My residual hearing

On Christmas Eve, 13 days post-surgery, while embracing my sister in greeting she said in a high voice "Hiii-eee" (unsuspecting) into my right implanted ear that is not yet activated. I suddenly lurched backwards, covering my ear in astonishment, as if to prevent it from being disturbed during hibernation. I remarked with surprise, "I heard that!" It is not her familiar voice that I knew through my hearing aid. The sound was a less-than-pleasant inaudible shrill. I asked her to repeat in my ear what she said but because she was aware I was in the 'healing' phase, she hesitated to bring her voice back to the high treble. I did hear her a second time.

Since then, I have been aware that I can hear glasses tinkling as well as silverware dropping down on plates, I even heard an echo of an empty plastic water bottle that fell over onto a hollow surface. My daughters have laughed into my ear and I was able to pick up parts of their gleeful outburst. My daughter, who plays piano, tapped forcefully across the keyboard and as I stood near the strings, I was able to hear only the highest F and G with the implanted (and unactivated) ear. It is an inaudible high pitch, but by nature I am moved to curiosity when I hear anything with or without support. Interesting to me is that without any hearing devices, I am hearing better on the implanted side. Using the hairdryer that I've used for years now sounds noisier to me. I have to remind myself that the implant has not yet been activated, if only one frequency at a time because it seems that way. It is as if the surgeon unglued a couple of haircells in the cochlea and they are dancing again to the long-lost frequency. I will inquire about this curious phenomenon.

All this to say my CI friend Laurie reminds me with a smile that I may "still have residual hearing left but it isn't worth much! Just wait until activation day."

Within the last twelve hours I have been able to locate the implanted computer chip embedded on the skull. The swelling has now gone down. I find myself in a mild sense of awe as I stroke this foreign object under the skin. I can now anticipate where the magnetic transmitter will attach to my head.

It is 17 days since the surgery. The dizziness has abated. The tinititus comes and goes, but it has been a welcome sound, fitting for this Christmas season. I call it the Christmas Bells. I am feeling great and will attempt a walk today. Time does heal, that is for sure.

Traveling today..

Today is the start of our 6 hour travel to Moms. I am feeling alright today. I have opted not to drive as I am experiencing some dizzyness and fatigue. I still have some swelling on the side of the head. I awoke this morning with my implanted side on the pillow and realized I was no longer uncomfortable in that sleeping position. I am feeling a bit more aware and on the upward in spirits. I am looking forward to the restful ride down. It looks like it will be a beautiful day. If all goes well we will swing by an open house that my sister and brother-in-law are having.

Last night (Saturday) was my first outing besides the post-operation follow up on Friday. Mark treated Mom and I to dinner and after some thinking to where I should sit using the benefit of my hearing aid (which I am wearing on the opposite ear) and lighting, I was fairly comfortable and we had a lovely time.

No more bandage, no more tape

Ive had a couple of miserable days. The medication I was taking was making me spacey and was giving me nightmarish sleep. My neck was stiff. My body was worn out. This morning I went to the doctor for my post-surgery follow-up. He removed the surgical tape with ease and told me it looked great. I was not able to find the implanted device and he located it for me. My head is still swollen and he said I would be able to feel it once I was healed. Then it was on to the Audiologist. He showed me on the computer that my array is 100% perfect. Activation date is Monday, January 16th, 2006 at 9 in the morning.

As I write, I am feeling much better. I hope the misery days are behind me. I'm thrilled with the looks of the incision. I am surprised how quickly it has healed. Quite amazing, it has been 4 days since I was in the operating room. All we can see are the two ends of the incision.

The headband came off Tuesday

The new headband I got at the hospital remained on my head overnight. It is called a pressure bandage, to keep pressure on the wound to stop the bleeding. By Tuesday afternoon it had given me a headache. The bandage had to come off!

In slow anticipation I began the unveiling of the bandage with my mom as witness. To my surprise she was eager with picture taking - taking step by step photos. At the end of it all we found an intact ear with an incision behind it.

Implant Day..

I am happy and well and at home. I was at St. Pauls from 11 to 8pm today. I was in the operating room shortly after one and I was "down under" (no pun intended) at 1:20 pm. Surgery was over by 3:45. While unconscious, the audiologist had checked the CI and found it in place perfectly. I have been groggy and alert off and on. Once home my dear mom made the most delicious prisoner's soup. Half way through the bowl I fell asleep.I awoke again an half hour later and finished it all up. I can be dopey one moment and alert the next.

Thank you to ALL of my family AND friends/co-workers, old and new, for your kind words of wisdom and encouragment in your email, phone calls, comments and prayers. Thank you to a fellow CI recipient, Shirley, for dropping in on your way to your mapping and giving me ease and encouragement just when I was getting anxious. Thank you Lauren, Kirsti and Alan for the lovely bouquet of flowers that were awaiting me when I got home. Thank you Bruce and Suzette for the very generous gift to which I place these photo memories. Thank you Mom for your beautiful love and care. Thank you Mark for the lovely gift, genuine companionship and love. I love you all. I am grateful to the kind staff, audiologist and surgeon at St. Pauls Hospital for their great care.

I made a couple of attempts to add pictures to this blog to reassure you I am fine and to show off my new hairdo. The computer is freezing, or perhaps it is my brain that is freezing. I will try again tomorrow. For now, I will attempt sleep with the pressure bandage that is wrapped around my head.

The week before the implant

I have been attentive to what I hear with my hearing aids. I have also been down with a cold virus and that may contribute to a further decrease in sound. I attended my daughters Christmas Band concert at their high school and could recall in the past the ability to hear bell sounds. Christmas music is familar to me, as I spent year after year looking forward to hearing the joy in the music. I have no clarity in my hearing now. The concert was a humble experience for me.I delighted in my children being there - they are playing music on the same night for the first time - as the youngest has now entered high school. My daughters were playing the Bass Clarinet and Alto Sax and I noticed that I didnt tap my feet to the beat.. I dont know where the beat is anymore. My interest in music has decreased for a few years and I really miss the joy I feel from the music. Often, in the car, I turn the radio on only to turn it off quickly as it sounds more like annoying noise - little makes sense. I have a few songs on dvd that I will play again and again if only to work at my listening skills, but I dont feel the intensity in the beat or tune. They are from Bad English (John Waite), and Bon Jovi, two of my favorites that I played passionately as early as five years ago.

My audiologist at the hospital had a look at five or six audiograms that I'd pulled out for him. My earliest one is at three years of age and he told me this week that he is optimistic for me - I would likely do well with the implant. When I see him in the hospital I would like him to explain his response further. There have been changes over the years, I was quite unaware at the extent of it when I looked at them side by side this week. Once I am activated with the CI, I plan to share the before and after results of my audiogram on my blog.

Today my mom arrives with the intent that when she gets here, she says I am going to have a nap. Obviously she senses I am not sleeping well. Are my words not coming out clearly?

You will find my history in growing up with hearing loss in the Links column. Click on it and you are there. All week my feelings and I swam in a mix of excitement and anxiety. I feel flat today - I think it has been an emotional month and I am tired now. My CI surgery is at 1pm on Monday. I have been told not to eat or drink anything after midnight the night before. That is a toughie. I will be put under for the two hour surgery, and expect to awake in the middle of the afternoon. My friends who have the implant assure me it is all not a big deal. I hope they are right.

the emerging journey

The heart swells as this journey emerges. I need to play down my expectations of the implant. This week, as I get ready for surgery (9 days to go), I have been in a frenzy researching peoples experiences with the CI, particularily from prelingually deaf people like myself. Over the years I have always been curious about cochlear implantation and would seek out information from the recipients, but right now the nervous energy is raging inside me and I seek to suppress it through the encouraged and experienced eyes (or ears??) of the implanted and activated people.

The feedback I get has been amazing. I have joined a forum provided by http://www.cochlear.com/ (the company for which product I will be implanted. At present, BC will only implant from Cochlear.) The experiences shared in the forum have been far and wide, ranging from personal struggle, to success. The most encouraging thing to me is I have not sensed any sign of defeat. No one seems to regret having the CI. I am thankful for the ongoing advice and encouragement I get, ranging from family and friends, the professionals involved, to the recipients themselves. Another audiologist from my hometown in Portland, OR, who is now selling cochlear implants wrote to me upon hearing of my surgery date. She and I go 20+ years back, as we worked at the same oral school and because I know and trust her, her insight is vital to me. It is her kind but realistic words that ring in the back of my mind that bring me down to a reality check as I feel overwhelmed with excitement and expectations are running high..

She shares: …it is never as easy as others may paint and you have lots of work to do to make the most of this technology. I admire you for the decision you have made and support you in any way I can as you work toward success with the sound that is not like anything you have heard before. I wish for patience for you and a feeling of joy with even the smallest of steps.

Thoughts from my daughters...

My sister asked the question to my two girls: How do you feel about your mother getting the cochlear implant? This is their response, directed at me...

K (Age 13): Its going to be different. You’re not going to be able to hear for a month, (post surgery, recovery time before "switch-on") you’ll be hearing a lot of sounds you’ve probably never heard before, and it’s probably going to be frustrating and overwhelming for you. So, Lauren and I are going to have to help you out. I’m kind of nervous, but I’m also really excited for you. This is a big change and hopefully it will be for the best.

L (Age 16):I hope its going to be a lot easier for you. For instance, in the car, etc. Its going to be different and difficult for a while. But in the end, I hope its going to be worth it. It will be interesting to see what this new technology does and how it changes your perspective. I’ll be calling you the “Bionic Mom” or at least the bionic ear, now.

Counting down.. 11 days left

My new blog IS set up! It feels like a significant moment, one of many in recent days. 10 days ago I was approached by the director of the CI team asking if I would accept a CI surgical date for the coming weeks. My mind spun with anxiety: Do I want it NOW? Will it be worth it? After a year or more struggling with my new digital hearing aids, I decided it was time to start the year 2006 with something different. The CI was the best possible answer for me. I had nothing to lose and everything to gain. I am in hesitant anticipation because as the cochlea is invaded by the surgical procedure, I cannot change my mind and "go back" to my hearing aid. I have nothing to fall back on with regards to my residual hearing. There is hardly any hearing left, but I value what I do hear. I grew up passionate about sound. My parents, steadfast at getting the best hearing aid for me, persisted at every opportunity for me to hear sound and enjoy it. There are endless stories to share in this experience, past, and present. The term, "hearing aid" has been a part of my daily language for all of my life, and now I add the terms, "CI", "cochlear implant", or "my processor" to my vocabulary. A lot like when you bring a computer into your home for the very first time, all of a sudden you are aware of computer jargon: a "mouse" in your home, a "tower", "desktop" or a "URL".

A New Reality

I am about to have a new reality. After a lifetime living with a sensorineural bilateral profound hearing loss, I will soon allow science and technology to take over. On Dec 12th, I will put my life in the hands of a doctor who will insert a computer chip with a cable running into the part of my inner ear, specifically the cochlea. It is the part of the ear that looks like a snail. It is called a cochlear implant, aka "CI."