On May 22, 2020, I finally got my cochlear implant activated. This blog is my journey and experience with the cochlear implant.
The day they activated my implant was not what other people thought was going to happen. I had been following a Facebook group of people that were planning or already had the CI. The feedback was consistent that the sound would not be typical, and most described the sounds as robotic. I did not want to get my hopes up high and knew that the CI was going to be a challenge. However, friends and family had anticipated I would suddenly be able to hear and identify the world of sounds, including speech. False – wrong – it did not happen.
I sat in the audiologist’s office with three people face to face and one specialist remotely connected via the computer. So that means four people were there to help map and activate my CI. I think everyone but me was excited about the whole ordeal. I didn’t want to get too ambitious until after I had a full understanding of what I was going to happen.
The time finally arrived, they decided it was time to activate the device. What did I hear? Good question. I hear a lot of static, sequels, and muffled sounds. Yes, this is normal, and they tried hard to prepare me for what I was about to hear. I was confused and unsure of what I was supposed to be hearing. Specific letter sounds such as sh, s, and ch sounded like whistles. They assured me that this was normal. I do not deny I hated the sounds; I was taken aback that it was just a bunch of noise.
One audiologist began talking to me and told me to focus on the sound as she talks than when she stops talking. I started to understand that when they talk, I hear more static. After a while, it became apparent that their voices were robotic. I hated how it sounded and started to feel frustrated and perhaps disappointed. All I could think, “Is this it?” Will I hear robotic sounds for the rest of my life? They assured me to remember what others had said when they first got activated. It will sound robotic until my brain adjusts and identifies specific sounds. It was loud and overbearing. I kept thinking I don’t know if I want that much sound and that loud.
As of today, it will be four days since they activated the processor. It still sounds robotic, and at times I hear what the noise is. It will take several months for my brain to adjust. It is highly recommended that I keep the device on from the time I wake up until bedtime. The more I wear it, the more I will tolerate it. I did turn it down. I figured it was the only way for me to endure the noise. Even with it down, it is so loud I am unable to tell if my right hearing is working or not. I decided only to wear the right hearing aid when I need it. It is most likely I will need to replace it. It is past the duration of its life span and probably not working as well as it should be.
This will be a long journey. I did listen to some music while camping and was able to identify half of the songs. There a few times, I was not able to hear the song even knowing what the song was. I am finding that the implant helps me understand what is being said while lip reading. Without any hearing assistant, I was struggling to understand what was said. I even understood the girl at the Animal Shelter yesterday (mainly focused on lip reading).
My conclusion on the cochlear implant depends on who you are and why you are reading this post. If you are a friend or spouse of someone that recently got the cochlear implant, please know that this is hard. If you talk to others, they will say the same thing that the first three months are tough and challenging. I believe we all experience the same frustration; however, the reason behind the frustration may be different for each person. If someone got the CI, never hear sounds before may feel lost and confused. Envision never seeing color, and suddenly it is there? You have no idea what you are seeing. The same goes for sound. I had some hearing in my left ear, and at some point, it was my dominant ear until I lost the majority of my hearing. Even hearing aids did not help. So I understand from both perspectives those that never heard sounds and those that were familiar with what hearing should sound like. There are sounds I have never heard and other sounds I am familiar with. If a person had some hearing before the CI, it is frustrating there is no resemblance to the sounds. It is static and robotic, which is frustrating.
If you are thinking about getting the Cochlear Implant, I highly recommend you talk to your audiologist. Talk to the surgeon before making a final decision. How determined are you to overcome a huge challenge? Are you willing to stick through with the training and noise? It is not an easy decision. It took me over ten years to finally make the decision. Do I regret it? I did on the day of activation, but as time goes by, I remind myself daily robotic is better than nothing. If I can understand some speech, it is better than not understanding speech at all. The good news is others have stated in time the sound will change. I will adapt, and it will become the new “normal” where I will begin to understand the CI sounds. This brings hope, especially for those in my stage with the CI and gives you something to look forward to.
I believe getting the Cochlear Implant is a personal decision. No one can answer this question for you. Whether you are a parent with a child that is hard of hearing or deaf, this decision is still personal. Parents should become familiar with those that grew up struggling and how being Hard of Hearing or Deaf impacts lives. Some of us adapt well to being hard of hearing or deaf. Even those that adapt still struggle. Why scuffle when you can get the extra help?
I would not recommend pushing or pressuring someone to get the CI. I encourage discussions and exploration, perhaps draw up a list of pros and cons of getting the CI. For me, my reason for getting it was due to my previous work experience. I am so tired of people treating me like I am mentally impaired, not capable, smart enough, a burden, challenging to work with due to my hearing impairment. I am ambitious, talented, and very skilled, and I feel like my life is wasting away because those without a disability think I am not as good as those with their hearing. The constant struggles get old, and it starts to take its toll on your confidence and self-esteem. It also affects how you see the world and develop trust issues. Unfortunately, there are not enough sympathetic or supportive people in the workforce. I will still struggle even with the CI, but the point is I will have more power for myself to overcome some barriers I have been struggling with.
If you do not work or you work for yourself, and you are happy being Hard of Hearing or Deaf, that is ok. If it works for you, that is fine. If you are like me trying to live in the hearing world and struggling, you may want to look into options. If you are not ready for the CI, that is ok. I went back and forth for ten years, whether or not to get the CI. I did find that talking to others that have gotten the CI helped me gain the confidence to consider getting the implant.
If you just got your implant and recovering from the surgery, I feel for you! My recovery was overwhelming and uncomfortable. I struggled with nausea for almost two weeks. I was frustrated; I was still off-balance two weeks later. Every day it got slightly better, but I was upset. I am a dance teacher, and balance is something I needed to do my job.
I will journal my progress with the implant and share some of my stories being hard of hearing. I hope that my journey and words help you relate, understand someone that has a hearing impairment, or gain some confidence to step up.