Saturday, August 25, 2007

Deafness

It seems I was fated to live with deafness.

My mother was losing her hearing well before I was born. By the time I was adult and she was elderly she was quite deaf. I wasn't particularly patient or sympathetic.

Tom, still younger than she was then, is now deafer than she ever was. His loss of hearing has been rapid and steep, and getting steeper. We first noticed it around the time we were first married, 12 years ago, when we went for a walk to look at an eclipse of the moon. I remarked on how astonishingly loud the grasshoppers were, and he said what grasshoppers? A few years later, he was apparently ignoring people who spoke to him from one side or a distance, sometimes causing tension or misunderstanding.

When we first came here, we had no television. We listened to the radio, enjoying the early evening comedies, the News Quiz, 'Clue, Dead Ringers (always better on radio), but progressively these became impossible for him. We got television. The television grew louder and louder; I would ask for it down, frustration and argument ensued. When I spoke and he couldn't understand, I was mumbling. I remember my mother accusing my father of mumbling, which he did rather. Worsening communication for whatever reason can, of course, lead to a loss of confidence in what you have to say. She very largely gave up on television, or had it on very loud. Fortunately my father was fairly hard of hearing too. In fact I do have a very poor voice for deaf people, crackly and not low, childish, range and volume limited, jagged when I raise it, as my teaching tutor once pointed out, I've learned to project it better of recent years.

This was possibly the worst time; unhappiness,bewilderment, denial, resentment abounding and rebounding around the walls with the evening news. When he finally had a hearing aid, and turned the set on to the volume it had habitually been, he apologised for subjecting me to it and risking my hearing as well. At some point we discovered teletext subtitles, which were a help.

With some support and encouragement from friends, he finally had a test, some four or five years ago. It confirmed a loss of around 30%, which must be significantly more by now. Cost and inertia, some resistance, meant he didn't go for the hearing aid straight away, but was able to adjust to the fact, to accept and tell people that he was deaf. The fear and misery around it ebbed.

I have said ruefully that our mother spent our inheritance on hearing aids, which were mostly not used, broken, not serviced and otherwise abandoned. Those who supply hearing aids say complacently that most people settle down with them satisfactorily after a period of adjustment and tuning. I feel the truth is more that most people resign themselves one way and another to their limited usefulness. Tom has not only lost volume, but more importantly, definition of sounds, and whole areas of pitch. Mozart, he says, is full of holes, and I imagine the music unravelling like dropped stitches in knitting. Hearing aids can do little to redress these problems. I would say though, it is necessary to be persistent with going back and having the instrument retuned; computer technology exists now which comes far closer to allowing a hearing technician into the person's head to hear what they hear, and a good and experienced one will take time and trouble to adjust it. However, it has now rather reached the point for Tom, where to crank up the higher sounds any more would mean that every knife put down on the kitchen counter would be an unbearable explosion, while making little difference to the subtleties of human speech. One of its main useful functions has been that he can hear himself better, so doesn't talk so loud one to one or with small numbers, but then he better accepts me telling him when he's talking too loud now anyway.



More useful in some ways than the hearing aid is a set of cordless stethoscopic earphones which enable him to hear TV and music, even through walls and at quite some distance. Watching him some way down the garden animatedly conducting the Sibelius symphony I was watching on the Proms was a funny moment. They have made some pleasures possible again, but reinforce his isolation in other ways, and we fear that feeding high levels of sound into his ears in the way they do may be ultimately worsening the condition. I can't easily reach him to communicate when he's using them. In the open-plan, free-flowing space we live in, it is quite useful to be able to enclose ourselves in our own bubbles, I sometimes use the phones myself if I want to watch something he doesn't, particularly while doing something else where I need to move about, the sound quality is excellent. But the walls of these private spaces are not porous, we can't toss a question, exchange casual remarks. Or rather he can, I can't, and if he does he won't hear the reply. Watching TV together, we can't really share the jokes, comments, reactions to what we're watching. Having been around people who compulsively chatter and commentate through films, this is not necessarily a bad constraint...

Subtitling is also a benefit I've come to quite appreciate, and we bless the advent of DVDs which almost always supply it, just when watching videotapes was becoming impossible. I've grown quite reliant on it too, especially with films where the screen dialogue seems woefully lower in volume than all the bangs and crashes and incidental music of the soundtrack, and apparently quite important things are said off-screen which are completely inaudible. Television subtitling often obscures too much of the picture, and on live programmes and news is sometimes wildly out, sometimes amusingly so, like when they said Prince William's girlfriend had been remarkably sportive for the last three years ( I think they meant supportive...)

Loss of hearing set in at the same time as we came to France. It soon became clear Tom was not going to make much progress in understanding French, though he has made some; distinguishing sounds being difficult in his first language, it is naturally more so in another. This makes life more difficult for him, but has done much for both my confidence and my French. Old-fashioned gender stereotyping prevailing as it tends to in our marriage, where he does money and building, and I do cooking, and er, yes cooking, and most of the housework, and yoga with Emilie, and coffee with Fi, and blogging... oh, and putting drops in the dog's ears ( in fact, we're neither of us incompetent at any of those things, we just have our preferences, except he couldn't put drops in the dog's ears, and would probably get tired of yoga and coffee, ), I feel it redresses the balance somewhat when I have to take charge sometimes and do the more worldly stuff. Additionally, being here means we can have private conversations in public places as loudly as necessary with less concern that people are listening to us, or we are intruding on them.

I do very little cussing under my breath when he gets on my nerves, but if I want to, the option is there and he won't hear me...

And yet, and yet. It's perhaps easy enough for me to speak Pollyanna-ishly about the silver linings, I only live alongside his deafness, not inside it. The erosion of beloved music, one of the most important things throughout his life, the alarm when sounds which have become distorted, liminal, unidentifiable, the sudden clatter of the spin drier in the other room, the crack of a plastic bottle expanding, press formlessly and alarmingly against the curtain of deafness, or the sorrow that just when he finally realised he could actually make friends, be socially at ease and appreciated for the charm and humour he never fully knew he had before, he must now feel partially excluded from their conversations - people are kind and make efforts, but that is a difficult one; too much and he feels like an object of pity, a source of embarrassment, not enough and he's out of it - all of these losses, and more, I do not experience directly.

My mother, though no great socialite or people-person, relied very heavily for her sense of self and self-worth on her relationships with her outer world, specifically her children. Being withdrawn by deafness from verbal communication with us lessened her. We raced on without her, talking together sometimes as if she wasn't there. The stimulus of conversation reduced, rather out of the current of things, she became vague, slow, stewed too much on past things, resentments.

It is easy to condemn as unjust and ignorant the perception of deaf people as slow or stupid, but it requires examining. Eventually if you cannot receive certain stimuli, you will become dull to them. Think of the word intelligent. For Tom, much of the spoken world is becoming unintelligible, he can make less and less sense of it. And the presumption that not having heard equals not understanding, therefore stupidity, is sometimes one that he takes on himself, it is not imposed on him. So when I have read out loud from something 'Brahms', but he has heard 'Mahler', and continues under the assumption it is Mahler in the case, until I tell him that it isn't, I was reading from text so I wouldn't have said one when I meant the other, he may well jump to a defensive 'You're saying I'm an idiot, how do you know it wasn't your mistake?', when all I'm saying is he must have misheard. But such occurences are doubtless inevitable, and quite possibly go with the age gap territory; loss of certain powers do not equal loss of self, but it sometimes feels as if it does, no doubt. He does OK.

Others, like my sister-in-law, whose hearing loss began much earlier than Tom's, but is I think now slightly less severe, expend huge efforts, and put themselves under a lot of strain, in anticipating, interpreting, looking for cues and clues, and generally pretending understanding, which he doesn't, though he does sometimes laugh along with a conversation and respond to the general atmosphere when he hasn't heard what's been said. His mis-hearings are astonishing, dada-esque, bizarre and sometimes hilarious, bearing no resemblance to any remote probability of what I might have said. I always mean to write them down.

But, withal, I think I can truly say that for him, the loss of social interaction and conversation is not as hard as it was for my mother, or would be for many others. His greatest source of strength has never been the world 'out there' but his inward life, one of ideas, mathematic, scientific, spiritual, and a personal imagery and narrative of remarkable vitality, clarity and strength, fed by meditation, reading and writing. Of late he has voiced the sentiment that perhaps going deaf has enabled him greater access to his inner world, which is largely where he prefers and needs to be, and to push the sometimes abrasive, angering outer one further to the margins.


But he also needs me, and I him. I would not have him retreat into a 'world of his own', while I go about my business in a parallel existence, simply supplying one anothers basic needs, relying solely on touch and eye contact, which, without a more complex understanding, would surely lose something. Communication was ever our sure foundation, now it needs extra care.


Conversation while travelling in the car is difficult, best avoided at trickier driving moments. I can't speak to him over my shoulder casually, or from another room. It is perhaps similar to being with someone whose first language is not the same: one must talk clearly and precisely, start and finish sentences properly, generally better to form the thought fully before voicing it, and not expect to be picked up and followed automatically. A delicate point of negotiation is who makes the move toward whom to facilitate hearing. Protracted conversation requires more energy and effort and becomes tiring on both sides, a raised voice can easily be conveyed and received as an impatient or one, generalised frustration and anger at communication thwarted can seem to be directed at the other person. Yet in more relaxed, intimate situations sometimes the barrier can seem to soften, be momentarily forgotten; it is as though tension and strain can set up its own resistance to mutual understanding.

He reads this, most of the time. Not until after I've published and I rarely talk about what I'm writing beforehand; I don't write it especially for him and I don't feel I need his approval, I do not see this as a channel of private communication with my husband! I have said that I wouldn't want him to submit comments, but I didn't see why I should be able to make what I wrote available to the world at large and not to him. (I have the impression most people's husbands/wives/partners/significant others do read their blogs, or can if they wish... I don't know how others feel about this?) Having this opportunity of expressing myself truthfully and sometimes intimately, but in a way I wish to be heard, has become a valued outlet, in ways I hadn't foreseen, and also, sometimes, something I can share or offer to him.

People meeting Tom for the first time are often shocked, embarrassed or distressed by the extent of his deafness, which he never tries to conceal. Their compassion is appreciated. But as I watch him now working in the next room, singing, giving me an intermittent commentary I'm not obliged to respond to, talking nonsense to the dog, and I think of how full of plans and projects and dreams he is, I am somewhat surprised that this is a man who is 70 next month, and who seems to me to be neither failing nor unhappy. He may struggle to keep up in company, but he has a degree of presence in any conversation, his voice and delivery have weight, and should this ever veer toward pomposity, the word 'gravitas!' and a wink will surely suffice to leaven it.

It was a relief to escape my mother's deafness, I longed to enter a real, normal, world out there, without such annoyances. Now I see that the real, adult, world is one filled with unexpected contingencies, where you have to take what comes and work with it, again and again, with sermons in stones and blessings in adversities, if you're lucky. The difference in our ages being as it is, it always stood to reason he would come to need me one way or another. But because emotional neediness, dependence, imbalance was not part of the deal when we came to one another, necessity now is only an easy yoke, a really very light burden.

21 comments:

meggie said...

I related to so much of this post Lucy! Gom is deaf, & when he first became deaf, which of course, was a gradual thing, but we seemed to suddenly notice it was very much worse, for a period just before he retired, he became obstinate, refusing to believe he was actually deaf.
All the 'you mumble' comments & accusations.
He has got hearing aids now, & for the past 3 years things have been very much improved, but I think he must be losing more of his hearing & is to have another test in October.
It was very tiring, & very trying, before he admitted, or discovered how truly deaf he had become. I was very miserable, but the aids worked, & were a blessing.
I made him tell his boss at work, & finally his boss admitted he had thought he had become 'an ignorant old bugger, who just ignored him'.

leslee said...

Lucy, very absorbing post. Thought provoking.

Bee said...

When all is quiet, Mikey's hearing is probably better than mine. He can pick up things I have to strain to hear. But, for a long time we didn't realise his hearing has been damaged by too much loud music, being in bands and going to gigs. A prime example of how this effects him is when, one day we found ourselves in a busy city street with a crowd of relatives. We were all chatting happily amid the traffic noises but when I looked at Mikey he was frowning and looking a bit confused. I asked if he was alright and he said he couldn't hear what anyone was saying. I have a mother who has the same problem and another freind who is deaf in one ear. It dawned on me that I was wrong when I thought Mikey was just being difficult because he didn't like being in certain environments and would get stroppy. He cannot filter out background noise. To him the car going past behind him is as loud as the person speaking to him directly in front of him. Knowing this has made me more tolerant but more importantly I think has meant Mikey does not get so easily annoyed with other people and impatient with his surroundings in these moments. It was really hard work trying to get him to happily go somewhere he didn't really want to go just because it was important to me (like meeting my family in the city). For both of us I think it felt like it was because he wasn't interested but in reality that isn't true.

zhoen said...

(o)

D reads my blog, responds to me. We would find it very difficult to have casual conversation limited between us.

Cindy said...

My daughter moved out a few months ago and escaped my deafness. I know it is frustrating living with a hard of hearing person - my children have freely expressed this.

Still, I try to find humor despite the difficulties.

http://beethovensears.com

Cindy

annie said...

thanks. :)

zephyr said...

i so admire your honesty in this touching, thought provoking post.

While i have not lost my hearing, i have lost other physical abilities that defined me to myself for most of my life. i am still struggling with the vacancy and frustration...and the fear of what else might be taken away as i get closer and closer to 60.

Lucy said...

I am really touched and amazed by the responses to this; I though it was so long and personal no one would even get to the end!
Of the things that seem to be most clear, there's a lot of it about but no one wants to admit it. It seems to me ironic that the one disability we should be clear and open about, because it's essential to communication but not visible, is the one everyone's determined to keep a secret! But it's a subtle and delicate matter, and merits much thought. As Zephyr says, there are parallels with other things we fear losing, and the association with ageing and therefore failing is another aspect...
I recommend Cindy's blog on the subject, not least because it's sharp and funny; thanks for coming, Cindy.
Bee, darling, it's utterly wonderful to see you here! I shall e-mail you tootsweet to see if I can link to you yet.

Tall Girl said...

This moved me so...
I didn't know...
Thankyou for telling it so fully and beautifully and kindly.

Catalyst said...

I suffered hearing loss as a child and was once told I was virtually deaf in my left ear because the loss caused my brain to just shut that ear down. As the years go on (and I'm only a few behind Tom) the problem has become more serious, particularly in crowded restaurants or other locations where it becomes difficult to separate the spoken word from the ambient racket.

You have written beautifully and thoughtfully, as usual, on this subject. Thank you, Lucy.

Lee said...

A very caring and gentle post. Thank you for sharing part of your world with us. I guess the old adage, that it is not what happens to you but how you react to it that matters, comes into play here.

Suse said...

What a lovely, thoughtful, poignant post.

Thanks.

Dave said...

Very interesting post on a topic I know almost nothing about. No one in my immediate family has hearing problems, but this does resonate with what I observed of my Pop-pop in his last ten years, although his hearing loss was not terribly acute. He did enjoy being in his own world to some extent I think, and at large family gatherings he would just smile beatifically at the hubbub, probably relieved that he didn't have to focus on the details. As an arch-conservative, there was so much about the lives and speech patterns of his younger descendents that mystified him.

Lesley said...

I identified with this post too Lucy. My mother has been getting deafer and deafer over the years and I am constantly amazed at my own lack of patience. Something in me refuses to speak louder and blames any communication difficulties not on anything physiological but on her stubbornness when it comes to not getting a hearing aid.

Granny J said...

I have watched, with sadness, what has happened to my mother as her inputs -- hearing, sight, memory -- have declined, even though her actual thought processes seem to be quite adequate. She has used hearing aids for many years and has great scorn for people who refuse to admit their need. However, I suspect that far too many people feel that they cannot afford the high cost of the medical devices. (Anything medical is automatically priced far higher than similar goods. Two of Mom's table companions at her assisted living facility are deaf and both refused to get hearing aids, citing the background noise problem. However, I suspected price was the problem -- and discovered that at Amazon I could buy "personal amplifiers" for about $US45 that enable the pair to join in conversations and activities. One now wears her earphones at all times. It's too bad that more people aren't aware of this possibility. Thank you for this post, Lucy.

Lucy said...

Thank you all so much for your interested and interesting contributions, your honesty and compassion. One of those time when I feel I've reaped many times what I've sown.

Jean said...

I read this endlessly and varyingly moved and fascinated. You have a remarkable ability to intertwine emotion and analysis, like two plants climbing up the same frame. To be able to speak so cogently, but not complacently, about something so difficult and painful is rare, I think. Your last sentence is really the heart of it, isn't it? But all that went before doesn't allow us to think that it's therefore easy. My world feels like a rather better place every time I'm privileged to share such reflection.

Lucy said...

Thank you Jean.

herhimnbryn said...

Oh, Lucy. This post is so compassionately written. Thankyou for sharing .

Bro. Bartleby said...

My hearing loss began in the military, too much very loud noise. It progressed so slowly that by the time I found my self avoiding the 'soft spoken' folks, I knew I had a problem, but instead of seeking help, I created all sorts of strategies. About 6 years ago I finally scheduled an appointment with a hearing specialist. I can't tell you the revelation of that day. After various hearing tests, I sat across the desk with the specialist and she had various 'sample' hearing aids, and while she was writing I placed one 'over the ear' aid in my ear and -- I heard the pencil scratching the paper as she wrote! It was as though the world opened up! Well, today all my old strategies have been dropped, for I have not perfect hearing, but all the sounds of my youth are back, including the grasshoppers! At first I tried the tiny inside-the-ear-canal hearing aid, but found them too sensitive to moisture and the like. So in a bit of bravado, I ordered the 'big' over the ear hearing aids. I wasn't going to try to hide it anymore. As well, these hearing aids can be more powerful, and rugged. But what is most important is to find a hearing specialist, not someone who is merely selling hearing aids. The technology is amazing. The 'notes' or frequency that you have difficulty with, the 'computer' inside the aid will amplify. Also, non-speech sounds have their own signature, and the loud background noises can be filtered. A loud slam of the door is nearly totally filtered out. And I've met folks who have tried 'mail order' hearing aids, and of course the results are dismal. For it takes a competent audiologist to fine tune the computer inside the hearing aid before there is any hope for success. I think I returned a dozen times before I was satisified with the hearing aid, and I should add that the audiologist encouraged me to return until we were able to squeeze the maximum results from that very tiny computer. So the technology is there for most of the hard of hearing folks, of course if nerve damage is severe, then hearing aids will not restore what is lost. My prayers are with you and Tom.

Richard Lawrence Cohen said...

I have some trouble filtering out background n oise, and I think I may have trouble distinguishing consonants. But then again, I spend a lot of time with preteens, and everybody knows they chew their words and mumble... It's definitely worse when I talk to them than to others, though it's not absent when talking to others...What did you say? Get my steering checked? There's nothing wrong with my car's steering, what do you mean...?