In this interview, Mary Jo discusses her experience with assistive technology like a cochlear impact and electronic captioning. She describes her journey and how sudden hearing loss has influenced her as an individual, her relationships and her outlook on life. She leaves us with a powerful message about the importance of advocating for ourselves and others.
I woke up one morning and it sounded like really loud noise I my head, it was really disorienting. I got up and I was running the sink in the bathroom, and it sounded so loud to me, like unbelievability loud. Then I realized I think I need to see somebody about this – to make a long story short immediately, the person I went to see said Well you have had a hearing loss and it's not reversable, like you have lost your hearing. I was kind of shocked by that, that she could tell all that, she looked into my ears but there was nothing to be seen, there was no infection - I wasn’t sick I had to go and have it verified, I had a bunch of tests and then I had what was called a sudden sensorineural hearing loss. Then it was just getting used to suddenly having 24 hours tetanus in one ear, I thought that was a big deal because you don’t know where sound is coming from, we are so bilateral, without two ears you can't pinpoint sound.
That went on for quite a number of years and then one day I was in a café and thought I heard machines doing something weird like making a high pitched nose, I mentioned it to the other people I was with and they said, “I don’t hear anything” and as soon as I went outside, I realized it was all in my head. I was concerned that it was the same thing happening again, this time I went pretty much directly to the ER – They confirmed – well by then I had lost my hearing – being suddenly deaf, completely deaf was diffidently an experience I imagined would never happen to me. Initially I couldn’t do anything, I felt very reliant suddenly on other people to do things for me like make a phone call for me that I couldn’t do for myself, so have I adjusted very well? When I look back on it, I think I really did but I didn’t grieve the loss of my hearing and I think that came up later on, there would be sudden moments where I was just a mess because I would be with other people, and I couldn’t understand what was being said and felt completely left out, I'd go and have my cry someplace and then I'd come back and then face whatever I was dealing with again.
In terms of coping, I think one of the things I have learned is that I've had to speak up for myself much more than I have ever had to do in the past, partly because it was a sudden hearing loss, and I think because of that I feel like I can be more outspoken because I don’t have this identify that has been developing for years and years about being a deaf person, I think there are a lot of positives believe it or not. I think that just having a disability is a positive thing because it changes my perspective on myself, it makes me realize that I am in vulnerable to anything as anybody else. I have met people that I would never would have met, and I had something in common with them, and I will approach them, and they will approach me if they see that I have a cochlear implant. And with little kids, I really appreciate the people, the interactions, and the connection I have had with others because of this.
I have realized how quickly things have changed. I mean with no warning at all, and I read a lot about appreciation and addressing appreciation is a healing tool. I am so privileged to have good doctors and good audiologists to work with and to have the financial means to get what I need. I would hope the other person who was the friend of, or sister of , or mother of, or whatever of somebody was bearing something could maintain that sense of curiosity and not go down that fear lane and I think there is more possibility for growth and healing if you are more curious and open then if you are shut down for fear, but looking back on it I have gained so much that I never would of gotten without that.