The idea is that this post will be a "live" post that I'll update in a few months time, to compare hearing aids vs Cochlear Implant. Here's a few things I've been thinking about recently, and wondering if they will be easier, or how they might be different with a CI. This post is quite long, but my hope is also that if you take the time to read this, you might come away with a little more of an understanding of what it's like to be deaf and rely on lipreading.
*Walking and talking with the boys
At the moment, because I rely so heavily on lipreading, I can't have a conversation with the boys when we are walking anywhere - on the school run, for example. If they are talking to me, I have to stop, crouch down to their level and get them to look at me and repeat what they said, before I can understand them. So the walk becomes very stop-start, or it has to be one-sided or silent. I'd love to be able to have a conversation with them while we're on the go. Obviously in a few years time it will be fine because they'll have grown tall enough that I can see their faces without bending over. But I don't want to wait that long.
*Driving
I use a 'lipreading mirror' suctioned to the middle of the windscreen so I can see my front seat passenger's face without taking my eyes too far off the road. Doesn't work in the dark! And it's tricky to get a clear view of the boys in the back. Will I become a "safer" driver (i.e. not need to take my eyes off the road so much!) when I have a CI?
*General communication with the boys
Once in a while the boys are amazingly patient and will repeat things ad infinitum, until either I understand them, I feel like bursting into tears with frustration, or we agree to give up. Other times they get very cross with me when I don't get it the first time. Usually we are somewhere in the middle, but the bottom line is that frustration abounds (usually on their side but often on mine too) when I don't understand them. Or I agree to something, thinking they said one thing, and discover it was the opposite of what I thought I'd agreed to!
*Who do I look at?
When another adult speaks to one of the boys, I have to decide who I'm going to look at. Do I watch the adult, to see what they're saying, but miss the boys' reaction? Or do I watch the boys, to see their reaction, and then have no clue what the adult has said to them? With Stuart, I watch him. But with adults who are unfamiliar to the boys, I watch the boys - because I want to see how they are responding - if they're feeling shy or distracted they will often not respond at all, unless I prompt/encourage them. It's a tricky call to make, and I never feel like I manage it well. It would be great if the CI allows me to hear well enough that I don't need to lipread so much, and have to make difficult choices like that!
*Are they happy or sad?
If there is a loud noise coming from the boys, I can't tell if it's happy/excited shouting, or upset crying/yelling. I need to see their faces to identify their emotions. When they were babies, if there was a noise I couldn't immediately identify, I would assume it was them crying. Even if it turned out to be the washing machine or dogs barking, sounds which most babies aren't capable of imitating... I'm hoping that long-term I will be able to identify sounds (and hear the nuances of emotion in the sound) more readily with a CI, although I'm of course expecting things to get worse before they get better.
*Phonics
Helping Reuben with his reading and homework can be hard. I can't always hear (especially since going down to one hearing aid) if he's sounding out the phoneme/digraph/trigraph correctly. For homework, when we are thinking up words that contain a particular sound, I don't always get what words he's suggesting. Reuben is learning how to help me, by breaking the word up, or using his hands to try and sign/sketch the shape in the air, or pointing at something. When I am learning to hear through the CI, I think I will be doing phonics exercises, to learn what components of words sound like, through my "new ears", so that will be interesting, and might help me to help Reuben more!
*Speech
Discerning listeners can tell that I "sound deaf", especially if you hear me speak when I don't have hearing aids in - and can't hear my own voice at all, and thus tend to speak in more of a monotone. With hearing aids in I can hear voices (my own, and others, in a quiet environment), but not high frequency sounds, particularly "sss" sounds. This results in some words not being pronounced as clearly as they should, and my "sss" sounds tend to come out a bit harder, like "sshh". With a CI I should be able to hear higher frequencies more clearly. I wonder if this, combined with my homework that I will be doing, on listening to phonics, might lead to improvements in my speech?
*Using the phone
When I had analogue hearing aids I used to use the phone, mainly with family, whose voices I know well. Often it was hard, the conversation had to be on clearly defined topics (I don't know what words I'm listening for if you change the subject!) and lots of repeating was needed. But I'd give it a go. Since I changed to digital hearing aids, around 10 years ago, I have given up using the phone, because the sounds don't seem so clear (even with a direct input - see next point below). Even if I try to phone Stuart, whose voice I am most familiar with (eg. in a time critical situation where I haven't got time to wait for him to notice my text message and reply) I usually can't tell if he says "yes" or "no" to a direct question, and have to get him to text me his reply. I'd love to be able to use the phone again. My understanding from people who've had CIs, is that if you want to use the phone, you need to work at it. So I plan to. Maybe I'll phone a different family member each day, just for a few minutes, to practice (lovely family - you've been warned... ;)).
*Direct input vs hearing in space
Sounds are clearer to me if they come via a direct line into my hearing aids (using a radio microphone system for a speaker, or an audio line in for TV or phone) than if I'm just listening to a person speaking in the usual way - ie by listening to the sound waves transmitted across the room. But this involves setting up all the gadgets, plugging them in, etc. Which I don't routinely carry around with me outside the house, and don't have time to do in the above-mentioned time-critical situation. I suspect this will still be the case with a CI (hearing better via direct input) but the great thing is that the CI will be easier to connect (to the phone/TV/laptop, at least), as it should have Bluetooth connectivity, so no extra gadgets required.
*Groups
When talking with a group of people, it can be very hard to follow the thread of a conversation as it is batted around from person to person. It takes me a few seconds to orient myself to where the sound is coming from/which person is speaking next, which is enough for me to miss the first few words they're saying....so I spend a lot of time playing catch up - and the more the conversation jumps from person to person, the further behind I get/the more I miss. Because I will only have a CI on one side, identifying the direction the sound is coming from is likely to be more difficult than when I had two hearing aids and was hearing in stereo. So, following a group conversation might get harder. Equally, it might improve, if I no longer need to rely on lipreading as much. Stuart also wonders if I might be able to discern more easily where people are pausing, to jump in with my reply, rather than waiting (and waiting) until there is an obvious pause/break in the conversation. This could be interesting...
*Tiredness & Extrovert/Introvert
It is very hard to quantify, because I have never been not deaf. But I am told that because I lipread all the time, that is tiring and hard work (and especially when you're trying so hard to understand an upset 3 or 4 year old because if you misunderstand what they say, then you're about to be precipitated into meltdown central), and so I'm more tired by the evening than a hearing person would be. I do know I need more sleep than Stuart. And the Speech & Language Therapist who assessed me for a CI was predicting that after a year of CI, I should be less tired in the evenings, because (while I'm still likely to need to lipread) I shouldn't need to concentrate quite so hard on the lipreading. A related area, that I'm interested to see whether it will change, is my personality. In Myers-Briggs personality tests I usually come up as extrovert, but sometimes I come up as introvert - depending on whether I do the test with my deafness in mind, or not. I've been told I'm borderline introvert/extrovert. My interpretation is that I'm naturally an extrovert, but my deafness makes me introvert sometimes, because I'm tired from lipreading all day, so I can't face a party or social event in the evening simply because of the effort that will be involved in understanding people. If I can hear better, and be less tired, will I want to be with people more? Time will show....
*Backache and posture
This is probably an unexpected one, but I have a lot of tension and tight muscles in my back, and quite a poor posture, due to straining forward to hear/see/lipread people. Recently I have also had quite a lot of cricked neck issues, relating to tightness in these muscles, and regular massage sessions from Stuart are a lifesaver. Hopefully in a year or so, my back will be much less tight, as I hope not to be straining to lipread as much....
*Response time
Sometimes when I'm talking with someone, particularly if the topic of conversation is particularly involved, it can take me time to gather my thoughts and formulate my answer. If I'm in a group this means that by the time I've thought of something appropriate (or even, once in a blue moon, witty!) to say, the conversation has moved along and I've missed the opportunity. Sometimes I think this happens because I have to use all of my brain to lipread, fill in the gaps (lipreading is about half and half understanding and guesswork, after all) and understand what's been said to me, so it's not until the other person has stopped speaking that I have a chance to think about my response to what they're saying. If I need to lipread less, will I have more brain space to think while the other person is speaking? Will I become quicker and more animated in my repartee?!!
*Public Announcements
I have never been able to hear annoucements made on tannoys at airports/train stations/shopping centres/supermarkets, or on the aeroplane/train, etc. Obviously the sound quality (particularly in train stations) is usually poor, but the simple truth is that if I can't see the speaker to lipread, then I have no hope of ever understanding what's being said. Most of the time it doesn't matter. But when you're on a train that's delayed for some reason, there's no way to find out why/how long/where to go instead, and it gets tricky. I encountered this a lot in my commuting days. And I HATE having to ask complete strangers what the announcement said, so usually I just try to find the info online, or just wait until something happens....! I'm not expecting the CI to fix this, as I know that even for people who hear well, it's tricky to hear, but I'm hoping it might be a bit better, that I might even be able to catch a few words or the gist of what was said.
*TV/cinema
Watching TV, videos or films without subtitles is a waste of my time. If I can see the speaker's face, and I have a direct input to my hearing aids, then it's still hard because it takes me time to get used to how people speak, their lip patterns and choice of words, accent, phrases, etc. But most film footage you don't get a clear view of the speaker's voice for more than a few seconds at a time. So I won't go to the cinema unless there's a subtitled screening. Since they're usually at ridiculous off-peak times like 11am on a Monday morning, it's a rare treat for me. Thankfully most things are subtitled on TV these days, but sometimes they aren't, and that's a pain! Maybe with a CI I won't be quite so dependent on subtitles?
*Meals with groups
At mealtime, I have a choice - listen to the conversation. Or eat. I can't do both simultaneously. Sometimes I talk, until I suddenly realise everyone else is halfway through their meal and I haven't even started yet, and my food is now stone cold. So usually I start by zoning out of the conversation for as long as it takes me to eat my food, and then once my plate is clean, I am free to watch the speakers and join in.
*Walking and talking with the boys
At the moment, because I rely so heavily on lipreading, I can't have a conversation with the boys when we are walking anywhere - on the school run, for example. If they are talking to me, I have to stop, crouch down to their level and get them to look at me and repeat what they said, before I can understand them. So the walk becomes very stop-start, or it has to be one-sided or silent. I'd love to be able to have a conversation with them while we're on the go. Obviously in a few years time it will be fine because they'll have grown tall enough that I can see their faces without bending over. But I don't want to wait that long.
*Driving
I use a 'lipreading mirror' suctioned to the middle of the windscreen so I can see my front seat passenger's face without taking my eyes too far off the road. Doesn't work in the dark! And it's tricky to get a clear view of the boys in the back. Will I become a "safer" driver (i.e. not need to take my eyes off the road so much!) when I have a CI?
*General communication with the boys
Once in a while the boys are amazingly patient and will repeat things ad infinitum, until either I understand them, I feel like bursting into tears with frustration, or we agree to give up. Other times they get very cross with me when I don't get it the first time. Usually we are somewhere in the middle, but the bottom line is that frustration abounds (usually on their side but often on mine too) when I don't understand them. Or I agree to something, thinking they said one thing, and discover it was the opposite of what I thought I'd agreed to!
*Who do I look at?
When another adult speaks to one of the boys, I have to decide who I'm going to look at. Do I watch the adult, to see what they're saying, but miss the boys' reaction? Or do I watch the boys, to see their reaction, and then have no clue what the adult has said to them? With Stuart, I watch him. But with adults who are unfamiliar to the boys, I watch the boys - because I want to see how they are responding - if they're feeling shy or distracted they will often not respond at all, unless I prompt/encourage them. It's a tricky call to make, and I never feel like I manage it well. It would be great if the CI allows me to hear well enough that I don't need to lipread so much, and have to make difficult choices like that!
*Are they happy or sad?
If there is a loud noise coming from the boys, I can't tell if it's happy/excited shouting, or upset crying/yelling. I need to see their faces to identify their emotions. When they were babies, if there was a noise I couldn't immediately identify, I would assume it was them crying. Even if it turned out to be the washing machine or dogs barking, sounds which most babies aren't capable of imitating... I'm hoping that long-term I will be able to identify sounds (and hear the nuances of emotion in the sound) more readily with a CI, although I'm of course expecting things to get worse before they get better.
*Phonics
Helping Reuben with his reading and homework can be hard. I can't always hear (especially since going down to one hearing aid) if he's sounding out the phoneme/digraph/trigraph correctly. For homework, when we are thinking up words that contain a particular sound, I don't always get what words he's suggesting. Reuben is learning how to help me, by breaking the word up, or using his hands to try and sign/sketch the shape in the air, or pointing at something. When I am learning to hear through the CI, I think I will be doing phonics exercises, to learn what components of words sound like, through my "new ears", so that will be interesting, and might help me to help Reuben more!
*Speech
Discerning listeners can tell that I "sound deaf", especially if you hear me speak when I don't have hearing aids in - and can't hear my own voice at all, and thus tend to speak in more of a monotone. With hearing aids in I can hear voices (my own, and others, in a quiet environment), but not high frequency sounds, particularly "sss" sounds. This results in some words not being pronounced as clearly as they should, and my "sss" sounds tend to come out a bit harder, like "sshh". With a CI I should be able to hear higher frequencies more clearly. I wonder if this, combined with my homework that I will be doing, on listening to phonics, might lead to improvements in my speech?
*Using the phone
When I had analogue hearing aids I used to use the phone, mainly with family, whose voices I know well. Often it was hard, the conversation had to be on clearly defined topics (I don't know what words I'm listening for if you change the subject!) and lots of repeating was needed. But I'd give it a go. Since I changed to digital hearing aids, around 10 years ago, I have given up using the phone, because the sounds don't seem so clear (even with a direct input - see next point below). Even if I try to phone Stuart, whose voice I am most familiar with (eg. in a time critical situation where I haven't got time to wait for him to notice my text message and reply) I usually can't tell if he says "yes" or "no" to a direct question, and have to get him to text me his reply. I'd love to be able to use the phone again. My understanding from people who've had CIs, is that if you want to use the phone, you need to work at it. So I plan to. Maybe I'll phone a different family member each day, just for a few minutes, to practice (lovely family - you've been warned... ;)).
*Direct input vs hearing in space
Sounds are clearer to me if they come via a direct line into my hearing aids (using a radio microphone system for a speaker, or an audio line in for TV or phone) than if I'm just listening to a person speaking in the usual way - ie by listening to the sound waves transmitted across the room. But this involves setting up all the gadgets, plugging them in, etc. Which I don't routinely carry around with me outside the house, and don't have time to do in the above-mentioned time-critical situation. I suspect this will still be the case with a CI (hearing better via direct input) but the great thing is that the CI will be easier to connect (to the phone/TV/laptop, at least), as it should have Bluetooth connectivity, so no extra gadgets required.
*Groups
When talking with a group of people, it can be very hard to follow the thread of a conversation as it is batted around from person to person. It takes me a few seconds to orient myself to where the sound is coming from/which person is speaking next, which is enough for me to miss the first few words they're saying....so I spend a lot of time playing catch up - and the more the conversation jumps from person to person, the further behind I get/the more I miss. Because I will only have a CI on one side, identifying the direction the sound is coming from is likely to be more difficult than when I had two hearing aids and was hearing in stereo. So, following a group conversation might get harder. Equally, it might improve, if I no longer need to rely on lipreading as much. Stuart also wonders if I might be able to discern more easily where people are pausing, to jump in with my reply, rather than waiting (and waiting) until there is an obvious pause/break in the conversation. This could be interesting...
*Tiredness & Extrovert/Introvert
It is very hard to quantify, because I have never been not deaf. But I am told that because I lipread all the time, that is tiring and hard work (and especially when you're trying so hard to understand an upset 3 or 4 year old because if you misunderstand what they say, then you're about to be precipitated into meltdown central), and so I'm more tired by the evening than a hearing person would be. I do know I need more sleep than Stuart. And the Speech & Language Therapist who assessed me for a CI was predicting that after a year of CI, I should be less tired in the evenings, because (while I'm still likely to need to lipread) I shouldn't need to concentrate quite so hard on the lipreading. A related area, that I'm interested to see whether it will change, is my personality. In Myers-Briggs personality tests I usually come up as extrovert, but sometimes I come up as introvert - depending on whether I do the test with my deafness in mind, or not. I've been told I'm borderline introvert/extrovert. My interpretation is that I'm naturally an extrovert, but my deafness makes me introvert sometimes, because I'm tired from lipreading all day, so I can't face a party or social event in the evening simply because of the effort that will be involved in understanding people. If I can hear better, and be less tired, will I want to be with people more? Time will show....
*Backache and posture
This is probably an unexpected one, but I have a lot of tension and tight muscles in my back, and quite a poor posture, due to straining forward to hear/see/lipread people. Recently I have also had quite a lot of cricked neck issues, relating to tightness in these muscles, and regular massage sessions from Stuart are a lifesaver. Hopefully in a year or so, my back will be much less tight, as I hope not to be straining to lipread as much....
*Response time
Sometimes when I'm talking with someone, particularly if the topic of conversation is particularly involved, it can take me time to gather my thoughts and formulate my answer. If I'm in a group this means that by the time I've thought of something appropriate (or even, once in a blue moon, witty!) to say, the conversation has moved along and I've missed the opportunity. Sometimes I think this happens because I have to use all of my brain to lipread, fill in the gaps (lipreading is about half and half understanding and guesswork, after all) and understand what's been said to me, so it's not until the other person has stopped speaking that I have a chance to think about my response to what they're saying. If I need to lipread less, will I have more brain space to think while the other person is speaking? Will I become quicker and more animated in my repartee?!!
*Public Announcements
I have never been able to hear annoucements made on tannoys at airports/train stations/shopping centres/supermarkets, or on the aeroplane/train, etc. Obviously the sound quality (particularly in train stations) is usually poor, but the simple truth is that if I can't see the speaker to lipread, then I have no hope of ever understanding what's being said. Most of the time it doesn't matter. But when you're on a train that's delayed for some reason, there's no way to find out why/how long/where to go instead, and it gets tricky. I encountered this a lot in my commuting days. And I HATE having to ask complete strangers what the announcement said, so usually I just try to find the info online, or just wait until something happens....! I'm not expecting the CI to fix this, as I know that even for people who hear well, it's tricky to hear, but I'm hoping it might be a bit better, that I might even be able to catch a few words or the gist of what was said.
*TV/cinema
Watching TV, videos or films without subtitles is a waste of my time. If I can see the speaker's face, and I have a direct input to my hearing aids, then it's still hard because it takes me time to get used to how people speak, their lip patterns and choice of words, accent, phrases, etc. But most film footage you don't get a clear view of the speaker's voice for more than a few seconds at a time. So I won't go to the cinema unless there's a subtitled screening. Since they're usually at ridiculous off-peak times like 11am on a Monday morning, it's a rare treat for me. Thankfully most things are subtitled on TV these days, but sometimes they aren't, and that's a pain! Maybe with a CI I won't be quite so dependent on subtitles?
*Meals with groups
At mealtime, I have a choice - listen to the conversation. Or eat. I can't do both simultaneously. Sometimes I talk, until I suddenly realise everyone else is halfway through their meal and I haven't even started yet, and my food is now stone cold. So usually I start by zoning out of the conversation for as long as it takes me to eat my food, and then once my plate is clean, I am free to watch the speakers and join in.
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