I had the pleasure of reaping one of the benefits of being a Mentor for Advanced Bionics last week. I spent a few hours in Bloomington, IN with Lindsay Fletcher, Au.D., CCC-A, Clinical Specialist with AB for my region, talking with students and audiologists in the Doctor of Audiology program about cochlear implant recipient perspectives. The IU Bloomington campus will soon be doing mappings for the IU/Riley CI program. Surgeries will still be done in Indianapolis, but mappings can be done in Bloomington. That will be so convenient for people that go through their CI program and live south of Indy.
They were a great group! Very attentive and they asked excellent questions about my hearing loss journey. (Wishing now I would have turned around and snapped a group selfie to share!)
Our discussion reminded me of some things important things.
One of the class asked me what was the best and worst thing an audiologist ever told me. I had to think for a few seconds about the best but the worst came to mind quickly. It was when I wore hearing aids and felt I was struggling to hear well with them. I made several appointments outside of my routine follow-up appointments to get adjustments made because I wasn’t satisfied with how I was hearing. The phrase I heard over and over again was “you’re doing well”. I didn’t think I was but if my audiologist, who was far better educated that I was and had far more experience with hearing loss and hearing aids thought I was doing well, I must be doing well – right? Of course, I wasn’t doing well, and in fact, my word recognition was slipping away from me. I was clearly a CI candidate long before I pursued candidacy.
The best thing an audiologist ever told me was very early after the activation of my first implant. The advice was to never forget that I am on a lifelong journey now and the success of that journey was all on me. My brain will continue to adjust and adapt and I have an active role to play to ensure I continue to pursue hearing as good as I possibly can. I know some people think that once you have CI surgery you are “healed” and your hearing is restored, but nothing could be farther than the truth. CI surgery is sort of gaming the hearing process – OK, little coclear hair cells, if you don’t want to do your job I’ll just find a way to work around you and still get the job done! The amount of energy and effort I’m willing to put into being an active participant in my hearing journey, the better that journey will be.
Another thing that I was reminded of was when I was asked what I wish I had following surgery that I didn’t. The answer is I wish I had been given a written, detailed rehab plan. It is fairly common for kids to have this type of plan, but not so for adults. I already had a good idea about things I was going to do, but humans all respond better when we are given an outline to follow – maybe even a listening rehab prescription. In my mind, looking backward, it would have looked something like:
- Week 1 – progress through progressive volume programs 1-3; wear the CI without any other hearing assistive device in your other ear for at least 3-4 hours each day; spend at least 30 minutes each day using on the CI to complete word recognition exercises with AngelSound (a free program and app for listening rehab); spend 30 minutes each day listening to an audiobook or having someone read a book out loud to you as you follow along
- Week 2 – wear the CI without any other hearing assistive device for at least half the day; do these same exercises 45 minutes each day
My advice to the class was that, unless there was a professional or institutional reason not to provide a suggested rehab plan, consider creating a template that can be personalized for each of their CI patients.
The goal of the day was to share my experience with the audience so when I left there with these memories and thoughts, it made the day even more special. Love my life!