On 7 May 2015 our social media manager & committee member, Beatrice Tarnawski, caught up with world influencer Guy Kawasaki to discuss living with the hearing & balance disorder, Meniere’s disease.
For those who may not be familiar with Guy Kawasaki here are a few stats. Guy is a Silicon-Valley based author, speaker, entrepreneur and social media guru – followed by over 7 million on Google+ (in the top 15 most followed people), 1.75 million on LinkedIn (in the top 12 global Influencers) and 1.4 million on Twitter.
Previously, Guy was the chief evangelist at Apple working alongside Steve Jobs in the mid-1980’s and again in the mid-1990’s. Guy is currently the chief evangelist at Canva, an online graphic-design service. In 2015 Guy was appointed to the board of trustees of the Wikimedia Foundation.
Guy is the author of fourteen books, including New York Times and Wall Street Journal bestsellers.
Needless to say we were very fortunate to have the chance to chat with Guy one-on-one, and find out how he manages to lead such a full and dynamic life while dealing with the restrictions of Meniere’s disease.
Here’s a transcript of that interview:
BEATRICE: Guy Kawasaki, thank you so much for your time today. I really appreciate it.
GUY: Glad to help.
BEATRICE: I can’t believe you’re here. I can’t believe I’m here.
GUY: I thought you were going to come to my hotel last night at 11.30. I thought that was funny.
BEATRICE: I didn’t understand. That’s totally fine. This is better today.
What I wanted to know, because I am asking on behalf of everybody who has Ménière’s disease, is first of all: when were you first diagnosed with Ménière’s disease and how old were you at the time?
GUY: I was diagnosed with Ménière’s – I want to say 15 years ago, something like that.
BEATRICE: And you’re 60 now?
GUY: Almost 61.
BEATRICE: You don’t look 61.
GUY: Thank you.
BEATRICE: So in your mid-40s you were diagnosed.
GUY: Something like that.
BEATRICE: Did it take long to get a diagnosis?
GUY: First was the ringing which I thought would go away, and then it was the hearing loss, and then I had a few attacks of vertigo. When I got the attacks of vertigo that’s when you think maybe you really should get it checked. So that’s when I checked it.
BEATRICE: When you had your first attack and you were told about Ménière’s disease, did you know anything about it?
GUY: Nothing. I knew nothing. The first tricky part about Ménière’s is nobody really knows what causes it and nobody really knows how to cure it. Besides that, it’s great. I have come to look at it very differently because, to take an extreme example, Steve Jobs got pancreatic cancer and died. I have Ménière’s and I live. What would you rather do?
GUY: To me, Ménière’s is the most pain in the ass disease that can’t kill you…
GUY: If somebody said to me, ‘Guy, for the rest of your life you’re going to have Ménière’s. That’s the worst thing that’s ever going to happen to you,’ I would sign that deal right now – compared to Cancer, compared to who knows?
GUY: It’s aggravating; it’s a pain in the ass; but it cannot kill you.
BEATRICE: No, it can’t kill you and it put things in perspective. People complain that they’ve got too much froth on their coffee in the morning and you say, ‘If that’s the worst thing that happens to you today, that’s a good day.’
GUY: But on the other hand somebody with cancer is probably saying, ‘Guy, the worst thing in your life is that you get dizzy once in a while, you can’t hear, and you have this ringing in your ears. You want to trade places?’ I don’t think so. I’m happy.
GUY: I have come to grips with that. Right now I have tinnitus and I have hearing loss. So if you were sitting on this side, I would’ve a hard time having this conversation. But you are not sitting on this side; you’re sitting on that side. The real pain in the ass part of Ménière’s was the vertigo. The vertigo would just – I would start off with little what I would call pre-shocks where you think something just happened and the world would not start spinning. But then I had attacks where the world was literally spinning and I could not walk. I would have to crawl to the bathroom to throw up. Right?
GUY: So I have had that kind of stuff. That is a pain in the ass, and I speak a lot. I speak 50 to 75 times a year. One of my greatest fears is that I am in the middle of a speech and I get hit with vertigo.
GUY: Or another of my great fears is I am flying from San Francisco to Sydney, a 16-hour flight, and two hours into it I get vertigo. Those are my two greatest fears.
BEATRICE: Have either of those happened?
BEATRICE: Does that mean you think you’re less likely to have it happen or it’s more likely now because the odds are now against you?
GUY: I think independent events are independent. Just because you flip a coin five times in a row and it’s heads doesn’t mean the next time it’s more likely to be tails, it’s still 50:50. So I know that.
And then about three or four years ago I had a couple of drop attacks, which is different. Vertigo, you are falling on the ground, the world is spinning but you kind of feel it and you can sit down. A drop attack, you’re walking and – boom – you’re down. That’s when I said ‘This is getting dangerous because if you have a drop attack and you’re driving, that’s a problem.’
GUY: That’s when I went in and I talked to my doctor again and he said, ‘Okay, Guy, now we have to do something.’ We had the theory of no salt, no caffeine, no alcohol, no stress – not exactly possible. I also use a Meniett device.
BEATRICE: Right. In your right ear, and your right ear is the one that’s damaged?
GUY: Yes, the only one. So I tried a Meniett device and the Meniett device is a pain in the butt. It’s like you have to do this three times a day and you’re not really sure what it’s doing and all that –
BEATRICE: And it’s not 100 per cent proven either.
GUY: Well nothing’s proven. At that point I was Meniett, diet control, I used to took a Lorazepam every once in a while to reduce anxiety.
BEATRICE: Is that like -
GUY: It is Ativan.
BEATRICE: Because medication brands are different in Australia and -
GUY: It’s anti-anxiety.
BEATRICE: Okay, I will look it up. Like Valium, sort of?
GUY: Not as powerful as Valium. So I used to take that. A funny story about that: when they prescribed that they said, ‘Any time you feel like you are under stress or you are going to be under stress, take one before you fly, take one before you speak,’ and all that. So I started one before I spoke every time and I swear to God I had 10 standing ovations in a row.
BEATRICE: (laughing) Because you were so relaxed?
GUY: Yes, I said ‘wow’, but I then I thought what happens if you get not so much physically addicted but mentally addicted to Lorazepam where you think you cannot speak without Lorazepam. So I refused to believe that I could not get a standing ovation without drugs.
BEATRICE: And you have achieved that and you have had standing ovations now -
GUY: Not as consistently. (laughing)
BEATRICE: Then you go back and try a bit of both.
GUY: I refuse to believe that I need drugs to make a speech so I don’t take Lorazepam at all any more.
BEATRICE: You don’t like a guy who needs any kind of buoyancy device.
GUY: So to start off I had a couple of drop attacks. Then I went to see the doctor and he said, ‘Okay, now we’ve got to do something.’ That’s when I decided let’s do the shunt. So I had an endolymphatic shunt. Coming out of that endolymphatic shunt, for three or four weeks I was on the ground throwing up and all this kind of stuff. I thought, ‘Oh man, I’ve just had this operation. It’s supposed to cure this, and I’m having it worse than ever.’ But that was about two years ago. After that four- to six-week period where it was rough, I have never had vertigo again.
GUY: Knocked on the wood, as they say.
BEATRICE: Not once?
GUY: Not once.
BEATRICE: No more drop attacks, no more vertigo. That’s good. Do you still have Tinnitus?
BEATRICE: Do you still have that sense of aural fullness?
BEATRICE: Do you get brain fog?
GUY: There are so many reasons I get a brain fog, it’s not clear to me it’s Ménière’s.
GUY: When I used to have that, I used to always feel like I was off, like I had a head cold but I didn’t have a head cold. I am like 80 per cent of what my mental faculty should be. But 80 per cent of my mental faculty is so high I could survive. (laughing)
BEATRICE: (laughing) I won’t disagree with that.
GUY: Yes, I had that kind of foggy.
BEATRICE: This is what I find so remarkable, and so many people do, is that many of the people who follow us on Facebook and who are members of Ménière’s Australia, they’re sort of going about their lives trying to hold down their jobs, or maybe they have had to stop work and they’re at home, and it’s become a bit isolating. So here you are and you’re going around the world and doing interviews -
GUY: I have a most stressful life.
BEATRICE: It’s extraordinary. Because that’s right – stress is one of the key triggers of vertigo attacks and drop attacks et cetera. So clearly you are able to control that. Maybe part of it is surgery; maybe part of it is mind over matter. Do you think that you’ve had to use your brain to go ‘Hang on, I can feel an attack coming on but I’m actually going to stop it?’ Do you have those moments – maybe in the past not recently – where you’ve thought?
GUY: Since the operation I have never had that feeling. I still take Thiazide every day. I take a diuretic every day.
GUY: But I believe in experimentation so now I drink coffee. I still don’t drink a lot of alcohol because I just don’t. I drink a lot of coffee and a lot of tea – no effect.
BEATRICE: But is there an effect with alcohol?
GUY: I don’t ever drink a lot of alcohol. I drink one beer a month so I don’t really know. And salt – funny, you know, I was so salt free. I don’t really miss salt. I can’t remember the last time I got a salt shaker and poured salt on anything. There’s so much salt already.
BEATRICE: It’s old technology. Who does that now?
GUY: You don’t need that salt. Don’t get me wrong: it’s not like I don’t eat sushi with soy sauce and I don’t have teriyaki beef, but I will not, for example, drink miso soup. It’s pure salt.
BEATRICE: I have a tip with the sushi: if I am eating sushi and I am at a sushi bar, generally I will pour a little bit of my green tea into the soy sauce just to water it down a little bit.
GUY: That’s interesting.
BEATRICE: I don’t know if they have low sodium soy sauce, which they probably don’t in the sushi restaurant because you can get it elsewhere, but I think it helps. You should try it.
GUY: But for me, knock on wood, I am really convinced that the endolymphatic shunt did the trick. Had I known that, I would have got that on day one. They first say try the dietary and behaviour stuff, then try the Meniett device, then try the shunt. If the shunt doesn’t work then cut the cord.
BEATRICE: Which is vestibular nerve section surgery -
GUY: But then when you cut the cord, there’s no going back on that.
BEATRICE: There’s no going back. I don’t know if there is going back on the shunt either, but at least it’s less invasive. Do you have a scar from the surgery?
GUY: I don’t know. I don’t look back there. What do I care what people behind me are seeing?
BEATRICE: Do a selfie?
GUY: Even worse I have a titanium pin here, because while I was doing that he said, ‘Have you ever heard of this BAHA device?’ I said ‘why not’. There’s this hearing aid that you attach to your head. I travel so much and the thing is so expensive. I can just see myself falling asleep on a plane and I won’t even think about it and it’s gone.
BEATRICE: It will drop off.
GUY: I have the pin. I literally never use the thing – I would not have put the pin in if I knew. Now they have the equivalent of bone conduction with your teeth. And then I figure someday, there are going to be single-sided cochlear implants and that might solve the hearing issue here.
BEATRICE: You can get one in either ear and some people get two. The most interesting thing I heard about it was that there is enough electrical potential in the inner ear that they could use that energy in the future to power a hearing aid or hearing device.
GUY: Oh really?
BEATRICE: That you won’t need to have batteries in the future.
GUY: If my doctor called up and said, ‘Okay Guy, a cochlear implant works, I would do it in a second,’ because I would like to hear better in this ear.
BEATRICE: Have you lost all of your hearing? What’s the percentage, do you know? Is it 70 per cent?
GUY: Something like that. If you were on this side of me and talking, I just wouldn’t hear.
BEATRICE: I have a hearing aid, a little CIC (completely-in-canal), because I have 50 per cent hearing loss in my left ear. I find that helpful.
GUY: Do you still get vertigo?
BEATRICE: Oh yeah. I had it last night; actually about half an hour before I got your email I had a vertigo attack. Luckily I was sitting in bed. That was when I was wondering: should I go? Damn straight I’m going to go, forget about vertigo, that’s going to follow me wherever.
GUY: You don’t get nauseous and all that?
BEATRICE: Oh yeah. We had a big storm in Brisbane just recently and the barometric pressure really dropped. It was brewing throughout the day and I could just feel something was coming on for a long time. I actually had nausea, vertigo, vomiting and a drop attack within a couple of hours.
GUY: Have you considered the shunt?
BEATRICE: I have had the Dexamethasone injections -
GUY: To destroy the hair (i.e. stereocilia)?
BEATRICE: No, Dexamethasone is a steroid. It’s anti-inflammatory so it brings down the inflammation. It’s in the inner ear and allows things to move fluidly, a little bit better. Gentamicin is the one that kills it. So it’s the same procedure but a different product that they use. Otonomy is having a big trial now overseas in America and the UK where they are trialing a slow-releasing steroid with a $100 million IPO or something. (Note: Read about Beatrice’s Dexamethasone experiences in her blog HERE)
At the moment I am looking at doing an immune system medication, because I am of the belief, and many people are, that it’s the immune system that’s really the cause of this, that there’s some imbalance. I don’t know if you have had heard of that.
GUY: No, but I am just one data point. But I could tell you there is no doubt in my mind that the shunt did it for me.
BEATRICE: It worked for you. That’s good to know.
GUY: I can believe that it’s like plumbing, if you put in a drain pipe – guess what?
BEATRICE: It’s going to drain out.
GUY: So I understand that.
BEATRICE: Do you have an inkling of what brought all this on? Do you think that for you it was genetics? Do you think it was stress or you have no idea? Or it’s old news, is it? It’s behind you now.
GUY: I don’t think about it. Let’s say I figured out ‘Oh yeah, I flew too much’. So what? What can I do?
BEATRICE: You can’t go back and change things.
BEATRICE: What has Ménière’s disease taught you? Have you changed as a person? Are you more relaxed now? Are you more anxious now? Having to change your life around.
GUY: In one sense I have a greater appreciation for health because, like I said, this is a pain in the ass disease but it can’t kill you. So whenever I get depressed, I think Steve Jobs would trade place with me today. That’s one.
I use it on purpose sometimes – many times when I speak, they want me to go to a dinner the night before and then they want a cocktail reception, and then they want me to speak. I say, ‘Listen I have Ménière’s disease.’ I literally hate parties. I can’t hear this side, and the ear is trying to hear it. The sounds are going off with the hard floors and all that, so I hate parties. I tell people ‘I have Ménière’s disease. I cannot go to your party.’ I just say no to stuff now. I guess it’s socially acceptable. You can’t just say no because you don’t like it, you have to say it’s a medical issue. What are they going to say? In that sense it’s clarified things – or it’s simplified things. You have to really convince me to go to a party.
BEATRICE: Oh yeah. It’s like if your child had the sniffles then you could ring up whoever is going to have the party, ‘I can’t come, so and so is sick’.
GUY: Right. What are they going to say?
BEATRICE: In fact, I think having a chronic illness you can almost less get away with that than having a child. With having a child it’s more understood socially than actually being unwell, they are thinking ‘Can’t you just pull yourself up a little bit?’
GUY: I would like to see them do it.
GUY: I don’t let that bother me anymore. All in all – I also am an upbeat person so that helps. Of course, maybe I am an upbeat person because I don’t have debilitating vertigo. If I had debilitating vertigo maybe I wouldn’t be so upbeat. I don’t know. Other than my fears of vertigo on a plane or vertigo in the middle of a speech, the tinnitus is not roaring loud so it doesn’t keep me awake. Many times I am so in the moment I don’t even hear it any more.
BEATRICE: You’re tuning out. That’s when you are so focused on whatever it is that you are doing or saying or listening to, that it is white noise. It is like you just tune it out. For some people their focus is different. They can’t cut off from it, and that’s more the mind really, isn’t it?
GUY: Or maybe it is louder for them.
BEATRICE: That’s true. It could be louder.
GUY: The other thing is obviously this affects your balance. So not coincidentally but I took up ice hockey about 12 years ago. My doctor thinks it’s great to play ice hockey because ice hockey is all about balance. So in my mind for medical reasons I have to play hockey.
BEATRICE: (laughing) That’s the reason. How do you stand up on ice? I couldn’t imagine it. I have heard of one or two people trying to go snow skiing.
GUY: With Ménière’s?
BEATRICE: I am in heels today and my version of ice hockey is walking through the streets in heels. How do you do that?
GUY: I love ice hockey. I don’t know.
BEATRICE: Maybe it is all attitude. Maybe it’s just having that mental discipline to go, ‘Look, I’ll just do the best I can.’ You are saying you have a fear of vertigo on the plane or on the stage, but you do it anyway. Some people would just let that fear override them and then they wouldn’t move forward. Is that how you manage – you have all these things in the air, you have Canva evangelism, you still have Alltop?
GUY: Yes, but that runs itself. Really it’s Canva and I am on the board of trustees of Wikimedia.
BEATRICE: Which is incredible.
GUY: I speak 75 times a year and I probably travel 150,000 miles a year.
BEATRICE: What do you do with all your frequent flier points?
GUY: Take my family to Sydney.
BEATRICE: They are here, are they?
GUY: No, not this trip. It’s sort of just like I am making the best of a bad thing. I can’t say it’s a good thing; I can’t say it’s a neutral thing; but it is not a horrific thing. I keep coming back to the point that there are much worse things to have than Ménière’s. That’s the way I look at it. I will make that deal with the devil right now.
BEATRICE: I have a question for you. I know that you have the 10/20/30 Rule of PowerPoint , can you give us some kind of 80/20 rule for Ménière’s, or 10/20/30 rule for Ménière’s?
GUY: I have never thought of that.
BEATRICE: Treatments, attitude. How much is attitude? How much is treatment? How much is just faith or?
GUY: Get an endolymphatic shunt.
BEATRICE: Just get that.
GUY: Just get the shunt, man.
BEATRICE: This is the 100 rule, is it, just go get a shunt.
GUY: Again, this is dangerous. I am a data point of one. This doesn’t mean that your Ménière’s will be cleared. But I have to tell you I am a data point of one, and my data point is very good.
One of the pain in the asses of Ménière’s is that – I don’t hide it at all. In fact, I flaunt it because I tell people I have looked at so many crappy pitches, that’s why I have Ménière’s. Inevitably when people hear this, there is always people who come up and say, ‘I have a friend of friend who had Ménière’s and he started taking niacin pills and it cured it.’ Somebody else would say, ‘Yeah you should eat echinacea,’ or someone will also say, ‘You know what you need is more vitamin D.’ They have all this things. My doctor is a Stanford medical trained, leading ENT in the world, but you are telling me the cure because a friend of a friend read on the Internet that if you drink enough niacin your Ménière’s will go away. It insults my intelligence.
BEATRICE: That’s crazy. Everybody seems to know everything when you tell them what you’ve got. I had a woman tell me once to put a dab of vodka behind my bad ear, because it would dry out the inner ear. I think that’s the weirdest thing anybody has ever told me. But I was almost tempted to do it because I was a bit desperate at that stage.
GUY: Well yeah. I know they have good intentions, but I will tell you one thing: If I found out – let’s suppose we had to take something – what would be kind of an equivalent? I would never go up to someone and say ‘I suffer from asthma, so what you ought to do because I heard this is a cure, you need to like eat soybeans or you need to do homeopathy or have you thought about hypnosis’?
BEATRICE: I have done hypnosis for Ménière’s; it didn’t work.
GUY: Yeah. Or try shiatsu or whatever.
BEATRICE: I have another question. Obviously – we have talked about it before – there is a number of devices to help with Ménière’s, BAHA, hearing implants and things like that. I know there are a few devices being developed around the world right now for the balance component of it. I think Cochlear is looking into something where they want to do a gyroscope to help offset that. How do you think technology could assist people with balance disorders?
GUY: As long as there is some science to it, it’s not like wearing copper bracelets – not something on QVC.
BEATRICE: The PowerBalance bands they used to have – do you remember? – with the hologram on it and it turned out to be just a huge scam.
GUY: At some level it is a fluid dynamic issue on some level. Some engineer some day is going to fix this. I hope I am alive.
BEATRICE: Maybe you could put the call out and you could say, ‘Here’s a problem that needs solving. If anybody can come up with some kind of device that helps people with their balance in everyday life’ -
GUY: Then all the nutcases will come out.
BEATRICE: (laughing) Really?
GUY: Yes. I assume that there’s somebody at Cambridge or Carnegie Mellon or somebody is going to do this and I hope I am around to do it. But right now in this current state, post-endolymphatic shunt, let’s assume I don’t get vertigo or I get vertigo very rarely, can I live with the tinnitus? Yes. Can I live with the hearing loss? Yes. I don’t want to hear these people at the side of me. Come on this side.
BEATRICE: Sometimes there are things you don’t want to hear.
GUY: Exactly – not my problem. So I’ll be fine. The vertigo is the tough part because you just never know. Prior to the endolymphatic shunt, I would have knock-down drag-out vertigo let’s say twice a year. So I would be out of commission for two days, let’s say. Even those worse days I also thought: you know what? You get flu two times a year and you’re out for a week. It’s the same thing. Do you know what I am saying? It’s not like everybody’s life is perfect except yours and yours is you’re out of commission four days a year. Everybody gets sick. Everybody has something.
BEATRICE: So if you could tell the world what it’s like to live with Ménière’s’ disease in one sentence or phrase, what would it be?
GUY: The one sentence would be: it’s the uncertainty of never knowing if you’re going to have a drop attack or vertigo. That’s the hardest part for me. That scared the crap out of me. If anxiety causes you to have Ménière’s, but when you have Ménière’s, you get more anxious. Which came first? That’s the theory of a Lorazepam. I just want to hammer the point there are a lot worse things to have.
BEATRICE: It’s a good thing to be reminded of.
GUY: When you are on the floor, and the world is spinning, you’re throwing up and you’re dry heaving, you’re not going to die.
BEATRICE: But sometimes people think ‘kill me now’ – I remember years ago on The Simpsons a character had hiccups for forty-five years or something, and all he could say was ‘Hic! Kill me. Hic! Kill me’.
Thank you so much for your time.
GUY: I hope this helps people.
BEATRICE: The more people that talk about it. You have so many followers, too, that it’s really about getting awareness. What a lot of people find most frustrating is that they talk to their family members about it, their friends and their friends will say, ‘Just do this, you’ll be okay.’ It is just really dismissed. So you’re right, it’s not going to kill you and that’s the one great saving.
GUY: It’s like saying, ‘I got diagnosed with breast cancer – eat more broccoli.’
BEATRICE: Exactly, it’s crazy. Thank you very much.
If you would like to help people with Ménière’s disease and other balance disorders, donations can be made via the Donate button at the top of this website www.whirledfoundation.org