Debbie: You know what you need to do as a caregiver; sleep, eat, exercise. Even if you don't know how to get to that point, you've got to work towards it. Because there was some guilt. My daughter, she can't jump and she can't run, she can't feel the sun. Should I be here? And the answer is yes, you should. You should because you have to. You have to find your love, your passion and your active thing to take care of your own body and you have to do it.
Erik: It's easy to talk about the successes. But what doesn't get talked about enough is the struggle. My name is
Erik Weihenmayer. I've gotten the chance to ascend Mount Everest, to climb the tallest mountain in every continent, to kayak the Grand Canyon, and I happen to be blind. It's been a struggle to live what I call a "no barriers" life, to define it, to push the parameters of what it means. And part of the equation is diving into the learning process and trying to illuminate the universal elements that exist along the way. In that unexplored terrain, between those dark places we find ourselves in in the summit, exists a map. That map, that way forward is what we call No Barriers.
Today we discuss caregivers by meeting
Debbie Fisher, who's been a physical therapist for over 20 years and is now also a caretaker for her daughter Grace. In 2014 during her senior year of high school, Grace Fisher's spine was ravaged by a virus, leaving her paralyzed from the neck down. Grace was diagnosed with acute flaccid myelitis and sent to Craig Hospital in Denver, Colorado. There she was introduced to music therapy and adaptive art. This not only helped strengthen her neck, but also helped heal her mind and soul. She worked with Make A Wish Foundation to fulfill her desire to help other children with disabilities through art and music by starting the Grace Foundation, which brings the healing touch of art therapy to other children living with a disability. Most importantly though, we talk to
Debbie about her caregiver journey and how she is able to spend time on herself in addition to all the other responsibilities she faces.
Debbie resides in Santa Barbara alongside her husband Bill and their daughters Grace and Emily. Enjoy the conversation.
Welcome to another edition of the No Barriers podcast where we continue to explore the caregiver community and how caregivers survive and thrive and suffer like all of us and learn a little bit more about the needs in that community. I'm thrilled to be joined today by
Jeff, my fellow cohost, and
Debbie. Welcome to the show.
Debbie: Thank you. Thank you for having me.
Erik: Well, let's get started. We were just talking before the show about our fires that are... Where are you calling in from
Debbie?
Debbie: Santa Barbara, California. So we've had quite a few fires. The recent one hasn't affected us, but we have been evacuated three times and the Thomas fire was the first major fire we had after my daughter's paralysis so it took a totally different turn on how long do we wait to evacuate, what does evacuation mean. And it was interesting. She's on a ventilator and I clean the tubing once a week and I looked at the filters and it was coffee black. So usually when we change out the filter it would be maybe a slight gray. So it just showed you how much terrible stuff was in the air even though we had all the doors shut. But this is an example of who Grace is. So I show her the filter and I'm like "Grace, look at this filter on your vent." And she's like "Thank God I'm on a ventilator. Otherwise I'd be breathing that stuff."
Erik: That's amazing. What a good attitude.
Debbie: Yeah. She has a good attitude.
Jeff: Well all right. So why don't you paint everybody a picture. Why don't you back us up on the chronology line just to be able to understand. I've watched the trailer for the film. I shared that with my wife and my son today. It is remarkable to say the least, and we'll make sure that in the show notes that trailer gets put out there, but I think it's best... We want to hear it from your voice if you could give us your own
Debbie trailer for the odyssey that you've been on with your daughter Grace.
Debbie: Well, I'll take you back to December 2014. My life was pretty busy as a therapist and a mom and a house cleaner and a chef and all of the things that you do. And my daughters were both very busy. So Grace was applying for colleges. So her actual birthday is November 20, but she wanted everyone to have a great time so she said "I'm going to have my party the first day of winter break."
Jeff: What birthday was this for her?
Debbie: This was her 17th birthday.
Jeff: 17th. Okay.
Debbie: 17th. Yep. So she was a funny senior in high school. She was goofy. She had a big blowup slide in the backyard. So she was not into the typical party scene that a lot of high schoolers are in. She was super innocent, somewhat naïve, and she was really into her music. That was her passion, so that kind of drove everything that she did. So everyone started coming into our house for the birthday party with a jumper in the backyard and Grace came up to me and she said "Mom, something's wrong. You got to call 911 or take me to the emergency room." And I said "Wait, hold on. Slow down a bit. What's going on?" She's like "Well I have pain in my neck and I have tingling in my fingers." And I said "Well, let's have you lie down here. Were you doing flips on the jumper outside or what were you doing?" And she's like "No, no. I don't know."
So I took her heart rate and it was 200 and she was clammy. So that was enough. I got her into my car and as we were driving I said "Are you going to be able to walk?" And she said "Yeah." But by the time we got to the hospital, which is only seven minutes away, she said "I can't move my feet. I can't get out of the car." So luckily, being a physical therapist it was pretty easy for me when we got there to kind of help get her feet out and she was strong enough at that point she could get into a wheelchair. That was the beginning. That was the beginning of our incredible journey and life change and never going back.
So when we got into the emergency room I could tell by the look on the emergency room doctor's face that this was serious. And on that particular day the paralysis started at the feet and then it slowly crept up. By nightfall she was paralyzed from the neck down and she was intubated. So she was put on a ventilator around 9:30 PM.
Jeff: That first day?
Debbie: Yes.
Jeff: Holy cow. Wow.
Debbie: Yeah, yeah. And to take a step out of this kind of strange role of caregiver. So Grace is telling me... So she's about to be intubated and as this paralysis was creeping up, when she couldn't move her hands and she was saying "I'm having a little bit of a harder time breathing." I knew what was going to happen. Before anybody told me that she was going to be intubated I knew that was coming down the pike. She said "You're going to need to call my piano students that I have tomorrow and tell them that I'm not going to be able to teach them and we're going to have to reschedule my own lessons." So here is a kid that is still thinking their mom's got it handled. Mom, just be my secretary. Call these people. You're going to figure it out. And in my head I'm trying to keep a calm voice and I'm just praying to God, like help me through this because this is major.
But in regards to the diagnosis it took three days and the neurologist came in and he said "I've been talking to a researcher in Texas and there's this diagnosis called acute flaccid myelitis." And the second that he said that I thought that's it, because when I touched her legs they were flaccid, they were floppy. Everything about her was floppy and flaccid. So that terminology to me made sense. Now it made sense to me, but then there's no answers for it. There's no treatment for it. And she was just the 101st case. So they were still figuring things out. They didn't even know the proper treatment at that time of what to do or what not to do.
Erik: So then you get transferred out to Craig, for those listeners who don't know Craig, tell us a little bit about Craig and the role they play, because they're really a wonderful institution.
Debbie: Craig is a leading rehabilitation hospital for brain injuries and spinal cord injuries. Craig not only helped us get Gracie mobilized and moving and up in a chair, but they gave her the best chance of getting off of a ventilator. We were there for seven months and at the end of the seven months they were able to put a diaphragmatic pacing system in. So it's an electrical stimulation unit that contracts her diaphragm and is able to help her breathe during the day. So it's a beautiful thing. She can be off the ventilator during the day and I put her on at nighttime. And I don't think that if I were anywhere in California, I don't think that that would have happened.
Jeff: Give us a sense of that period, that seven month period. I know it must have been overwhelming, but clearly you made it through that part.
Debbie: In those initial few weeks I had an incredible amount of strength and peace and I must say it just had to come from a being that's greater than myself. And I asked in my prayers to just please guide me, help me. And I felt this incredible force of peace within me and I feel like it could only have been given to me by something greater because as a parent, I would not have been able to hold it together. If you would have told me what was going to happen to me, I would have said I'm going to end up in the loony bin. The first few weeks was really hard on my husband. I've only seen my husband cry three times in his life and I've never seen him in a state that he was in early along. So for me, early along I was able to kind of have that strength from above, but later on when I got to rehab, that was kind of my low point. And I continued to be prayerful and hopeful and positive and optimistic and all those things that you're supposed to be, that you have to be to take care of your loved one.
And I remember talking to my husband and I said "I don't understand these other parents. They're walking around and they're talking." And I said "I think they're doing so much better than me." And he looked at me and he said "Well, those other parents, they don't know. You're a physical therapist. You know. You know what has happened to Grace and you know what the future beholds for her in a totally different way." Because of course you never know, but as a therapist with 20 years of experience, yeah, I kind of knew. I kind of knew the path that we were taking and with every week that went on and with every month that went on where there was no movement, I knew what that meant. I never gave up hope, but the gigantic, huge weight on my chest, on my shoulders, what that felt like in those lonely nights in the hospital, it's been a process, it's been a journey. Like on your No Barriers sign that I'm looking at. The bottom one says pioneer. And even though I was given this beautiful 20 years as a physical therapist, we as a family were going to have to be pioneers, pioneers in a new frontier, one that we never asked for.
Erik: As you know
Debbie, there are millions of caregivers in the US alone who are caring for their loved ones who all have obviously very different needs. But tell us during this time period when you find that diagnosis and you say you had that strength in the beginning but then you kind of get to your low point, what are the things that now that you've been through that, what's your kind of advice for folks who are going through that part of their process where they've just heard the initial diagnosis, the weight of everything and what this might mean and not knowing the future? As a caregiver how do you advise folks to take care of themselves at that time?
Debbie: Well, number one, never giving up hope and faith and drawing upon those around you to help lift you and carry you. And although I'm not a veteran, I feel like I have a soldier's heart. That I was a part of a team and that I wasn't going to let my team down. And also, soldiers get injured and what happens? The other soldiers around him, they have to help fill in the gap. They have to lift them up physically, sometimes they have to lift them up. So I was not one for accepting help from others before this happened. It's still a difficult process for me. But when you had asked me to be a part of this podcast I feel like anything I can do to connect with other caregivers, it not only maybe can help them, but it helps me because we lift each other up. So I have my small pod of my family that we take care of each other and we're a team, but there's a larger group here, a larger community and we have to help each other out and it is a pioneer that is not touched by so many souls. People can tell you they want to help you, but not unless you've walked in any size shoe. My shoes are big. With my girl on a ventilator they're big. But anybody that's had a little bit of a rehab experience knows what I'm talking about.
Erik: Tell us, in this time you're playing the role of caregiver for your daughter, but you've got your husband who's suffering, you've got another kid, another child who's going through I'm sure, a lot of uncertainty and unknowns. So not only are you taking care of Grace, but you're taking care of a lot of other things too. So talk about that struggle as well, because I think that's a pretty common struggle with caregivers. Where of course you've got the very obvious person in front of you who is dealing with something traumatic, but you've got all these other things that you're taking care of as well.
Debbie: Well, thank you for asking about that because thee were a few years there where people didn't even know that Grace had a little sister. So thank you for asking about the whole family because I think she does feel like the forgotten child at times. And when this happened, Emily was a freshman in high school and her statement to us was "I'm old enough to take care of myself, to take care of the dogs. So if that were me in that hospital, I'd want both of you guys there. So I can take care of myself. Just go be with my sister." That was her initial reaction. But then a few months went by, year goes by, time goes on and we did, Bill and I did the best that we could given that moment. But there were some things that Emily certainly missed, certainly missed from us.
I think that the important conversations were there though and the love was there. And the main thing that I talked to her about was coping. This is a really gnarly thing that happened to our life. What's positive coping? And I haven't always been an example of positive coping.
Jeff: It's easy to talk about right? It's easy to be like oh, this is how you do it, but then you've got to execute it. It's tough I'm sure. Yeah.
Debbie: And we might make mistakes and I might say that's a perfect example of really bad coping right there. Don't do that. But what is your place? And she does, she loves hiking, she likes yoga. I wanted her to be careful as a teenager in high school with drugs and alcohol. I was worried about her trying to find some other mechanism of coping and that would not be the way to cope, because that kind of coping is only going to end up in more tragedy. So I'm super grateful that Emily was a driven little girl and she's a junior at Berkeley right now and that's a hard school to get into. I'm super proud of her. She is majoring in Public Health. So we have this pandemic right now that's a good case study for her to look at.
Jeff: Yeah. She's not going to have a problem getting a job, let's just say that. Okay, there comes a time when you put so much of your bandwidth into taking care of everyone else that you get neglected. And I think you touched on it a little bit ago, but I think that if I'm a caregiver and I'm listening, I also need personal, emotional health along the way as well. How would you address that?
Debbie: Well, objectively, being a physical therapist for 20 years, I knew what I needed to do and I had some people around me that would tell me "Take care of yourself." But of course, the tragedy of what was happening to Grace was so much bigger than whatever I was experiencing that I thought nope, I can go without sleep, I can go without exercise, and I did for a long time. But the days and days upon weeks upon years of sleep deprivation is so unhealthy. I remember telling Grace and Bill "I don't know if you can die from lack of sleep, but I feel like I could die." That's how sleep deprived I felt. So to answer that question, number one, you know what you need to do as a caregiver; sleep, eat, exercise. Even if you don't know how to get to that point, even if you don't know what to do, you've got to work towards it. And it's taken me a long time to figure it out. But I finally have come to a great place of peace. The thing is, is you can know what to do, but to carry it out, because there was some guilt.
I love playing beach volleyball, I love my feet being in the sand, I love the feeling of the sun against my back, I love looking out at the water and seeing the dolphins. And when I went down to do my favorite favorite activity I felt guilty. I felt guilty because my daughter, she can't put her feet in the sand. Should I really be down here? Should I really be doing this? She can't jump and she can't run. She can't feel the sun against her back. Should I be here? The answer is yes, you should. You should because you have to. You have to. You have to find your love, your passion, and your active thing. What is your active thing to take care of your own adrenal system and your own body? And you have to do it. But there's lots of barriers. We're talking about No Barriers and one barrier is can you, because Grace could not be left alone. When she's on the ventilator at nighttime she doesn't have a voice. She wasn't able to push a call button to have a nurse come in. So I stayed with her. I stayed with her for seven weeks at Craig and five weeks before that and then a long time when we got home. So she was never ever in her room without her because she would cluck like that for help.
It took a team. It took me coming home and training Emily and Bill on what to do so that I could get some sleep. It's taken us a long time to get a nursing staff, but we have a great crew. It's a small crew of three, but they're a mighty group of three and I love them. When they're there I'm able to back away because it's not just me being able to say I can do it. I might also have a loved one that said no, you can't leave. I'm too scared. Grace was scared. She was scared for anybody to do these cares for her. She can't even breathe on her own. So she was scared. So it took some confidence building and it also took me stepping away as a parent, backing up. And it's something we all have to do. You don't have to have a kid with a disability to know that at some point you have to kind of let your kids figure it out on their own and that's hard. It's hard to say "You know what Grace, I'm going to go. I'm going to go to the beach and play volleyball and you've got two nurses and you're going to be okay. You're going to be okay. It's going to be hard. But you got to do what you got to do." So it's been a process.
Erik:
Debbie tell us a little bit... You also at this time give up your career and I think a problem that many of the people that we work with, caregivers included, struggle with is identity. Who am I beyond this thing that I am now faced with handling in my life? Talk to us about that struggle to separate your own identity out of this.
Debbie: I think I'm still working on that. I think I'm still working on my own identity and I think that I was a super hardworking kid. You know, had that paper route in the second grade, had babysitting jobs every weekend, put myself through college. Little did I know all of those hard work ethics were going to come back at me in taking care of my daughter. But I built my value on work. I built my value on bringing home a paycheck or getting my college degree or certain things that I was doing and now I know what I'm doing. There's nothing more valuable. I know that, but there's a little part of me that says gosh, I got my master's degree and now I'm a caregiver. I have to talk myself into it. But that's why we have each other to say "You're doing absolutely what you should be right now."
Jeff: Well, this is a little bit of a nebulous followup from that, but how much of it do you buy into the idea that you were built for this? Do you believe that? Sounds to me like just knowing a little bit about you that you were, but I want to understand what's your spin on that, being just built for something. Like essentially we've talked theoretical with it, like God wouldn't have put you in this position unless you were designed and capable of handling it. Right? I mean, that's what we hear.
Debbie: Well I always prayed like what should I do with my life. So when I became a physical therapist I thought this is what I'm supposed to do with my life. I'm helping people. They're learning to walk again and I get all this positive reinforcement from them. They love my treatment of them. And now I look at it and go you know what, not only was I a physical therapist, I was equipped to being a physical therapist, I was equipped with 20 years of working with different patients. What a gift. What a gift to have had all those conversations with all those other caregivers and all those other patients. What a valuable, valuable thing, a gift. So yeah, I think God prepared me for this job.
Erik:
Debbie, you touched on something there that I think is another important topic, which is when you're a professional caregiver for someone other than your loved one, you receive a lot of praise if you do well, a lot of external reinforcement. When you're caring for your own loved one, that isn't exactly the same. It may not exist at all, but it certainly doesn't exist in the way that it would exist if you're the professional caregiver for someone who isn't a child. So tell us a little bit, because that seems like a really hard thing. The stuff you deal with every day isn't something that someone says thank you so much for doing. Well maybe your daughter and your husband and your other daughter might do. But talk about that struggle.
Debbie: Yeah, there's not a lot of gratitude that goes on, but Grace is 22 now so at least we can have a conversation about it. She looks at me sometimes and she'll say "Thank you so much." It builds a family in a deeper way than you would ever think possible. So yeah, you don't want to say "Hey, thank me every day." But it's okay as a caregiver to say "You know what, I'm just not really feeling like you're appreciating all the effort that I've done." It's also hard to say no. If Grace asks for something and maybe I have plans to go for a walk or something and she'll ask for something that would make me not be able to do that, it's taken me years to be able to say "You know what Grace, I would love to help you with that project, but actually I'm going to go for a walk first." That has been a very difficult tool. But I have to because my time is limited and if I block out a time to workout, I better do it.
Jeff: Yeah, your time management skills have probably just... You're like a zen master at figuring out how to appropriate all your scheduling right now I'm sure.
Debbie: The other thing is I try not to have many expectations because I don't want to be disappointed. So I would love to go to one of these caregiver retreats that they have. I looked at the pictures and I love travel, I love to do things. And I do know it's in my future when this pandemic thing is slowed down a bit, I don't know. I do want to do more, but I try not to build up too much of an expectation, even a simple thing of maybe going out to dinner, because I don't want to be disappointed. So if my nurse calls in and she can't make it then I'll be like okay, that's fine. We'll order out. I'll stay home. It's okay. Then I'm not as sad if I don't build it up too much.
Erik: Well
Debbie, I'd love for you to tell our listeners... This conversation is largely about the caregiver journey. But the story of your daughter and the pioneering thing you guys have done is pretty incredible. So I'd like to go back to that part of the story and tell us how after Craig you continued to pioneer and really do some extraordinary things that I think have never been tried before in certain cases. So tell us a little bit about Gracie and how she evolved from that point when you left Craig to where she is today.
Debbie: Well one thing I'm super grateful for is that I pushed my kids a bit and that I allowed them luckily, financially I was kind of able to give her private piano lessons and that kind of thing, that she had these tools so that when this tragedy happened to her she still had that knowledge base that she can draw upon. And all of us have our gifts and we just need to focus on what those gifts are. We have our deficits and our disabilities too. It's interesting. There's a man that's in the movie, Earl Stewart is his name, he has a PhD in music composition and he called me last week and he's like "You know
Debbie, I know they called Grace disabled but she's one of the most functional people I know. She does more each week than most people I know and she can't move anything." And I said "You're right."
The things that Grace has said helped her the most is we never gave her limitations. We never told her she was going to walk again. We never told her she was going to play her guitar again. But we never told her she wasn't going to be able to. We also did not push things on her. So she learned how to paint with a mouth stick, but it was Grace that came up with the idea. "Hey, can you put an eraser at the end of this mouth stick instead of the paint brush and put a keyboard in front of me so I can play a song?" I would have never said that. She was one of the fastest... Her fingers moved so fast. She was a really high level pianist. I would never say let's get a mouth stick. You're going to play one note at a time. I would never bring that up. But luckily she had those tools in her head that she was the one. So I think when we're helping somebody you want to give them different tools and then let them drive that tool, let them learn how to use that tool so they can master that tool. We can't tell them how to use it, they need to... We can only show it to them.
Jeff: That's very cool.
Erik: Well in some ways that work, I imagine led to your foundation. So tell us about the Grace Fisher Foundation.
Debbie: So Grace was 17 when this occurred and I didn't realize that Make A Wish, they grant wishes not just for children with terminal illnesses, but also children that were going to have a lifelong disability. So Grace's wish from Make A Wish was to start her own foundation. She realized early along, meeting these other children with acute flaccid myelitis, she realized that they didn't have a lot that they could do. So she felt she wanted to help these younger kids. So she started a foundation to help kids with special needs in our own community. So we have done art workshops and dance workshops and she wants to add music into that. So it's been a great way to have our own community. And it's not really just about the arts and dance, which is actually very physically therapeutic for them. It's also about building a community. When I met these other family members I didn't realize how much the parents really needed an outlet as well. So I had never been a part of that population and now I love the special needs community. I'm grateful that I had healthy girls as long as I did. We need to help each other out.
Erik:
Debbie what do you do now, six years right? You're coming up on the six year? What do you do now when the dark times come? We have a participant in one of our veteran's programs who says when you feel the train wreck coming towards you personally, you feel like it's overwhelming. What do you do now to help yourself in those tough times?
Debbie: Well I have a plan. So I lose it like once every three or four months. And the thing is is Grace and Bill, they are like super positive and I don't know, they don't lose it like I do.
Jeff: Wait. What does losing it mean? Like how do you define? What's prodrome leading up to the losing it? What does losing it look like?
Debbie: Okay. Good question. I don't like to go to that [inaudible]. It'll be six years this December. Yep. I just, I don't know if I can do this. I don't know if I have the energy. The self-doubt. Like how long can I do this? You have to live in the present. So you get in trouble when you start looking at the future too much. Like I don't have a nurse for a week, I don't know what I'm going to... So that is one part of it.
Usually it is correlated with lack of sleep for me. And I really have to understand that so that I am patient with myself. Because everyone can lose it if you're not sleeping enough. And what does losing it mean? Crying, yelling, those are the main things.
Jeff: Sounds like it.
Debbie: But I have a strategy. Because sometimes it'll come upon me quite quickly. And the thing is in the past if I were upset I could just go for a walk, but I can't do that. I can't just get up and leave right now. My daughter might die. She might need something, so I can't just leave. So you don't want to feel like you're locked in, you're imprisoned. It's a state of mind of making you know that you have the freedom. You choose to be here. So this is my new plan. My new plan when I start to feel that way is I'm just going to try my best to get a nurse or tell my husband "You're on." Even if it's just like 12 hours. I'm just going to leave. I don't know where I'm going to go. I'm going to go get a hotel. I don't know. But I think just having that game plan makes me feel like I'm not imprisoned. I'm not a prisoner of war. I have chosen this. And most of the time, I really actually live a very good life. I do. I find joy, I find love, I have peace, I have happiness. But every so often I lose it. And I lose it a lot less now than I did a few years ago. So I think that that's where caregivers can help each other out because you've got to talk to somebody that's been through it.
Erik: Well
Debbie, tell our listeners where they can go to learn more about the movie that we've referenced, the foundation, or whatever else you'd like them to go and learn more about.
Debbie: Well you can look up GraceFisherFoundation.org to learn about Grace's Foundation. There is a documentary that was made, Amazing Grace. And if you look up Amazing Grace, Aretha Franklin usually comes up if you just look up Amazing Grace. But if you look up Amazing Grace documentary 2020, I think that our Grace comes up.
Erik: Well this has been a really intense at times conversation and insightful conversation and we appreciate you carving out what I know is hard to carve out a full hour of your day to have this conversation. So thank you for being with us.
Debbie: My pleasure. It was nice meeting you guys.
Jeff: Yeah, thank you for being so transparent
Debbie and I think that we're very grateful that you allowed us to take a look into not just the logistics of being a caregiver, but the emotions that come with it and all the heart that happens there. You make the world a better place. So thank you for sharing.
Erik: As always, our listeners can review our show notes for any of the things mentioned in this conversation that might lead to other places that you might want to go explore for more. We did mention that this is part of our caregiver series. If you are a caregiver listening to this and are interested in joining our caregiver community, you can check it out at nobarriersusa.org.
Jeff,
Debbie, thank you guys so much for being with us.
Debbie: Thank you.
Jeff: Thanks
Debbie.
Erik: The production team behind this podcast includes Senior Producer Pauline Shaffer, Executive Producer Diedrich Jong, sound design, editing, and mixing by Tyler Cottman, graphics by Sam Davis, and marketing support by Megan Lee and Carly Sandsmark. Special thanks to the Dan Ryan Band for our intro song, Guidance. And thanks to all of you for listening. We know that you've got a lot of choices about how you can spend your time and we appreciate you spending it with us. If you enjoy this podcast, we encourage you to subscribe to it, share it, and give us a review. Show notes can be found at nobarrierspodcast.com.
