital.
Dealing With The Symptoms
Bill 15:40
And fair enough, I mean, there’s, it’s very fair enough would it make you feel better if I told you that I had numbness on my left side for seven days. And instead of going to an eye doctor, I went to a chiropractor, because I assumed that the numbness on my left side was as a result of my spine.
Bill 16:02
Because of the kind of work that I did, and because of the way that I was always at the chiropractor never really paid attention to his advice of be careful lifting this and stretch and do this and do that I never paid attention to him.
Bill 16:15
So I was just going there to get him to fix my problems with my back and what I used to do. So I just assumed the same thing. It was a chiropractic issue, the first test he said, okay, it’s not really obvious where the stuff is coming from the numbness is coming from. It was four days after I first noticed the numbness.
Bill 16:38
And then I made another appointment to see him on the eighth day after I noticed the numbness. And he said to me, whatever is happening to you is not related to your back. He didn’t say it’s neurological, but he said, you need to go to the hospital to get them to check it out.
Bill 16:58
And I said to him, I’ve got to work tomorrow, like I can’t go to the hospital. I got a really important, massive big day at work, and there’s no way I can miss it. I went home. And then my wife said, what what did the chiropractor say? I told her, he said, I should go to the hospital.
Bill 17:15
And she said, why didn’t you go to the hospital? Because I got to work tomorrow. And then she said, look, I’ll take you to the hospital, they’ll tell you there’s nothing wrong. And then you’ll get to work tomorrow and everything will be fine. I agreed with her. That sounded like a great idea.
Bill 17:30
And of course, when I got there, they found a bleed on the brain. And there was something seriously wrong. But like you, I couldn’t, have imagined in the world that there was a neurological issue A in my head and B, I’d never met any single person that had a neurological issue, that was my age, younger or even older, I’d never ever met anybody.
Bill 17:55
So I had no reference point to go. It’s similar to what that other guy said or what that other gal said, I never had some way to create a story that perhaps this was more serious than I thought. So I did that, and then even six weeks later, when now I knew I was unwell, I had another bleed, and I avoided going to the hospital again, because I was at work against doctor’s orders.
Bill 18:26
And I needed to finish this particular job before I made somebody drive me to the hospital. And that took four hours the second time to get to the hospital. And when I got to the hospital, I didn’t know my own name, I couldn’t recognize my wife, It was really serious, right?
Bill 18:45
So what we’re discussing is not uncommon in lots and lots and lots of stroke survivors, especially the ones that don’t get the symptoms that are associated to the FAST message because even if they’ve heard the FAST message, they do what you do they look for the closest similar person that they knew that had an issue that sounded like theirs.
Bill 19:14
And like you did you went straight to your husband’s ocular issue with his nerve. And migraines are such a massive thing in the world. They’re very, very common. And it presents like every other migraine you’ve ever had fair enough to assume that it’s a migraine.
Bill 19:39
The thing about it is like how can you have such amount of data to go back to and reference and then also, to make matters worse, you put other people first it’s the other thing that we do, it’s what you said it’s like the children need me.
Candice 20:00
That’s what I’ve always done. I’m an expert at putting everyone else first. And myself at the very bottom. I’ve done it, you know, for a very, very long time. So yeah, and so looking back on things, of course, being at a point now year and a half out and reflecting that I need to be able to release myself and give myself a little bit of grace for not, it seems so stupid now to not have known that something was severely traumatic.
Candice 20:33
And, that I should have addressed it in a different way. But again, I had no point of reference. And I do know now that I’ve recently in my education through this journey, have heard that they’ve added the BE FAST, B for balance, and E for eyes.
Candice 20:52
But that’s very recent. And I don’t even know that people know enough about the FAST acronym on its own in relation to stroke. But especially with this new, let’s add the B E, so that people will know that I do appreciate it now.
Candice 21:08
But so I live in a small rural community, and we were about 40 minutes from the hospital, my sister in-law worked at the hospital that we decided to go to and so she went ahead and logged me in so that they knew that I was coming in the ER, which made my the travel there knowing that they were going to receive me and get me in quickly, which is exactly what they did.
Candice 21:36
And my hospital is in St. Louis, Missouri. And so, upon arrival, they got me right into the emergency room and immediately did a CAT scan. I was really suffering from a pretty significant headache at that point. But they did the CAT scan and said, you know, we’ll just kind of see what happens.
Candice 22:02
And if it warrants an MRI, that’ll be the next step. And so, of course, it warranted an MRI. And when he came back, he did say, to the three of us, myself and my husband and my sister in-law, that it appears that it was a stroke. And I just, you know, again, couldn’t comprehend that that’s what they had found.
Candice 22:24
But and then he said, you’re going to have to have an MRI and I’ve had MRIs in the past, and I was more nervous and scared and apprehensive about having to have an an MRI in the head and neck because you have to be in that little cage. Than I was about just hearing that I had a stroke.
Ischemic Stroke
Candice 22:46
And I started to cry. And he said, Oh my gosh, what is wrong and I said, I’m just really bad at an MRI, I’m really worried about the MRI. And of course, knowing also that I was internally afraid of what the results were going to be and everything that he had just told me but he had to give me something to take so that I could because it was an hour and a half long MRI with contrast and everything had a neck to check everything but and so I had that and it was an ischemic stroke.
Candice 23:21
So there was a clot that formed and it was it occurred in the occipital lobe of the brain. I had never heard of the occipital lobe of the brain. And in again, in my education and research through this journey. I’ve learned a lot about the occipital lobe. And many people think that it is just related to like color and shape and but honestly the occipital lobe, you know, it’s located at the base of the brain. It’s a you know, it’s very large, and it is responsible for all of the visual information that we take in all forms of visual information.
Bill 24:09
So it says on Google, it says the occipital lobe sits at the back of the head and are responsible for visual perception including color, form and motion. Damage to the occipital lobe can include inability to recognize the movement of an object, difficulties with reading and writing. Does that sound like you?
Candice 24:31
Yeah, and it’s everything. So for me, it’s visual processing, visual perception, visual memory, figure ground depth, perception distance, and primarily again, being unable to read. I was completely unable to read and I had no peripheral vision.
Candice 24:57
So it says if you have blinders on and if someone were standing next to me, I could feel them and sense them, but I could not see them. Once I returned home from the hospital part of my husband, you know, he would hold up. Okay, how many fingers am I holding up, just off to the side, completely gone can’t see any of that.
Candice 25:26
So I was in the hospital for three days. I had every test that they could possibly give vials and vials and you know, pints and pints of blood to draw every heart and cardiac test that I could, that they could give me, the bubble test, the echocardiogram and into scopic at echocardiogram to look at the heart from the top, you know, through my throat and on top.
Candice 25:58
Every single test was negative, every test was negative. So my stroke is cryptogenic. And after three days, and all the MRIs, and all of the cardiac testing and all the blood, even to test for something like an autoimmune disease, or a clotting disorder, I went in and did not have high cholesterol did not have high blood pressure, had no risk factors of stroke.
Candice 26:26
After the three day mark, the doctor came in and said, you know, unfortunately, it’s cryptogenic. And we will probably never know why you had it. Which is frightening. It’s frightening to have a stroke anyway. But for me, if they would have said it was your blood pressure, that’s something that I could control.
Bill 26:50
You could address it.
Candice 26:52
I could address it and and easily address it, but to continue to hear, we have no idea why it happened. And then at the same time, say, okay, you know, you’ve been released, there’s nothing more we can do for you Good luck. Basically, I passed every physical therapy assessment that they could give every occupational therapy, assessment, speech and language, cognitive evaluation, everything.
Candice 27:23
And as thrilled, as the therapists were to say, Oh, my gosh, you’re great. I was still left with these huge visual deficits. You know, the evening that I was admitted, my husband left the hospital and my sister in law stayed with me and my husband left the hospital to go and get some things, personal items for my stay, and, of course, had to tell my children and my parents.
Candice 27:52
Which was very frightening for him, because, of course, I had just been admitted it was all we knew at that point was I’d had a stroke.
Bill 28:01
How old were the children ?
Candice 28:02
My daughter, Alex’s 24, and my son was 18, at the time, at senior in high school, and my daughter is was in college, and then to tell my parents, you know, who are in their 70s and 80s, that their daughter is in the hospital and has had a stroke and share with my you know, my brothers and friends. And it was, just bizarre to share that information.
Bill 28:31
We tried to lie to my parents about that. I told my wife, so I was admitted to hospital late on a Friday evening. And I’ve been lied to my wife, because they did the CT scan, they revealed the blood clot. And because it was about 11pm, when they got back to me with the news, and I had sent her home to be with the children who were at the time where 14 and 11.
Bill 28:57
I said to Christine I said, look they haven’t done a scan yet. And they’re too busy. So they’re gonna do it tomorrow morning. And they just want me to wait until the morning. So do me a favor. When you wake up in the morning, drop off the kids and mom and dad’s.
Bill 29:15
But don’t tell them where I am. Just tell them that you need the kids looked after. And then come to see me at the hospital. And then she came to the hospital. And that’s when I said to her look, I wasn’t honest, I didn’t tell you last night because I wanted you to sleep or something like that.
Bill 29:33
And in fact, they found a issue on my brain and you we need to do another scan and an MRI and work out what it is. But of course by then she wasn’t able to really properly be dishonest to my parents. They could tell that she was not telling the truth. So we kind of let the cat out of the bag, but that was a really hard conversation to have with anybody.
Candice 30:05
Yes. And, of course, I didn’t have to have the conversation my husband did. But and then my children came, he brought them to the hospital. And of course, I was still having tests done. And they were doing a bubble test. And I was so sick from the pain medication that they were giving me for my headache.
Candice 30:28
My husband stayed with me the entire time, the three days that we were in the hospital and my children came to visit when they could. But again, after the three days, it was determined that it was cryptogenic.
Candice 30:42
And they were social worker came and said, Okay, we’re going to release you to go home, they did put a heart monitor on my chest that I would wear for six weeks to monitor in case that was an undiagnosed AFIB.
Bill 30:44
Atrial Fibrillation.
Candice 31:00
Yes. Which I have never had any issues.
Bill 31:03
Or maybe did they also tried to rule out the hole in the heart the PFO?
Candice 31:10
Yeah, and that’s what the bubble test will do. They put a fluid or water, it’s not water, saline into to see if it bubbles, and if it does, then everything was clear. So I did go ahead and have a heart monitor, and I was to wear it for six weeks. And so I did leave the hospital with that.
Vision Problems After Stroke
Candice 31:32
The other thing that we had to really fight for and advocate for was addressing my vision, I really feel like that my end my you know, reading in particular, because it was as if I was just going to go home. And that was going to be it. As a reading specialist, which is my job, I oftentimes encourage parents to take their children for vision therapy. And we had to advocate for that for for me now.
Bill 32:04
So you left with the same symptoms, and there was no addressing of them?
Candice 32:08
Nothing, nothing. And so we asked for a prescription for vision therapy, before I leave the hospital just like you would for PT or honestly, they would prescribe that if I had left side paralysis, they would prescribe, you’re going to do physical therapy, you’re going to do occupational therapy, you’re going to do speech, language, cognitive therapy, even cardiac therapy, if you had a heart attack, get therapy for cardiovascular therapy.
Candice 32:37
I left with nothing unless you know, because we asked for it. And they were very, they’re like, we don’t even know a vision therapist in our area. And of course I did, because I recommend parents take their struggling readers. So there are three centers in our area. And they I don’t want to say reluctantly, but you know, we were pushing for it.
Candice 33:02
And my husband had done tons of research in the three days that we were at the hospital, and said that that was my best course where recovery was to get vision therapy, it’s neuro vision so again, I tried to explain to people, this is not an ocular issue, this is a neurological issue. It is how my brain perceives visual information, and makes sense of that. And that’s really difficult for people to understand.
Bill 33:32
I mean, they had the CT scan, they have an MRI scan that proves that something was happening in your head.
Candice 33:38
Neurologically, it has nothing to do with my eyes. It is how the brain interprets all and 80% of what we take in is visual information on a regular basis. 80% of what we take in regularly is visual information. And my brain could not make sense of visual information.
Bill 34:02
I think this is gonna be a really important part of this interview. Because that is one thing that people get stuck with, they leave hospital, they go home, and then there’s there’s that massive gap of okay, what do I do now? And I was one of those people I even missed out on the opportunity to have neuropsychological assessment when I left I had massive cognitive issues after the second bleed.
Bill 34:25
I mean, it started off with not knowing my own name and not knowing who my wife was. And then I couldn’t type an email, I couldn’t drive. I couldn’t finish a sentence. I couldn’t remember who came to visit me. And that was like that for about nine months, 10 months and nobody suggested, you need to have a baseline of where you’re at.
Bill 34:50
And then you need to know how the recovery is going in the future. You need to be able to look back and determine how far you’ve come.
Candice 35:01
And that’s hard to see when you’re going through it. It is hard to do that. So we left the hospital being true advocates for myself. And that is something that I am very passionate about is I’ve always been an advocate for children. And now I feel that I need to be an advocate not only for myself, but others who who suffer with stroke or whatever health crisis they may encounter.
Candice 35:39
Because it was what was best for my recovery, it was the only way and and I am such a firm believer in my I ended up going to two different locations for assessments, visual assessments, neurological vision assessments, and ended up with a woman who designed so she did my initial assessment and to see where my strengths and my weaknesses were.
Candice 36:04
And it was, so it was so affected that you know, percentile rankings go from zero to 99 percentile. So the 99 percentile is outstanding. And, and then age equivalencies, so for some of my visual perception and my skills, when they initially tested, my highest area was visual memory. And it was only at the 50th percentile, my lowest area was at the 5th percentile. And the age equivalent for that was nine years of age.
Bill 36:47
So you had a lot of ground to make up before you go anywhere near being where you were at the start of the.
Candice 36:54
And those numbers are what I deal with, I do a lot of testing on children and visual issues. And so I couldn’t read the report, obviously, because I couldn’t read anything. I couldn’t read a text message. I am a researcher and a questioner by nature, not only because I’m an educator, but that’s just how I process information.
Candice 37:18
And so I couldn’t come home and research on the internet, I couldn’t check out a library book, I couldn’t go to the bookstore, because I could not read any visual information. I couldn’t take in anything. And I have always known I was a visual learner, but especially after this process, because then I had to become an auditory learner.
Emotional Recovery After A Stroke And Vision Loss
Bill 37:44
I’m curious, how do you deal with that emotionally? Like you’re talking very clinically, right now, there had to have been an emotional aspect to this for you most stroke survivors say, you know that it was very difficult emotionally.
Bill 38:04
And what most stroke survivors do is they focus on the physical recovery, because that’s the obvious recovery right? So you’re also then going I need to focus on my visual recovery, because that’s the part that is obviously missing. But how does the emotional part of it play out in your stroke?
Candice 38:22
I think that the emotional part, the thing was, it was so ironic. It was so ironic that I had this stroke and where it occurred, and what my line of work is. And again, I’m always advocating for children who struggle with reading and not just that they don’t like, they haven’t found a book that they like.
Candice 38:44
Honestly, with many, many children it’s a processing issue, it’s how their brain is processing, you know, printed information. I have BD reversals. Now. It’s as if you know, you think about people who have been diagnosed with dyslexia, I transpose letters from the end of a word to the beginning of a word, I look at a line of print, and it’s gone there are only three words on that line of print.
Candice 39:11
I have to use tracking, I have to use all of these modifications, but emotionally, I think that I felt just like any other person who suffers a health crisis I had complete and utter fear that it was going to happen again. And that next time, it would be debilitating, or it would kill me.
Candice 39:36
I had so that fear, the fear of the unknown. You know, in the hospital, I told my husband, well, I’ll go back to work. I’ll go back to teaching just even if it’s half days, in about four weeks, you know, just minimizing what had happened, and I think for me minimizing it because it wasn’t physical. It wasn’t a speech language, I need to recover from this very quickly.
Candice 40:03
Because this is not like when my mother in law had her stroke, and she had to learn how to, walk again and use her fine motor skills. And so I was telling myself and I believe minimizing how the severity of it and comparing it to other types of strokes and then probably perhaps mine was just not so bad.
Candice 40:29
But fear and uncertainty and then the irony of it all, and then feeling that lack of that sense of being out of control, because I couldn’t figure out why it had happened. So I had no control. So for me, then it was, you know, a huge change in my diet was already really good. But that’s the direction I went, because I could control my diet, I could control going outside for physical movement.
Candice 41:06
With my stroke, and I hear this on your podcast with people all the time. Mine is very hidden. It’s a very hidden disability, you can’t see that I have left side paralysis. You can’t see what’s going on in my brain. So even a year and a half out, oh my gosh, three days after I got home from the hospital, people would come to visit.
Candice 41:27
They’re like, well, you look great. And you sound great. And they had no idea what was going on neurologically in my head, the headaches, the fullness, the ringing in my ears, all of the neurological symptoms that from a brain injury that we all experience. I struggled with all of that. And on top of it, I had the vision.
Bill 41:53
So right now, what are you left with? What do you still have?
The Post-Stroke Deficits And Therapy
Candice 41:57
So I am a year and a half out. I did vision therapy, even though again, it wasn’t covered. I had to fight. And I had to write letters of appeal. My doctors wrote letters of appeal for me, vision therapy is not covered.
Candice 42:17
And again, my fight was and I’m advocating for the fact that this is a neurological issue. if I needed PT they’d write me a prescription if I needed any of that. But they would not cover it, insurance would not cover any vision therapy.
Bill 42:34
So do you still have vision issues?
Candice 42:38
Oh, yes. Now I’ve made huge progress. But I’ve made huge progress because of the work that I’ve done. So I started therapy in January about two weeks after my stroke. And I continued that for eight. Basically, eight months, I did vision therapy in my home five days a week, every single five days, I would work for roughly an hour on my own with the protocols that had been provided.
Candice 43:13
And then I would go see my therapist, one day a week for an hour. And every time that I thought oh, I have that this, she would give me another activity. And that would prove to be that much more difficult. And I would feel like I don’t have this simple things like throwing a beanbag into a bucket or a basket that she held, being able to touch my nose and touch it that on a on a poster board. My midline had shifted, we all have an imaginary midline.
Candice 43:46
And my midline had shifted so everything was off. I had no figure ground. So you know, the I Spy Books that maybe your boys had, where it’s an it’s all of those pictures and you’re supposed to find the shovel? I couldn’t do anything like that, because visually, I could not distinguish between all of those shapes.
Candice 44:10
I did a lot of large print crossword puzzles, large print, word searches. mazes that you would give a kindergartener, you know, with a crayon or marker, and I couldn’t stay in the lines. And all of that was I had to do so much work. I couldn’t drive obviously, because of my visual deficits.
Candice 44:36
But so now a year and a half out, I am able to drive short distances, I don’t drive at night. I don’t like to drive in the rain. But I really thought that I would read and read well before I would drive, and that isn’t the case. And it’s because when you drive, you’ve got all of your vision to use and when you read, it’s just what is right in front of you.
Bill 45:01
So you’re a visual learner, the amount of your identity that is stuck around vision, obviously because of the work that you’re doing, and because of what happened to you, is pretty extreme. I’ve never come across anybody who will talk about vision to the extent that you can.
Bill 45:20
And it’s fascinating that you had to have that condition to you. I’m going to chuck woo woo comment out there, maybe the universe is telling you something about the next level of your learning, of your level of understanding of what it takes to perceive information.
Bill 45:42
So if you’re struggling reading, and that has been one of your biggest skills and teaching people how to read and overcome reading challenges. Do you get a lot out of listening to books because I have always struggled to read, I just never enjoyed it. I was boring, especially when you’re looking at black and white words, or black words on a white page. And I get a lot out of listening to books. What’s that like for you?
Candice 46:14
So it’s the exact opposite. I have had to really learn to train myself to be an auditory learner. I just recently listened to a podcast that you did. And you mentioned I can’t think of her name. But the book was My Stroke of Insight.
Bill 46:36
Jill Bolte Taylor.
Candice 46:37
Yes, yes, yes. So in when I came home from the hospital, all I wanted to do was soak up all the information I could about stroke. And again, I couldn’t went to the bookstore with my husband, who was very dear and kind enough to say, what about this, and there’s really not a lot of great books out there, honestly.
Candice 46:53
And I didn’t feel like it pertained to me and my individual story. But, we found that she had a book at our library, which had five CDs that you could listen to. And so my husband checked out the book, and I listened to the CDs. And that was my first education into what I was going to experience had experienced.
Candice 47:21
And the first person that I could connect with, as far as her story goes. And I had to do that auditorily. And all I wanted to do, I would listen to it. But I just wanted to look at the book and follow along. And I couldn’t do that. So turning to audible people were like, get audible get audible.
Candice 47:42
I can listen to it. It’s just not my mode of learning, but I am getting better. And again, in my email I mentioned to you your podcast, being able to find your podcast, and listen to people’s stories was transformative for me. And the first time and I really wanted to go back and be able to reference this young man, the first time I ever heard anyone on your podcast speak to a visual issue like I have.
Candice 48:12
He was a young man, maybe in his 20s. And he was at work one day, and he had this issue with his vision. And my husband and I were outside and I had to stop it. And I said, Oh my gosh, there’s someone on the podcast, who has vision issues like me. And that was just everything for me. It truly was everything for me.
Finding Somebody To Relate To
Bill 48:37
Why was that everything for you? How is somebody else having vision problems good for you?
Candice 48:42
I know. And it’s the same thing. So my hope is that my story and sharing this with you today will help somebody, whether it’s a caregiver, or someone who’s experienced it, because I was able to connect and identify. That’s why that helped me. I was able to identify with someone else who had experienced something like me.
Candice 49:03
Because I didn’t know anyone every stroke story that I heard or read about or I wasn’t able to read it, but you know, my husband was sharing with me, everyone’s was and they are all different. It doesn’t matter. neurologically, if you’ve had a neurological event or not all of our stories are different.
Candice 49:23
But that having someone who had their vision affected even though it sounds terrible to say, Oh, I’m so glad that he had that stroke and it occurred there and affected his vision that resonated with me and and helped me.
Bill 49:40
You’re not saying you’re glad you found that because you’re glad they had a stroke. You would prefer not to have ever found a stroke podcast you would prefer never have anything in common with people who have had a stroke and you prefer nobody ever had a stroke.
Bill 49:54
So I totally get that because it was the podcast that made me feel Okay, normal. I don’t know what the word is. But I started it because I didn’t know enough people that had overcome what I was going through. I had been through what I went through, and no one understood me. So now I have more than 150 people who understand me, that I’ve spoken to directly. So it is some kind of relief that I’m not alone and I wish none of us were in this group.
Candice 50:28
Right. And I hear you say that, and it is. So when I felt when I came home, and people in my family had to go back to their reality. I felt so isolated, and so alone. And again, I couldn’t even watch television to distract myself. I couldn’t get on the internet. I couldn’t research and Google, I was supposed to be resting and sleeping and I know that now.
Candice 50:53
But I do believe that I pushed myself through so that I could feel some sense of normalcy. I couldn’t drive. I couldn’t, you know, that independence was taken away. And at the same time, again, I still find that I minimize my stroke, because I’m comparing it to other people.
Candice 51:15
And I think, well, it’s not, you know, it’s not as bad as but then I’ll hear someone who has a physical issue, and they say, Oh, my gosh, but at least I could read, you know, I’d never be able to not read. So that’s something that I chuckle about. And I think that that’s interesting that all of our perspectives are so different.
Bill 51:36
Any stroke is a bad one. Any stroke is not a good thing. And, that’s unfortunately, the way that we judge lots of things in life is how it looks on the outside, you know, there’s very little reflection on what’s going on in the inside. And people don’t know enough to ask the right questions about what’s going on on the outside, you know, they don’t know about neuroplasticity, like we become so aware of and we learn about.
Candice 52:04
I’m an expert about neuroplasticity and I am as such a firm believer, I was someone who every time I went to a neurologist appointment or a neurological ophthalmologist, I and you speak to this all the time. Is that timeline, that recovery timeline, and I’m against the idea of a recovery timeline.
Candice 52:28
I feel very strongly about that. Are there times when I feel like I’ve hit a plateau? Yes. But then I also believe, okay, what can I do now to get Oh, maybe it’s just a plateau. That doesn’t mean that my recovery has stopped. I believe that I will continue to build new pathways and reconnect and heal my brain. Sometimes I think all my gosh, it’s been a year and a half. And other times in the same breath. I can say it’s only been a year and a half.
Bill 53:03
Yeah, that’s right. Yeah, that’s exactly right. And that’s the thing, when I’m coaching people to get through this is I really tried to get them to say, do not place a timeline on it, you’re sure to be disappointed with stroke. Unfortunately, if you’re basing your how far you’ve come on the data that you get there, that’s going to be disappointing.
Bill 53:23
Just don’t do that if you can avoid it, you know. And then the other thing I like to tell people is, is that, you know, with neuroplasticity, you can adjust and overcome, even deficit even if you’re not walking correctly. It’s still neuroplasticity that’s helping you become more mobile or find a way around that inability.
Bill 53:43
So even with your vision, if it doesn’t get back to 20-20 and have all the peripheral vision or whatever. It’s neuroplasticity still finds a way to help you get along or get around with the way your vision works now and the brain adjusts, the body adjusts and everything eventually adjusts.
Bill 54:05
It’s not to say that it’s the same or perfect or back to normal, it adjusts and you make do now, I don’t know whether that’s comfort enough for some people. But like that’s, what sometimes we’ve got to hope for we’ve got to hope for finding a way to overcome the deficit in a way that still gets an outcome which is supportive.
Candice 54:27
So I do use a lot of modifications. And again, these are modifications that I would put into place with a struggling reader. You know, I would suggest these things to teachers in the classroom. I would suggest these things to parents I have to use magnifiers line guides to help me go line by line.
Candice 54:48
It’s really important to me, I have to not get lost on a page. I have to practice a lot. But if I were just unable to Say, you know, just pick up a magazine and read it. I can’t pick up a textbook and just read it. It takes me a lot of time on a computer, I have very large font size, I have a colored cursor that is huge.
Candice 55:17
I use a lot of text to speech. Because the amount of neurological fatigue that I feel in just reading three emails where I would have just knocked that out in my classroom on a regular basis, it takes forever. So modifications highlighting text, as it’s read to me, had been vital. For me getting back to the things that I was used to doing before.
Bill 55:45
I’m curious, so the one of the reasons Jill Bolte Taylor is so special, is because she’s a medical person that’s had a stroke, and she’s applied her craft, to stroke recovery, because it was ironic for her as well. She was researching the brain because her brother was unwell.
A Better Therapist After The Stroke And Vision Loss
Bill 56:06
And she wants to understand how to support people with neurological conditions like schizophrenia and that type of thing. So you sound like, you’re going to be a better vision therapist, because of you experience, does that resonate? Is that, right?
Candice 56:30
It does. And people say to me all the time, I can’t believe that you are, you know. So just to fast forward a little bit I stayed home this, that my stroke happened in January, and I stayed home through COVID. And you know, secretively, I say that I was not thrilled with a pandemic and a shutdown.
Candice 56:54
But for me, my family was home with me during my recovery, which just warmed my heart. And even though they were all doing their own things, whether it was schoolwork or our work, I could go outside in my garden or go tinker about. And we were all here. So that was during my recovery. I stayed home against everything in my being, I chose not to go back to school.
Candice 57:22
And again, I’ve been teaching for 30 years it’s what I do. And I felt as if I was disappointing, everyone, I was disappointing. My principal, my administrators, the children, the parents, I was letting everyone down because I was not returning. And that decision to do so was a heart wrenching for me. Initially, I thought, oh, I’ll go back half days, it won’t be a big deal.
Candice 57:51
And I had to, again, put myself first I would tell a friend to put themselves first I would say, you know, you’ve had a health crisis, all the things that you would tell a friend to do in a very meaningful way. But I would never tell myself to do that. But I did choose to stay home and I did not go back for that school year.
Candice 58:13
In August, once school rolled around again, even with COVID. And going back, we were full in person. I was bound and determined to at least try. I was eligible for retirement two years prior. And but and we talked about and and discussed a lot. But I decided to go back to school.
Candice 58:35
And a lot of people said, You know, I don’t know that that’s a good idea. Maybe you’re not thinking about your health. And all I had done was think about my health. But I had I at least had to try. So I went back it was very difficult. I I would oftentimes have to by three, four hours in close the door, turn the lights off, and sleep in my classroom with the lights turned off and hope that no one came to the door.
Candice 59:07
Because I just couldn’t go one more minute. Teaching, looking at a computer looking at print, my brain was just hurting. And I’d set an alarm and about 25 minutes later, the alarm would go back on off and I would wake up and I would get a cup of tea and I would go about the rest of my day. And I do feel like I pushed myself and there were times I would come home and just the look on my face. I would just have to go sleep.
Bill 59:44
I’ve got to say that I’m going to talk about that you say you push us up that is really important. I know. There’s a time when you shouldn’t be pushing it pushing yourself in stroke recovery.
Bill 59:54
But then there comes a time where you have to push yourself and you have to break through the barriers that you have set for yourself, either mentally, or a doctor has said for you emotionally, or you’ve got to get to those barriers, and you’ve got to push them. And you’ve got to see, what happens when I do? Do I suffer? Do I suffer and then recover a little bit? Do I gain some ground? Do I have a setback? If you don’t do that, you’re never gonna know.
Candice 1:00:21
Yeah, and I’m glad to hear you say that, because it validates because there are many times when I second guess and I’m like, I pushed myself too hard. I had, you know, my neurological ophthalmologist, who did my vision therapy said, I do not want you to get to the point where you redline and you, you push, push, push, push, push, and then you have a complete setback, because you’ve pushed yourself too hard.
Candice 1:00:46
But you’re exactly right, I had to determine I had to figure out on my own, what was too much. And then step back, some days, I would go and have a great day at school, and I’d be able to come home and have dinner with my family. And other days, I wouldn’t be able to function.
Candice 1:01:03
It came to a point then where I felt like for a long period of time, I was spending my weekend recovering, to get ready to go back five full days and do it over again and then put myself in this cycle. So I started taking half days on on Wednesdays just to break my week up a little bit.
Candice 1:01:20
And that really helped me get through the remainder of my school year. In February, I did announce my retirement, I think prior to stroke, I would have gone maybe two more years, but really felt that it was time. And I also know that I went out of my you know, career as an educator.
Candice 1:01:41
At the height of my career, I wasn’t a teacher who someone said, Oh my gosh, she really should have retired five years ago, you know, I wasn’t that person. But again, perspective, giving myself perspective, I had gone through this, I was finally putting myself first I had come this far, I had done all of these, you know, remarkable things in my recovery.
Candice 1:02:05
And so I did retire and then that was in May, with the end of my just just past May retired. And about two weeks later, I signed a contract to continue teaching part-time at a different school. So now I am officially retired, but I call it this soft retirement. And yesterday for the very first time I presented in front of an audience of other teachers, because I help teachers teach the best way to teach readers.
Candice 1:02:41
20 new peers colleagues of mine, and presented a full presentation on reading and what it will look like during the school year. And at the very end, I just ended it by saying on a personal note, and told the group of individuals that I had had a stroke, which was huge for me. And of course, immediately the audience is like, Oh, you know, they’re gasping and no one knows it’s very hidden.
Level Of Empathy
Bill 1:03:10
I’m gonna give you a little bit of advice first. But before I do that, and not advice that this is not me preaching to you how you should go about your life, but something that I think would be amazing in those presentations. But before that, I want to go. So I want to I want to ask you to reflect back on your time helping other people learn to read and overcome reading difficulties. Did you really, really deeply know how much of a struggle it was for them? Or did you have a good idea? And did this stroke condition really enhance your deep understanding of how they were suffering?
Candice 1:03:53
I felt like I did only because the training that I have received has in reading and helping a struggling reader has been centered on the brain and the processing. But and again, I’ve said it so many times advocating for children and teaching others about children who struggle was I really able to I feel like I was able to recognize and help analyze information and diagnose reading difficulties with children.
Candice 1:04:33
But to clearly feel what they were feeling with reversals and seeing words as they see words. No, not until I was and I shared that with a child, which was also very enlightening. You know, I was gone for a long time and my students would say, Where is she and when is she coming back and I have one student who I had worked with.
Candice 1:04:57
He was a third grader. When I had my stroke, and he kept saying, When is she coming back to school? And a friend of mine said, Well, she’s having some difficulty with her eyes. And he said, well, why doesn’t she just eat more carrots and come back to school. But the following school year, he brought an assessment down to me that he had done to share with me and he had done remarkably well on it.
Candice 1:05:22
And he just wanted to share his success. And I said, You know, I know how much you have struggled when I’ve worked with you. And I need to share something with you. Now, that issue that I had with my eyes, I now am a struggling reader just like you. And the look on his face was just priceless, of course, you know, he’s a child.
Candice 1:05:42
And I said, I know what you are going through when it’s difficult, I know that you’re not just giving up. And you’re not just avoiding the task, I understand. Because I’m unable to pick up a book and read it unless it is, you know, large print, or I have to read it and reread it and read it again.
Candice 1:06:06
Because now as a reader, instead of just relying on my meaning, which I have meaning because you know, I’ve been a reader for a very long time, it is so visual, because I’m trying demystify the code of print and text, and I read, and then I reread, and then I reread again, and to hear me read aloud is painstaking, because it is word by word.
Candice 1:06:36
And that’s all very, very new. So to share that with this group of individuals that I shared with yesterday. That’s a new platform for me to really talk to people as a person who struggles with significant visual deficits in reading. So it is again, ironic, and new perspective and, interesting.
Candice 1:07:05
So my hope for the future is that I can continue to share that message, you know, I’m not on Instagram, I’m not on Facebook, I would love I can look at pictures on Instagram, but I can’t read the caption. So even if I had an Instagram page, I talked to my daughter, you know, or my son about getting an Instagram.
Candice 1:07:26
I’m not able to navigate that world like others are. So I add a point where I’d like to share my story, as I’m doing with you, I don’t know how I will continue to do that, you know, I’ve never participated in a support group.
Bill 1:07:47
You’ll find a way. Now, that was gonna be my advice/idea me planting a seed in your head, it was basically what was going to be And, look, there are people that are completely blind that are using the social medias, and the internet and all that kind of stuff.
Bill 1:08:08
And, therefore, I, I feel like you’ll be able to find a solution to overcome that. And you can do video presentations, just short snippets that you can get somebody else to post for you. And then they could read back the comments to you. And you could respond to those comments in exactly the same way.
Bill 1:08:28
So if you if you really wanted to do that, there’s definitely a way to overcome it and it’s early, and I understand. So there’s no timeline on this. But it’s just me planting seeds. And the reason being is because my community wants to hear from people like you. Because you have both perspectives, you have the I used to help people in this area, and now I’m one of those people that needs help in this area.
Bill 1:08:52
It’s very rare, and it’s much needed. And your version of the way that you would tell the story would be completely different to a therapist who’s never had a vision problem telling the story and not to minimize what they do because you are one of them, and that’s amazing work.
Bill 1:09:11
But it is a completely different story when the therapist is also experiencing the same problem. So from that little perspective, if I can do anything and encourage you to do anything, is at some point in time, is find a way to share this gift that you have which is both insights of both ends of the spectrum.
Bill 1:09:34
And and you’re going to be able to make a massive difference in people’s lives and enhance your, your purpose. Uplift people take your career to the next level and become a real leader. Not that you already weren’t but become a real leader in this space.
Bill 1:09:49
And it’s bizarre and strange, but that’s really where it’s at. And I tell you because there’s gifts in Every stroke survivors stroke and one of the most amazing things that stroke survivors do, which I find bizarre, and I was one of them is that they immediately want to help other people. And that’s what we need.
Candice 1:10:13
Right. And that’s been my, my profession, you know, I’m in a helping profession. So I think it was just the time and again, telling the story and hearing it. Again, from that perspective of being a reading teacher is interesting. But, you know, I just, I, I just wasn’t at that point yet.
Candice 1:10:39
But I do feel like I am now you know, it’s interesting, one year after, you know, on my anniversary, I had told myself, Oh, my goodness, it’s coming up on a year, it’s gonna be a year, and I told myself to take the day off and take some time for myself.
Candice 1:10:56
And, you know, January 12, came, and I went to work like any other day and then realized in my classroom, Oh, my gosh, it’s January 12. And I was in tears. And I called my husband and said, I was going to take the day off, and I didn’t even realize it was today.
Candice 1:11:15
And in a way, I think that’s a good thing. But that shows, again, recovery and rehabilitation, I think, mentally and emotionally, that I wasn’t so fixated on the day that I was some healing that, yeah, it’s a day to day, I’m a projector into the future. Or I like to live in the past and mull over and overthink every decision that I made.
Candice 1:11:48
And why, you know, there was no answer to why had a stroke. So it must have been something I did myself too much stress or, you know, something, because otherwise, they would have found an answer. But I really am trying very, very hard. And it’s so difficult to stay present, and just live each day and do the things that I love to do and enjoy things that I can do.
Emotional Challenges
Bill 1:12:16
You’ll get better at that, it does take time to really learn how to become yourself again, and how to get out of the habits that you’ve had before. And, you know, we hear about the emotional challenges that stroke creates. So that can be a distraction from being present.
Bill 1:12:39
Because if stroke does anything it brings to light all the stuff you have never dealt with in the past. So that’s easy to distract you from the present, right. And then you actually have physical proper deficits that brings you into the present, but it brings you into a not so nice present, because I can’t do this, and I can’t do that.
Bill 1:12:57
So that takes it away. So then, you know, you might not have had a good night’s sleep. So that interferes with your present and being able to stay present you know.
Candice 1:13:07
I really struggle with sleep.
Bill 1:13:09
Yeah, right. And then, if you can’t be physical, and you can’t do all these things that struggles with your present, you’re looking for ways to distract yourself. But what does help to bring you to be present is doing a gratitude practice and practicing what you’re grateful for today.
Bill 1:13:28
Today’s been a shit day. But I am grateful for these things that lifts your mood, that changes your heart rate, that decreases the cortisol level in your body that actually starts training your brain to start focusing on what’s good about this, even though there’s lots that aren’t.
Bill 1:13:45
But then you you shift from being constantly focusing on stuff that’s not supporting, and you actually go into stuff that is supporting and you start to see the light at the end of the tunnel of this emotional roller coaster that we go on. So gratitude on a daily basis supports that and what is a gratitude practice?
Bill 1:14:03
It’s just, I do it at night before I put my head on the pillow or while I heads on the pillow. I’m grateful for the work that I did the people that I met my family, my friends, and whatever comes to mind that I’m grateful for which the true gifts in life and none of it is I’m grateful for the opportunity to do more hours at work or win the lotto or do any of that stuff. Like it’s all about just the simple things that come to us that are free, that really make life better if you focus on them.
Candice 1:14:13
And for me it was so again you said like the physical being able to go outside and just breathe in fresh air. Or, you know, I couldn’t go for a walk by myself because what looked like cracks on a sidewalk. Just normal cracks to you, to me looked like it was elevated and dangerous to walk on, my husband would have to get down with his hand and go over the crack and say, Okay, this is just a normal crack in the sidewalk.
Candice 1:15:07
But to me, it was scary because I thought I was going to trip and fall. So to get to a point where I could walk on a regular basis, that I walked four miles every single day with my dog. That was so therapeutic, I listened to podcast I did things that brought me joy, the simplest things that I could find that would get me out of my head, and really, truly help with that recovery. Because there’s just so much to recovery. It’s not just the vision. It’s not just the physical. There’s so much to the recovery process.
Bill 1:15:47
I call recovery three tiered. And in those tiers, there’s other levels. But in the top tiers, there’s the emotional recovery. There’s the physical recovery, and then there’s the psychological recovery.
Candice 1:16:01
Absolutely I agree with that.
Bill 1:16:02
And if you’re focusing on one, only, you’re missing out on the other two, but you can’t be just focusing on two and missing out on one. It’s not a complete recovery, you’ve got to focus on all three. And this is what happens when I asked people about where they’re missing out on.
Bill 1:16:16
And obviously, like, obviously, they’re doing the physical stuff, they’re recovering the stuff that’s important. And that’s why I asked you, well, that’s obvious. And that’s why I asked you about your emotional state early on in the pieces, because I could tell the first thing that you focus on is what’s missing? That’s, that’s obvious is my vision. If I get that back, things will be okay. But what if you don’t get it back? And then what? what are you going to do then?
Candice 1:16:42
Exactly. And I still, you know, I still get overwhelmed, I still have many moments where, you know, I just cry, not because just because it’s an overwhelming emotion. And I was a crier before my stroke. So I’m not just going to blame that on stroke, but it’s still an emotional journey, you know.
Candice 1:17:08
So and that’s just something that I’ll continue to try to heal and feel. But I am a firm believer also, that if I have those feelings, whatever those feelings are, if they’re a if it’s anger, or sadness or happiness, to feel it in the moment, but not let it hinder me from moving forward.
Candice 1:17:30
You know, again, a cryptogenic stroke, I could have been curled up in a ball and not wanting to leave my bed or leave my home because of that crippling fear of what if it happens again, and I don’t know why it happened. So I would have to make a list of things I can control and things I’m unable to control, and focus on that.
Bill 1:17:53
Yeah, focus on what you can control. That’s the perfect antidote to anxiety and it’s and depression. And that’s what mindfulness is, it’s doing in the moment what I can do, and doing that as best as I can. Because that’s a path to recovery as well. It’s not about, I can’t do that, and therefore I need to worry about what I can’t do, just do what you can do.
Bill 1:18:15
And then other things might come in the future, there might just appear one day, as being something that you’ve overcome that you didn’t realize you were overcoming, because you were focusing on overcoming whatever it was, whichever deficit it is, this conversation for me is quite fascinating.
Bill 1:18:32
And I’m really glad that you reached out and connected and made a point of talking about vision because even though I’ve touched on vision, as you know, there’s not a lot of people in my podcast, who have been able to really share stories of vision, I could probably think of about five or six episodes where vision is an issue.
Bill 1:18:59
And those people are challenged by it on a daily basis. So this one is going to really make it possible for a lot more for those people to relate to somebody else again, to to relate to somebody else, somebody from your background, I think is even more special. So I know you’re not on social medias, but some people might want to choose to reach out to you.
Candice 1:19:24
Oh, absolutely. I would love that.
Bill 1:19:27
Is there a way that we could get them to reach out to you?
Candice 1:19:30
Yeah, if email is okay. My email address is [email protected]. And I have all the modifications I need on my computer as far as my email is concerned, I’d be so happy to correspond and connect with people that way and again, hopefully as I continue my recovery, and my journey, maybe one day, I’ll have an Instagram page or something like that.
Candice 1:20:06
Again, if I feel like I’m finally at a point where I feel as if my story is something I’d like to share, again, even if it helps one person, just as that young gentleman did on the podcast that I mentioned before, it was as if just a light bulb, the emotion that I felt over hearing him say, it affected my vision was just, it just meant the world to me.
Candice 1:20:37
And so and again, it’s so validating just to hear about other people’s stories, and even if they’re not really like a division, and still, the neurological aspect of it all, helps connect. So I’d be happy to, to correspond with anyone who wanted to, to reach out and I can’t thank you again, enough for doing what you do and and having a platform in which to share stories, because I think those personal encounters can make all the difference in recovery.
Bill 1:21:17
My pleasure, thank you for saying so. And thank you so much for being on the podcast.
Candice 1:21:22
Thank you.
Bill 1:21:23
Well, I hope you enjoyed that episode. Thanks so much for joining me on today’s recovery after stroke podcast. Do you ever wish there was just one place you could go to for resources, advice and support in your stroke recovery? Whether you’ve been navigating the journey on your own for weeks, months or years, I know firsthand how difficult it can be to get the answers you need.
Bill 1:21:45
This road is both physically and mentally challenging from reclaiming your independence to getting back to work to rebuilding your confidence and more. Your symptoms do not follow a rulebook and as soon as you leave hospital, you no longer have medical professionals on tap.
Bill 1:22:01
I know for me It felt as if I was teaching myself a new language from scratch with no native speaker insight. If this sounds like you, I’m here to tell you that you are not alone. And there is a better way to navigate your recovery and build a fulfilling life that you love. I’ve created an inclusive, supportive and accessible membership community called recovery after stroke.
Bill 1:22:23
This all in one support and resource program is designed to help take your health into your own hands. This is your guidebook through every step in your journey from reducing fatigue, to strengthening your brain health to overcoming anxiety, and more. Now to find out more and to join the community, just head to recoveryafterstroke.com See you on the next episode.
Intro 1:22:48
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:23:05
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Intro 1:23:21
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Intro 1:23:42
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Intro 1:24:07
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