I am hearing again… sort of. Let me explain- I heard the beeps at activation. I am still deaf when I wake up and go to bed but now I control my deafness and can wear my CI when I want. I don’t have hearing like I did with the CI but I am open to this adjustment and teaching myself to hear again (more like a different way.) It’s going to be a long slow process…

“Patience Jess, it’s not about the destination but the experiences along the way”

Reflecting back on the days that lead up to activation-

I was a wreck. I mean excited but scared…. I mean the hard part of doing surgery was over but …“What if this doesn’t work? Maybe this is just how it is and I’m supposed to be deaf? I know if it doesn’t we could always try for the ABI (Auditory Brainstem Implant), but would that work?”…This is all I could think of.

Activation Day-

When I heard the beeps (this is how we were testing the level of loudness) I because a giddy mess! “I heard a beep!!” when Dr Z switched it to picking up surrounding sounds … I heard my parents say I love you. If my tear ducts worked, I would have filled the room up with tears. It was bittersweet. To be in 6months of silence and the thought of hearing my parents becoming a bleak hope, I could feel my emotions just pour over. It was truly a magical moment.

Currently-

Everyday is a struggle yet milestones are made. I kept my wristband from surgery in April and proudly posted it on my bedroom mirror with quotes that inspire me… as a reminder this is how far I’ve come this year and to keep my eye on my goals in life. I am keeping a daily sound journal to mark small achievements I have made and new discoveries with the CI.

My medical journey is far from over…

• I am still going to University of Michigan often for tune-ups with the CI. I never want to take it off… maybe trying to catch up for lost time. But any sound is good with teaching myself to hear in this new form.

• More tumors to monitor and more surgeries to come… hopefully no surgeries for a few months… my body needs time to recover a bit more from this year. My body scans for monitoring and looking for new tumors with the MRI’s is coming up… keep you all posted.

• My balance is still really off (from NF2 in general it is.) I am looking into and trying new forms of therapy and hopefully I can rehab this and see some improvements in the next year. (Until then my friends/and family have gotten used to me clinging to them all to steady my balance.)

Life goes on with all of this… a never ending journey. Keep you all posted on what comes next!

Peace, Love, and Rock on!

Jess