Before the cochlear implant surgery, out of all the things I was mildly apprehensive about, probably the stand-out concern was how I’d manage in the two weeks after the surgery, but before switch-on. I knew that in this time I would have no hearing at all.

I am not afraid of silence. In the last few years, I’ve been profoundly deaf without hearing aids anyway. When the hearing aids were out, I had very little sound. I’m used to having my hearing aids out when home alone, both for comfort reasons and because I find it stressful to “sort of” hear noises and not be able to identify them. I would start to worry, and when you start thinking “What if…?” it doesn’t take long to get really scared. Who needs that? So the hearing aids stayed out and what the ear doesn’t hear, the mind doesn’t worry about. :-)

No, it’s not the idea of silence that bothered me: I’m used to that. But I’m also used to being able to put my hearing aids in my ears when I do want or need to communicate with others. I was a bit uncertain how I’d manage for two weeks without being able to communicate aurally.

The reality has been quite interesting. I’ve found I do “hear” sounds. I know I have no hearing, but there are certain times when I expect loud sounds and it’s like my brain is filling in the gaps it knows are there. Sounds like my dining chairs scraping on the tiled floor, or the toilet seat lid banging shut. I’ve learned to anticipate them, and sometimes I could swear I heard them!

Also, my speech. I can’t hear myself! I know I am not talking in a monotone, but how do I know? I can’t hear it. But my brain clearly expects those inflections to be there, and I think my speech sounds pretty normal, except I have no idea of the volume. I’ve been hushed once or twice. :-|

And it was quite funny (to me!) to find myself humming. I can’t hear myself hum, yet I was humming a tune. And I’d bet anything the tune was in tune! Because I could hear it in my mind, and my brain knew what to do. It is so natural for me to hum as I go about daily life.

And communication? Ah. Much as I expected. Family has been really good about writing things down for me and it’s a nice feeling that they want to include me. But there’s still so much I miss out on — even more than “usual”. That is both frustrating and isolating.

Helen Keller, probably the world’s most famous deaf-blind person, said:

“Blindness isolates us from things; deafness isolates us from people.”

The isolation is why I so badly wanted cochlear implants.

However I know well that it’s only temporary so I don’t let it get me down. I am just waiting for switch-on on Wednesday, July 9.

Yesssssssssssssssssssssssssss.

Well! Thank goodness that’s over!

As you know, I have been hugely looking forward to the implant surgery — not for the surgery itself, of course, but because it’s the first step on the road to hearing again. I knew that Thursday, 26th June wasn’t going to be exactly fun — but there was never a moment I even wished I didn’t have to go through with it. I know cochlear implants will be life-changing for me, and it’s not like there was any choice — well, no palatable choice, anyway, when the only alternative was to go totally deaf.

So, here I am, one week after surgery, and I thought I’d write down my experiences.

Pre surgery

Andy took me to the hospital for 6:30am. I was admitted swiftly, and taken upstairs to the waiting ward, where I was interviewed, weighed, and legs measured. I am cross now that I didn’t get photos of the white stockings and other legging thingies I had to wear to help prevent blood clots — believe me, together with the hospital gown, it wasn’t a good look!

The nurse looking after me was very helpful, and I gave her a prescription the anaesthetist had given me, and in turn she gave me a couple of tablets to relax me. A fellow came in to talk to me, some kind of assistant to the anaesthetist, but I can’t remember what he called himself. He asked a few brief questions, mainly double-checking things I’d been asked before. Then he wheeled me, still on my bed, to the theatre. I asked if he was a good driver and he said no, the trip to theatre was the scariest bit of the whole thing. Riiiiiiiight…

The anaesthetist was waiting in the theatre and he and his assistant fussed around me for a while. The anaesthetist inserted the drip thingummijiggy in my wrist. I would learn to hate that drip thingummijiggy — but I didn’t know that at the time.

Then… I opened my eyes and saw I was in a room with several other beds and some nurses. I saw the time was 12:30pm. I’d been taken into the theatre pretty well spot on 8am. I thought I must be ready to head for my room by now, but it was some time (or so it seemed to me) before I was taken there. Mum told me later it was a total of 6 hours before I was taken to my room, so it’s possible I mis-read the 12:30pm and I was in surgery for much longer than I thought.

In hospital, post surgery

I was a little disappointed to find I was in a shared hospital room, but it was ok as it happened because no one else was in the room, which therefore appeared to be quite spacious. Of course I was dopey and dozy and had an aching head, but on the other hand I was feeling great. It was done. It was over!

I had a whopper of a pressure bandage around my head and between my head and the drips in my wrist and a drip thingy in my foot, I couldn’t get comfortable but the nursing staff were just amazing. They were kind, attentive and supportive and I was never made to feel I was the slightest bit of trouble. If there was anything they could do to make me feel better, then they wanted to do it. I felt almost embarrassed at the attention but at the same time, it was reassuring.

Andy brought the kids in but they didn’t stay long. They had come to see me, so all the focus was on me, yet I couldn’t hear a thing they said of course so everything had to be written down. I felt awkward and strained. Andrew asked me if I wanted to rest so I said yes — which was, of course, true. I was pretty dosed up with drugs (painkillers) at the time. Much as I loved to see them, I preferred to be alone.

Neil from work also came to visit and he was very kind and patient. While he was there, my dinner arrived. Even though I had no appetite (yes this is me we’re talking about, believe it or not!) I tried to take a mouthful but it hurt to open my jaw enough to get the fork in my mouth. So much for dinner!

Later, my parents came to visit too. Then I settled for what was a very long night.

I was in pain – not excruciating pain, but moderate pain, and I was uncomfortable from having to lie on the back of my head without being able to move to either side, and there were regular blood pressure checks, intravenous antibiotic top-ups, painkillers administered — but you know, the absolute worst thing about it was the wretched drip thingy that had been left in my foot. It meant that my search for comfort due to lying on my back was also restricted by my foot, which I couldn’t move much or rotate at all.

Morning arrived and it was a waiting morning. I was awake early, as tends to happen in hospitals, although still very dozy. The surgeon came by at 8am and told me the operation went perfectly. He told me I’d keep the bandaged head for another day and a visiting nurse would take it off the next morning. (The bandage, that is — not the head!) I would be allowed to wash my hair in two more days. Everything was pretty straightforward and it was a matter of waiting a couple of hours while everything was sorted out for me. Then I could go home.

I attended to my toilette and was horrified to brush my hair and have clumps of it come away. I was to discover later that it wasn’t as bad as it seemed, but with my hair also lifted up by the bandage, it seemed short and thin and my initial thought was that it was a good thing I’d planned to get a few inches taken off the length of my hair, because it was going to have to happen now anyway!

The one-eyed monster

It was a real relief to be home, and settled in my own nice, big, soft, comfy bed. But my nightmare began that night. My bandage was becoming increasingly uncomfortable, and on one of the frequent occasions where I woke up in discomfort from lying on my back, and had to take painkillers and get up until the aches and pains eased, I saw that my face was swelling below the bandage. Throughout the night this became worse until my right eye was quite swollen.

I SMS’d Andy at about 6:30am to ask him to call the hospital. Eventually I had an SMS from the visiting nurse saying she’d be around between 7:30am and 8am. What a relief. I was up and about and feeling pretty good except for the pain from the bandage, so I bustled around tidying up about the place until the nurse arrived.

I felt amazing relief when the bandage was finally removed. The nurse warned me that the eye might close completely, and kept in close contact for the rest of the day (Saturday) and, in fact, the whole weekend. My eye did indeed close completely and both sides of my face swelled badly. I was a one-eyed monster and it was a face to scare small children.

I also felt pretty rotten — I think I overdid it, doing housework on my first morning home after surgery! I haven’t had surgery before (other than having my wisdom teeth out when I was 15) so I really had no idea what the journey to recovery would be like. If I felt good, that meant I could DO stuff — right? I was to learn differently: if I DID stuff, I wouldn’t feel good for long!

Dr Atlas had told me not to drive for about a week, but apart from having a swollen face that was definitely not for public consumption for several days, I really didn’t feel well enough to go anywhere anyway. Possibly part of this was tiredness, sleep still being painful and broken. I dozed during the day and the nights weren’t much different.

On the Tuesday, the swelling was mostly down and it was the first day that I didn’t nap during the day. I still had a broken night though, and was pretty tired and not feeling really well by the time I saw Dr Atlas on Wednesday morning for my post-op check-up.

Taste disturbances

Most of my experiences were just par for the course, and the only really disturbing thing amongst it all was the metallic taste I’d experienced in my mouth ever since the surgery. “Taste disturbances” are a known possible side-effect that I had been forewarned about.

Andy had been coming over every night to cook for me. He made some delicious meals! But some foods and drinks now tasted bland and others tasted dreadful. My big concern, however, was that the metallic taste might be permanent: it sometimes is. I was especially worried when I tried a sip of a nice red wine and it tasted absolutely awful.

Two of the great pleasures in my life are food and wine, and this had the potential to become a tragedy! Still — even if my taste was messed up forever, I never for a moment considered the surgery might have been a mistake. If I can, in the future, hear well enough to communicate easily with people, then that is, and always has been, the most important thing.

The post-surgery check-up

My parents took me to Dr Atlas’s rooms and I was glad to have them with me as I, of course, couldn’t hear a word Dr Atlas said. First, he sat me in his special chair — the one that looks vaguely like a dentist’s chair. He asked me “What’s been happening?” and I briefly filled him in. He positioned his face quite close to mine, asked me to focus on the bridge of his nose, and keep doing so while he turned my head from side to side. From this exercise, he concluded that my balance was good.

Then he took off the strips still covering my wounds, and looked in my ears. He said everything was absolutely normal and he was pleased.

I asked him about returning to work, and said I’d told my work I’d be returning the following day, a week from the day of the surgery. He shook his head and said, “No. Next week.” So that one was taken out of my hands — I’d been wondering how I’d cope when I was feeling ill just from being up and about for a couple of hours.

He said the staples (staples? First I’d heard of staples!) needed to come out on either Friday, Saturday or Monday. Thinking the earlier the better in terms of my own comfort, I asked Andy to book me in at my GP for that purpose on Friday. That will be a relief…

But best of all, Dr Atlas assured me that my “taste disturbances” would not be permanent. He said they’d likely go within 6-8 weeks. This was great news! I had been very afraid it would be permanent. 6-8 weeks of food and drink tasting icky was manageable, and might even help me to lose some weight without even trying! I say without trying, because — due to knowing that both food and wine won’t taste as they should — I currently have little desire for food and none at all for wine.

I was dismayed that the doctor visit took so much out of me but I slept for a couple of hours after I was finally at home again. Everyone seemed intrigued with my staples, and Andy pretended he was looking behind my ears for bolts. Well, after all, I am technically a cyborg now:

cyborg

a person whose physiological functioning is aided by or dependent upon a mechanical or electronic device.

Today, the final day of my first week as a cyborg, I took it pretty easy, knowing that I had to head over to my parents’ place tonight for my son’s birthday celebrations. By the time they were over, I was pretty tired and drained and desperate to get home again, to bed. But tonight is my last night with the staples and I am hoping that as of tomorrow night, I’ll start getting a better night’s sleep without the tightness of my scalp to bother me. I might even be able to sleep on my side again — who knows?

To sum it up

It’s been a grim-ish week but by no means hellish. I did underestimate how much the surgery would take out of me. It was a major operation that upset my body quite a lot — and heaven knows I’m pretty unfit, too. It took me a while to accept the limitations my body was putting on me but I gradually understood I needed to take things easier.

In all, despite the pain (now almost gone except for the tightness and discomfort of the staples) and the headaches I’ve also been getting, and the inconvenience of people having to write things for me if I am to understand what they say, it has been a very positive experience and I have never for a moment lost sight of the ultimate goal.

Thanks to Felicity, I came across this video clip of Michael Chorost, who explains cochlear implants very simply and particularly well:

http://www.exploratorium.edu/listen/lg_michael_video_sub.php