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October 27, 2020

Meningitis Stories

Blake Schuchardt is a fellow meningococcal meningitis survivor, advocate for the National Meningitis Association and the cover story for People Magazine’s Summer 2020 Health edition. John and Blake each share their story of the extremely critical meningitis diagnosis period and hospital experience.


Episode Transcript:

John:
I've been looking forward to this conversation about meningitis of all things.

Blake Schuchardt:
Yeah. Yeah. That's definitely a conversation you don't hear much about, unfortunately, but when you called and asked me to be on here and talk with you, I mean, I was ecstatic. I wanted to get on here as soon as possible and see what all we had in common and what all we could pass on to the listeners and see what we could educate people on.

John:
Yeah, you are no stranger to advocacy and education in the meningitis area. You are connected with the National Meningitis Association, which is how I found you when I was searching the web for meningitis stuff. I encountered the, I'll just refer to them as the NMA here and I think the web address is nmaus.org, and it's a website, that's got a lot of information about meningitis and the fact that a lot of people don't know what it is. How did you get connected with them?

Blake Schuchardt:
Well it's been at least five years ago now. I randomly was looking online. Just kind of see if I could find anything about meningitis awareness or advocacy. You know, when I got it, I was only 18, so I really wasn't, you know, willing to go out and tell my story quite like I do now. And I randomly came across their website and I emailed the president at the time and just said how I wanted to get involved. And she emailed me back and said, great, write up your story and send it to us and we'll get back to you. And I put it off for a year and she, she actually was persistent. She emailed me back and she said, Hey, we're still interested if you are. And that's how I got into it. They flew me out and they got my story down on paper and they put it online. And I mean, one things led to another I've gotten to people magazine, so it's been quite a ride.

John:
Yeah, it sounds like it, that's kind of how I found the National Meningitis Association as well, just scouring looking for details. And I think understand a point in my life where it's time to start time to start being an advocate. I don't know, maybe maybe Parenthood or something is what brings it out of me, but I think it's just time it's people don't know about it and people need to know about it because it's dramatically changed both of our lives. And if something as simple as a vaccine or just some other preventative measures or just awareness of, of what the disease is and what it looks like that could be fixed or diagnosed sooner, lots of people I think would have much different results.

Blake Schuchardt:
Yeah. And I've been very happy the past few years. I don't know if you've noticed them on TV, but I've noticed a lot of commercials mainly focusing on meningitis and the meningitis vaccinations. And I really didn't see those until probably the last four or five years. And I've seen them quite a bit. And just knowing that, you know, they're starting to get that out there for people to see and not just online is great because I mean, when I say meningitis to most people, they have no idea what I'm talking about. And that's scary because as you know, meningitis can be deadly for a lot of people. It's highly contagious. And it's weird. I got thinking today that you, you, you timed this perfectly with wanting to do this with me and talking about meningitis because meningitis is actually very contagious and it's spread via droplet and airborne. And guess what else is spread via droplet and airborne COVID-19 so, yes. Great timing. So when people start hearing this COVID-19 and how dangerous it can be and how quick it can spread, they don't realize that meningitis is just as deadly and just as contagious.

John:
And the thing that would, would be different with meningitis is as we're learning, as we, we learn through or understand the COVID-19 world that we're living in and understand the disease it's affecting mostly the older folks in our, in our world. I mean, it affects everybody, but most of the fatalities and the severe illnesses are coming from people, you know, beyond 50, 60, 70 years old. Meningitis affects people young. And that's where it's a little bit different. It's equally as contagious and it's equally as deadly, but it affects the, the population that most people would think just like myself. It affected me when I was 19 years old. And of course at that time I was 10 feet tall and Bulletproof. So there's, there's no way anything would, would cause any harm to me.

Blake Schuchardt:
Yeah. Yeah. And it's, it's strange because these, I hear people say, well Covid-19's probably been around a while. You know, why aren't we just not worried about it? Well, meningitis has been around for a long time too. And people are just not hearing about it. So, I mean, it's this day and age, you would think we would know a lot more about the things that we don't know about, if that makes sense.

John:
With all the information available it's yeah, you're right. And I have also noticed, like, like you said, that I have seen more advertisements mostly on television about the the vaccines. And I'm just going to tell you, honestly, I don't know much about them. I know you've got much more experience than that with me, but there's like an a and a B, and you've done some work with another great organization, the16vaccine.org.

Blake Schuchardt:
Yes. So I spent a little bit of time doing some filming and this awareness that we, we spent an entire day, me and another doctor she said another doctor, but a doctor. We basically went on television, on live television through several media outlets and we help try to spread the awareness of what it's the 16 and it's the number 16, that's the16vaccine.org. And it was really pushing to get that second booster shot at 16 years old, because a lot of people don't know that the main vaccination timeframe is between 10 and 12 years of age. So right. As you're getting ready to become into high school. And there's actually a booster that you really need to get at you're at the age of 16 before you get into your college days, because college, you know, you're in cramped dorms, you're a lot closer just like in high school. You're very close proximity. So they're really trying to push that second shot. The booster shot at the age of 16, but the great thing is, is they've had a meningitis vaccine for years. I think when we were talking, the, you, there may not have been one around the time that you got sick, but there was around the time I got sick and there's like that five-year gap or something like that. I think we decided that it had to have popped up in there somewhere so early two thousands is when they came out, but it only, it only covered four of the strains and there's five. So it covered the A, C, W, and Y. And the strain that you and I both got was B the meningitis B. So here recently, a couple of years ago, they came out with the meningitis B vaccine. So now not only do we have, you know, the A, C, W, and Y strains covered, we also have the B, which is believe it or not. And I just I've gotten this information out today as it, every outbreak that you've been seeing a lot of the colleges, so that not just the individual meningitis symptoms, but like the outbreaks. So the ones where multiple people got sick at these colleges, every one of those outbreaks was caused by the meningitis B strain. So they all got the exact same strain that you and I did. And as you know, that's the most deadly strain there is. More people die from it. More people have issues, long long-acting issues after the fact. And, you know, we'll get into that more of what you and I both have going forward from that, but, you know, people are so afraid nowadays with this COVID-19 where we don't have a, we don't have an immunization for it. We're just masking up. Well, meningitis has a vaccine. We just have to get our children to the doctor and get that vaccine to them.

John:
Yeah. Do you know any reason why it affects the age group that it does so profoundly? Is it because of just the environment that the age group is in, or is there something unique about that age?

Blake Schuchardt:
I really don't know the exact why's, but I know I've been told over and over the years that, that it does find, like, it's almost, it's weird and this, this would have to be fact checked for sure. But the more healthy and better immune system you have, the more it fights the bacteria, the more of the bacteria fights back and spreads. So I know at the, you know, when you're an adolescent teen, you're at the healthiest, you know, your immune system is as high as it's going to get. But what I don't know is like for, for the very small infants that get it, what causes, I don't know if it's because their immune system hasn't developed yet, so they can get it a little easier. And then, you know, obviously adolescents were very healthy and as soon as we start fighting, it, it fights back. So that's really the only thing I can think of, but I don't know for sure why.

John:
Yeah, well, in my experience or my, my, the discussions I'd like to have going forward, I want to get some medical people involved to get more answers to more of those specific types. And then all the strands, the A, B, C, X, Y, Z and all the, all the other ones that are out there. So I I'm really on a quest to be informed myself and then pass that information on to as many people as I can, because I, as sure as we are both sitting here today, we know how deadly this disease is and how really it can change. It can change lives that can change families and, and it's, it can be prevented.

Blake Schuchardt:
Absolutely. Yes, absolutely

John:
Hard to, it's hard to detect, especially if you don't know what it is. And oftentimes it starts with something as simple as a cold or severe cold or flu like symptoms for me when I became ill with it was in the winter, late winter of 1998. And it was in February. And for me, I just kind of thought I had, first of all, I'd never heard of meningitis. Okay. So that's one strike against me. And two, it was flu season or winter time. So I was in college. I was in an apartment living my two roommates, and I probably, I went to the hospital on a Saturday and it was late Thursday that I started feeling bad. Like, I, I just felt like I had like a, probably a severe cold really is what I felt like I had. And I remember stopping at a drug store or convenience store or something and getting some severe cold and sinus medicine and taking that and had a exam on that Friday. So I was going to go home and do some studying. And I didn't really do much of that. Cause I really was feeling pretty poorly and didn't think a whole lot of it, of course took the medicine, went to bed relatively early and woke up pretty early Friday morning. And for me, I was, I was very sick, very sick. I was vomiting a lot. And when the, the thing that at the time was, was for me, I knew something was now looking back at it. I knew this was different. I was in bed and got up from bed to go to get sick. And when I hit the ground from getting in bed, I immediately was on the floor. Like my legs didn't work. And mostly because I was dizzy, the room, everything was spinning and I could not, it was something like I've never, had never felt before or witnessed before. And so I was getting sick a lot. And after that stopped, I don't know what, what time it was. I got back in bed. I actually called my parents. Probably I waited a little while because it was very early in the morning for me and called my parents. I want to say around 6:00 AM or so, and was telling them that I was not feeling well, and this was pretty bad. And they had just gotten over the flu themselves within the last week or so. So we kind of chalked it up to that and I hung up the phone. I, I think I called, I'm pretty sure I called my professor for the class that had tests in that day and told him I wasn't going to be there. I went to bed and woke up seven days later in the hospital.

Blake Schuchardt:
Wow. Wow. Isn't that something that was my goodness. Yeah, that is wow. Well, mine's similar. So I was a senior in high school. I was a month away from turning 18. And I, this was in March of 2005. So I was so close to the end of my senior year and, you know, looking forward to going to college. And I had been healthy all year long. I don't think I had missed a day of school yet for being sick. So I remember around lunchtime that day and I think it was on maybe a Tuesday. I don't even remember anymore. It's I just know that I started feeling like I was getting sick. And like you said, a cold or a flu or something. I mean, this was the end of flu season. So I thought maybe I'm just getting a bad cold, you know, I'm starting to get a runny nose. I'm just, I'm very weak. I just feel like I'm getting ill. So I managed through the day took my girlfriend home from school, gave her a kiss goodbye, you know, and that right there is important because knowing that this is droplet, you know, she could have got it. So I dropped her off, went home and I made the decision that I was going to stay home that next day. I just, I didn't feel good enough. I knew I wasn't going to try to push it. So I wasn't even going to set my alarm. So I remember that night all through the night, I just had terrible dreams. I don't remember specifics. I just remember tossing and turning all night long. And this is I, I woke up roughly around 10:00 AM and I knew, man, I don't feel good. I need to, I'm going to go to the bathroom and, you know, start a bath, see if I can just lay in a hot tub and, you know, get feeling better. And I went to sit up out of bed and I couldn't, my neck was stiff. I just felt like I couldn't bend at the waist. I couldn't get up. I didn't have the energy to just physically get out of bed. So I ended up rolling out of bed and I basically crawled to our bathroom, which for me, it was right next to my room. So it wasn't far away. And I got to the bathtub and I turned it on and I knew I couldn't sit there and wait for this. I needed to go lay down. I couldn't wait for it to fill up. So I called that to my bed. And I remember standing at the side of my bed, getting up onto my feet. And instead of just laying in bed, I literally just fell onto the bed. I mean, just fell face first onto my bed. And for some reason, higher power, I don't know why my dad doesn't know either, but my dad, for some reason, stayed home from work that day. And he doesn't know why he said, he just felt like I was sick enough. He was going to stay home with me. So he called into work and he happened to be downstairs and heard me turn on the bath water. And he came to check on me. And he said, when he got to my room, he asked if I was okay. And as soon as he saw me, he saw these purple spots all over my body, my face, my back, my stomach, my legs everywhere. And he instantly knew he had to get me to the emergency room. Well, he said, get dressed. I'm going to make some phone calls and we'll go, well, 10 minutes later, he came back in there and I was still laying exactly like I was. So he had to get me dressed. He rushed me to the hospital, which was about 30 minutes away from our house. And there the ER doctor was thinking that I just had a very severe case of the flu that I was dehydrated. So they're just going to keep me overnight. Well, my aunt is used to be good friends with our family doctor. And so she just happened to call him and she said, hey, this is his symptoms. Does this sound right to you? And he said, no, he needs to go to another hospital, a bigger hospital where they, you know, this is something serious. So they allowed my parents to rush me two and a half hours to Vanderbilt down in Nashville in a vehicle when I should have been flown or ambulanced or something but they drove me two and a half hours. And the last thing I remember was I, we got into the emergency room and I was in a wheelchair and my dad was pushing me. And I remember telling my dad, I don't feel good. I need to lay down. I'm going to fall asleep. And I laid my head back onto my dad's stomach while he was standing there behind the wheelchair. And I remember passing out and then I woke up around a week later in a hospital bed, hooked up to a ton of things. And I had a, the ventilator was down my throat. And that was the first thought I had was what in the world's going on. So that's very similar to yours, John, where you say, you just woke up a week later and bam, it was basically, the sickness was over now the battle starts because really that's what happened. The sickness was over. Now, we had to start fighting to get back to where we were.

John:
There are a lot of similarities there. I, you mentioned as you were going through that, the crawling around that, that was me as well. I mentioned that I, I was, I didn't have any spots nor did I have. Not that my roommates were inattentive to me, but it was, you know, they weren't my parents, so they weren't going to be that attentive to me. But there was a time where during that day, before I went to the hospital, my roommate said that I was up and walking around and talking with them and basically saying, you guys need to go somewhere else. I'm feeling terrible. You don't want to get what I've got. So go away. And my roommates actually spent the night away from the apartment that night. So I was there by myself and I don't remember being up and walking around. And I have no memory of any of that. My last memory of, of being there was, I was, I was literally on my hands and knees crawling because when I would try to stand up, it was just like, everything was spinning. I could not keep my balance couldn't do anything. I was crawling in and out of bed. I was getting sick. And the similarity of that crawling around reminds me of that. And for me, the, my roommates did stay away that night. So I was there unattended alone. And the next day was Saturday. And I had a we were had a, I was in a fraternity and we had a party that evening and one of my brothers was coming over to get with me. We were going to get ready for the party that evening. And, you know, you mentioned a higher power and watching things. And I certainly believe that I've always believed that. So it's not a, not a new belief or anything, but the apartment was, was open for some reason when he came by, this was before we had cell phones. So, you know, you'd actually just have to tell somebody to be ready at, you know, 10 o'clock and they'd have to be ready at 10 o'clock. Right. Can't do all the there weren't, we weren't texting or calling or anything like that. So apparently we had made an appointment or a time to get together that mid to late morning on a Saturday. And he came over to my apartment and knocked on the door. There was no answer. The first miraculous occasion was that or event that was at the door was unlocked. Secondly, was he entered the apartment. Nobody was there. He couldn't hear anything. And he was calling our names to see if anybody was there. And he went to all of went well he went to my bedroom. And the way my bedroom was positioned, I had rolled off of my bed. Or at least I was on the floor on the far side of the room, which wasn't visible from the door. And he couldn't, he couldn't see me just by looking into the room, but apparently I had made my leg or something had moved and he heard a noise. So he came around the corner of the bed inspected and he found me face down on the floor and I was lying in and I don't want to be too graphic. I was lying in, in vomit. And he immediately obviously knew, Whoa, this is, this is not good. So he called 911 and the paramedics came you know, within five or so minutes. And they had me in the ambulance headed to the I was in Lubbock, Texas at the time, the university medical center. So kind of like you went to the Vanderbilt medical center or something like that. So similar in that regard there, it was a good hospital. I was probably about, I don't know, I would say maybe four or five minutes away from the hospital by ambulance. So they got me there pretty quick, but really the diagnosis was similar to yours in the sense that they didn't know what it was either at the time I'm at the I'm at the hospital. I'm in the the ER, I'm unconscious. My, my, my face has been, I've been kind of like, if you can imagine I've been rubbing my face in carpet for some reason. So I've got these areas of on my nose and on my, my brow and on my cheek where it's kind of like carpet burn. And in addition to having the, the bile present that I'm, that I'm laying in, basically. So all that kind of stuff. And, and I don't know how long I was laying there. I have no idea. Nobody really knows. So it could have been five minutes, could have been 10 hours. I don't know. But when I get there, they don't know what it is. They know that I'm pretty messed up. I don't have any of these purple spots that I hear so many people talk about or any of those types of symptoms. And they were trying to diagnose me. My fraternity brother was there. I had known him for about two years and they immediately, for me thought I was in a situation where I was overdosing on drugs of some sort, and they were asking him about my drug use and that kind of stuff. And of course for me that, that I, and I don't do that stuff having to, I've never done it, didn't do it. So there were really kind of pressing him to, you know, stop covering for this guy. If you just tell us what he's taken, you know, we can, we can help him, but he's like, I don't, I don't think he's taken anything. I don't know, but I don't know what the, what eventually led them to understand that the meningitis, I know they did a, a, a lumbar puncture or a spinal tap at some point to get the help get the diagnosis. But there was a mad dash to figure out what was going on. They understand this, understood the severity. And then there was a network of, again, we're back in 1998 where we had some cell phones, but not, not like we do today and not like the communication that we have today. So we're trying to locate my parents, locate my brother, locate my family, locate my friends and everybody that had come in contact with me because as we mentioned, this is extremely, extremely contagious. And the race really was on for to figure out what was wrong with me and then keep me alive basically. So it was an interesting encounter. I'm sure.

Blake Schuchardt:
Yeah. Yeah. It goes quick. And I just amazing that they've caught both of ours in time. And I know that the one good thing that the hospital emergency room that I went to first did is they gave me what, whichever antibiotic that kills the bacteria they gave that to me. So the bacteria stopped doing the work, but the job was already done. And so just like in you, the I'm sure at some point they had to have given you the, an antibiotic that was to kill the bacteria, but the amount of the, the work that it did on your body was so severe that it kept hurting you even after the bacteria was gone. You know, I know one thing my, my parents told me that when they first got to the hospital within the first couple days, they had heard that there was one other person that came in literally like 5 or 10 minutes after I did that had the same thing. Okay. Now I don't know where they're from. They weren't from around us, but they were from somewhere, they came in with the same thing and they didn't make it out of the ER. So instantly after becoming a parent, my thought is what could have been going through my parent's head to know that your son is here and someone comes in with similar symptoms and doesn't make it like, what goes through your head? I mean, I know as a parent, what would go through my head and it, it, I don't even, it's like, I don't even like thinking about it because it's just, you know, a parent never wants to see their child in that situation. And my parents, literally, as in your parents, they just kind of, you know, their hands are down and they're going, I can't do anything. What, what, what am I supposed to do right now? Like, I can't help him. And that's an awful feeling for a parent to feel.

John:
Did they know about that happening at the time about the other person?

Blake Schuchardt:
They didn't know about it until like the day after. So I was already up in ICU, but they had, and then I actually, so there was another girl in the hospital that came in about two days before me with the exact same thing, but she was still alive and she made it and she actually got out of the hospital about a week before I did. And we actually stayed in contact. She wrote me a letter saying that she heard about me, I guess the news news down in Vanderbilt around the Nashville area, they did a news story on me, but she found my name. And so we, we wrote each other for a couple of years and stayed stayed in contact. And, you know, she had had some, some of the same symptoms and, but she didn't have a lot of the same lingering issues I did. She had, I think, hearing trouble and something else with her liver or something. But it's just amazing how every individual person is different when it comes to the severity and what it can cause their, how their body reacts to it.

John:
Yeah. There seems to be a lot of similarities, but at the same time, there seemed to be a lot of differences and your parents were there. My parents were not, they were about five hours away from me where I was going to school. So for me, I'm just, I'm going to kind of gloss over some things. There were some really miraculous things that occurred between the time of my fraternity brother, Brad finding me. And then the time that I came to, but my parents were basically given the phone call when once they finally got ahold of them, you know, your son is in the hospital. There, there's a very good chance by the time you get here, he will not, he will not be alive. And if he is, it'll be, it'll be pretty, pretty grim. So be as fast as you can. And so they got there as fast as they could. And when they, when they got there, which was on the same day, they got there by plane. The initial report that the doctors gave them was, you know, exactly what you don't want to hear about the prognosis. And basically if he survives, it will be a permanent vegetative state and, and, or severe cognitive issues with some, a lot of physical disabilities and, and things is that's the best case scenario. Right? And so then it's unbelievable. So you have some pretty meticulous details of your hospital stay. I don't have as meticulous details, but, and if you want to go into those, you know what we can, we can certainly do that. But for me my, the, one of the other things that the milestones that occurred in my hospital stay was after a day or so, maybe two days, my parents just, I mean, the doctor that would come in was like I think it was a man, but it was like Debbie Downer. It was like he was coming in and just, just sucking all the air out of the room every time. And of course I'm hooked up to everything just like you, we've got ventilators and feeding tubes and catheters and monitors and IVs and all those kinds of things that were hooked up to, and this guy just comes in and is like, I don't know what to tell ya. This doesn't look good. I'm not sure what's happening. I don't, I don't know what's going to happen. And so my parents made the decision that essentially they're gonna fire the doctor. That I need somebody in here that's going to be interested in solving this. That is going to breathe some fresh air, bring some light, bring some life into this. And we are all believers. And we know that, that somebody is watching. We know that we can do this. I need somebody that, that has that, that shares that vision of what's going to happen going forward. And so almost immediately when that change occurred, things started happening and we headed on the right track.

Blake Schuchardt:
Yeah. That's wonderful. That's wonderful. I don't remember that. I don't remember any of my doctors. I remember my physical therapist and he was getting me out of bed. Cause it, I didn't like her at all at the time, obviously, cause I didn't want to do anything, but I, so you said how they gave you your parents a pretty grim outlook? My my parents said that that first night I was there, they told them to call any family that they want. They wanted to come see me because there was a 0% chance that I would make it until the morning. That's exactly what they told them.

John:
I think, I think mine was, I don't know if it was exactly that pretty similar.

Blake Schuchardt:
Yeah. And then as the days went on, you know, the next day they said, well, there's a 10% chance that he'll make it. And then the next day or two as well, now it's a 20% chance, you know? So it was very slow going at the beginning, but my mom actually kept a journal and my dad took pictures and it was, they both decided that if something were to happen, that I wouldn't make it, that one, my dad would delete every picture that he took because he didn't want to remember that being the last moments of my life. And my mom would burn the journal because she didn't want to remember those last moments of my life. And so I literally have every picture and I have that journal. My mom gave it to me and it goes into detail from day one all the way up until my last day in the hospital. And it doesn't go into huge detail, but it gave the updates as in. So I could kind of see in my mind how things were doing. And now that I'm a nurse and I work in the ICU, I'm able to, I mean, I can picture it verbatim in my head of exactly what the doctors were doing and why. And at the time I was like, why did they do that? Why did they do this? This doesn't make sense. But now I know exactly why they did it. And I can almost bet, you know, 99% that they did the exact same thing with you as to keeping you on the ventilator and weaning you off and, you know, checking to see your neurologic ability. And you know, they, they basically kept us in a vegetative coma. So our body could heal without us having to suffer. And that's the days that you don't remember is those six or seven days that you just there's no memory. Those were the days that they were letting your body heal itself from the inside.

John:
I hadn't really thought about it that way, but you do have a unique perspective with your, with your background in the medical field too. So let's just go down a checklist. Here are some of some, some devices, a ventilator, of course you had a feeding tube. I did not like the feeding tube. I pulled mine out several times.

Blake Schuchardt:
They didn't say anything about that. They told me I tried to pull the ventilator out several times.

John:
Okay. I think I also didn't like that either. I had it. I think my arms were, were strapped down to the, to the bed on several occasions. So

Blake Schuchardt:
Yeah, they'll either one put mittens on you so you can't grab, or if it gets too bad and you get smart enough and use both hands and grab, then they will do some kind of tie down. And it's obviously it's a doctor order and it's, they don't like doing that because when you take a person's rights away, that's a big deal. So

John:
I know I was tied down. I don't know if it was always or partially or what, but I didn't like that feeding tube. And even, even coming out of once I was awake, I had the feeding tube for, for some time and I would, I would still pull it out aware of it and cause it was just so uncomfortable. And because up through your nose, down the esophagus and into your stomach, and I didn't like, I didn't like that. I didn't like eating that. But the reason, well, one that was in the coma that was out of the nutrition, I guess was mostly used. But two, when I was awake, I, my muscles Blake probably similar you, I had atrophy was the least of my problems, really my muscles weren't, weren't my due to the, I guess the neurological damage, my, my facial muscle. I mean actually just muscles everywhere. I had dropped foot from, if that's what it's called from being in bed, my, my ankles were, I mean my feet didn't, I couldn't really lift my feet up to be perpendicular with my leg. You know what I'm talking about? So standing was completely out of the question sitting up was difficult. Abdominal muscles, facial muscles, my swallowing mechanism didn't work. I, my eye lids. So for me, the biggest thing that came out of my experience with meningitis was my vision loss. And I lost total vision in my right eye. And I have partial vision now in my left eye. And when I became aware of what was happening, where I was, what was weird about it or ironic in this case was my right eyelid would open like normal, but my left eyelid would not open. I couldn't open my eyelid. And so when I was awake, I'm looking, but I, you know, I can't see anything it's, it's just black and my right eyelid's open, but I can't see out of my eye, my left eye, which I have vision in the eyelid's closed. And I just assume it's open because my right one is open and it wasn't. So, I mean, just, I don't, I don't, I don't know how I became to understand that and the concept of the vision loss and just, I mean, I was, I was a wreck physically. I was, I was, I was a wreck. That's the best way to say it.

Blake Schuchardt:
Yeah. And I think it's, excuse me, it's probably important too. I mean, cause we basically jumped into, you know, we had meningitis, but I guess it's probably important that I maybe fill people in on what meningitis is and what is affected by it. So they kind of get an understanding of why it's so severe. So our brains have what's called meninges. Okay. And so if a person is to just look at a picture of a brain, the parts I'm talking about are the parts that make it look like a maze. So all of those just beefy lines that go all over your head. Those are meninges. And when those meninges become inflamed, that is meningitis. So it's, you know, it's that the meninges and then gyrus. So it's the inflammation of those meninges and those meninges become inflamed due to that bacteria. And we have spinal fluid that literally incases, that brain all the way down your spinal cord to the very tip and all that fluid becomes infected with that bacteria. So imagine all of that fluid, what all it entails and throughout your body becoming that. So it's not like just having a sore throat or pneumonia, which is just in your lungs and then meningitis affects your entire body and you can't the reason there's so many symptoms is because you don't know what part of your body that bacteria is going to affect. It's basically like. So imagine us putting that bacteria in your furnace at home, you don't know which room it's going to come out in first and whatever room it is, it comes in. It's going to take a long time to get it out of there. Just like your body. So, you know, it affected your eyes. And unfortunately that was something that your body couldn't correct fast enough that there was permanent damage. My big thing was my kidneys. So I didn't have any vision damage whatsoever. I just have what I call old man eyes. I had to have reading glasses, but mine, my kidneys shut down in the hospital and they thought that it was just an acute kidney infection and acute kidney damage. So we did dialysis in the hospital. And that was, that was one thing that later in life, you know, I'm still fighting, but that was really the big thing for me was just kidney function. I had some other small things. I like you. I couldn't walk anymore. I had to learn how to walk basically all over again. And a neat thing that I've learned in my nursing career that I was, I've always been taught by the physical therapy people is for every one day that you lay in a hospital bed and you're not able to get up and really do anything. It takes three days of physical therapy to get back all the muscle that you lost. So I was in hospital for almost a month. And I know you said, similarly, you were in there for several weeks, right? John?

John:
I was in the hospital for 21 days, almost exactly.

Blake Schuchardt:
So that's so 21days, Times three, you know, you had that. So that took a lot and I mean, I assume that's probably how long or more it took you, but for me it took three months of physical therapy just to get back to where I could walk that wasn't running, that wasn't you no up and lifting things that was just walking.

John:
I was similar in that regard. I had a lot of therapy in the hospital. You mentioned the physical therapist, not being your favorite for me, it was the cognitive therapist I didn't have now some would probably argue with this statement here, but I didn't have any cognitive damage. And I was aware of that at the time, but this, this woman would come in, it seemed like every hour on the hour and asked me all these questions and these cognitive tests and things. And that just, I'm mean already beaten for lots of reasons. And it just was, it was just terrible. I can remember being pretty into the physical stuff, although it was exhausting. I was really driven to, you know, as crazy as it sounds, I was driven to walk. I mean, I wanted to, I wanted to get out of the bed. So I was driven by that feeling to move. Although it was very difficult. I mean, I, we just start with sitting up and, and stand, there are one sitting up and then two being in a sitting position for awhile and then three getting on my feet, which was, I mean, it was, it was quite, you know, it was like a, a milestone in my recovery to stand on my feet, which is crazy to say, but yeah, it's, I did physical therapy, you know, using your, your math there's for about 60 days once I got home yeah, that that's probably pretty accurate. I went to an outpatient physical therapist place when I got home and it was for a couple months for sure. And, you know, just basic functional stuff was what we were working on, which is, you know, crazy for for a 19 year old kid to be worried about that.

Blake Schuchardt:
My family tells me a story that happened during my hospital stay. And I remember it pretty, pretty well. So it was in March when I was there. And my, I think it was March 3rd, March 5th. I that's what's bad. I can't even remember the date that I went in. So my grandma's birthday who I was always close to, always growing up and still am. And thank God she's still alive. Her birthday is on March 17th, so St. Patrick's day. And I know on that day, the doctors decided to wake me up while I was still on the ventilator to kind of see how I was doing, make sure I was cognitive cognitively still there follow commands. And I remember they want my family in there and I remember aunt coming up to the side of the bed and saying, Blake, do you know what today is?
It's Mamaw's birthday. And so I, I don't remember how I did it. I know what it felt like I was doing, but I know what they tell me I did. So to me, I thought I was waving, come here. Like, you know, the come here motion with my hand to them, it looked like I was just moving my fingers back and forth, but I was doing that and that was wanting her to come closer and what I wanted to do, I wanted her to bend down and I wanted to give her a kiss on the cheek and tell her happy birthday, but I couldn't talk. So the most I could do was she bent down and I put my, my, I had a face mask on at the time I put that up to her cheek as in, Hey, that's my kiss happy birthday. And then they put me back to sleep. So to this day, my grandma always reminds me on her birthday of how that was one of the best presents she ever had was me giving her a kiss on the cheek while I was in the hospital room, you know, trying to survive. I was thinking about her on her birthday.

John:
That's incredible. Well, as I think we discussed earlier, I think you said very, very well, very poignantly that it was during the hospital time where the, the illness had had run its course, but we both, maybe, maybe we understood or maybe while we certainly understand now that the battle was really still ahead, it was a battle to recovery. So I think we've both glossed over a lot of details that we could get much more specific about and maybe we'll do in a future discussion. But I think the next next time when we get together, let's talk about the road ahead.

Blake Schuchardt:
Let's do it. Yeah, absolutely. There's still a lot the tell.

October 13, 2020

Q&A With Ambiguously Blind

 Mrs. Ambiguously Blind, Erin, makes her world-wide podcast debut. She sits down with John to ask some of the most common questions about his vision, podcasting, dating and how they met.



Episode Transcription:

John:
We have a special guest in the studio, my life copilot, my, my best friend, my buddy, my better half, all sorts of other positive adjectives. We have Mrs. Ambiguously blind, Erin, in the studio today. So making her worldwide podcast debut, which you probably will be surprised by because she's such a natural at doing these types of things. So Erin, welcome into the ambiguously blind studio.

Erin:
Hi, I'm happy to be here.

John:
Oh, I can tell.

Erin:
I am.

John:
Well, I'm glad. That's good. Now, if we can just get you to stop laughing.

Erin:
I'm sorry.

John:
I haven't even started attempting to be funny yet.

Erin:
I know!

John:
I'm trying to be serious.

Erin:
I, I know!

John:
This is a serious topic. So,

Erin:
Very serious!

John:
I recently got some feedback from some previous episodes from some listeners that said they wanted to know a little bit more about John, about me. So, I sent an email out to some people asking them questions that they thought should be answered. And I got, I got some pretty good questions I think. And Erin is going to curate those questions and moderate this discussion.

Erin:
You got very good questions, a lot of questions.

John:
And are there any of them that you had considered before or, and do you know the answer to all these?

Erin:
Yes. I think I know all the answers to them.

John:
You think? I guess we'll find out.

Erin:
Pretty sure I do. Well, there may be a couple that it'd be interesting to hear what your response is. Cause they're kind of about me.

John:
That could be interesting.

Erin:
It could be very interesting.

John:
This may be the only time you're on the podcast. This may be the end of the podcast.

Erin:

Maybe. No! You'll have me back.

John:

Do I have a choice?

Erin:

Yeah.

John:

Okay. Well, we'll see how it goes.

Erin:

Okay.

John:

I also want to add that the if you have questions or want to know something, you can email me. It's john @ amblind .com. With no further ado, let's get started with the questions.

Erin:

Alright. You ready?

John:

I think I'm ready.

Erin:

Ok! What secret reason do you have for doing podcasts?

John:

Secret reason?

Erin:

Secret!

John:

Not just reason.

Erin:

Not just reasons.

John:

Well, that's interesting.

Erin:

A secret reason.

John:

Well, my first podcast, I kind of lay out the groundwork for what, what I'm trying to do here. And I mentioned that I wanted to do something like this to express myself and give examples and kind of talk through a lot of things about what I can and can't see the, the term ambiguously blind, I believe is fitting for me because really often, a lot of times it's unclear what I can and can't see. And this would be a way for me to talk about it at nauseum. So maybe people would get the idea or I could point to a particular episode or discussion that I had with somebody to help somebody understand what, what my situation is. So that's, that's not a secret though, cause I've already said that. So what's secret reason. That's a good question. I don't think I have an answer for the secret part. I would just say bumblebee tuna to that one. That's the only thing I can tell you.

Erin:

Bumblebee tuna?

John:

Bumblebee tuna. A-bumba-waya-chewa, actually.

Erin:

What?

John:

The person that asked that question will understand that.

Erin:

Okay. Ready for the next question?

John:

I don't know that I'm going to be all as hard hitting as that one.

Erin:

No. What is your clinical definition of your vision?

John:

Clinical definition of my vision? Well, 20/300 is generally what I say. Cause it's pretty close to that. It does vary, I think a little bit in one eye. Well, it doesn't vary just the, the acuity I think kind of varies. My vision has been pretty constant since it changed about 22 years ago. So, I have 20/300 in one eye and zero in the other eye. And then what that kinda means is in a practical sense is a little bit more of a deeper discussion. And I will, I'll tell you what that means. If you wanna talk about that.

Erin:

Sure! Cause I tell people 20/400. So is there, I guess there's not that big of a difference between 20/300 and 20/400?

John:

It's a, so the just so we let it let you know, kind of understand what the, what those numbers mean. The 20 it's 20 it's a fraction it's 20 over 300 is what I would, what I say normally 20/300 and the way it, the way it works is, you know, what really need to do is get, get with a optometrist and talk about more specifics about what those what that, what that 20/300 or 20/20 or whatever it means, but generally normal or perfect vision, if you want to call it tha,t is 20 slash 20. And those, the numbers represent a measurement of feet. So at 20 feet, when you look at the eye chart with the big E at the top, E for Erin probably.

Erin:

That's why they did that.

John:

Yeah. When you look at the big E and then you read down the lines, there's a certain line number that somebody with 20/20 vision should be able to get to, to get to and see correctly.

John:

And at 20/300, it's just a lot, like we're probably looking at the E kind of thing.

Erin:

Okay.

John:

And in the optometrist office, they have mirrors and things to make it to get the distance when you're looking at it, depending, unless you're in an exam room, that's 20 feet long. There's a mirror, so you'll look, you think you're looking ahead, but you're actually looking at a mirror that's bouncing it off to get the distance. Right? But, so my vision is basically at 300 feet, if you are standing, what I like to use for this is a football field. Cause a football field from goal line to go line is 100 yards, which would be equivalent to 300 feet. So if, if somebody with 20/20 vision is standing on one goal line and an object is standing on the other goal line. So let's just say you, Erin, is standing on the other goal line and I'm standing on the seven yard line closest to you.

Erin:

OK.

John:

What, how I see you would be the equivalent of how the person at the other goal line sees you. So they're 93 yards away from me, actually a hundred yards from you.

Erin:

Okay.

New Speaker:

It's not necessarily blurry. It's just kind of like your it's kinda like I'm farther away.

Erin:

Like a tunnel vision type.

John:

No, it's really not like that either because I have, I actually, my, my range there's another, another term would be, or clinical definition would be range. I don't know what my range is. But a normal eye would have 360 degree range. You'd be able to see all around without moving your eye. I mean, you could move your head or move your eye to look a certain direction. But when you're looking straight ahead, you have a 360 degree field division. I probably have like, I don't, I don't know what it is, but I'm gonna give, I'm gonna give Erin an example that you can see that will do nobody listening any good. But when I put my hand up here, like I cannot see my hand. I can now. So with, with a normal field of vision,

Erin:

Right.

John:

All this down here.

Erin:

Yeah.

John:

Would be in my range.

Erin:

Yeah.

John:

So like, I don't know what, I don't know what degree of, you know, that's something that an optometrist could help, help me understand or convey to others, but

Erin:

You can see better peripherally.

John:

My peripheral vision is better than my straight on vision.

Erin:

Do you know why that is?

New Speaker:

I do not, but it is. And, and my vision hasn't changed since since it since it changed. I mean, it hasn't gotten better or worse. It's been stable since, since the change, so.

Erin:

Ok, because you've the description you just gave about the football field is clearer than a description than you've given me before. Like when we first started dating, I tried to understand what you could see. I really wanted to understand that. So I, when I went to have my eyes checked, I went to an optometrist and while I was there, it just popped into my head. And I was like, hey, he can probably show me what your vision is like. And so I told him a short version of your story and that I'm a visual learner. So he's like, yeah, I can totally show you what he can see. So when he was able to do that, then it kind of just all was clear to me on what you see every day or what you don't see every day too.

John:

What did that look like?

Erin:

I remember it as it was years ago. I remember it as blurry. I mean, I could still, I could see the outline of the letters and depending on what, like you said, what letters I was looking at, I could make out some things, but not a lot. I couldn't make out a lot of the letters, I think like maybe the, like the E and maybe the letters underneath it, maybe. And that was it.

John:

I don't know how they do that. It seems to me like maybe it would be blurry because they're using a lens.

Erin:

Right.

John:

to project that whatever that distance is, and maybe it would actually be blurry. But I don't know. That's.

Erin:

Something to look into.

John:

Let's check out. Good old fashioned. I mean, to may, it will, you know, it's one of those, it's like a vacation, like a vacation we'll, we'll go to the optometrist together. We go to the dentist together.

Erin:

We do.

John:

now, which is exciting.

Erin:

Very exciting.

John:

Yeah. It's pretty awesome.

Erin:

What are you able to see? And can you see the question says, can you see your wife? So what is it like when you're looking at people or looking at anything? Like what, what do you see? Like me, if you're looking at me right now,

John:

I am looking at you right now.

Erin:

Yes. What can you see?

John:

I see you sitting across from me.

Erin:

But can you see me?

John:

Do you want me to be more descriptive than that? I, you're not wearing any clothes. That's a little shocking. It's a good thing we are in an audio medium here.

Erin:

I'm fully clothed.

John:

And I guess I do need to get my eyes checked.

Erin:

We need to schedule that optometrist appointment.

John:

Sooner than later.

Erin:

ASAP.

John:

What can I see? I don't know. That's a pretty general question.

Erin:

Like me. I mean, what can be, am I, I guess blurry is not the right. Cause you just said you couldn't see your hands. So if you couldn't see your hand, can you,

John:

Well, and, and for those that are listening at home, what I was doing was putting my, essentially my hand, if the way I describe it, another way is if you take a, like a circle 360 degrees and you put the horizontal and the vertical axis on it, and what I essentially see of those four quadrants is the top left quadrant. So that would be from, I guess, that, so that would be from the 180 degrees, which would be, I believe the, the left. Does that make sense? And then all the way up to the 90 degree.

Erin:

Yeah.

John:

Okay. And I see a little past that. So maybe like between 180 and maybe like 75 degrees.

Erin:

Okay.

John:

Okay. So if it's anything outside of that, I have to move my eye or my head just looking straight at something that's that range, I guess, is what is, what it's referred to as would be what I see without moving my, so I would just, I would just move my head or move my eye.

John:

And again, often I see better from the periphery. So I might look to the side of you to see you actually clear, then I looked directly at you.

Erin:

Yeah.

John:

So, I mean, I've already described you, so I think we've got that down, but I think, I guess the better, the best way to say is what do you see? It's just like, I'm standing further away from, you know, much further away from something.

Erin:

Yeah.

New Speaker:

So that kind of detail, like if you had something on your shirt that, that like something written, unless it's in very large bold letters or I get uncomfortably close to you, which could be a problem if I don't know who you are, or even if I know who you are, it could be a problem.

Erin:

Yeah.

John:

I probably won't see what's on, what's printed on your shirt kind of thing.

Erin:

Right. Okay.

New Speaker:

I don't know if that helps at all, but maybe some, maybe there's some other questions that will touch on that too.

Erin:

Ok. When, and this kind of goes along with that, when someone walks up to you, you can, you usually tell who they are before hearing their voice.

John:

I would say generally not. And you may be a good judge of that as far as, I mean, obviously if we're together, it's going to be pretty, I guess I'm, I'm usually very aware of who's around me. If I know who's around

Erin:

And we've been in situations where you didn't and that, and I'd tell you, Hey, so, and so's here or

John:

Yeah, like in a, just in a general setting. No, it, I, I mean, not if I'm at a certain place and certain, certain people I would expect to be there. Right?

New Speaker:

Right.

New Speaker:

So I, I can, I can guess, but no, really I rely heavily on, on hearing.

Erin:

You've got very good hearing.

John:

I don't know if I, I mean, I think I do have good hearing. Yes. But I don't, I don't think it's any better than it really. I don't think my hearing, I do get asked if my hearing is been better and it might be, but I think, I mean, I certainly pay much more closer attention to hearing now. So I, I don't know whether it's better or.

Erin:

You just rely on it.

John:

That I am in tuned into it so much more that where, where with, with vision, it's not necessary to be that tuned in to hearing, but like, I have had situations where, I mean, I do somebody that I know. I mean, I could, I could be within feet of my parents and pretty good chance I don't recognize them in once, once there's, but there are, there are also times where I do notice and it might, again, might be in a situation where I'm expecting to see them, or I am in an eminent place where they would likely be or something or somebody would likely be.

John:

So, but if it's just, if I'm walking down the street and I pass somebody at just total random, there's about a 99% chance I won't, I won't be able to identify them without any kind of audible cue.

Erin:

Yeah.

John:

And sometimes I think people that may or may not know that about me, find that to be like I'm being rude or I'm not paying attention to them. And while sometimes that could be the case, the majority of the times it is not. So I've, I'm a little self conscious of that. Cause I don't want people to think I'm, you know, snubbing them or something, walking, literally walking within inches of them and, and saying nothing that would, you know, like they may have given, they may have even waved at me or,

Erin:

Well, that happened the other day, we were out riding bikes and you and I had split up, you were farther ahead than I was. And one of our neighbors was walking and he, I saw that he waved and you didn't see him, but I've told him and his wife before you know of your situation. So

John:

So hopeully he doesn't think I'm a big jerk.

Erin:

I'm sensitive to that too, because,

John:

And I don't like that cause.

Erin:

Of course not.

John:

I'm generally social. So I like to talk to people. So it, I feel, I mean, I guess I don't know what happened. I don't feel bad about it, but I feel like it happens that I, more than I, that I know.

Erin:

Right.

John:

And I get uncomfortable because I have missed the social interactions. So.

Erin:

Yeah. Okay. When you meet a new person who isn't familiar with your vision loss, what's the general reaction,

John:

Generally it's positive and inquisitive. I don't, I don't know that I've ever had any real negative first impressions or something. I mean,

Erin:

Well, I think people would be more surprised because I forget about your vision loss because I mean, you don't use.

John:

Yeah. So I don't use a cane. I don't use a dog. I have no, no, no visual cue.

Erin:

Right. And your eyes are good.

John:

Yeah.

Erin:

So you can't, I mean, just looking at you, you can't, you can't tell and you get around so well and you do see things a lot of times that you know, I'm just like what he saw that. And so I completely forget it, but like, it doesn't even register to me a lot of the times. So I'm just always kind of curious too, as to what people, if people have that same reaction.

John:

Yeah. Maybe that would be the first word to use probably is surprised or, or obviously not expecting expecting it. And there's oftentimes where sometimes I go in, I could really go into a long conversation about it, but I don't have the time to do that. Like when I'm in line at a Starbucks or something and there's six cups on the.

Erin:

Right.

John:

on the counter and one of them is likely mine, but I won't be able to identify the writing.

Erin:

Yeah.

John:

So I would ask the barista and depending upon the situation and how busy things are, I could get into a little bit of a conversation about it or I could just ask them. And sometimes they'll probably look at me like, yeah, it's right here. What's going on.?But in those situations, I don't know that, I mean, if I, if I'm, if I have a guide dog with me or I am using the white cane, it resolves that issue pretty quickly, but I, for whatever reason don't do either of those.

Erin:

Yeah. Okay.

John:

What was the question on that?

Erin:

When you meet a new person who isn't familiar with your vision loss, what's the general?

John:

Well, I also think people are generally, generally, it's a it's positive. It's not, there's never really been a negative situation once we get past the, the surprise element of it, I guess. And generally people are inquisitive and I think want to at least know something about it because generally people are pretty helpful too. So when they, once they identify that I need assistance with something, or I'm asking a question that might be abnormal based on my appearance, they generally are helpful.

Erin:

Yeah. I would hope so. Do you still see normal colors and shades of light? It's a good question.

John:

The answer mostly is yes. Oftentimes colors that are similar to each other, which I think maybe even fully sighted people could have some challenges differing from colors, but it has a lot to do with me with lighting. Like if I'm looking at something again, I guess it's just close in color. I would say probably depending upon the lighting of the room or the environment I'm in that I'm looking for light difference, probably about 90% of time, I can tell the differences, but similar colors are, are more difficult. And what was the second part of that?

Erin:

Shades of light.

John:

Kind of the same answer, I guess.

Erin:

So when we go into a restaurant or any, I'm just using a restaurant as an example, one in particular, when we go in, it's really dark in there. And then yes, that is your eye. We have to wait a minute, cause your eyes have to adjust why's that?

John:

For whatever reason. And this would be another good question for the doctor. My what, it's tough for me to go from highlight to low light or low light to highlight. So like an example would be the restaurant you're walking into where it's like a low lit restaurant. And if it's, if I walk in there and it's the middle of the day and it's sunny. Yeah. I do have to. I mean, it, it literally is pretty much black for maybe like 10 seconds is what, what the adjustment time is. Or another example would be, if I walk out of a movie theater, like just watching a movie and this has happened where it'll be still daytime and walk out of the movie theater in a kind of a dark environment and then walk out and it's like a blast of light. So what the reason for that is I can't tell you, but that does happen to me. So I wear sunglasses for a few reasons. That's probably the biggest is to balance out the difference between the environment coming to, or going and coming from or whatever.

Erin:

But, and then normal, you're just out for a walk or something. You can tell the difference between you're standing in the sun or you're in the shade. You can see the difference.

John:

Yes. No trouble with that.

Erin:
Okay. Do you have secondary medical issues related to your vision?

John:
I don't think so. Nothing that I've been told or said to watch for? I do know that there are times where my, my, the eye, that I see, which is my left eye feels like, it feels like it gets fatigued. Like I can feel my eye getting tired.

Erin:
Yeah.

John:
Because I do have to look at things pretty intensely when I'm focusing on something, which is, I think, normal for everybody.

Erin:
Right.

John:
However with, with my limitation, I, my focus is I think a little more intense. And so I have noticed there are times where my eye will feel fatigued from looking at whatever I'm looking at for a long time. But other than that, there's not any there's no medical

Erin:
Diagnosis or anything.

John:
There's no, there's no, there's, there's nothing that would that at any professional I've seen said, you know, we get to watch this. Or, you know, like, I think maybe might be like migraines or something like that. I don't get headaches or anything other than the little eye fatigue, which generally goes away relatively quick. I don't know. I don't have any, anything like that.

Erin:
Okay. That's good. This is a great question. This next one.

John:
Well, I'm looking forward to it.

Erin:
How was the dating world before you found your, now, I did not come up with this question.

John:
Where did this question come from? This must've been one of your friends then.

Erin:
Yeah. Yeah. One of my really closest friends. How was the dating world before you found your beautiful, smart, talented, kind and supportive wife?

John:
A lot of adjectives in that one.

Erin:
And they are all true.

John:
Yes they are. Yes, they are.

Erin:
Totally kidding. And then she also asked how did your loss of vision affect dating life? So how is how we'll start with the first part? How was the dating world before you found me?

John:
Maybe we should start with a second question. First.

Erin:
How did your loss of vision effect.

John:
Yeah, because.

Erin:
your dating life.

John:
Well, again, I think as we talked about seeing people or what, what was the question before about when you see, when you meet somebody or when you, when you,

Erin:
When you meet a new person who isn't familiar?

John:
No, just when I'm, like I was saying, I could be standing next to somebody. Not really,

Erin:
Oh yeah.

John:
not really know who they are. So there's a lot of social implications with that. Right?

Erin:
Right.

John:
So wherever I am, there's a lot of visual cues are mostly gone for me. There are some visual cues that I can still pick up on. They gotta be pretty, pretty big. Like if I see a fire, okay, I'll probably see that cue. But if somebody winks at me or gives me like the waves at me, or some sort of indication that they want to talk to me, or they want to engage in some, you know, something most of the time I'm going to miss those. So the reason I say this might be better to start with is because before that I was into that, you know, as, as a normal sighted person. So I also should mention maybe that my, my vision change occurred when I was 19 years old. So my dating life was probably like 17 years up to that point.

John:
So there was a change in my technique, I guess, or how, cause I had to adjust a lot of social things there. Right. And what those things are. I don't know that I can tell you. Cause I don't know that I ever remember exactly. But whatever those adaptations were for meeting people and then going through the, the understanding of what it is and why, when I'm sitting across the room from you, I don't, I don't know that that that's you. Right. So how did that change for me? I mean, all those things changed. Of course. What was the second part of the question or the first part of it?

Erin:
Yeah. That is the second part. The first part was, I mean, it kind of goes hand in hand. How was the dating world before you met me?

John:
Well, so for the first, you know, 17 or so years of my dating life there were, it was pretty normal. You know, I'm just a nerdy guy that, you know, does whatever he does. After that it was, it was definitely different. I mean, life was significantly different. So that was just one of the things. And I think I relied a lot more on kind of like networking with people instead of the, the total random run into was going to be a lot less likely to happen.

Erin:
Yeah.

John:
So I would be, I did some online dating. I did some of that stuff and I would just work, you know, which is, I think normal, normally people do that at least nowadays. And then also just the normal, you know, in your circle of friends kind of thing. But I relied much more on those than I did just, you know, randomly running into to, in this case, girls was, was a lot different. So, and then of course that's, I think how we met, right? How did we meet?

Erin:
How did we meet?

John:
Yeah.

Erin:
Through a friend of mine that I worked with, who volunteered with your parents, feeding the homeless. And I did not know your parents at the time.

John:
Nor did you know me.

Erin:
And I know you, we only knew the mutual friend and I just happened to work with her. And she happened to volunteer with your parents and got to talking.

John:
And said, there's a homeless guy that you might want to check out.

Erin:
That's right.

John:
And you agreed to try that.

Erin:
I did. Yeah. She said, I have someone I want to set you up with, but I don't know anything about him.

John:
Wow!

Erin:
But his parents are great.

John:
Well, what does that mean? I mean, I guess that's a good start.

Erin:
She said

John:
His parents were terrible.

Erin:
She said his parents are great. And they just said nothing but wonderful things about him. And I think you should go out with him.

John:
What do parents say about their kids though? You know, what are they going to say?

Erin:
This is true, but you know, I trusted her.

John:
Well then let me ask you a question. Did she mention anything about the vision and that discussion?

Erin:
She did?

John:
And what did she say?

Erin:
Just that, let me think about this for a minute. She said that he went to Texas Tech University.

John:
Strike number one.

Erin:
That is, yeah. I was like, okay, what else do you got? That you

John:
That's Texas Tech for those unfamiliar.

Erin:
Oh yes. Sorry, Texas tech. And that you worked for family business at the time.

John:
Okay. And you didn't go to Texas tech?

Erin:
No, I am an Aggie, Texas A and M.

John:
Through and through.

Erin:
Through and through.

John:
A two percenter though I might add, which makes it kind of what's makes it tolerable.

Erin:
Now why did you have to throw that in there?

John:
Because it makes it tolerable.

Erin:
Yeah. I'm not a, you know, I love my school, my university, but yeah, two percenter. They got to come up with a different name. Two percent's really low.

John:
I think it might be pretty true based on some of the Aggies I know.

Erin:
Yeah. I'm not, I don't want to say I'm not a diehard because it's, I mean, I love A and M but anyway, we're veering off course that you went to Texas tech that you worked for a family business at the time and that your parents were great. They spoke very highly of you. And that, I think she just said that, that you had gotten sick in college with spinal bacterial meningitis and that you had lost most of your vision.

John:
And that I'm homeless and you should check this guy out.

Erin:
That I should. Yeah. Yeah.

John:
And you said, Hey, it sounds great. What a catch!

Erin:
I actually said, I need to think about this. And it was not because of the description that she had given me at all. It was the fact that she's like, but I really don't know anything about him. I'm just getting this information from his parents. So I was like, Oh, I'm going to have to get back with you. And then it was just something.

John:
You got a little tickle.

Erin:
I, you know, I think it was just God telling me that, yeah, there was just go, just go. And I had this feeling that I needed to go. I needed to meet you.

John:
And 50 years later here we are.

Erin:
Yeah. The best years of your life.

John:
But when we were, so we talked on it, we did. So I don't know if our relationship, if it started, you know, I don't know in air quotes normally, but we did. I think our first interaction was through email.

Erin:
I did. She our friend now, our friends, this was the woman that I worked with, but she is now.

John:
Yeah. She was your friend.

Erin:
She's my friend.

John:
Now she's my friend.

Erin:
Now she's our friend.

John:
And she, I believe if we're talking about the same person has a slew of Texas Tech.

Erin:
Oh, they are through and through like, like I am about Texas A and M they are the same thing.

John:
She's an alum as well. So let's not underplay that cause of,

Erin:
Well, I think her husband didn't they both go there and their, yeah. Their children.

John:
Yeah. Barn of kids. Yeah.

Erin:
So yeah, I said that I wasn't about to give my phone number because she didn't know didn't know you, I had never met you. So I said, here is an email address that he can have. And if he wants to email me, he can.

John:
And I did.

Erin:
Because didn't she and she reached out to you. She emailed you, correct?

John:
Yes.

Erin:
So she got your address, I guess, from wasn't your mother.

John:
I was, I think it was one of my parents' friends.

Erin:
Yeah. Who also volunteered in the same group and feeding the homeless. Yes.

John:
Who I had known for quite some time as well.

Erin:
That I did not know.

John:
That are now your friends.

Erin:
That are now my friends!

John:
Look how that works!

Erin:
So I sent you my email address and or her, I gave it to Kerrie or our friend

John:
Yeah, Kerrie!

Erin:
Kerrie!. And I think you emailed me. It was the end of, I was a teacher at the time and it was the end of the school year. And so we were wrapping up with that and I think I got an email for you the next day.

John:
Oh no, I'm sure I waited the requisite number of days before.

Erin:
Oh, no, no, I have saved all the emails. I can go back and it was within a day or two.

John:
Okay.

Erin:
So we emailed and I think we emailed for a couple of weeks and then that turned into, I felt comfortable giving you my phone number. We were texting and

John:
Yeah, I don't, I don't know if it was, it seems like it was shorter than a couple of weeks.

Erin:
Maybe it was.

John:
It might've been a week or so.

Erin:
Yeah. And then I gave you my number and we were texting and then that led in, you know, led to phone calls. And then, and that summer, I remember I was really, I was busy at work meetings and staff development, things I needed to go to. And I was also traveling a lot that summer. I remember. So I was actually my best friend, I would say, who asked that question earlier. I was at her house when,

John:
Oh, that's right. There was some Facebook stalking that occurred.

Erin:
I was not on Facebook at the time. No!

John:
That's correct. Cause I I won't hide the fact that I, I looked there too. Cause I, I did not.

Erin:
You did?

John:
Have a visual. Of course

Erin:
I don't. I don't think

John:
I don't. Yeah. I did not have a visual.

Erin:
I'm surprised you went out with me then, because back then you were a big Facebook person. You got me started actually another good friend of mine got me started on Facebook, but then I just never really got into it.

John:
Well, I did have an out planned.

Erin:

You had an out planned?

John:
Yeah! We'll talk about that.

Erin:
I apparently, I don't know everything!

John:
But you were at your friend's house.

Erin:
I was at my friend's house and I did not in very quickly through emails. And then when I was actually, you know, cause emails and texts, you can't really, you know, it's hard to understand the tone and all that. So once I was actually talking to you on the phone, I learned that you were very funny and I don't want to say not serious, but you just joked around all the time, which is I love that's one of the things that when I was looking for somebody, they needed to have a good personality and needed to, I like to laugh. So I needed the person to make me laugh. And it was very obvious from the very beginning that you could do that. So I did not know. You told me that you were six, four and a soccer player that you used to play soccer, which I did not believe for some reason.

John:
Yeah. I don't know. I'm I'm still that tall. I'm pretty tall for my age, but that it's accurate.

Erin:
So I did not have Facebook, but luckily my friend did. And so I got on Facebook and typical, John has everything on lockdown. I mean, I could not click on your profile picture or anything.

John:
It's only for my friends and the algorithms of Facebook.

Erin:
Yeah. I had actually, before I got on Facebook because I was not on Facebook. When I say get on Facebook with my friend, I did some searching of my own because I think I knew the name of the, the family business at the time. I think you had told me that. So I was doing some research online as well through

John:
Like the FBI and

Erin:
Well, and yes. I do have connections not with the FBI, but with some people that could have looked you up.

John:
and might have, it sounds like.

Erin:
And maybe they did. I don't remember. And I found your dad first saw his picture, but I could not find a picture of you. So when I went to go visit my friend, I like you're on Facebook, aren't you? She said, yes. And so we, I went upstairs and got onto her Facebook and found you, or what I thought was you and you were wearing a particular shirt. You know what shirt I'm referring to?

John:
I recall, I remember that photo and I was, I was in a band in college.

Erin:
Oh yeah. So you were wearing that shirt and you had told me that you had always I think, you said that you had wanted to play guitar, like be really good at playing guitar. So in the profile picture, this fabulous portrait of yourself, you're wearing this shirt. And then in the background I see a guitar and I'm like, that's him.

John:
But I think I was wearing a wig.

Erin:
You were wearing, it looked like the best that I can describe was the comedian Carrot Top his hair. It was just, and you had this, I call it a headband. But

John:
Yeah, that was a head band

Erin:
It was a head band wrapped around this wig, this red, orange, red wig with just hair going all over the place. It looked kind of curly, but not, I think you had your finger in your ear.

John:
I believe I did. Yes.

Erin:
And you had the shirt, the band shirt on.

John:
Do you remember the name of the band?

Erin:
Yeah, of course I know the name of the band, The John Grimes band.

John:
Yeah. So that would be another indication. That likely was me,

Erin:
But there were other John Grimes's on Facebook. There are a lot of John Grimes, but for some, it said where you lived at the time. And I was like, that's the only one there. And I know you're on Facebook. So I was like, this is him. Like this can't, can't be this isn't him. So I yelled for my friend. She comes upstairs and we're both just cause we can't enlarge the picture. So we're both really close to the screen trying to get as good of a look as we can visual. I was like, that can't be him. That can't be him. That's not him. But it was you!

John:
And you agreed to go forward.

Erin:
And I still went out with you.

John:
That in and of itself is pretty amazing.

Erin:
But you, I think you had told me at the time that you had like dirty blonde hair or something like that. So I was like this gotta, Oh, that's what I kept telling her. I was like, it's gotta be a wig that has to be a wig. But then you joked around all the time. So I, and I had, obviously I had not seen you. So I didn't know what you were telling me was you just being goofy or if it was accurate information.

John:
Now, were we talking on the phone at that point?

Erin:
That was our first phone conversation was that night was at her house. I remember I had a cold and I remember telling you that this is not how I normally sound.

John:
Did we discuss the picture on Facebook or were you holding that? Cause you didn't want to seem like a stalker.

Erin:
I withheld that information, but little did I know you were doing the same thing.

John:
Of course!

Erin:
I was just a little bit more successful than you were. Oh no. You did tell me that later on. I think you went to my school website and found a picture of me.

John:
Yeah. Later down the road, there was a picture posted of you on a school website or something.

Erin:
Yeah. my website and my web page. Yeah, my class page.

John:
It took, I didn't find that for some time. Well maybe we should leave it there. And the next time we pick it up and we'll talk about what my out was.

Erin:
I no, I want to know what the out was. Now. You had an out, I didn't have an out.

John:
I'm sure you did.

Erin:
I didn't!

John:
I find that hard to believe.

Erin:
I'm not that kind of person.

John:

So after a few emails immediately, you're just like, well here comes

Erin:
You and I. Our first date was, what about a month after you and I had started?

John:
Well, and I also should say my out was if, if I did not find you visually pleasing, that's my, I mean, everything was fine up to that point, but we hadn't seen each other. Right. So I had an out, I had an out for the, if you weren't visually pleasing.

Erin:
So what was the out?

John:
We will talk about that on the next episode of the ambiguous blind podcast.

Erin:
OK!