My Hearing Loss Story (Condensed Version)

The medical world prefers short and sweet. It might go a little something like this:

My hearing loss began on the left side at the age of 10 with the genetic condition called Otosclerosis. I started to wear one hearing aid at the age of 12 with a severe conductive hearing loss, then had corrective surgery called a “stapedectomy” at the age of 21 which almost completely corrected my hearing on the left side. My left ear saw a new decline around the age of 25, and my right ear started to become affected around the age of 26/27.

I started to wear two hearing aids at the age of 28 for a new “mixed” hearing loss (sensorineural & conductive). Shortly after turning 35 I went completely deaf in the left ear and maintaining a severe-to-profound hearing loss in my right with 50-60% speech comprehension. This is where I am today. I depend solely on my right ear for hearing, and I have lost the ability to hear high frequencies completely. If all goes well, I am in line for a cochlear implant.

Hearing loss and happiness.

Recently I began reading a book written about hearing loss. I barely made it through a few pages before putting it down… between the lines, I could read that the author was sad.

I don’t remember being that sad as a child… however I do recall the feeling of isolation and mentally working towards acceptance.

It is only recently that I really began reflecting on the isolation of hearing loss and the Hard of Hearing (HoH)… it has been hard to live up to the hearing world’s standards as an HoH, and the quality of life truly depends on your support system. Hearing aids are what glasses were long, long ago. It is here I began to reflect on my past.

The start of my hearing loss story:

I was 10 when my mother first noticed that I wasn’t answering when she called my name. Was this typical preteen angst or did the genetic condition my grandfather had make it into her family?

After my first test, I was diagnosed with Otosclerosis – a hereditary condition. This genetic condition somehow bypassed my mom, as well as most of my family. From my maternal grandfather’s lineage, there is a total of 40 children, grandchildren and great-grandchildren. Of this cluster, there are only two of us (my aunt and myself) that seemed to have won this genetic lottery.

I had the full support I needed growing up.

It turns out I was blessed from the beginning:

• My hearing loss was discovered early on.
• I truly had a family support system.
• Teachers were receptive and understanding.
• Sat where I needed in class.
• I had government support of APSEA that came in and took me out of class to be sure I had everything I needed to succeed.

With this, my grade school marks flourished.

This wouldn’t have come without the acceptance and the support I had early on.

The “gift” of knowledge.

I recognize now that I was truly blessed to have met a few people that had the same condition and helped me understand that Otosclerosis and was normal to have at such a young age.

I was in grade 6 and needed to sit at a certain spot in the classroom. When we were moving desks, I vocalized this to my group of four that I required a certain spot with the seating. One boy said, “Oh, my younger brother has the same thing”.

It turns out the boy’s mom also had Otosclerosis in both ears and wore two hearing aids. She was a young, beautiful, talented woman who was “with it”. She was a working mom, educated, fashionable, and didn’t have a strand of silver hair. She spoke to my mom and gave her advice for the journey I was about to embark on. I found out much later that she checked in with my mom often and gave her advice when needed. 

This in combination with knowing my aunt (in a different province) and these two (somewhat) strangers had the same condition – I was given this gift of knowledge. I was not alone, and I was not the only one that wasn’t “old” with this hearing loss.

Then there was the first hearing aid.

It was hard at first – the tinkle of water was louder than ever. SO were all the soft sounds that were eliminated from my life. But you know what – it helped greatly every step of the way. The name calling happened of course on occasion, but they were transparently naive. With the help of long hair, many people did not even know I had one!

When I was fitted with the hearing aid I was to have before going off to college… I cried. It was GINORMOUS. Think of that in-the-ear tech that your grandpa has and magnify it by 10. There was no way you could miss this thing. (Vanity at it’s best – I was a teenage girl! Come on!). They sent that thing right back and we stuffed as much data as we could in a smaller aid.

Striving for perfection with surgery.

Striving to put an end to this process and to be “normal” again led me to seek out the only surgery available. At the age of 21, I had surgery on my left ear (Stapedectomy) with the best doctor in the country, which gave me improved hearing on my left side.

A few years later, my hearing began to decline again, but this time I was able to get a tiny in-the-ear hearing aid that was almost invisible.

At the age of 26/27, I started another rapid hearing loss decline that began in both the right and left ear, attacking the nerve endings (little hairs) in the cochlea. There is no rhyme or reason for this, except I was told that I have a “rare and aggressive” form of Otosclerosis…

Then Deafness showed it’s Ugly Head.

August 2017, and shortly after losing my job – abnormal symptoms began in my left ear. They included ringing noises when I walk, swishing… clusters of five days of magnified tinnitus that sounded like transport trucks coming in the side of the head, vertigo, spinning…  and a rapid decline in my hearing. I was diagnosed with “aggressive Otosclerosis”, but it could be something mixed? I experiencing symptoms that were so similar to Meniere’s disease?

These major drops in hearing happened several times until March 2018, when my hearing in my left ear decided to take a permanent sabbatical from it’s assigned task of hearing. The hearing in my right ear was declining as well, however, it is only slight and showed fewer side effects. After 7-8 months of chaos, there was peace, silence and a slow acceptance that I had gone deaf on one side. Of my known family tree (going way, way back) I am the first to hit this new milestone.

What I have learned about Otosclerosis is that it is incredibly rare to reach such a stage, but it does happen. The inner and middle ear were changing in texture and density in a way an expert should explain, and this aggressive change of condition was making its way to the cochlea where it begins to reach in this area as well. Eventually, this change in density would fully take over the cochlea, not even leaving room for a cochlear implant to be inserted. How fast would this happen? Who knows… The race is on!

2017 marked the beginning of a new journey (emotions, knowledge, fear, perspective, and transformation), plus I continue my new journey with new insights.

Being Hard Of Hearing or being a part of the deaf spectrum are invisible challenges, and very rarely understood. The least I can do is share what I’ve learned.