Share Your Story: Rob
Rob Gill is a semi-retired and proud Dad to three grown-up children. Rob enjoys running the serviced office and co-working business, Hastings Hive, with wife and business partner Jenny, and getting out on the water in their yacht. However, he hasn’t always enjoyed such a relaxed lifestyle. In fact, Rob was Managing Director of Nokia Telecommunications for the Pacific region based in Sydney in 1998, where work was fast-paced and all-consuming. That was until, out of the blue, his world was turned upside-down.
“I was giving a speech to an Australian telecommunications audience about Nokia Networks directions. You know, what we were doing and the new products we were launching. And, I got this terrible ringing in my left ear. I thought ‘that is really strange…’. I asked the team to check out the sound system, as I figured I was getting feedback in my ear. But no one else could hear the feedback.
“I knew it was odd [the ringing noise], but I just put up with it. I had to. It was such a busy time at work - I had to finish a strategy paper for the coming five years and complete our annual planning round. At the same time, I felt like somebody had put a digital alarm clock on my desk. That’s what the tinnitus felt like to me, so loud and so insistent…You just want to reach for that alarm clock to turn it off, but you can't because it's not there. I thought I was going to go crazy. I literally thought it was going to drive me insane because I just couldn't concentrate.”
Rob’s symptoms continued to go from bad to worse.
“I began to notice this fullness sensation. It felt as though I had been to the beach, rolling around in the surf and there was water in my ears, except I couldn’t get the water out…
“Then I noticed my hearing wasn't quite as good. I thought it was probably because of the water in my ear. And finally, the vertigo attacks began.
“So, I went to the doctor, who told me it was probably just a bug and nothing to worry about. He said, ‘Don't worry about your hearing. Come back in three weeks if it hasn't sorted. ’And of course, I was back in three weeks… it was getting worse… I was starting to fall over and became worried about my driving.”
Rob was booked in to see an ENT specialist, who gave him a thorough check-up. And was given some worrisome news. The symptoms Rob experienced, were a lot like those of a brain tumour. At 39, Rob was booked in for an urgent MRI.
“I have my MRI and ask the specialist for the prognosis. Thankfully, the doctor lets me know that it isn’t a brain tumour. A big sigh of relief moment! He informs me that I am instead suffering from Meniere’s disease, something that doesn’t kill you.
“I had never heard of Meniere’s before, but I was feeling pretty good at this point, and after thinking I probably had a brain tumour, Meniere’s didn’t seem so bad.”
Despite his positivity, Rob’s Meniere’s continued to progress, becoming more and more disabling as the vertigo attacks became a daily occurrence. As an avid sailor and yachtsman, Rob never gets seasick. So with the vertigo, he didn’t feel physically sick either which he counts as a blessing. However, his balance worsened, and the hearing loss became more profound - to the point where he needed a hearing aid.
“I took a sabbatical to try and get better. I couldn’t keep working like that… I was having vertigo attacks in customer meetings where I’d have to lie on the floor. The whole world would just feel like it was spinning.
“There was one meeting where a client was annoyed with something that had gone wrong and was affecting their telecommunications network. The customer CEO called me in with the accounts manager to give Nokia a ‘telling off’ and ask us to fix it, which of course we would - it was my job to just take the flack. As we went up to the CEO’s office in an elevator, I started to feel the vertigo attack coming on. By the time we got in there, I just had to lie on his office floor…
It was very funny because the guy was saying, Well this is really unfair! No one has ever done this to me before – I’m meant to be telling you off and I can’t because you have your eyes shut and are lying on the floor!” I was about an hour in his office, I couldn’t move. And we did fix the issue, but yes, very disabling at the best and worst of times.”
Whilst on sabbatical, Rob was put on a clinical trial to see if urea could help his Meniere’s.
“At the hospital, I tried a treatment that they were trialling at the time – powdered urea. It was synthetic but still smells like the real thing! After about a month, I said, ‘Guys, if this is the best you’ve got, I'm out of here because this is disgusting and it's not making any difference.’ I've never heard of anyone else having to take this stuff!”.
After no improvement, Rob decided to try his luck outside the mainstream medical system with a naturopath. The naturopath discovered that Rob had candida, a parasitic yeast that feeds on nutrients in the body. Further, Rob's blood cells were out of kilter.
“My blood, which is a real indicator for how your body is, was off apparently - the red cells were the wrong shape, and I was lacking white blood cells. She [the naturopath] told me that although she didn’t know much about Meniere’s disease, she did know how to help people get back to a healthy body state.
“The naturopath put me on a very strict diet of no salt. When you look at what is in food it is incredible how much salt is in everything. So I couldn’t have salt, tea, coffee, alcohol or processed food. Nothing out of a packet. No red meat, no animal protein, no bread, dairy or wheat. I could only eat fruit and vegetables for the first month.
“Then after a month, I could slowly bring in brown rice, chicken and fish. After two months I went back and she looked at my blood again. She showed me through the difference though the microscope. My blood cells were no longer flat doughnuts, they were round. The candida had been knocked back too. So, I continued on that strict diet for another six months.”
Rob’s Meniere’s went into remission. Unable to go back to his old lifestyle, and with the kids coming up to high school, it was the perfect opportunity for Rob’s family to move back from Australia to New Zealand.
Rob jokes, “My body has found a perfect way to tell me to slow down. I can’t ignore it because I end up on the floor, but it isn’t going to kill me. So, every time I push it, I will start getting vertigo and my body will just slow me down again.
“I resigned from Nokia. After ten years in my dream job, I just didn’t have a choice. It was a big hit for me. My work and my job had been such a big part of my identity, and I hadn't really understood that. I became quite low and miserable.”
Rob decided to see a psychologist as the depression worsened. After listening to his story, the psychologist explained a four-pronged approach to wellbeing. This has shifted Rob's mindset to this day.
“He [the psychologist] explained there are four things that you need to have in your life, in balance, to be happy. First, you need to have a sense of purpose, which could be your career, your hobbies, volunteer work, etc. Now, this box had been really big for me for most of my life. My career had taken up almost three-quarters of my matrix because it had been so demanding, which I had loved. But now, it was a tiny box.
“The second is your relationship with your life partner, the person that is your rock. I was so lucky to have Jenny which was great, we have always had a strong relationship.
“The third box is your wider family and friends. Because I had been travelling for years, I didn’t see my wider family and friends much. So this box had become small for me.
“And the final box is community. I had routed my family around the world following my career to Europe and Australia but where was my community? Where was my happy place that I identify and connect with people? I didn’t have one. I’d lost that.
“So, I had this one big purpose box that had suddenly become a tiny box, and then really just my immediate family in my life. And that wasn't enough.
"So I set about putting this psychologist’s plan in place. I started volunteering, and amongst other interests, became a director of the National Foundation for the Deaf (NFDHH) for five years on the board. I became a member of the NZ Institute of Directors. We did a family yacht trip around the SW Pacific on our yacht for six months, which was exciting.”
And 20 years on, Rob’s Meniere’s has never spread to his right ear. He tells us how grateful he is, as one deaf ear is challenging enough! Rob’s balance is still a challenge at times, but as Rob jokes, it’s like being at sea. He doesn’t feel any difference when getting onto a boat!
He puts his success down to the plans he committed to. Every year, for one month, Rob re-does the cleansing diet. He is self-employed, which allows him to take time off and reschedule meetings if he is tired. Rob also takes time to get out on his boat whenever he needs some R & R.
Rob's main takeaway for others facing such hearing loss is to slow down and put your health first. And if that means quitting your job, seeing a psychologist, or even moving countries, it is worth doing if you can. He also recommends reading and connecting with others going through a similar experience. In fact, it’s the reason Rob reached out to share his story with you today.
In our Share Your Story series, Deaf and hard of hearing New Zealanders open up about their experiences.