14. Doctors said "you'll never speak again"

Niamh generously shares her inspiring story about how she went from being told she'd never speak again to living her dream as a TV news reporter.

Transcript

Sally: Imagine being told by doctors, you will never speak again. At the age of just 12 this was the shocking reality for Niamh Sullivan. Stay tuned and maybe go grab some tissues. Niamh's story will pull at your heartstrings, inspire you to overcome your challenges and hopefully more than ever make you value your voice.

I'm Sally Prosser and you're listening to That Voice Podcast. No matter who you are or what you do, your voice matters and unless you've sworn a lifetime vow of silence. This is the podcast for you.

I feel so privileged to bring you this episode. More than a year ago, a gorgeous young woman walked into my voice studio and like so many of my other clients was looking to improve her voice for broadcast news. I loved her energy I could feel her passion and most of all, I admired her incredible dedication. Look in my line of work, you can tell if people do their homework. Then Niamh opened up to me about her story and it's changed me. It's changed the way I feel about my own voice and it changed the way I hear every voice that enters my world and we're so fortunate to have Niamh opening up about it today. Niamh, welcome to That Voice Podcast.

Niamh: Thank you. Lovely to be here. Thank you for having me. That's really lovely

Sally: Now normally I start by asking you if you could do your job if you lost your voice, but I'm going to change things up today and I want to start with why you always wanted to be a TV news reporter?

Niamh: I've always just loved people and I've loved telling stories and I think that being a TV news reporter, you're so incredibly lucky to be out and about meeting people every single day and you're given the privilege of telling their stories and telling important stories that matter to different people in the community and I guess shedding light on important issues.

Sally: I hear you. I used to do that at job as well. So I know it's pretty amazing to be able to tell stories every single day, but it is one of those jobs that relies pretty heavily on your voice, right?

Niamh: It does. That is probably the one prerequisite is that you've got a good voice to go with being a TV reporter.

Sally: Yeah. So let's go back a bit. Let's go right back to when you were in primary school and take us through what happened.

Niamh: Okay, so it was, it all started happening in my last year of primary school. I was in year six and I was a pretty active kid. I played a lot of sport and did a lot of outdoor sort of things with family and friends, but throughout the year I'd just been battling this chest cold that just, I couldn't seem to shake it. I had it for six, nine, 12 months and I was on antibiotics and the doctors kept telling me, Oh, you'll get better. Like things are progressing and the antibiotics will kick in soon. It's just a pretty infection that you've got and you've just got to stay on the antibiotics until you can get rid of it. Looking back, there was a few other things that were wrong as well that we didn't realize that I'd lost a lot of weight, but as I said, I was a pretty active and outdoors kid and lots of girls that age go through a bit of a growth spurt where they get taller, they get skinnier, they lose weight. So at the time we didn't really think anything was wrong. And then it got to the point where I was struggling to breathe and I being a competitive person told myself, Oh, it's because you're not fit enough. You need to get fitter and that's why you're running out of breath. And I'd start laughing and when I laughed, I wouldn't be able to breathe. Everything was going as the doctor said it should and they said I'd get better. And then I went in for a chest x-ray, which they said I just needed to confirm that I was on the right antibiotics. And then as soon as I had that x-ray, it was, I mean I saw the picture and as an 11/12 year old, I knew that something was wrong because there was this black grapefruit sized mass in the middle of my chest.

And even in year six, you know that lungs don't have a big grapefruit size mass covering the middle of them. So that was when the alarm bells went off and we came to the realization that this wasn't just a chest cold that I was battling. It was a lot bigger than that. So I was taken straight to the children's hospital in Sydney and was meant to go in for a biopsy the next morning to determine what the mass was. And as I was given the anesthetic, my lungs collapsed and all my organs went into shutdown. And the next period after that was just me in a coma on life support. No one really knowing what was going on. If I'd wake up, or really, what to do. It was kind of just everybody shaking their heads. And then about two weeks later, I think it was, I was up on Christmas morning and obviously had had no idea what had been going on over this period. But I couldn't walk because when my muscles had deteriorated and I also couldn't talk because the black mass, which was non Hodgkin's lymphoma, had paralyzed my vocal cords. So it was, yeah, a big few weeks of thinking. It was just an infection turning out to be so much more than that. And it was so severe because it had been there for months and months and months without anybody picking up on it.

Sally: Oh my gosh. What a story. Can you remember what it was like waking up on Christmas morning? Can you remember what you were thinking or -

Niamh: Yeah, well, I mean, as I said, I didn't know what had been going on because it's sort of a weird state being in a coma. I can remember random conversations, things that happened around me while I was in the coma. But you don't actually remember being in it. So when I woke up, I just thought it was the next morning and that I'd just come out of surgery and was waiting to find out what this mass was, but was then confused because I had tubes down my throat and wires coming out of all of my arms and legs? And it was Christmas morning obviously. So there was decorations everywhere in the hospital, which weren't there when I'd gone into the operation and The Wiggles were there at my bedside. So it was, it was very disorientating. I had no idea what was going on. I couldn't talk and I kept tapping my hand, my wrist, and no one could work out what I was trying to say. But I was trying to ask, what's the time like, look what's happened, where am I? But you don't really stay awake for long after you come out of a coma. You're awake for a few minutes, five, 10 minutes, and then you fall back asleep again. And then it's a couple of hours later you'll wake up and be awake for a few more minutes, 10 minutes maximum, and then you're back asleep again. So my first solid memories of actually comprehending what was happening and what was going on for a few weeks after waking up out of the coma.

Sally: Wow. And did you say The Wiggles were there?

Niamh: Yeah. So The Wiggles come in every Christmas day to the hospital and it just happened to be that when I was waking up from my coma, The Wiggles in my room wishing my family and everybody Merry Christmas and then I would wake up to The Wiggles at the end of my bed.

Sally: Wow. I bet you that would have been a nice present for your family though.

Niamh: I, yeah. I can't even imagine what it was like for them during that period. I mean, your parents shouldn't ever have to think about answering questions like that when you're told that they don't know if your child will wake up out of the coma. So I, I just can't even imagine what it was like for them and we were living in Sydney, but we're not from Sydney we're from Melbourne, so they didn't have any extended family around. So it would have been such a confronting time for them. And my sister was only eight. So at that age she understood enough to be worried, but not enough to really know what was going on.

Sally: Wow. And so you said that the tumour was crushing your windpipe essentially. So when you woke up were you able to talk?

Niamh: No, initially I wasn't able to talk because they were still tubes going down my throat and into my lungs to keep one lung ventilated, they couldn't keep both ventilated because my tumour was so strong that it was crushing the pipe that they were putting down to my lungs. So they just have to let one lung deflate and just focus on the one. And then they weren't sure what would happen once they took the tube out with my vocal cords. And then once they did, I still, I wasn't able to talk because that's when they came to the realization that the tumor was so strong, it had paralyzed the left vocal cord.

Sally: Oh my goodness. And so then what happened next?

Niamh: So I guess moving forward from that, it was straight into two years of chemo because that was the number one priority was to shrink this tumor. And to get rid of it. I guess all the long term side effects were sort of put to the back of our minds while we just focused on initially getting through the first few weeks of getting me to some sort of stable position, and I think it was about a month or two after that where they put a camera down my throat to actually have a look at what was going on with my vocal cords and that's when the doctor sort of just shook his head and was like, your voice is never going to be louder than a whisper and when you laugh it won't make any sound. I sort of just breathed out a lot of air when I laughed without making any sound.

Sally: Oh my gosh, Niamh how did you react to that? What was the first thing you thought?

Niamh: I think, I honestly don't think I really believed him when he said it. I mean, I've never been someone that takes no for an answer and I was pretty young, so it was just like, Oh yeah, whatever you say, it'll be fine. Give me a little while and the voice will be back and I said that to everybody around me and they sort of just let me go along thinking that my voice would come back because they didn't want to be the ones to be like, no, Niamh, this is what the doctors are saying. This is their specialization. They've studied this and they've put the camera down and said, it's not coming back. But I just, I don't know, I just didn't accept it and just always thought that it would come back. I never really imagined it being like that forever.

Sally: Wow. And there's no doubt that that mindset is what's got you to the position you are I'd say. Would you agree?

Niamh: Yeah. Well, I'd like to think that being that way has given me sort of the motivation to always, as I said, not take no for an answer and continually push myself to get back to the state that I wanted to be in. I mean, when I came out of the coma, I couldn't walk, so I had to learn how to walk again. And that was a really slow process. I had some days I remember when the physio came, I'd walk from my bed to the door of my hospital room and back again, which was probably a five metre return trip. And then after that I'd need a two hour nap to recover. But I just always had this mindset of I will get back to where I was and this isn't going to be forever.

Sally: Oh, that's amazing. And let's fast forward a few years. So take us now to, you're going through your degree and you're starting to get some work experience. And was there any point where you felt, Oh my gosh, with what my voice has been through, is this something that I'm going to be able to do?

Niamh: Yeah, there was quite a few points like that. Well when the doctor first told me that my vocal cords would never come back, the first thing I said is, Oh, you'll never be able to be an opera singer with these vocal cords. But I guess I've always liked a challenge and TV reporter is probably the second toughest career choice to follow with my condition after being an opera singer. So I didn't really realize how tough it was going to be until I started interning and I was actually in an environment surrounded by TV reporters and it sort of just hit me about the voice that people talk about, about reporters having this authentic, clear, trustworthy voice. And then I just had all these thoughts coming into my mind like, I, I can't do that. That's not my voice. My voice will never get to that point.

It wasn't even meant to come back to this point. So how can I expect it to get to a point where it doesn't crackle at all where I sound authentic and clear all the time. And I did get a lot of comments from other interns, from older journalists, from producers about sounding like I was young and crackly and nervous, which was so frustrating because I knew that I was all these things. I was young and nervous and it was crackly. But I also knew that it was my vocal cords that were really exaggerating it, but I didn't tell anybody about the vocal cords because I didn't want to ruin my career before it even started. It was just frustrating them thinking that I wasn't doing anything to improve it when really I was trying so hard behind closed doors and they just didn't know that because I didn't tell them. And that's not their fault, that's my fault for not saying anything. But it just was very frustrating and there were a few moments when I was interning and when I was in class where I really was like am I just, am I banging my head against a brick wall? Is this pointless me following this pathway? Am I ever going to get to that point? But I guess I just kept going because I was always, no has never been an answer.

Sally: Yeah, and I can vouch for that. You've worked so hard, honestly, to have one vocal cord that's paralyzed to strengthen the other one up to the point that you have is absolutely phenomenal. So tell me about the day that you got offered your full time job with Prime Seven.

Niamh: It was a pretty incredible feeling really, because there were so many points where I never thought I was going to get to that point where I had a full time job. I'd done all these interning and part time left, but I was never allowed to voice anything because my voice was never ready or never strong enough. So when I got offered this job, it just kind of gave me that confidence of maybe I can do this. Maybe. Maybe I will get there eventually.

Sally: And not maybe you are doing this every day.

Niamh: Yeah, I guess, yeah, it was just an amazing feeling, really. I can't even describe it. I honestly didn't believe it. I didn't think I could wipe the smile off my face. I was also terrified, but so excited too.

Sally: Yeah. I think that every journalist who gets their first full time gig is terrified, so I wouldn't worry about that. I think it's funny though that when doctors said earlier that your voice wouldn't be more than a whisper you're like, Oh no, I don't believe that. But then when you got your job in journalism, you were like, I can't believe it?!

Niamh: I know. Exactly. It's funny how it all changes.

Sally: Yeah. And how's your voice going now?

Niamh: Now I still have days where it's pretty wake and it's especially bad when I get tired or when I get stressed. So I have to make a really conscious effort to look after myself and to look after my voice. So I do a lot of voice exercises, things that we've gone through together and incorporate that into a daily, weekly sort of routine. And then I just have to be really careful and not to push myself too much, which is pretty hard because I'm the type of person that always likes to be on the go and always likes to be filling my days as much as possible. But sometimes I just have to stop myself and remind myself that when I'm pushing myself, I'm also pushing my voice to the point where it's deteriorating. And so most weeks when it gets to Friday, my voice is either super crackly or I've almost lost my voice altogether. So it's just about scheduling in that time to slow down and look after myself and doing things like drinking a hot drink with honey in it every night before I go to bed or trying to avoid drinking alcohol because it doesn't sit well with my voice and I wake up the next day with pretty much no voice at all. Just a crackly sort of sound.

Sally: I think there's a lot of people relate to that one. Don't worry. Yeah, it's so important, isn't it? A bit of a balance between strengthening it but then also resting it when you need to.

Niamh: Exactly.

Sally: And now you're not just using your voice for the reporter microphone, you're speaking on some pretty massive stages because you've been made a Make-A-Wish Foundation ambassador. Tell us about that.

Niamh: I have. So it's all pretty exciting. I feel pretty lucky to be involved in it. So my family and I had a Make-A-Wish when I was younger. After my treatment, we went to Disneyland and it's honestly one of the most incredible experiences of my life. It's something we still talk about today. And so it was actually at the start of the year, I was thinking about that and how the fact that so many years after going on my wish, it was still something that was still so important to my family. So I wrote a letter to Make-A-Wish, thanking them and just telling them how much of an impact they had on my life and sort of a bit of an update about where I was. I didn't really expect to reply because it had been so many years since I'd actually had my wish. But then they got back in touch with me and thanked me for getting in touch with them because they don't always hear from wish kids after they've had their wish they move on to the next stage of their life. And they told me that they'd sent my letter around to everybody that worked in their office and that they'd like me to come and speak about my experience to all of their corporate sponsors. So that was how it all started. And then from that it sort of just snowballed really. I've spoken at other events, so it's pretty cool to be able to share my experience and use that to encourage other people to continue supporting Make-A-Wish.

Sally: And how does it feel to be telling your story on stages, I can imagine there's sometimes not a dry eye in the house?

Niamh: It does have moments where it's a little bit odd sharing such private details about your life and private feelings, things that sometimes you don't even really talk to your friends about, and then all of a sudden you're sharing it on stage in front of 500 strangers. But then knowing the impacts that that can have and that telling those stories can encourage people to keep supporting organizations or remind them about why they're supporting it. Then I get over myself and I realize that it's not about me. It's about the organization.

Sally: Yes. And hopefully after hearing your story, they've got no problem to continue opening their wallets.

Niamh: Well, that's the point. That's the point!

Sally: Yeah. Finally, what advice would you give to any young people out there who are facing their own cancer battle?

Niamh: The most important thing for me was always realizing that all that's certain is right now and today and my family had this motto throughout my treatment, which was "a day without laughter is a day wasted." So the thing that got us through was finding something to laugh at every day, whether it was ourselves, something we saw something totally insignificant, but I think that just staying in the moment, finding something to laugh about is the only thing you can do to keep going and to get to that point where you're ready to move on to the next chapter and cancer no longer defines you.

Sally: "A day without laughter is a day wasted." What a fantastic motto. So Niamh, where can people find you if they want to do a bit of stalking?

Niamh: A bit of stalking. Okay. Mostly Instagram's probably the place where I share most things about what I'm doing. Instagram is @niamhsullivann which is a confusing one with Niamh being N I A M H and Sullivan with two N's double N on the end.

Sally: Isn't Niamh an inspiring young woman. She totally deserves every success and happiness. Now, in that interview, I noticed I used the word wow a lot, and given the subject matter, there wasn't many other words I could think of, to be honest, but it did get me thinking about our filler words. Um, Ah, Sort of, like, you know, so next week's episode will answer probably my most frequently asked question. How do I stop saying UMS and AHS? You don't want to um, ah, like, you know, miss that one.

Thanks for listening to That Voice Podcast. If you enjoyed it, I'd love to know, drop me a message on LinkedIn or Instagram @Sallyprosservoice.