I’ve been writing this post over the past several days. While it’s hard to fully capture activation in words, I hope this will give you some insight into my experience.
Leading up to Friday, I reread my and my Mom’s reflections on her activation experience from 2001.
Everyone was in the room, all the kids, Mike, Molly the dog, Lori, Sarah; it was a party! When Sarah showed me the earpiece, I was a little disappointed. Having dark hair, I didn’t want a beige one; it would show too much. Sarah quickly decided we would reorder the darker model to blend with my hair. Sarah explained the entire process to the kids as she went through it. I couldn’t hear her words, but I could tell how focused they were on her. As usual, they asked lots of questions. Sarah tried her best to answer everything. Amazingly, they hooked up my device directly to the computer. We started slowly testing the processor and set a program by listening to the sound of faint beeps. Excited to hear them, I let the room know. The kids gave me thumbs up. It took awhile to go through the series and set the levels for the soft and loud thresholds for each electrode. The computer was measuring how much electrical stimulation I could take. Everyone waited patiently and I could tell they were still asking questions of Sarah and Lori. I’ve heard all the analogies; it will be like going from analog to digital—that’s Mike’s favorite. It’s as if you ‘re hearing FM radio waves instead of sound wave—the social worker shared that one with us. How about electoral impulses instead of sound waves? My brain would need to translate this new sound into meaningful words, sentences, stories, and emotions. There was nothing anybody could do to make it happen faster. My brain had to do the hard work. And the nerves would come back to life, so to speak. Cochlear implant technology is the first to restore a sense, and I knew I was in for a lot of relearning before this would be the case.
This past Friday, only Tim and I could attend. We preferred this given my medical clearance appointment where I would have my stitches removed was one hour before (and there was no need for additional participants there). Truly, before I even washed my hair post-surgery, it was time to activate my new technology.
Dr. Paula, my audiologist, called us back to her office, where we also met a representative from Advanced Bionics. Together, they began the process of activating the CI technology. Similarly to Mom, first we became familiar with the external processor, batteries, and headpiece and then we started the process of testing each of the 16 electrodes and setting their thresholds for the sound. I listened to a series of beeps as each electrode came to life. Then I let them know when I could hear the beep (soft) and when it was uncomfortable (loud). The beeps sounded more like instruments—low drums for some and higher woodwinds for others. As this was happening, I thought, “these are my new sounds, my new personal orchestra.” In technological harmony, these sixteen electrodes will learn to send signals direct to my auditory nerve, recreating every sound in my world for my brain. Amazing.
The moment of truth. Sarah turned on my processor for me to try and hear the room, and so she could test and set the software strategies. Sarah set the processor on the first program and no one knew what to say. I think for the first time over the entire process, my family was speechless. “Say something!” I’m not sure who talked first but it all sounded like Disney World. Everyone had a high silly voice. I couldn’t keep from laughing. The kids sounded like Wizard of OZ munchkins. Mike’s voice sounds like Goofy from Saturday morning cartoons. I asked Sarah if she could program his voice to sound more like Tom Cruise. The second program allowed the voices to come through more normal sounding. Still, I couldn’t here any words yet, it all sounded like my father-in-law’s piano music, notes ascending and descending the scales, instead of talk. Sarah assured me that this would eventually change and the musicality would turn to words. With both strategies in hand, our task was to go home and try them for a day. We would be back the next morning for my first “tune up.”
All participants in my activation session wore masks. At the beginning of the appointment, this was extremely challenging for me. During the electrode testing, I could hear none of the conversation or explanation. I relied on lip reading through clear masks and a transcription app on my phone for those who wore a solid panel mask. By the end of the electrode testing, we declared that my lip reading was stronger than the transcription app.
Solid panel masks proved to be the perfect tool for the next step of activation. Dr. Paula said, “are you ready to practice?” I was. She started to count behind her mask, “one, two, three, four, five, six.” And I heard her. Not just sounds. I heard a robotic voice saying numbers. Unreal. I looked at Tim. He said, “you can hear the words?!” And I heard him, through his mask.
Everyone sounded like the same menacing villain robot from a movie. At first, there was no difference between the female and male voices. As I started to describe this to the group, I could hear my own voice. I sounded like a robotic Kate but on delay by about .25 of a second. They tested me with all kinds of words and phrases. And I heard parts of them one after the other. The room was a mix of excitement, relief, wonder, joy. A few tissues needed. Many laughs and smiles. Like Mom had said, it felt like the end of loss, the beginning of gains.
There was so much to test and learn. Synching my compatible hearing aid. Configuring magnets and cords. Understanding the chargers and battery back-up. Connecting with Bluetooth to my phone. The more I listened, the more my brain differentiated each person’s voice. Dr. Paula was sounding more like a robot version of herself as she showed me how I to move through the progressive programs on my own over the next month. “Programming has come so far,” she explained. Mom had to go back the next day; I will head back to Jefferson on June 3rd.
I felt nervous opening the door to leave. I had only tested my new hearing in an acoustically perfect office with my team of cheerleaders. What would the world sound like? We said our goodbyes and made our way. Past the waiting room—voices! Into the elevator—conversations! Past the front desk attendant—he’s listening to music! Through the revolving door and onto Chestnut Street, Philadelphia.
(from a note I wrote to Mom’s surgeon after her activation)
All we wanted was for Mom to be happy. And she wasn’t happy. It made her sad to know she couldn’t talk to me on the phone while I was away at college. It made her sad to miss the guitar music my brother played. It made her sad to not hear the music that accompanied my sisters’ dancing. She felt out of place in a house full of noise, phone calls, comings and goings, questions, concerns, laughter, and tears. We just wanted her to be happy and feel like a full participant in our day-to-day lives. With your help, this wish has come true. Mom has never lived better. Not only has her hearing been restored but the quality of her life has improved. Mom has gained confidence and independence. Like in the Wizard of OZ, in the past year her life went from black and white to Technicolor. Thank you for adding the color.
Let’s call this one of my “Dorothy moments”. When I entered Jefferson that beautiful, sunny Friday morning, my Philadelphia was quiet, narrow. But not unusually so; this was my gray prairie. When I stepped onto the sidewalk that afternoon, Philadelphia was alive, in full technicolor. Cars passed by playing music. Trucks backed up beeping warnings. Groups of college students walked together, chatting. A man was on his cell phone at the intersection; he wasn’t talking to me but I could almost hear his words. I could practically hear the two ladies who sat one table over on the sidewalk. The city felt louder, brighter, lighter.
We pulled up to the house and Mom, Addie, and Reese ran out to greet us. “Hi Mommy!” in clear, high pitched, almost cartoon-like voices (the next generation of munchkins). And a big hug from Mom. We sat on the porch and shared all the details of our days, my stories from activation mixed with vignettes of the girls’ virtual field trips. Their adorable, robotic voices made me smile. And, while far from perfect, I enjoyed the clarity and sharpness of their voices. So different from when I left that morning.
Friday was a major milestone in my journey. There’s so much more to come—I’m only on progressive program #1! Looking forward to making gains and sharing more stories of color and light as I go.