Kate Hirsch and Adam Hirsch
Interview ID: LMN001577
DescriptionKate Hirsch is interviewed by her husband Adam Hirsch about his illness, Guillian-Barre Syndrome and how they coped with it.
Subject Log / Time Code
- Kate Hirsch
- Adam Hirsch
Recording LocationsStoryCorps Lower Manhattan Booth
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00:02 My name is Adam Hirsch. I'm 36 years old today is June 26th 2009. I'm in Foley Square in New York City in New York in the United States of America and I am Kate's husband.
00:20 And I'm Kate Hirsch. I am 32 years old and today is June 26th 2009. And I'm also in Foley Square in New York City. And I am madame.
00:36 What did you learn about Gian Beret syndrome in your nursing school?
00:40 Wow, that's going back a little bit.
00:46 Learned that it was a
00:49 A nerve type syndrome that could cause paralysis usually from the feet going up and works its way up your body and so is Progressive, and it could paralyze, you completely and paralyze your, the muscles used to breathe. So, some people needed to be on a ventilator.
01:13 And that it would then gradually improve and the paralysis would then kind of regress from the head back down towards the feet. And that's kind of what I remember from textbooks. It was kind of a short.
01:31 You know, area that we kind of studied in our when we were doing the adult portion of our in nursing school of our learning. And other than that, it was kind of something that you kind of kept in the back of your mind as one of those weird syndromes that we learned about, but I didn't really think much more of it.
01:54 At, what? Do you remember, was the first symptom that I told you about last November?
01:59 You told me that you couldn't touch your toes that you were having trouble.
02:06 Start when you were, when you tried to stretch that when you leaned over to try and touch your toes, you just couldn't quite reach where you had been able to do that before. So that was the first thing. I remember you saying, and then the very next thing, you said, I have some tingling or weird pains down the backs of my legs. And so, I was thinking of maybe he slept wrong, did something to his back. But but yeah, that's the not being able to touch your toes with the first thing. I remember you telling me that week and I told you more, what did, what did you think or were you thinking at? First? I definitely thought it was something that you done to your back and that's why I suggested going to the chiropractor. I thought maybe slept wrong. If we had pain down the back of your legs. I was thinking of maybe he pinched a nerve or something. So back was the first thing I thought but then when you started talking about
03:06 Numbness and tingling in your feet and hands. And that was closer to Thanksgiving. I started to think this isn't his back. It's something different. It's a then. I start to think more neurologic problem, but I didn't know what.
03:26 Exactly. What went through your mind when I called you, Friday was Friday morning and said, this is still going on.
03:34 What you think?
03:39 I definitely thought that you needed to be seen by someone. So we have talked on Thanksgiving. So before you know Thanksgiving night tonight at Thanksgiving, I done a neuro exam on you and you kind of passed all the things I could be. No after dragging out my textbook and going back over trying to remember how to do an adult neuro exam. When I work with babies. You passed all the things that I could do or test. And so, but it seemed very much like there was something neurological going on the neck of you have now had tingling in your feet and your hands.
04:13 And Adam.
04:15 When you call me on Friday morning and said, so we had started. When we were talking about, you going to see your primary care physician or Friday, morning, even though you'd never seen him before, and then take subutex. And when you said that, it was still going on. The thing that really told me that you should skip primary care and go right to the, ER, was when you said you're having trouble seeing the monitor because that was not right? And I didn't know exactly what that like was your blood pressure or was it something else like but that was much more of a serious sign that I wanted you to get evaluated right away. When I went to the Edie, you saw that you detox do the same. They should be the same narrow work out that you had done on me just the night before. What did you do? What did you see when you and what did you notice? When you wash them doing it? When you try to put one foot in front of the other? So he'll dato basically you were really wobbly. You couldn't when the night before you have been able to do that without much problem.
05:15 All the sudden, you know, little less than 24 hours later. You couldn't really put one foot in front of the other without nearly falling. And that was the major thing that was different from from what I had. The abbreviated neuro exam that I've been able to do on you, that was totally different that beginning to realize that there was something really wrong and
05:47 That was kind of like, I don't know. I don't know what this is, but this isn't right and this isn't how you're supposed to walk. Your young your Healthy year, totally active. You're not supposed to wobble when you put one or the other older people might have a problem with that like elderly but not a thirty-six-year-old 35 year old person. So
06:08 When they checked me into the hospital and I would admit it and they dressed me up in a Johnny and took me upstairs. You took my clothes and my backpack home.
06:19 What is that? What is that mean to you? What is that? What was that like walking in on going home with that? I didn't I didn't really know. I mean, I guess by that time we kind of knew that they had diagnosed you with Chi ombre and I think we were still kind of
06:37 Reading up on the, on the syndrome to figure out like what this whole
06:42 Syndrome was going to be in what? What kind of?
06:46 Of course you were going to have. And so it was sort of a okay. He's going to be in here for a little while, but I didn't really
06:57 Think of it.
06:59 Has anything too terrible. I was just like, oh so. Well, you know, I'll go get them changes of clothes and you know, I actually get off to get. Do you know that house to wear a hospital gown, but at least bring the underwear or socks or whatever and your toiletries. And but I was a little weird to take your clothes home.
07:20 We have been planning to get both of us. Work on Thanksgiving. We have been planning to do our own little mini Thanksgiving on Saturday, which of course we couldn't cuz I was in the hospital or what you ate instead.
07:31 Order in the hospital food. I think I ate sandwiches from the cafe. That was near the hospital to do.
07:42 I think that's probably where I ate Saturday, so a sandwich and chips and a drink. That was easily attained, obtainable and portable. And could be brought back to your room where I could eat by your bedside or
07:58 But I don't remember exactly tell me about are you when you, when I went walking around the unit, so we started doing walks around the
08:10 Before that you were on so that we could kind of keep you mobile and up and active and stuff when you are already having trouble walking on your own. So I would go and support you under one arm. Typically, put my arm under your armpit, the kind of you know stabilize you and we would just block in a circle or two around the unit to kind of give you some exercise and keep your muscles working and
08:38 I progressively got harder and harder for you to walk by yourself and you needed a little more assistance and that was hard to watch. And I also felt like you're you're tall and you're you know, you're not you don't weigh a ton but you weigh more than I do actually know. You don't forget that you're you know, if you if you felt like it was going to be I was going to have to support a lot of weight and I did so you did follow. Yeah. We went out for a walk. We got our walking privileges. Revoked probably like 3 days and I think we are going around the unit and you had one hand on the railing of the wall, and I had you under your other arm and
09:25 You just wobbled and we both kind of went down and you went down to one knee and so it was kind of a slow controlled fall. So it's not like you hurt yourself at all. Really other than probably barking, Ernie a little bit on the floor, but got up a chair and two people who voiced you up and roll, you back to your room and they were like, you have no you can't go out walking anymore without a walker or a physical therapist, an occupational therapist by your side. If your wife is no longer allowed to escort you around.
10:09 We had only just found out that weed that you were pregnant on November 10th. Secret first. I wasn't too hard. Luckily. I wasn't feeling any sort of nausea or ill effects of the pregnancy, which was a blessing. So it wasn't like, I was having to discreetly run out of the room because I was sick to my stomach. I was just tired and that could be easily explained by the fact that you were in the hospital. And I was there a lot.
10:50 So kind of got it kind of went to the back burner, like, it went into the background and I didn't really think about it too much because I was focused on you and what was going on with you. And so, you know, it was just kind of the way I was, but I didn't really give it much more thought and occasionally, when people weren't around you would you know, put your hand on my belly and be like, how's our baby? How are you feeling? You know, we have a little, you know, quiet conversations about you know, the baby that was growing inside me. But other than that, you know, I kind of was it kind of was, I don't know, not really thought about too much.
11:32 He said you were at the hospital. What did you do? When you went to the hospital? I worked or went home and slept.
11:44 You know, Kingsley I would be for naps and then the afternoon for a brief period and gone back to her apartment and luckily with live close to the hospital. So it was a short walk but
11:56 But really, it was work being with you at the hospital sleeping eating. It was kind of those basic needs and that was about it and any free moment. I wanted to be with you.
12:11 You're a nurse practitioner. How much did your medical training are in sort of your medical Persona that you have? When you're a professional Persona, how much is that come into play? During this time? It was definitely helpful in understanding some of the lingo that the doctors use when they were describing your symptoms and kind of course of treatment and plans that understood tests and what they were looking for to certain degree. But since I take care of babies, that wasn't always, you know,
12:41 It wasn't like I knew exactly everything that was going on. But I understood a lot, what they were saying, and it was easier to kind of interpret for the rest of our family. So we could kind of. So I could help kind of explain things that you don't the non-medical members did not get her understand and also help you understand why they were doing things and what they were looking for. So it definitely helped.
13:09 A little bit. I felt more prepared kind of and unless I think overwhelmed by the information because I had some some knowledge of medical mileage.
13:23 So I think it was yeah, I think it I think it helped and it made me feel a little bit better, to kind of not feel so,
13:32 You know, addressed in terms of all of this information and sometimes really complicated information about what was going on with your body and what the syndrome really meant and what it could do. And that's the thing about the day you that we that we high-fived. So you said this, so this whole process had been kind of slow for you. Some people come in with the syndrome and get really sick really fast and you were kind of slower in that course. And so, it took about two weeks, the first two weeks. We were there, you know, it was you, you you basically lost things and by degrees and slow degrees. And, and so, you know, you know, you came in walking and then you had start have trouble walking, and then you had to walk with a walker. And then, you know, it progressively got to the point where it was hard to get you out of bed because your muscles were coming becoming more and more week and more more paralyzed.
14:31 And so we've gotten to a point where, you know, you were in bed pretty much all the time. I think you
14:38 I trouble even moving your arms and hands at this point, but you were still breathing on your own and that's what we were really excited about cuz they you know, they had mentioned along the way that there was a possibility that you would need to be on a ventilator. And we kind of felt like you had sort of hid. Your we are close to your bottom like the lowest point you were going to go before you start to get better and you were still breathing and talking and I'll unassisted and we were like right on we've, we've escaped the ventilator.
15:15 Food. So we kind of like high-fived each other and we're like, all right. This is one portion of the syndrome. You're not going to have to experience.
15:24 So we don't have to be wrong. Totally wrong about the day that I got in a bit intubated. When did you know? It was happening? I was at work. So I was just a couple buildings away. I work in the same hospital that you are admitted in and
15:39 I was I started carrying my cell phone on me all the time when I was at work, even though we're not supposed to have cell phones on the unit. So I just put it on silent and visit just in case like when I was at work, like you needed me or whatever and so I was actually a delivery and my phone rang and I can feel it in my pocket. But I was you know, helping out a baby in. If they couldn't get to my phone until after I got out of the delivery. I was going to the elevators to go back down to the NICU and
16:12 Saw that I had a message and I was just starting to listen to the message, which was your mom. When our friend John send a text message saying, Adam going on ventilator. And that was that was basically the way I found out it was like, as I was listening to your mom, stay out of it when having trouble breathing their bad to put a breathing tube in him. He's getting admitted to the ICU, like, you know, and it was just a total shock because I hadn't expected it. You know, I went to work thinking, okay, he's fine. I'll come see him on my break. I was actually trying to get stuff done, so I could take like an hour break and go over and see you and
16:55 That was like the last delivery I was going to go to before I handed over the phone to one of my colleagues so I could come over and visit. And so yeah, that was a definite shock in the room.
17:08 I didn't see anything. At first. I saw your mom because they wanted to get you settled and I see you first. So they had us, wait out in the waiting room for almost an hour while they got you, you know, on sedation, drips and got you, you know, you are already. You already had a breathing tube and you are connected to the ventilator, but they were getting you settled basically. So the first thing I saw was your mom in the hallway, waiting for me and
17:36 And we just, we went into the waiting room, and we sat down, and we were just kind of it. I was like, what happened? Like, what did I miss? And so that was the, you know, she was telling me the story while we are waiting for waiting to be able to go in and see you.
17:52 What would you like seeing me with a breathing tube in?
17:54 Scary sad, you looked I mean you you were on sedation, but they would you know, they were kind of working on trying to find the right amount so that you wouldn't drop your blood pressure. And
18:07 You know, there were times where you were clearly kind of out of it, but you would kind of come to an open, your eyes, and you looked scared a little bit, and that was really hard to see.
18:20 And you had the tube in your mouth so you couldn't talk, you know, and so your primary way of communicating with us with basically not available because there was an apparatus in your mouth and in your Airway. So you just had expressions and some of them were bleeding because you were obviously, you know, on medication to keep you try to keep you comfortable, you know, not in pain. So, but you, I remember seeing you in the room and I see you and how do you open your eyes and look at how this kind of like, why do you stare like, what the heck just happened, you know, and that was kind of and then it would then your eyes would close and you would kind of drift off.
19:06 So it's scary when we had the really bad day. We had a doctor who told us that you gave us orders at the stats on people could have as much nerve damage as the tests were showing that I had. That there were only a small percentage of them came all the way back out of it and everybody else had partial or no, recoveries. What were you? What did you what you want your mind when when he was telling us? That?
19:35 I can't believe it was happening. Wondering why it was happening to us. Like, how did we get to this point and trying to
19:44 Got my brain around the fact that you might not be the same person you were when you walked into the hospital and how you know, the man I married might not be the same, you know, upright walking around active person. So it was stating it was really it was it was like someone punched me in the stomach to tell me that
20:08 This really hard and then been came in.
20:16 Thank you that. Well. We're going to focus on you being in that 20%, that makes the four cover it, cuz it was.
20:23 Hard. Not to think that you would get better.
20:33 That's a really bad today.
20:42 It was the next day or maybe the day after.
20:46 That we that we said we were going to tell my parents that you were pregnant. What do you remember about that day? You came up with a really good idea of a way to tell them. So are you headed home?
21:00 Very early on after you got admitted to the ICU and you had the breathing tube in your mouth, you know, you tried signing with me and you had taken sign language in college, and I had learned it. I'd learned the alphabet was younger but didn't even remember all the letters. You got frustrated, trying to sign to me cuz I couldn't figure it all out. And so then the headboards that you could we can kind of be like, okay bro or this Rover this order, try to find the letter, you were trying to spell out his very laborious and and you came up with this idea, to put a pen light on a hat. And so that you could move because you could still move your head. And so you were going to spell out the letters. And so we made a letter board and we had we rigged up this whole Contraption for you to be able to spell stuff out. And so
21:46 We decided that, you know, we had the night before we gotten really horrible today before it got really horrible news. So this is the time to tell our parents that we were pregnant with a little earlier than we were planning, but
21:57 So, you decided that?
22:00 You're going to say that you were going to make every effort to be better by July.
22:06 So you're spelling without and one of them? I think I think my dad was riding down the letters that your spelling out. So is my dad and my mom and your mom in the room and your spelling this out and so they're writing it down weed, occasionally get the letters in the 80s in the wrong with sequins. So it wouldn't be like, you know, the words would not have had a baby have if they were working out you're moving along and then so he's like, you know, you're like, I'd like to be better by July and I don't know if my dad said, why not sooner?
22:43 But you said because July is when the baby comes, as I remember my dad thing. What baby whose baby are baby, and that's when they were like, oh my goodness. And he was like, oh my God. You poor thing.
23:06 Do you feel like it's a horrible time to be pregnant? And I was like, well, we are no going back now.
23:14 She was resourceful sexiest. I can tear the man thinks he was really happy, but she was also kind of like, oh my God, what a horrible timing. So
23:27 And did that successfully banished? Some of the, the Demons of the day before? And that's exactly what we all needed that day.
23:43 You know, I mean it was still there, but we got to think about something else for a while, which was a relief and really helpful.
23:51 So I got out of the picu after a week and then about a week after that. I went up to rehab and I'm curious when you kind of know for yourself though. I think he's getting better.
24:07 When you were able to start to move stuff again, you start to be able to you know, be able to punch your hands just a little bit. And so we were able to put like a sponge in your hand and you'd be able to do small squeezes on it. And that was like the first thing I remember, sort of kind of coming back and then you could move your arm just a little bit. I think it was just one.
24:27 And then, as we got into January, like shortly after New Year's, you could all a sudden, move your knees like kind of lift your knees off the bed, when she hadn't been able to do for a long time for weeks. And so we started to see just like slow things start to come back and it was like, oh thank God. We're on, we're on the upward trajectory of improvement. And that was such a relief to see to see you watch. You get things returned to you that slowly Gone Away by degrees. So even though I can take from the inside even though I still wasn't sleeping all that well and having some of those are just horrible sleepless nights. When I had been able to move yet, just the ability to seeing something. It had been gone. Come back.
25:15 That made all the difference in the world.
25:21 Did things get easier for you? When I went up to Helen Hayes, or I went to which of the rehab hospital or or harder?
25:30 Easier in a sense that I was less worried about you. I felt like, I mean, when you were in the hospital, we tried to be there to have someone there either. Your mom, need some friends sitting with you all the time as much as we could, because you couldn't, you got to a point where you couldn't reposition yourself. You got really uncomfortable. You got very skinny. And so, to be able to help you like, put pillows over. But Phil is underneath you and roll and then so that we can, we can have to be constantly calling nurses to help. You know, that was kind of a relief to. When you went, you went to rehab that. You had people there all the time and like you were in a room where you had and a nurse's aide constantly there 24 hours a day because you were still at you still had taken in.
26:20 But that was a huge relief to know that there was someone there, like, all you had to do was lift your head and kind of motion or be like, can you help me and someone would be right there to repositioning and so it felt, you know, it was 45 minutes away which was hard cuz it was a drive and, you know, it wasn't like you could just pop over and see you. Like I had been able to do when I was at work, when you're in the hospital, but knowing that you had someone people there all the time to be able to help you was a big relief for me. So it got easier.
26:57 What was it? Like when I got my voice back to being able to hear your voice was just the best thing. It was so cute cuz he really sounded like Kermit the Frog. When he first got the little valve on your vehicle. So we could hear your voice. And so it sounded different and I kind of wondered like, is this the voice he'll have forever if he never gets his strikeout, which would have been totally fine cuz it was just so nice to hear you speak and not have to, you know, have you have to spell everything out cuz you are you you went through that letter board really fast in a lot of times like people can keep up with you and you get frustrated. And so it was finally. So nice to be able to have that in media. See, when you wanted to say something, you could just say it, you didn't have to be like indicate that the board, you know, I'm trying to tell you something and
27:50 But it was this slightly higher like tone to your voice and almost like you had something stuck in the back of your throat, a little bit, but he was really cute. You can just sounded like Kermit.
28:07 You told me, you love me. Yeah, and that's you're just the best cuz the first words out of your mouth her. I love my wife and it totally made me cry. And this is the best thing that you could have said cuz I love you, too.
28:25 Yeah, I dream of the day at Helen Hayes when they leave. Heard me up out of the wheelchair and I got to put my arms around you and goals for, you know, your rehab process and she's really depressed. Cuz your first goal that you said you like, I want to stand up and hug my wife. Like that was one of your more immediate goals that you were looking to do cuz we hadn't done that in.
28:52 Over a month I think cuz you know you just been in bed. And so she was like, all right, that's a great goal. Okay, we're going to work on that. So, you know I came in and was watching your therapy and they're like you guys. Yeah, you should totally hug. We're going to we're going to the two people kind of just block your feet and hoisted you up and you just kind of weird wobbling there a little bit and you were able to put your arms around me and that was the best thing ever. It was just, it was so amazing to have you to be able to argue and like standing up and not just like I have to crawl in your bed and kind of cuddle with you. I feel your arms around me know, it was awesome. That was one of my favorite moments.
29:51 It was incredible. It was exciting a little bit scary. Cuz I was kind of like, well, you know, we weren't quite sure. We would you be coming home in a wheelchair. And would you be coming home on crutches? You know what? We are going to have to do.
30:07 So we were but it was great to finally have a date to kind of pin our hopes on be like, okay, this is when Adam gets to be able to come back and return to kind of
30:19 Normal living outside of a hospital or Rehab Hospital, which you've been away. I mean, you've been
30:26 In the hospital for almost three months at that by that point little more then and you and I have talked about how when I came home and we would both probably be really interested in things return to normal that we would both really want things to be like normal right away where they
30:46 Not necessarily pretty normal. I think I mean, you came home, came home on crutches and you immediately were immediately wanted to cook a meal coz I love to cook. And I mean the things that were different ways that it was harder for you to be had to do a little bit of figuring out how you were going to get the pot to the stove and do that with your crutches, and, you know, kind of navigate stuff and kind of get water into the pot and how that was going to work. So there was some adaptations, but
31:17 It was pretty normal. I think I was a little bit on high alert because I was worried about you falling and so I felt like I hovered just a little bit and I have wanted you to carry your phone everywhere in case you did fall so that you can call for help if you feel like okay, but I do agree, but you were, you were a lot more stable than I think I was letting myself think you were.
31:48 But it was just you know, it was amazing to have you sleep in the bed next to me because for months I've been by myself or with the calf there been this big space, you know where you would sleeping. It was, you know.
32:05 It's great to have you back and back into kind of working towards, getting back to our normal lives daily routines because my last question is your doing 2 weeks tomorrow.
32:18 What was you tell that kid about this last year? For which will how will you?
32:27 The World Service. Really? That this baby that kind of
32:34 Grew inside me while there was a lot of stress and worry going on about you and that it was a really hard couple of months, but that we had this, you know, awesome little person to look forward to and kind of you had that you had the baby as a as a a goal to get better for and get back to normal to
33:01 I don't know if it'll be hard, too hard to explain what it was like to have. Say, your dad was in the hospital for months and, you know, had to have help breathing and need to relearn to walk.
33:17 It'll be kind of this, you know, horrible time. But then once you start to get better, this amazing time watching you recover and get things back in a time of just, you like, relearning stuff at like a lightning pace and look, kind of be like what the baby will do when he or she learns to walk. And, you know, being said to get more interested in exploring his or her world that you did that just like a year before they did. He did, or she did lose only one here. There's only one baby. That'll be a really huge surprise.
33:58 No, only one baby in here.
34:10 Yeah, I think he you had a
34:15 You had a much different attitude towards that mean. You really took it one day at a time. And you think you the way you dealt with it was I'm not going to I'm not going to try to picture what I'm shooting for. I'm just going to
34:28 Take each Improvement as it comes and all the rest of us were like, oh my goodness. You can move your arms. You can like, pick up a ball. You can throw a ball, like you can start to walk like all these things. Every little thing that you were able to do became this huge awesome thing to celebrate. And I think for you, you were just kind of like, easy easy thing else comes and the rest of us were like, this is awesome. Keep going. So not to anticipate what would happen. If. Yeah, that made me perfect sense. It was a way for you to kind of deal with your, your whole illness and the process of it cuz I felt a little bit like a buzzkill. Do you know, family would come in and then your folks, especially would be so thrilled that I could, you know,
35:23 Move my feet. I mean like you put on your shoes or dress yourself. Yeah. That was the way that you had to that that you had to deal with it. And and so letting us be your cheerleaders for made us feel good and was helpful for us and hopefully it wasn't too annoying for you. But we kind of approached it in different directions. And so we were kind of more of the we're going to keep hoping for more and keep having you work for more and you're just like, I'll take it as it one day at a time. You know, it made sense. Probably.
36:15 It's been a really, really rough road, but having you two to support me through and, and motivate me has been the best thing ever for me. And I can't imagine coming through this without you. Thanks, baby. I love you. Wouldn't have it. Any other way, you know, this is what we do for each other.
36:38 Yeah, but something to have it. I know we can never go through this again. I'd be really happy.
36:49 I don't know what I mean. Like, I think it's just deepened. The, I mean, obviously, I was incredibly in love with my husband and just, you know, watching him, go through all of this. It's just kind of, I think it's deep in those, those loving feelings. That's, I feel like we have a new understanding of each other and in ways that I think we never would have had that had until we had gotten to a place where we were dealing with one of us in crisis. There were areas or areas in our lives that had short of most of the cooking or eating to balance their checkbooks and Cape me to do that while I was spotted out and if there was a great for me was there was no question about that. You were willing to do with that. You were able to do whatever just like you up this needs to get done. This is what we need to do.
37:43 And you can't do it. So I'm going to do it. Yeah, actually seeing your partner.
37:51 Get to exert. That was it was pretty neat and I think it's in areas that maybe you had before. Yeah. Yeah, cuz it was all the sudden there, wasn't I couldn't turn to you and Black. Adam. How do I do this? Can you do this for me? Cuz I don't know how to do it or, you know, I had to figure it out. And so yeah, I had to plug in our AV Equipment.
38:26 Had to set that all up again by myself, but in a friend, but yeah.
38:32 Any luck, I will always be around to plug in the AV Equipment for you. I'm glad they had that back to you.
38:45 Thank you. Thank you. I love you.