For 10 years, I have been an avid listener of storytelling podcasts such as The Moth and Risk!. There is something soothing and therapeutic about listening to the voice of someone telling a true story and in learning about extraordinary things that have happened in their lives. The experiences of others, whether key life events or comical anecdotes, not only have the potential to inspire and shock the audience but can help people overcome difficult times; by finding relatable elements in these personal stories, the listener and the storyteller can share the experience.
When I learnt that New York-based storyteller, writer and performer, Brad Lawrence, like me has hearing loss in his left ear and also Ménière’s disease (a disorder that affects the inner ear, causing vertigo and hearing loss), I was keen to know more about his story.
Brad kindly agreed to an interview via Skype where he spoke openly about how hearing loss and Ménière’s disease has impacted on his life. During the conversation, he shared his bright outlook through amusing accounts and also revealed his greatest hearing loss fear.
Hi Brad, can you tell me a little bit about yourself and how you got into storytelling?
I was actually an actor and a writer and then I met my wife. I went with her to a few storytelling shows and I just got into it. I’ve been doing it for 13 years and it’s become a career. I make my full-time living in the arts now, thanks to the connections I made through storytelling.
When did you start to notice you were losing your hearing?
For about a year leading up to it, I was having dizzy spells. I just thought it was vestibular vertigo but not connecting it with any kind of hearing loss. I thought that every pair of earphones I got, the left one ended up being defective. And, I was like, “There’s a quality-control issue in the entirety of the earphone industry!” I wasted so much money on headphones, it was ridiculous. Then I realised that when people were on one side of me, I could hear them better than the other side. And I started to put two and two… But, I was slow to pick up on it.
When I realised I had hearing loss, Ménière’s is one of the first things that came to mind for me because I’d had a painting professor in school, named [John Jones] who had Ménière’s disease. He was a very taciturn, edgy kind of guy – chain-smoker, very leathery. One day, I came into the studio, up behind [him] and I was like, “Hey, [John].’” Nothing. “Hey, [John].” Nothing. Finally, he turned around and he saw me standing there. “How long have you been there?” he asked. “About three or four minutes,” I said. He goes, “I have Ménière’s disease, I’m deaf in both ears, I read lips and I don’t discuss it.” And, we never discussed it.
I had a terrible first doctor experience, with my hearing loss. It was an older doctor in his late 70s. He comes out and says, “Well, you’ve got Ménière’s disease.” And, I was like, “Alright. So what do we do about that?” “Nothing, you learn to live with it,” he said.
Cut to two months of severe depression. I was having vertigo constantly. I was always on the floor. I was thinking: I’m not going to be able to work. I’m going to go deaf in both ears and it’s going to be a train wreck.
I ended up going to this guy, Doctor Johansson here in Brooklyn. He walks in and goes, “So, I see from your chart you’ve been diagnosed with Ménière’s disease.” I said, “Yeah, and I know that there’s nothing to do for it, but I wanted a second opinion.” And, he replied, “We are going to do something about this.”
Tell me a little more about the vertigo.
I had the vertigo for years before I had the deafness. A severe vertigo attack can drop you to the floor.
There was a point at which I was working in midtown, two years before the diagnosis, and my wife had to come and get me. I was lying on the floor of this job that I worked at, and I was like, “I can’t move and I can’t ride the subway this way.”
Are you completely deaf in your left ear now?
I get only the most painful sounds, mainly high-pitched. It’s car alarms, car horns, babies crying… I live in New York City. People honk at ‘Stop’ signs here!
What kind of impact does hearing loss have on your life?
As a performer, after your show, you’ve got to play the host and talk to the crowd. So I spend a lot of time in bars, having to manoeuvre myself so I’m on the right side, and I’m hearing everything they’re saying and I’m responding. It takes a lot of stamina.
My greatest fear about deafness is that they say that non-Alzheimer’s dementia has a big tie-in with deafness. From what I’ve read, they don’t really know exactly why that is, but the suspicion is that people will disconnect from the social world and that encourages the onset of dementia.
Because I am so conscious of the fact that there is that danger of disconnection, I’m often very quick [to tell] people, “I have a hearing impairment. You’re talking on my deaf side.”
Not long after I got diagnosed, I was at a bar and I was having a cigarette and this girl approached me and started chatting me up. Because she just started talking at me, she got pretty far into it before I turned around and I was like, “You’re on my deaf side. I never heard a word you said”. It saved me the trouble to go, well I’m also married!
What have you found the most challenging, living with hearing loss?
In a large crowd where there’s a lot of cross-talk, if I’m tired at all, I definitely have a tendency to tune out. I will let my wife take the lead and I will just sort of nod along. She will notice I’m doing it and she will bring my attention to something that’s relevant. Sometimes, you have to shut down ‘cos there’s so much disorientation that you’ve gotta close yourself off and get some space to yourself.
We have a regular group that meets on Sundays for dinner. it’s all fine, but then there [might be] a crying baby at the next table and that short-circuits my hearing – the only frequency I can hear is this high-pitched howling. So I’m just stuck there. Everyone else is having conversations. I can feel my neck getting tense, my head starting to pound.
What has been the effect of your hearing loss and Ménière’s disease on your loved ones?
My wife had a hard adjustment. I think because she is someone who is always moving and getting things done.
I went down onto the subway one day and I crawled out of the subway and I was next to a cemetery and I couldn’t move and I couldn’t get home. I called and said to her, “You gotta come get me.” She came round the corner just in time to watch me vomit on the side of the street. I think that was the moment she internalised what was happening.
Did you ever try a hearing aid?
From what I’ve been told, hearing aids won’t work for me because of the frequency issue.
Do you have tinnitus?
I have a bit. The tinnitus manifests as more of a roar than a whine. I think it would be more annoying if it was a whine. The roar is like constantly having one ear to the ocean, which can be very distracting. For me, that’s rarely the worst symptom. It fares up and it goes away.
How are you doing now?
I’m deaf [in the left ear]. I worry about the right side. The thing about the vertigo – I did the whole thing about trying to figure out what my triggers were. A low sodium diet did nothing for me – I cut out all the salt and I was still falling down all the time. Then I quit smoking. I began to realise that about 10 minutes after every cigarette, I’d be on the floor. I was like, “Oh, OK, that’s one [trigger].”
I realised, if I immediately turned my head like that [turns his head to the left] and then started massaging the sternocleidomastoid muscle and physically opening up that chamber, I could cut off the vertigo before it hit. So, I started doing that somewhat constantly.
I also used to lift weights a lot and I realised that the weight-lifting was also setting it off because it was making those muscles tight when I was straining them. So for me, it was a very physical thing.
In the four years since I started [massaging the neck muscle], I’ve only had one major vertigo attack and that was actually on stage. I was doing a big physical comedy bit and I ended up rolling around on the floor, and people thought it was part of the bit! My wife knew how the bit was supposed to go and she was watching me from the sidelines. The curtain closed and I crawled off the stage and she said to me, “You’re having a vertigo attack.” I was like, “Yeah” “Well, played great!” she said.
What are your future career plans?
I’ve been writing a lot more. I think part of me is taking a lot more solace in the writing because it’s a way I can spread out my creative energy. So, I’m still paying attention to the performing, but I have one creative outlet that’s very quiet. So, I think that’s going to be a bigger part of what I’m doing, going forward.
As a storyteller, is there anything else that you think I should have asked you in order to tell your hearing loss story?
I think the part that maybe I should have answered a bit more is the relationships part. I think that it’s easy to get angry, it’s easy to get frustrated. Learning to be patient with the people around you and also to educate them – It’s time-consuming and it can feel like it’s unfair to have to be the one to do that.
Before my wife really had internalised it, as a sort of act of defiance, I had taken up the guitar again after years. And so I was putzing about with the guitar and my wife was trying to have a business phone call – I didn’t know it. She was in the adjacent room. And she’d asked me to be quiet and I hadn’t heard her. Then finally she got off the call and she came into the room and she was clearly frustrated. I asked her, “What’s wrong with you?” “I asked you three times to stop playing the guitar,” she said. I stood up and I had the guitar out like I was Gandalf (“Thou shalt not pass!”) and yelled, “Well I’m f*****g deaf!” And I slammed the guitar down and walked out of the apartment. Well, that was a little extreme on my part!
There are certain things in the world that you go through alone and no one can go through it with you. People can be there for you. They can hold your hand, but you know, they’re not gonna really know exactly what your experience is, and hearing loss is one of those things.
It’s been great to hear your positivity about living with Ménière’s disease and hearing loss. Thank you, Brad, for sharing your story.
This was a real pleasure – thank you so much.