I had some very fancy nerve conduction tests done when I first tried to obtain NHS hearing aids, about ten years ago, which showed that my auditory nerves are basically ‘slow’ and inefficient, pretty much like the rest of me’.
Speaking to me via email as he cannot converse normally, I am struck by Stephen’s sense of humour and determination. How do people react to him in every day situations? ‘I think I am getting too old to worry about what others may think of me they either accept me for the unique individual I am (for which read ‘eccentric’ . I was known as “Stephen R Weird” at school…) or they can diminuendo and accelerando off…!’
Stephen’s hearing has continued to fade quickly he tells me, whereas his mum’s and sister’s decline is fairly steady. ‘My mum’s level of hearing is such that she has never ever stopped listening to music and my sister still sings in a choir. However I have zero confidence in my own tonality.’
Did he have help from anyone as he lost his hearing? ‘No, although I did take inspiration from my mum who has always bounced back from whatever challenges life has thrown at her. I am a solitary beast (as well as an autodidact), by nature and tend to fight my own battles.’ He seems to have coped unfeasibly well considering the obstacles he’s had to overcome. ‘I find that I absorb and learn ways of coping better if I push myself and do my own research’ Stephen admits ‘which as my partner will tell you, usually involves piling my way through dozens of books and producing thousands of ranty words…’ . These ‘ranty’ words he describes are actually a rather great blog and with a substantial following on Twitter as well, Stephen is showing people what life is like in his severely limited universe. His muted but incredibly insightful view of the world makes me stop and marvel at how remarkable humans like him can learn to live with difficulties like this and find their own ways to pursue the things they love.
I want to know how music does actually feel to him now since his profound hearing loss. How is it a different experience? ‘Music is – “feels” – different physically, but the same emotionally. If I know a piece well, I presume that some sort of memory process kicks in to fill in the ‘gaps’. New pieces are helped by score-reading and score-learning. I have a weird, fuzzy form of synaesthesia which I first noticed learning the piano, and then as a choirboy, which means that I see musical notation when I hear music, although I think a large component of this is memory-based. It’s probably also helped by the huge amount of music I have both read and written during my many years, although this took a while to re-emerge, after not listening to music for a while.’
Has he used any devices to help him learn how to hear music again? ‘When I first lost my hearing, I spent a lot of time and effort building a sound system at home that is capable of playing music with (what still sounds to me like) great fidelity and which I can pipe directly to my hearing aids, via wires or Bluetooth. I struggle, though, to listen to portable or car radios, for instance so there is obviously a subjective component to what I hear (although I think this is true, to a lesser degree, for everyone). I need a full dose of frequencies and pitches to be able to latch onto…. This is like trying to explain Mahler or TS Eliot to a Taylor Swift devotee…!’
I sense his upbeat attitude to this mountainous journey he is facing, seeing the humour in really a rather bleak scenario. Does he ever feel like giving up? ‘I did go into a murky-coloured funk, for a few years, both as a result of the accidents and my loss of music. However there are a couple of books which I found inspirational, and immensely helpful – Oliver Sacks’ wonderful ‘Musicophilia’ and Michael Chorost’s ‘Rebuilt’, about his first cochlear implant. I also went on a wonderful pain management course (see my blog) a long time ago and some of the techniques learned on this can be applied to all sorts of other areas too’.
Are there particular types of music he finds harder to listen to than others? ‘Solo piano music I still struggle with and this breaks my heart: it is my favourite instrument; it is my instrument; and it means I miss hearing my favourite pieces and artists. I have a weird, variable form of diplacusis which seems to be more noticeable with string harmonics and it has taken me a very long time to be able to listen to music with more than a few parts. It is still my preference to listen to small groups. Orchestra of the Swan with only 13 players is my idea of perfection. Here, though I think it may be a limitation of the processors in my hearing aids. I keep thinking about buying a piano – probably electric: so it can interface with my hearing aids – but am still as the very early (and scary) stage and wondering which furniture to sacrifice!’
Although Stephen’s battle is uphill, he’s definitely winning. ‘I was overjoyed recently to realise (after intense score-reading) that Shostakovich’s symphonies 5 and 3 could still move me. I was able to ‘feel’ my way through their textures: but I put some (a lot, actually) of this down to conductor David Curtis’s trademark transparency and the wonderful Cheltenham Symphony Orchestra. I think I would struggle with unknown music and am scared, I must admit, to listen to densely-scored works I do not already know.’
I wonder how enjoying music is a different experience from when he had his full hearing. ‘There is definitely a core adaptation and this applies to any sounds or noises that hit me: even speech. Because of the accidents, I have basically had to learn to walk differently and the same applies to hearing. I think some of this is the reason for the “funk”. Until you come out of the other side, having learned to adapt, you feel as if you’ve lost something. In a way, this second chance, though, gives you a new perspective. You have to try, to listen, harder and it is this effort which makes it so very worthwhile. I wonder how people with no musical training adapt. It must be very different; very difficult…’
Orchestra of the Swan and the Cheltenham Symphony Orchestra, local orchestras to Stephen, have been life lines to him, in no small part due to the boundless enthusiasm and love of music of their conductor. ‘David treats me as a musical equal, takes me as I am, at face value, ignoring whatever disabilities would get in the way with most people. Obviously it helps that we are alike, in many ways (although I am ground-based; and he soared off into the stratosphere on his bike, many years ago…) and share similar backgrounds as well as explicit enthusiasm for all things musical. Secondly, he simply talks with me and trusts me. There is no hidden agenda. This non-judgmental attitude is utterly refreshing when you’re disabled. I think others are perturbed by a lack of understanding by the fact that a deafened person can write about music. God bless Evelyn Glennie, a major, major inspiration and Beethoven! They can’t understand that someone who struggles to walk (principally because of pain) also sometimes goes out hiking (albeit now, principally, on the flat). It is my own life, thank you very much, and if I wish to torture myself, for a bit of fun, then so be it. However, I will not put myself through such torture just because I am told to do so. I can be very obstinate and I think being disabled politicizes you, anyway (as does being in any minority) intensely.
What such folks don’t see is that it is the hard work, the intensity of the struggle and resultant reward, plus the fact that I love nature, love music. These are both beautiful distractions (from pain; from disability) in themselves which motivate me. Admittedly, with the rewards comes punishment. I will be knackered emotionally and physically, for days, sometimes weeks, after the effort made to go out to walk, to listen, to see a play. But I refuse to be either defined or limited by what other people, or my body, expect me to be capable of and I am more than willing, now, to pay the price.’
What advice would you give to someone newly experiencing hearing loss? ‘We all hear differently. I therefore think you have to find what works for you and accept that it (probably/possibly) won’t work for others. All I can do is say that it is possible and demonstrate by example. All others can do, as my extremely patient partner has done, is give you a gentle nudge, every so often. Our shared love of all types of music pushes me out of the house to hear music she loves and wants to hear (along with missing the Barbican and the paradise that is Wigmore Hall like heck, having moved away from London…)
Many people have praised Stephen’s courageous approach to coping with his disabilities. Does he feel brave? ‘Music is almost as precious a jewel as is life to me, (the two have almost always been synonymous for me) and both are therefore worth fighting for, especially as music gives me the distraction and delight that help me cope with any other negatives life throws at me.
I do not consider myself “courageous”. Admittedly, I am quite driven to prove myself but I am confident that many people would also be in my position. There are many in much, much worse places than me though, and they never stop trying to make things better. I think it is just part of the human condition. Until you find yourself staring up at the cliff-face there is no way of guessing how you would even begin to think about how to climb it. And it may only turn out to be a tinsy dry-stone wall, anyway…