Have you ever wondered what it is like to live with a hearing loss? What about if you woke up one day and could no longer hear? Have you ever wondered what it’s like to wear a cochlear implant?
Well, we’ve got some of those answers for you, at least from the perspective of one young lady who lived her whole life with a hearing loss, experienced a devastating Sudden Sensorineural Hearing Loss that left her suddenly deaf, and how she bounded back into normal life when she received a cochlear implant.
Laura, a 29-year old who loves to travel and bake, began her blog The Invisible Disability and Me in 2014 after she was diagnosed with a Sudden Sensorineural Hearing Loss (SSHL) and found that there was nowhere on the internet to turn for advice and support. Now, she blogs about her experiences with a cochlear implant and to raise awareness for SSHL.
Hearing loss can be an invisible disability, meaning it is not immediately apparent just by looking at the person that the hearing loss exists. This can cause some additional challenges. Not many people understand hearing loss and even fewer people know how to interact with someone who has a hearing loss.
We asked Laura some of the tough questions about her experiences with hearing loss both before her diagnosis of Sudden Sensorineural Hearing Loss, and after. And how she is doing now with her cochlear implant. Be sure to check it out:
How did your sudden hearing loss effect you differently than the hearing loss you were born with?
Having been born with significant hearing loss and wearing hearing aids since the age of 2, I adapted well to the hearing loss with regular speech therapy sessions when I was young and to be honest, I never really noticed it growing up (aside from the hearing aids and the hospital appointments). Children are able to adapt remarkably easily and it becomes part of who you are rather than something you learn to cope with over time.
The sudden hearing loss I experienced some 27 years later was completely different. I didn’t know how to adapt and change with the hearing loss and being that it was a profound loss, there was little I could do in terms of devices etc. Having grown up with hearing loss, I was able to lip-read well and that is something that stood me in good stead throughout the hearing loss. If I hadn’t of been able to lip-read it would have been a much, much harder experience.
What treatment options were given after your diagnosis, if any?
Once I had been (eventually) diagnosed with Sudden Sensorineural Hearing Loss, I was put on a hyper-intensive course of steroids (prednisolone) for a period of 12 days which meant I had to take a whopping 70 tablets during this period. The ENT consultant wasn’t overly hopeful that this would work as it had been a week since the onset of my symptoms, hence the “hyper-intensive” course.
When these steroids unfortunately didn’t work, I was given an MRI and CAT scan due to the sudden nature of the dramatic decrease in hearing and in order to rule out brain trauma or even a tumor. Thankfully these came back clear but it meant that the cause of the hearing loss could not be easily found.
Treatment for Sudden Sensorineural Hearing Loss is sadly very limited – steroids are the only current treatment (that I know of) that could assist and even this hasn’t been fully proven to work.
I was given more powerful hearing aids by the hospital but these didn’t help me as my hearing loss was so profound.
Would you have done anything differently when you first noticed your hearing loss?
In hindsight, I would have gone straight to my ENT consultant instead of my GP and then the local A&E unit. Perhaps then, with such a short onset of symptoms, the steroids might have worked. Shoulda, Woulda, Coulda and all that.
What was the reaction of your friends and family when you experienced the hearing loss?
My immediate family and friends were incredibly supportive but also extremely upset with the situation. Some did not really understand the effects it would have on our relationship, for example, I was unable to communicate on the telephone and struggled to hear anyone in group situations.
It meant that I withdrew from a lot of people and situations that I felt I wouldn’t be able to cope in and I leant heavily on my then fiancé and mother for help in situations I was uncomfortable with.
I don’t think people realised the full consequences the hearing loss had on my life until I started my blog and chronicled my journey through hearing loss and all the things that had been effected. Hearing loss can be all encompassing.
What were your initial thoughts about getting a cochlear implant?
When it was first mentioned, when I had just been given the SSHL diagnosis, I didn’t really understand what a Cochlear Implant was. I admit my first thought was of vanity, thinking that this big clunky thing would be on my head visible for everyone to see. My second thought was of the operation, I had never had an operation prior to getting my CI and I was a bit scared of the thought of having one on my head!
But once I had time to process the diagnosis and do some research into CI’s myself (and I did A LOT of research) I came around to the idea. I still wasn’t sure if it was for me, and if it would give me any benefit but at that stage I literally had nothing to lose as I had barely any hearing at all.
What is it like to hear with a cochlear implant? For example, do people’s voices sound like their voices? Does a doorbell sound like a doorbell etc.?
For me personally, it really doesn’t sound any different from wearing hearing aids. I think that because I had worn hearing aids my whole life I’ve never really experienced “normal hearing” so hearing through a different device isn’t that odd for me. It sounds “normal” to me.
I’ve been told that because there was a relatively short period between the hearing loss and getting the implant (11 months), my brain remembered the way sounds should be, or how I had heard them before and bridged the gaps itself. It’s a remarkable thing, your brain, although I know no two people have the same experience with a CI and maybe I’m just one of the lucky ones.
What is the most difficult thing of wearing a cochlear implant, if any?
This is going to sound so trivial compared to living with hearing loss on a day to day basis but forgetting your batteries! I am terrible at remembering to bring spare disposable batteries with me, especially if I have just used the last in the packet. As the batteries only last approximately 3 days I’m often caught short and am rendered completely deaf once they die.
Another bugbear of mine…getting the implant caught on metal. I had one rather embarrassing experience whilst I was travelling home from work on the bus. I was standing in the middle section (where the prams/wheelchairs space is) playing on my phone and I leant back against the metal bars and got my implant caught! I shouted a very rude word when I realised what had happened and turned around to find not only was everyone staring at me, but my implant was hanging off the metal bar! I got off at the next stop and walked home.
What is the best thing about wearing a cochlear implant?
Being able to interact with my family and friends again, being able to talk on the telephone and most of all, finally feeling like myself again. I felt for a long time that I had lost a lot of my personality and especially my independence, so it is great to feel like I am back, stronger than ever.
We’d like to thank Laura for being a part of Everyday Hearing. If you’d like to follow along with her journey with hearing loss and wearing a cochlear implant, be sure to follow her at:
Facebook: The Invisible Disability And Me