Life in the ICU: A Speech Pathologist's Perspective (ft. Vanessa Abraham)

Thanks for tuning to Digital Voices Podcast, where we chat digital transformation challenges and opportunities across healthcare and life sciences. And now, your host, Ed Marx. Hey, it's Ed with another edition of Digital Voices. Thanks for listening. I know you have a lot of different choices and you spent time with us and we really appreciate it. We'll make it worth your while. And today I have a Special guest, Vanessa Abraham. Vanessa, welcome to Digital Voices.

Hi, thanks for having me.

Yeah, this is awesome because you hit on a couple of different areas that are of high interest to myself and my audience, and one is patient experience. So you have an amazing story that we'll jump right into here shortly. And also you're an author, and I love to celebrate other authors and people who've taken the time to write and share their stories. And so we'll talk a little bit about your book, Speechless. So super excited. And that's how we met really is online, LinkedIn. And I saw that you have this book coming out and it's, and it's quite a story at that. And I thought, wow, it'd be great to have you. But Vanessa, before we get any further, the most important question of all my guests is what songs are on your playlist?

Oh, what songs are on my playlist? Anything from the '80s, anything, you name it. '80s music is my thing. Cyndi Lauper, my daughter just did a talent show and I was so proud of her because she got up in front of her class and sing— sang, uh, Girls Just Want to Have Fun. So I was a very proud mom at that moment.

Yeah. Yeah. I can, uh, resonate with that. I download all the latest, you know, '80s compilations of, uh, new wave or, you know, a little bit of punk and then the kind of the pop of our culture back then.

Madonna, Sheila Easton, you name it.

Yeah, it's, it's a lot of fun. It's good music. What about life message and mantra? Are there sort of words that you live by or quotes that inspire you?

The one that's really hit me most in the past couple weeks is just, you only live once. That's been, for some reason, I don't know why it's really been hitting me in the past few weeks. It's maybe it's, there's been a lot of transitions family-wise, people passing on in 2024 that it's still like, that's, you know, about a year later, it's starting to kind of hit me that Wow, we truly only have one shot at this.

Yeah.

And me almost dying myself in the ICU room and waking up thinking I'm never going to see my family again. I need to find my phone and start texting people and saying goodbye because I truly could not talk in the ICU.

Yeah.

So making this one life we have meaningful. So YOLO, you only live once.

I never knew that acronym. YOLO. YOLO, right? Yeah, I've heard YOLO before. It's all coming together for me.

And it's true. We only have one shot at this. So how can we make it the best period of our existence? How can we, however long that is, whether it's 80 years, 90 years, 50 years.

Yeah. Yeah. You're, you're absolutely right. And that's why I think our listeners are going to love your perspective and just the harrowing nature of what you went through. But that's just a teaser, 'cause before we get there, first tell us a little bit about yourself. I know that you eventually become a speech pathologist, but let's start earlier than that. Where did you grow up? Who are you? And then, yeah, take us all the way to becoming a speech pathologist.

I'm born and raised in Southern California. It's still where I'm at today. Um, got married in Southern California. My husband's career kind of took us to different areas of the world. Uh, but somehow we settled back here in Southern California where I became ill in 2019. Um, I graduated in speech pathology. Um, about 15 years ago, I got into speech pathology, you know, obviously not knowing that I was gonna become the patient in the bed needing speech therapy services. But ultimately those skills that I learned as a speech pathologist really helped me in my rehabilitation journey. I knew kind of what I needed. I knew, knew what I needed for communication. I knew what I needed for voice and swallowing. I knew that I was in bad shape when I was the patient in the bed laying there and a speech pathologist came into my room to assess me.

Yeah. Let, let's jump into it. So tell everyone what happened. And then we'll talk about, about the book.

So I was just living life in my 30s, living a great life, healthy as can be, working a lot, very stressful working situation, raising a toddler at the time. So life was very busy, very stressful, but I was very healthy and decided, you know what, life's been a little stressful. Let's go out and go camping. Let's get away. Packed up the trailer, headed out to the desert with my parents, my husband, my daughter, and I, and took off. And the very next day, woke up Feeling very sick. The day before, feeling fine. 24 hours later—not even 24 hours later—it was a you know an eight-hour sleep. I fell asleep and I woke up the next morning and I thought, wow, something's not right. I've got a really, really bad case of the flu coming on. So unfortunately, we had to pack up after all that. 24 hours later, pack up and go back home because I was not feeling well. And that was about a Sunday. Within a couple days, I lost my voice and I just figured out stress. You know, stress-related, working too much, busy life. Lost my voice. My voice was kind of hoarse and crackly. And but little did I know that this was a virus paralyzing my vocal cords, causing them to not work anymore. And within a week's time, Sunday to Sunday, I woke up, fell out of bed in the middle of the night and realized, hmm, this is not just the flu. This is something really weird and it's not getting better. So about 1, 2 AM in the morning, we packed up, went to the hospital. And within about another 24 to 48 hours, I was in ICU, unable to move. They had to intubate me because I was rapidly declining. I was transferred from one ICU to the next because one ICU just couldn't figure out what was going on. They ran all sorts of tests, anything from MS. They diagnosed me as having MS and then they discounted that. Botulism, NMO, neuromyelitis optica, said that I was going to die of paralysis, a slow paralysis. They gave me all sorts of diagnoses. Turns out none of 'em were right, but anyways, um, went to the next ICU where I was eventually, uh, tube fed. I just kept de— deteriorating. I was declining rapidly. Eventually tube fed, provided a tracheostomy. I could not talk. I started out using eye gaze to communicate. So I was looking at a board.

Hmm.

That had words on it to communicate that I was in pain or yes, no. I would look at a word yes if the answer was yes, or look at no if it was no. Eventually, you know, my upper body was paralyzed, so I couldn't use my fingers, but eventually I got some more sensation in my fingers. And as a speech pathologist, this is pretty profound for me, is that I knew that, okay, my fingers are working. Somebody get me my phone so I can download a text-to-speech app.

Yeah.

And again, this comes back to being a speech pathologist. I knew that there was technology out there that would allow me to communicate, but I just needed my phone. And before that, I was using an alphabet board, just a piece of paper with letters on it, and I would type. This was like a low form of technology that people used to communicate in the hospital setting. Well, me as speech pathologist, I thought there's better. This is 2019. There's more out there, you know?

Yeah.

So I got text-to-speech on my phone and I was able to type. My providers and my husband were very relieved when that happened because for me to use eye gaze and individually type on a piece of paper the words that I was trying to say, was very hard on them to understand. It was very slow. And in 2019, there was better technology out there. I just knew that.

Yeah, for sure.

So text-to-speech. And then eventually I was given this thing called a Passy-Muir Valve that they put on your tracheostomy that allows you to vocalize. And that was a huge game changer because it gave me the ability to verbally communicate. It wasn't easy though. I went through a lot of different trials and the first time I was only able to go Uh, and then take it off because it was so exhausting for me. Um, but it was a huge breakthrough of being able to finally communicate. And as a speech pathologist, I went through all different, all different forms of communication, all low-tech to the high-tech. Um, it was unreal. And for me, I just knew, wow, this is, this is gonna be a wild, horrific journey.

Yeah. So you're a speech pathologist, you're helping patients, and all of a sudden in an instant, right? That's why we have the mantra of you only live once and maximize life. You're now the patient and can't communicate, not just like a regular patient, like you have something where you can still communicate, but you actually can't communicate and you're being helped by other, your peers basically in the profession and going through this very traumatic experience. So tell me about that. So that's what led to Speechless, right? How a speech therapist lost her ability to speak and her silent struggle to reclaim her voice and life. So tell us about how the book came about and tell us about Speechless.

Well, the book was about 4 years in the making. It took a lot of not only time, but just the vulnerability component of it and the emotional component of putting a book out there and reliving all those experiences. One of the things that I experienced significantly in the ICU and post-ICU And one of the things that I continue to navigate and deal with is this thing called post-intensive care syndrome. So here's another acronym for you, PICS, post-intensive care syndrome. So a lot of ICU survivors such as myself, we deal with a lot of the PTSD as a result of an ICU stay.

Yeah.

So, you know, all your sensory experiences, things that you see may trigger some of those flashbacks, some Smells, seeing different, you know, things on TV, medical TV shows may be triggers for us. For me, it's ambulances. I rode in 3 different ambulances to 3 different hospitals. And that experience of being on a gurney, being put into an ambulance and not being able to talk and hallucinating and seeing wild firework colors going off in my head, it's all triggers for me. So that's something that's heavily talked about in my book, not only the PICS, post-intensive care syndrome, but it's my whole journey from start to end. It's about the community that was formed, how my team got me through it, the compassion and the kindness that I was shown in the ICU by the hospital staff. Also how they diagnosed me as having PICS. That was something as a speech pathologist that in grad school they never talked to me about.

Right.

You know, I'm thinking, okay, here I have this master's degree in this field, but how come nobody ever said anything about PICS? Now that I'm a patient, I get it.

Yeah.

So, interesting.

Yeah. Wow. I'm, well, I'm sorry you had that experience, but I'm happy that you went through the process, as hard as it was, to write a book about it, because now you're able to help other people. What would you say the main message is of the book?

There's, you know, the message of hope, trying to give people hope. The, the importance of community is also heavily emphasized in there because My community of prayer warriors, I do continue to attend a PICC support group, and that's my community that helps get me through it. They have kept me alive where sometimes I feel like, why did I survive ICU? And they remind me that there's a purpose and remind me to keep fighting. So there's the message that I don't want people to feel alone.

Yeah.

That's another reason I wrote the book that a lot of people get out of the ICU and they wonder, why do I have this brain fog? Why am I depressed? Why am I so anxious? Well, there's a diagnosis for that. There is a term for that and it's called post-intensive care syndrome. Yeah. And my goal with the book is to educate, educate medical professionals anywhere from, you know, physical therapists to speech therapists to social workers to physicians on this concept of PICS because we get out of the ICU and our lives have been turned upside down.

Yeah, no, that's a great educational resource and provides hope for those who have been impacted by something like PICS. And also, I think it's just good for, you know, those of us in the industry from a patient experience point of view, just to understand yet another perspective and what some people go through. And I'm down with you on the whole community thing. So I've written a book myself with a co-author, and we talk a lot about the importance of that community or village to surround yourself with because things can be pretty hard. And it's— there's nothing wrong with relying on other people that care about you. So that's great. How are you doing now?

I'm miles from where I was. I can drive again. I can obviously talk again. Um, I can eat again. I'm working. I, I was off work for about a year, but I'm working again, probably working too much. But so especially now with the book being launched, but it's also keeping me busy. The book is helping me build community. And that's really what I'm about right now, building a community of ICU survivors. That's been really important to me. I just, I don't want people to feel alone. I don't want them— in my own journey, I felt very alone. I felt very isolated. And you really learn who your true friends are. And I realized that, hmm, okay, those people are not my true friends, but these are my true friends. And I'm trying to build that.

Yeah. Yeah. That's why it's really important to be proactive in figuring out that community and village, because you'll be surprised. It's not the people that you think that are going to be in the corner. And it's not necessarily because they're mean people or don't care. They sometimes, they just can't handle it. you know, they, they don't know what's, what's involved. So I, I love the fact that you talk about that. And this kind of led to your own sort of practice today, right? Tell us a little bit about what you're doing professionally today.

I'm still working as a speech pathologist, um, but it's very much transformed how I treat my clients. And the first thing I'm always looking for now is mental health. I have been the patient in the bed and my mental health absolutely deteriorated with suicidal ideation, just contemplating life. Like, if this is going to be my life now, I wish they would have pulled the plug in the ICU if this is going to be my life. Completely transformed how I look at each person that walks through the door. The first thing I want to look at, you know, how are you feeling mentally? Do you have any suicidal thoughts? How's your anxiety? How's your depression? I'm also doing a lot with rehabilitation with using e-stim, the NuBe device, and helping people rehabilitate from neurological injuries, from, you know, anything from like what I had, which is Guillain-Barré, to strokes, to multiple sclerosis. It's something that I've become really passionate about because I've used it on my own body and I saw how this worked. And I want other people, I want to give other people their life back like I've been given.

Yeah, I love it. And we'll put all this information in the show notes, like how to get ahold of you, how to order your book, sort of the things that you're doing today and maybe a little resource on picks as well. No one would have predicted it suddenly in an instant. You know, you go from being this vibrant, healthy person to that patient and can't communicate. So you learn. And so I'm trying to, trying to extract everything I can, Vanessa, from you in terms of your wisdom through your experience for those who haven't had that experience. Hopefully they never will. But like, what's one, one or two things that you might recommend someone do, you know, given the situation where they're healthy today and just kind of like living, grabbing hold of life?

Well, you know, I think a big one is the vulnerability that comes with asking for help.

Yeah.

I think, you know, being able to accept where you are and say, okay, this is where I'm at, and asking for help. I need help with it. And this is not easy. It's not easy for me. It still isn't easy for me. And I'm still a work in progress in many areas of my life. But being able to be vulnerable, throw yourself out there, expose yourself. That's what another thing that was hard for me with the book is just exposing myself, exposing my story, but just that Part of asking for help. It's okay to ask for help and say, I need therapy. I need a support group. My support group got me through some dark, dark days. And without them, I don't know where I'd be. This is my group that understands me. These people understand brain fog. They understand the PTSD. Um, and it's okay to ask for help and say, I'm not okay.

Yeah.

Please help me. Vanessa, this has been super interesting.

Again, from a real human story, patient experience, a clinician talking to other healthcare audience. And we covered a lot of different things. '80s music, of course, but we take life for granted. We never expect something like what happened to you to happen. We talked a lot about your book, how it came about, sort of that main message of hope, the importance of community. You're not alone. Also to educate, helps educate other people about pics and how you're doing now. So you survived and now are thriving, but only thanks to the other things that you talked about, which is ask for help, be transparent, share your stories. You took away the sort of that negative shadow on mental health. You know, we should all be, you know, asking for help. It's okay. Uh, there's no shame in all that. And if you want to truly live this vibrant life of only living once, things like that, you got to take care of not just your physical self, your mental self. Spiritual self. What did we miss, or is there anything you want to double down on? I'll give you the last word.

Gosh, we live in a world right now where mental health is so heavily addressed, and as therapists, we're always talking about being trauma-informed. And I feel right now that we're on this verge of, of understanding PICC, but yet we're not understanding it. A lot of healthcare providers— I'll be first to admit it— when I go and I look for a new mental health therapist, I ask them, I say, Do you know what PICC is? And I kid you not, none of them have said, yes, I've heard of that. And I think, well, if you don't understand it or have never heard of it, how are you going to help me? So I'm on this big mission right now to educate so people can get help.

Well, hopefully this episode of Digital Voices will go a long way in helping get the word out and especially the message and getting people to read your book and hear more about your story. Vanessa, thanks for being a guest on Digital Voices.

Thank you. Thank you for your time.

Thank you for listening to Digital Voices podcast with Ed Marx. If you enjoyed this episode, subscribe on your preferred streaming service and leave a rating and review. And most importantly, thanks again for listening.