Andreas S., husband to Caroline S. (read her blog series here), tells his perspective on her hearing loss and cochlear implant surgery through the ups and the downs of having a “hearing impaired relationship,” as he says. Read his perspective on experiencing a new relationship with his now hearing wife:
“Caroline and I are hearing impaired. We have a cochlear implant. Sometimes strangers get confused because we talk about hearing loss interchangeably. They think we either both have a cochlear implant or they are not sure which of us it is…but it is definitely Caroline. We had my hearing tested for Better Hearing and Speech Month in May 2018, as part of the #MillionEar Challenge. It turns out that I have excellent hearing for any age, but hearing is a ‘we’ thing.
Some thoughts on hearing loss
It sucks. I would like to move on, but fine, I will unpack it a bit. One of our podcast listeners (listen to Caroline and Andreas’ podcast here) asked, ‘Is there anything good about hearing loss?’ We struggled with an answer to that. The answer, honestly, is ‘nope.’ If you can live with an only slightly less glib answer, Caroline says she is happy to miss out on gossip and she sleeps like a rock. To recap, the best things about hearing loss are things not worth losing your hearing for.
Everyone understands hearing is important, they just forget about it because it is easy and transparent. Little kids do it! Hearing is passive until one day you have lost just enough that passive becomes active and you have to start asking, ‘Did you say store or door?’
The cochlear implant surgery process
The cochlear implant evaluation process is odd. Mostly, the process is a lot of waiting, punctuated by appointments and thinking aloud, ‘is this really happening,’ and ‘what if this happens?’ There is a point where you jump from daydreaming into a more concrete question. Caroline asked, ‘What will it be like to hear?’ and ‘will I be able to hear music and recognize voices?’
Most of our conversations during evaluation were ‘what would life be with hearing?’ We understood what a hearing impaired life was like, this was the unknown. At that point in our lives, Caroline had stopped using the phone in 2003. It was simply too much work. All-important calls would fall on me.
October 5, 2017 was the day I got the call that Caroline would receive a cochlear implant. How overwrought was I by the news? I was overwrought enough to know the only word that applied in that moment was ‘overwrought.’ I was desperate to share the news. I reflexively grabbed my phone, paused and then put it down. It was too important for a text. I was shaking…I felt something new: hope and anticipation.
I fired up the computer, wrote a letter in 16-point bold font and hand-delivered it to Caroline at work. I wrote, ‘Congratulations! You are a candidate for a cochlear implant. You will be my beautiful cyborg.’ We wept with joy in the middle of a hotel lobby.
When we got the candidacy call, we were asked when we wanted to select our manufacturer. Picking a cochlear implant manufacturer is not like picking a new car. There is a point when you buy a car that, if you ever get tired of the color, or want to look at a new dashboard, or want more features, you just sell the old model and get a new one. This was a much more permanent and serious decision.
This decision demanded a new way of thinking about being consumers, especially health consumers. We had spent a lot of time talking about what was important to us and what our priorities were. We chose Cochlear based on a short list:
- Verifiable hearing outcomes
- Research and development / re-investment
- Device features
Now, that all seems very noble and high-minded. The reality is, Caroline saw the Cochlear™ Kanso® Sound Processor and said, ‘WANT!’ Her actual words were more like ‘Why WOULDN’T I want one of whatever that is?’ The novelty factor of the off-the-ear processor was a big hit with both of us. Maybe it had something to do with its Australian origins, but choosing Cochlear was a no-brainer.
Among our most important conversations were ones about what hearing meant. For Caroline, it meant being closer to people and the world. Caroline was born to be in a parade but had become more of a wallflower. For me, it meant discovering what a Caroline with hearing was like.
Cochlear implant surgery day
Caroline’s surgery day was nothing. It is a blip. You are busy doing all the things the doctors and nurses tell you to, and it is just one day. I took pictures so I would remember the day, but it was a blur. The three days BEFORE surgery…oy. That is a different story altogether.
Certainty in life is rare. Certainty in hindsight is golden; ‘at this moment, my life changed.’ We talked about it a lot over the course of those three days before surgery. ‘At worst,’ we told ourselves, ‘your hearing will be gone in a decade anyway. The worst case scenario is that we have moved the clock ahead by that much.’ It was true. Caroline’s hearing loss was degenerative and progressive and she would eventually hear nothing in a few years. That was not a comfort, but it relieved some anxiety. It gave us an honest context to understand that we were making choices and accepting risk. In fact, the risks are small. Small enough that our surgeon called the implant procedure ‘pretty routine.’
On surgery day, Caroline and I had one task each:
- Andreas: Get Caroline to the hospital and admitted.
- Caroline: Fall asleep, wake up.
Both are pass/fail. We passed. Especially Caroline.
Post-cochlear implant surgery
We do not have kids, so we never had that ‘It’s a girl’ moment in the hospital. When the health care aide wheeled Caroline around the corner, she had just woken from surgery. She smiled weakly, pointed at the bandage on her right ear, and said, ‘It’s in.’ She then alternated between barfing and napping, but she was happy.
Yes, we have one of those lopsided weak-smiling head-bandage pictures. Every family with hearing loss should.
We had an extra-long wait to activation. The Christmas holidays played havoc with everyone’s schedules. It would be seven weeks until we arrived at one very unusual day. We tried to imagine what activation would be like. Then a thought occurred to me. It was a thought that unlocked a wormhole of other thoughts and emotions. The thought was this:
‘Today is your last deaf day.’
Caroline blinked at me. I blinked back. Whoa.
Full disclosure: my hope for Caroline’s hearing at activation was small. I simply did not know what to expect or hope for. We knew rehab could be long and occasionally frustrating. We wanted to be mature and realistic about Caroline’s hearing outcome.
Everyone knows their activation day. Who does not know their second birthday? Caroline’s is January 29, 2018. I mean, come on. It is an occasion! The sun caught a small golden cochlea pendant I gave Caroline. Tests were over. The healing was done. It was time for work.
Rehabilitation with a Cochlear implant
We do not really have much to say about Caroline’s rehab. Caroline heard. She heard not only voices and speech, but she heard them from the hallway with the True Wireless™ Mini Microphone (which Caroline calls ‘Mini Mo’). She recognized my voice (the character of it) and began to understand sound with shocking speed. Everyone’s experience is different, but for us, our world was upside down. Hope had been replaced by JOY. Yes, JOY in all capital letters.
The future/there is more than sound to process
‘I can hear the turn signal!’ ‘I can hear a dog barking outside!’ Caroline can now hear and is discovering the joy of hearing. For me, it has been a bit like watching a toddler explore and grow. Caroline’s sense of humor is astonishingly incisive and dark (and I love it), and she has a new self-image. Her clothing choices are becoming bolder. She says, ‘I have my life back,’ and she is not wrong.
One day I was in the shower and dropped the shampoo bottle. It made that clunking, tumbling racket that only things in bathrooms seem to make. Caroline burst through the door, for the first time ever, to ask if I was okay. She had never heard anything so loud and was worried I was hurt. For the first time in nearly 30 years I thought, ‘She can hear me. I’m safe.’ It was one of many tearful realizations that just smacks you right in the middle of your face knowing that now, things are different.
We have given ourselves a year to become a hearing couple. WE hear because WE have a cochlear implant. We need to take time for Caroline to experience new sounds. Dropped objects, squeaky doors, sewer drains, old TV shows that she has never heard…there is a lot to catch up on. Caroline probably needs to hear a lot of jokes and stories, but most will be lost to time. We do not feel bad about it. The past ended on January 28.
A friend asked what I thought our future would be like. This was my reply: ‘Imagine you had an infection. It is just bad enough that you go to the doctor and get antibiotics. A few days later, you wake up. Your wife is shaking you because you have slept through your alarm. Except you cannot hear what she is saying. Or, the sheets rustling, or that work is calling and your phone has been ringing for five minutes. You try to have a conversation but cannot. You grab a pen and paper and start writing. No more phone. No more radio. No more sound at all. Ever again. Walk through every part of your day without sound for the rest of your life. Now, do that in reverse.’ That’s us.”
Is your spouse dealing with hearing loss and considering cochlear implant surgery? Get more details on opening up their world and your relationship now.