It has been 7 weeks since the surgery, and three weeks since I was activated and received my processor and all its accessories. I’ve had many ups and downs since, struggling to deal with the recovery, the tinnitus, the loss of the residual hearing, as well as communication issues with my friends and family.
A few days ago I was finally able to articulate to myself and a couple of friends how things are processed in conversation for me. My brain seems to only be able to handle a few sentences at a time, and then at times will literally blank out while trying to process what was just said. There are times that I can follow a whole monologue, or conversation easily, and other times it is a struggle. My mind wanders sometimes (not purposefully) and other times it blanks out and processes nothing. I am also unaware at times of people addressing me, or trying to include me in conversation. I know I come across at times as “snobby”, “not wanting to talk to others”, when the case really is one of three things 1) I totally miss the fact I am being spoken to or 2) It simply did not process properly or 3) I am overwhelmed already in a situation where there are a lot of things to contend with. I sometimes involuntarily look away at the wrong times and this unintentionally sends the message that I am uninterested, not paying attention (although if I am keeping an eye on my kids, they are my focus), or being rude, when the case really is, my brain is saying “ok, hold on, let me process this before I deal with more input”. Majority of time I am fine in one on one situations or very small groups. A party, or other similar social situation with multiple conversations and background noise generally makes me more reclusive and watchful, rather than participatory.
With my hearing aids, it was a struggle to begin with on a daily basis. Day in, day out, I work at speaking clearly all day, at lip reading and having conversations with others. At focusing, processing, and communicating back what I hear, or need from the speaker. It is a lot of work for me. Right now, with wearing one hearing aid, and one implant, I am currently getting two very different auditory inputs. It was hard enough already and now, with the implant activated, I am contending with trying to make sense of what I hear with the processor. Some of the time I hear sounds as normal, and those are the low frequency sounds. Other times, I hear a lot of different sounds and tones and beeps that make no sense to me at all. Even if I can make out a conversation, if there are other things going on, it can create a lot of interference in my ability to translate the sounds and words I am hearing or lipreading. I still don’t identify every thing I hear, and the greater difficulties will be in identifying sounds in the room or another room when it is not part of something I am focusing on (such as my phone ringing during the appointment – which I managed to pick up (and even located the direction it was coming in) after she asked me if I heard a different sound, but didn’t identify as my phone).
It has been very tiring trying to make sense of what I hear, and difficult to find time to go without the hearing aid in order to fully focus on the auditory input of the processor. I admit I have been frustrated at the slow pace and the inability to recognize sounds with the implant as I do with the hearing aid. My head knows it will take time, my heart, and thus impatience, just wants to go from 0 to 60, NOW.
However, there have been a few rewards:
Two weeks ago, I identified my son’s jumperoo music, with the TV going, and his babbling, I managed to isolate the music. Today, on my way to my appointment, I was listening to music and switching between the two programs on the processor. In doing so, I noticed that I actually heard 70 per cent of the lyrics in the songs and actually heard the music. I had thought I was still getting input through the left ear, even though the hearing aid was turned off, but in fact, was getting fairly normal input with the processor, or rather something like 60 percent normal input. Granted, it was a CD often heard, and familiar, Madonna’s True Blue, but still… to be able to do this with the processor alone, at three weeks post activation, and to realize I was beginning to hear music and words in the song more “normally” is really quite something to me. When I was preparing supper, it began to rain heavily. We have a skylight above the island, and I had both the hearing aid and processor on. I turned off the hearing aid, and listened, and the rain pattering on the skylight and the deck outside, was heard clearly as you would hear it. This was even with my son’s whining in the background.
During the appointment, I kept the hearing aid turned off, and heard my son’s voice as a mix of normal and highly pitched sounds. As well as my voice and the audiologist’s was a mix. We changed the programs a bit and then tested my speech comprehension, and blew myself away… Just two weeks ago, I barely managed to make out 3 numbers out of five spoken.. today I confidently made out 6 out of 7 numbers spoken, 7 out of 10 months spoken, and with the following “aa” “ee” “oo” “ii” “sh” “s” “tch” sounds, I was able to identify 6 out of 9 spoken, which was incredible to me, especially because I even got the “sh” and “s”, and i cannot hear those with the hearing aid. Those were heard as extremely high pitched, but somehow, I figured it out. She was extremely surprised and pleased that I did so well with our little speech comprehension test (no lipreading). We also did the same with a few sentences. At first I lipread and repeated it back. All correctly. Then, I would look away part way through, and still, was able to repeat back 80 to 100 percent of the sentence. Granted the years of experience I have had with lipreading and learning to decode what I heard on the phone helped me with this test, but I am pleased already with the initial result. (Keep in mind, this is in a quiet room, door closed, one on one, with only my son’s babbling and cries as the background noise interfering with my decoding of what I was hearing.
We discussed Audio Verbal training, and unfortunately the focus on that is largely for children and thus the funding. It is really expensive to do this for adults. However, she gave me some sites to check out and try out, and said they were working on getting a study together on Audio Verbal training, and that if I was interested, she would recommend me for the study. This way, I could get “free” training, and yet also help them out, which in the long run could lead to funding for adults in getting this training. It would be sometime in the next six months or so, so I am hoping I will be lucky enough to be able to participate.
There will be lots of work involved with decoding what I hear on a daily basis, more than people realize. There will be times it will be overwhelming and I will simply shut down. No amount of focus or effort will make me successful at these times. Fatigue, illness, distractions, too much input, will get in the way of successfully decoding conversations and sounds. It happens. Telling me to focus and listen only frustrates me and irritates me because sometimes, my BRAIN just does not want to. Sometimes, I am truly too tired, distracted, sick etc to put forth the effort. There are some people that cannot process a thing until they have had their second or third or fourth cup of coffee. That is pretty much me at times, and often the whole the day, where no matter what, i just cannot process a thing.
I left my appointment feeling a little more encouraged and optimistic about my progress, and will try to maintain that on a daily basis by noting what things I have been picking up.
The support, encouragement of my friends and family is so important, and understanding that this is hard work for me, harder than I have ever experienced growing up with the speech therapy and trying to become part of the hearing world. It is so hard to explain what I hear as opposed to what others hear. It is pointless to be frustrated with me for my lack of response, understanding, or communication, because this is not natural to me. This is work. It is a daily process and the only time I get a break from it, is when I sleep, or veg out reading in a quiet room. It is physically tiring and stressful, day in, day out. I know that I have accomplished so much that people thought I was simply British (my speech – which is a compliment), or just mildly hearing impaired (another compliment), but they don’t realize how much work it is, and how hard I work at it every day. I make it look easy I suppose, at times.
More to come 🙂
————Thank you to my family, friends, children and hubby for your love and support and encouragement. I could not do this without you. ————–