At the age of just 40 years old Helena Martins lost her hearing. After receiving support from the Action on Hearing Loss charity Helena began volunteering for them. Listen to Helena’s interview below or scroll down further to read the transcript to find out what it was like for Helena to lose her hearing, what people should do to prevent hearing loss, and why she is volunteering for Action on Hearing Loss.
Nisha: Hi Helena, it’s great to speak with you today. I have watched some really emotional videos of you and so it’s great to actually get to chat with you! Can you start by telling us a little about yourself and the charity you volunteer for?
Helena: OK, a bit about myself – I always thought of myself being a little bit rad, a bit cool – I used to surf, I used to ride a motorbike, kite surfing, cycling to work so I used to be very active and dynamic. I was the first woman DJ to perform in the Algarve, Portugal. I was also the first lesbian stand-up comedian in Portugal. If I have to say a little about me it’s important for me to say how active I was.
I woke up deaf one day due to Meniere’s disease. The Action on Hearing Loss charity helped me a lot with lip reading, a course on how to manage hearing loss and how to get support. I’m more a giver than a taker, so when the charity gave me all this help and support I felt very inclined to pay them back somehow.
Also I discovered by helping the charity to help other people who became deaf I was helping myself as well. I felt much better with myself in my illness and my loss when I was helping others with the same thing.
I have two motto’s for life:
- Don’t follow the path, make one
- Keep rolling, not spinning – Just roll and eventually you’ll get somewhere!
Nisha: Helena I mentioned earlier I watched some videos of you, one was of you getting your implant for the first time and hearing people speak again. It was incredibly emotional (see the resources list below for the video). Can you tell us how that felt?
Helena: In terms of becoming deaf it was very bad, I can’t tell you what it is.. you wake up one day and that’s it you don’t hear a sound. You have a grieving period, coming to terms with the loss. There are people who become very depressed, people who have killed themselves. I am a very strong person but even strong people go down very much. What makes you strong is not that you have never fallen, what makes you strong is you fall and you get up. During two years it was very difficult to overcome deafness, but it was about changing everything. Can you imagine, you come to your 40’s and after the drama of your 20’s – figuring out who I am. After the drama of your 30’s – figuring out where I want to go. You get to your 40’s where it’s like, I know who I am, I know where I am going.. you get to that point and then that’s it, it changes everything. The fact that you are not able to hear it changes the way you are social towards other people.
During that period I developed sort of an emo hair style, my wardrobe had only two colours in it, black and grey. I was hiding myself. I stopped being social. I used to be very social. I didn’t go out, didn’t go clubbing, to the pub, didn’t entertain and have friends over. I lost a few friendships because of it.
I told you before about my love for music. I learnt my first English words with Rolling Stones, Queen, Sting – I was lucky I have an older sister who actually had quite good taste in music. I was two years old jumping on the sofa singing ‘We are the champions’. So music was very important to me, and it was about being able to heal with music. You know when you have a song you need to hear when you go on a road trip and you have everyone in the car going wild. You have that song when you are sad and it’s a bit cathartic.
For me it was, how can I heal the loss of becoming deaf without music? – click to tweet!
The funny thing about the implants, the switch on moment you refer to, was before the implant is switched on they are tuning, they are sending beats and beeps and tones to your brain which is to fine tune the implant. They were the most melodic sounds I have heard for a long while. It’s like a mobile phone notification, very electronic, but they were perfect sounds.
When I started immediately understanding the words being spoken to me, with no need to lip read, no need for anyone to write down what they are saying. Just like – almost – almost – a normal hearing person.
For me the breakthrough was when my wife spoke to me and I realised, I can hear you again! That was the moment I just burst. It’s still a very emotional thing for me to speak about because it’s huge. I never thought this would happen to me. It’s not that I’m untouchable or I’m wonder woman – I’d love to be wonder woman – but from all the things that could happen to me.. becoming deaf is something I never saw happening to me.
Nisha: No it’s not something people think happening to them..
Helena: A lot of people think they are going to become deaf when they are old. Oh yes I’ll be walking with a walking stick, I’ll be deaf, I’ll be wearing glasses, I’m going to have white hair.
I’ve been speaking to younger people to encourage them to take care of their ears, to love their ears because it’s very important.
Nisha: So that’s your role with Action on Hearing Loss, to give talks and help people realise that this is something that could happen and there are things that can be done to prevent it from happening?
Helena: Yes I am an Ambassador for Action on Hearing Loss. They call me when they need someone to speak to people about what it’s like to become deaf or how important donation for research is. Something I am very passionate about Action on Hearing Loss is how much they invest in research. Research prevents people becoming deaf. And research they do into cochlear implants – which I have. And also research into a cure for deafness. It’s very important work that they do, and I like to speak about it. I like also to show my example. Of course in my case I became deaf because of Meniere disease which leads to three things – hearing loss, vertigo, and tinnitus.
There are a lot of causes of deafness. One is the fact that we constantly have noise in our ears through listening to music via headphones. Then we go clubbing – I used to go clubbing and I had to be near the speaker. I would go to a concert and need to be near the speaker. Now looking back I just think, for gods sake that was SO stupid! I remember driving my car with the radio volume completely up. Good tunes but the music would be so loud. I used to joke that I have safe driving technique for pedestrians – before I arrive they would hear me arriving so they would be careful when crossing the street. Of course that is so silly.
I say to my nephew, niece, and stepson and stepdaughter – luckily my stepdaughter who lives with us is very good, I don’t see her with loud music – about how to take care of their ears.
Nisha: So how else should people take care of their ears?
Helena: First of all you shouldn’t clean them with cotton buds. There’s a saying in Portugal that the only way to clean your ears is with your elbow! Which if you try is pretty much impossible!
You need to be sensible about volume exposure. If you are on the street and there is construction work being done and they have hammer jacks – you should avoid that sort of exposure.
There are certain pubs, clubs and bars where their staff wear ear plugs in their ears because they have night after night after night of exposure to loud sounds – it damages your ears.
I don’t know if you saw a joke about Gwyneth Paltrow a few years ago who took her son to Glastonbury and her son was wearing big yellow ear muffs – that’s not a joke! We should be bowing to her for protecting her child’s ears. If it is damaging to adults, when it comes to a child who is still forming their audio machine, it’s ridiculous.
If you ever receive a warning from your gadget that you are raising the volume of the sound – don’t do it. Further down the line you are going to miss the sound.
People say to me, “I enjoy listening to music very loud”. I say, “Yeah, so what do you prefer – continue enjoying music even if it’s at a medium sound level, or continue enjoying loud music and then one day you wake up and you are deaf?! Your choice!”
Nisha: That’s a good point, and good tips too thanks. Helena you said you are really passionate about volunteering for Action on Hearing Loss and you really enjoy your role. Do you have a favourite memory or moment from your volunteering experience?
Helena: I have a lot of favourite moments. One was when I went to give a talk at a Rotary Club. The Rotary Clubs in the UK have a lot of male members, some are mixed, and it’s very British. They have a ritual from beginning to end, and the age group.. there are not a lot of young people, they are older.
There I was giving this talk trying to be as fun as I could be with them, talking about a serious issue but trying to make it fun telling some jokes in between. I make it really light because talking about deafness can be really sad and quite serious but I try to make it light. It was a room full of older people – and there is a proven statistic that most elderly people have hearing loss but do not admit they have hearing loss. They should be wearing hearing aids but they don’t because of the stigma of getting older or being deaf.
I was giving this talk to them – a Rotary Club with just male members – and I ask if anyone has any questions. Everyone was silent.. no one had questions. So I finished my talk at sat down. When the meeting was finished you can’t imagine how many gentlemen ran in my direction – I had a queue of around seven people gathering around asking questions, “So what did you say the same of that hearing aid that no one sees is?” or “So I snore a lot and my wife..”. A lot of people had questions but not when everyone else could hear them. I thought that was quite funny because sometimes people just need to be a bit more private.
Nisha: It’s funny you mention Rotary Clubs, I’m involved with Rotaract which is for 18 – 30 year olds and is sponsored by Rotary, so I’ve been to quite a few Rotary meetings and I can’t imagine them not having any questions! But because of the stigma in the UK I can see why they asked afterwards.
Helena, have you had any challenges when you have been volunteering for Action on Hearing Loss?
Helena: Oh yes. I was at the 50+ Show in Olympia and the cochlea implant is fabulous, it’s superb when it’s one room and there are 2-3 people and each person speaks in turn. When you are in an exhibition hall and you have the sound of chairs and the mumble of people it can be quite challenging to understand someone speaking to you. So there I was at the Action on Hearing Loss stall trying to have conversations with people who wanted to know about a range of things: people wanted to know about cochlea hearing aids – there were people who had hearing loss, people who had become deaf, people who wanted to know more about the services Action on Hearing Loss provides, people wanted to know about certain products. I wanted to give that advice and info but I couldn’t hear them properly so that was very challenging. I spoke to my volunteer liaison officer afterwards and said, “send me wherever you want to send me but I can’t do exhibitions”. And that’s more than fine so of course they take that on board.
Apart from that I love volunteering, I love giving to others; I think it’s what keeps humanity rolling. I love my dog and the ocean, I recycle and like to protect the environment and animals, but when it comes to giving of me and my time it has to be anything related to human beings.
I am a stubborn believer in the human kind – sometimes you really need to be stubborn when you see so many acts out there when you see humans but you don’t see humanity, you have to be stubborn to believe we earthlings are better than any aliens out there but sometimes it can be difficult. That’s why I like volunteering, because it keeps you in touch with human kind. It’s by giving that you receive a lot.
Nisha: Very true, so you’d recommend volunteering to others then?
Helena: Absolutely! If you feel sad go and volunteer, if you are overweight and want to lose weight go and volunteer, if someone broke up with you go and volunteer. This might sound like a joke but it’s not. In the UK there are the most amazing number of charities you can volunteer with anything, whatever you feel strongly about. If you have a particular skill, or you want to develop a particular skill, volunteering is a great way to do it. If you are unemployed and you do not know what to do with your time I would say volunteer – it’s a very worthy way of keeping active and at the same time of helping others.
Nisha: I couldn’t agree more – I’ve been volunteering since the age of 16 in a range of different roles. It’s a great way to give back, great way to meet people, and a great way to learn about what you enjoy and are good at. Helena I started the Good News Shared website so people could learn more about charities and so charities have a way of telling people about their impact and achievements. Is there anything you’d like more people to know about Action on Hearing Loss?
Helena: One of the things I would want more people to know about Action on Hearing Loss is all the work that they do in terms of bio-medical research. The charity has two poles of work. One is helping and supporting people with hearing loss and deafness. Secondly, they do a lot of work on research. I would like more people to know how important research is, and how it’s an important part of the work the charity do. They provide grants to students and projects that are working on understanding, preventing and curing deafness. They have also done a lot of work into cochlear implants so I feel very passionate about Action on Hearing Loss’ research work because I have benefited from it.
Nisha: Thanks for sharing that Helena, I didn’t realise how much research work they do. Do you have any good news from Action on Hearing Loss that you can share with us?
Helena: The good news is definitely that recently that there was going to be a cut on providing hearing aids on the NHS and in Scotland at least that is not going to happen. There is still a risk of NHS England stopping providing hearing aids to people with deafness. Even just in my case, my hearing aids are from the NHS. At the time I wouldn’t have been able to buy the hearing aids myself and the fact is I continue to stay in work because of those hearing aids. If someone doesn’t have the financial opportunity to purchase their own hearing aids then that’s it, they don’t have hearing aids – without a hearing aid if they can’t continue to work they lose their job, go onto benefits, so it’s a vicious cycle.
Nisha: Wow well I’m pleased the cuts aren’t going ahead in Scotland. Helena thank you so much for giving me your time I have really enjoyed speaking with you and hopefully everyone will think about their hearing a bit more and think about how to protect their ears more.
Helena: Thanks for inviting me and giving me the opportunity to speak about Action on Hearing Loss and also to try and spread the message on how people can take care of their ears.
Watch the emotional video of Helena having her cochlea implant switched on for the first time: https://youtu.be/b83iuzG1Smc
Find out more about the work Action on Hearing Loss do, how they can support you and / or how you can support them by visiting their website: www.actiononhearingloss.org.uk/[magicactionbox]