Meningitis Made This Nurse Deaf, This Is Her Story

Meet Cassie Kenyon – this is her patient perspective story. She has an incredible story of how viral meningitis made her deaf and shares with us her journey through this to where she is today working in busy acute nursing positions.

The singing nurse

Cassie has been nursing since 2007. Starting as an EN in aged care see eventually transitioned into acute specialities including ICU and now works in a Cardiac Cath Lab. She was actually a cabaret singer in her younger days and was a backing vocalist with an Elvis impersonator once! A fun fact is that Cassie knows almost every single Elvis song there is! And there’s a LOT of Elvis songs! In 2001 Cassie was able to collaborate and perform a song for Muhammad Ali in 2001. She was even invited to perform at a couple of Richard Pratt’s star studded events at his home in Kew.

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Why was your nickname to “tooth fairy”?

When I was working in the dementia-specific ward, most of our patients could become fairly combative when it came to attending ADLs, particularly if you were trying to take their dentures out to clean them. Most RAFCs I have worked in, dentures were neglected most of the time, most likely because of this reason. When I was on a PM shift, once our patients were all sleeping, I would take everyone’s dentures out, clean them and place them in their denture cups with sterident soak overnight. I’d often get calls from staff early the next morning, asking me where the patients’ dentures were. After this I was labelled “The Tooth Fairy”,

 I, as many nurses, like to do as much as I can for patients, even if its simple things like giving them a good shave or putting some lippy on or cleaning their teeth. I know that the time constraints of nursing can prevent us from doing everything we want to do; I still drive home after some shifts feeling guilty that I couldn’t get back to help a patient with their teeth or hair. We can only do the best that we can.

A deadly toothache

In January 2014, I had this terrible toothache; turns out I had an impacted infected wisdom tooth. After a week of excruciating pain, I begged my dentist to just pull the tooth out, I didn’t care if they used anaesthetic or not, I just wanted it gone! They used a local, and thankfully pulled the tooth. I had to take a course of ABs to take care of the infection. A week or so later I wasn’t getting better; I had these terrible headaches, blurred vision, and light sensitivity, sore neck etc.

But I continued to take the ABs and pain relief and soldiered on. Until one day I collapsed. I ended up in ED where they did an LP and it was confirmed I had meningitis. I also had pneumonia (which they thought was Legionella) an infection in the lining of my heart and a clot in my lung. I was pretty sick! After a few weeks in hospital, I improved and everything was fine for a while. I continued to work and life returned to normal.

3 years later, I went to bed one night and woke up completely deaf in my right ear. At first, it was thought to be a possible acoustic neuroma but MRI/CTs proved that it wasn’t. I was fitted with bilateral hearing aids. My left ear had about 70% of hearing left at this stage. I managed fairly well with hearing aids, I was always able to lip-read because a childhood friend and I used to communicate silently so no one knew what we were saying.

This skill became very useful once I started wearing hearing aids. I continued being able to work, my colleagues were all aware of my hearing loss and they made sure to communicate with me face to face and clearly. I would always introduce myself to my patients with a disclaimer about my hearing loss.

I had no idea that meningitis could affect your hearing so naturally I never made the connection. It wasn’t until I was referred to an ENT at the Royal Victorian Eye and Ear Hospital that it was confirmed that the meningitis was the culprit for me losing my hearing. I was devastated.

How did you cope with this change?

June of 2019, just after I had completed my first rotation of my graduate year, I noticed that my hearing aids were becoming ineffective. The hearing in my left ear had deteriorated over night just like my right one had. I can still hear somewhat in my left but it’s about 10% now.

I was worried about the impact that this would have on my patients so I brought it to my graduate nurse coordinator’s attention. After a lengthy and very emotional meeting, it was decided that it was best for me not to continue my graduate year at this time. I was heartbroken. I thought my nursing career was over for good. After all that study, all that time… I knew nothing else but nursing.

I had poured my heart and soul into this profession and now it was gone, I couldn’t even sing anymore. The two things I loved most, I could no longer do. I was so defeated and done. My wonderful fiancé and children were incredibly supportive, but there was no way they were going to let me walk away from this without a fight. I was referred to an amazing ENT at The Royal Victorian Eye and Ear Hospital; he said that I was eligible for a cochlear implant. Many scans, tests, and appointments later I was implanted with my CI on January 10^th 2020.

I hated it at first, the world was so noisy. I couldn’t understand spoken words and everything and everyone sounded like a badly tuned radio, so much static and unbearable noise. After a few mapping sessions with my audiologist, things started to get better quite quickly. I could actually understand people and hear things that I haven’t been able to hear in a long time. Music was still unbearable at this stage.

By February 2020 I was able to go back and complete my graduate year with supports in place. I worked on an extremely busy orthopaedic surgical ward. Again I was fortunate to be able to work with the most incredible staff. During handover on my first day, the NUM introduced me to the staff, I was able to explain that I had hearing loss and let staff know how to communicate with me, e.g. face to face, speak clearly, make sure you have my attention before speaking with me and allow me to paraphrase so that I know and you know that I have heard correctly. I also wore a badge that stated that I was hard of hearing.

At the start of this rotation I had discovered that I was pregnant with my third baby, so my bump and I waddled our way into my third rotation in the infusion centre, this was a favourite rotation as I learned so much in regards to nursing, but I also learned about what kind of nurse I am and what kind of nurse I hope to be.

Once I completed the graduate year I went on maternity leave for 8 months. I gave birth to my baby girl in September 2020. In February 2021 I re-joined the nursing workforce as bank/pool and picked up shifts where and when I could. I mainly work ED, ICU or General Wards. I have very recently obtained an amazing opportunity to work as a Cardiac Cath Lab Nurse.  I feel I have coped extremely well with hearing loss since I was given my CI.

Can you describe how your cochlear implant works for you?

At first, sounds through the CI didn’t make much sense. It’s almost like you have to retrain your brain how to hear again and make sense of what information it is getting. I am lucky that I have had 40 years of speech and sound memory so it didn’t take too long for my brain to relearn sound again.

It was particularly funny during the first few months because everyone and I mean everyone, sounded like mini mouse or a chipmunk! Even the burliest of men had little squeaky chipmunk voices, it was hilarious! But after a couple of months that settled down and everyone now sounds like who they are.

Music was terrible, it sounded flat and like irritating unidentifiable noise. This greatly upset me because music was such a huge part of who I was. But I forced myself to listen to it as much as I hated it, I forced myself because I believed it would get better, and it did! I now can listen to and enjoy music again. I have even taken up learning the guitar, I’m not too great at it yet, but I will keep practising. I have started singing again to. I am feeling like my old self again. I’ve heard songs I’ve not heard in years, it’s like revisiting long lost parts of your life, and it’s really amazing.

A really cool thing about the CI is that it blue tooths to my phone, so I don’t even have to hold my phone to my ear; it just comes directly through the implant. Landline phones gave me incredible anxiety, I couldn’t hear on them very well at all. One night while working a very busy shift in ED, I had to use the phone. I was terrified and thinking that it wasn’t going to work.

I held the receiver up to my CI and I could hear absolutely everything the person on the other end of the line was saying, I almost cried with pure joy! I know it’s silly, but little things like that always mean so much. I am still somewhat reliant on lip-reading to an extent, but that’s becoming less and less. I can even watch some things on TV without subtitles now too!

How has COVID19 and masks impacted you?

Since I lost my hearing, I always knew I had to avoid theatre because they all wear masks in the OT. I had a placement where I got to spend the day in the OT and I really struggled to understand people and I was too afraid to say anything. I wasn’t in charge of any patients, I was just there to observe.

Now that masks are everywhere, I struggled a lot at first, but like with everything else, the more you do something, the better you get at it. Masks still do present as an issue in communication, but only when the environment is extra noisy or when people have very strong accents. I find I get extra anxious when this happens. If I keep exposing myself to these kinds of environments I find that I do get better at it.

Since the mask mandate, I have had so very many doctors, nurses, friends and family approach me and tell me that they too struggle with hearing other people when they are wearing masks. I know that they must be worn for good reasons, but I do worry that important communication could be lost; this is particularly worrisome in a clinical environment. It would be excellent if clear masks were effective in infection control and available.

If I am not confident that I have heard something correctly, I will ask them to repeat and I always paraphrase to ensure that I have heard it correctly. Or sometimes the person I am speaking to will write it down. Most of the time, people have no issue in pulling their masks down for me to understand them.

Sometimes doctors will give me an order but they’ll be walking away as they are saying it, I am guessing that most people would struggle to hear in this circumstance. I have no issues in chasing after them and asking them to clearly repeat what they want me to do and then I will repeat back to them. Effective communication is vital in the medical world.

It’s even scarier when you’re the patient. I have been a patient and in situations where doctors and nurses are doing rounds. They were talking to me and talking to each other yet I couldn’t hear what was being said. Also when going into theatre and being on the table while you’re about to be anaesthetized, yet you cannot hear anything. That is such a terrifying experience.

Does your hearing restrict you from anything in nursing? For example, using a stethoscope?

I have some hearing in my left ear, granted it isn’t much but it allows me to hear low frequency sounds. I can hear heart sounds through a normal stethoscope, but I’m not as confident as I used to be in my assessments. I struggle to hear lung and bowel sounds though.

Due to amazing advances in technology, I was recently able to purchase a digital stethoscope that pairs with my implant. I can now hear heart, lung and bowel sounds through my CI with ease. It also provides me with a single lead ECG on my iPhone and records the sounds so I can show them to doctors. It’s the EKO Digital Stethoscope and it works very well for me.

As for restrictions, at first there were. I felt that I couldn’t work in theatre but now I feel that I can. I am getting better with masks. I also couldn’t use a landline phone, but now I can. I couldn’t hear lung and body sounds through a stethoscope but I found a way to do that too. If anything, losing my hearing has shown me that it is not always the end of the road when you think it is; sometimes you just have to take a different one.

What are some common misconceptions about ‘deaf’ or hearing impaired individuals?

I can’t speak for everyone who is hard of hearing, but for me personally, most people do not realise I am deaf unless I tell them. I have very long hair that covers my implant and most people don’t even read my “hearing impaired’ badge when I wear it.

I’ve been told more times that I can count “But, you speak so well for a deaf person!” I’m not sure what they think a deaf or hard of hearing person is supposed to sound like when they speak, but that is generally what a lot of people say to me.

 Sometimes people feel that they need to talk to me like I am from another planet, they slow their words right down and enunciate them emphatically, use exaggerated hand gestures and speak loudly and very slowly. I don’t find it offensive; I always get a giggle out of it because they look funny when they do it.

When I reply to them they are shocked that I can speak as well as I do, I do not know why this is, but in my experience there seems to be some form of misconception that being hard of hearing also affects your comprehension or cognition. I have found that I understand people even more now than when I had normal hearing. Non-verbal language sometimes speaks a lot louder than words… I find it’s often the most truthful language too.

What is most challenging and rewarding in your current role as a casual bank/pool nurse?

For me the most challenging aspects of working bank and pool is that, being hard of hearing and having the cochlear implant, I have to explain this to staff, doctors etc. so they are aware of it. Most of the time people keep forgetting, as I explained earlier, most people don’t realise that I am hard of hearing unless I tell them. Sometimes, especially if I have my back to a person or if I am already focused and engaged in another conversation and someone else starts speaking to me, chances are I won’t hear them. More often than not, it’s assumed that I am rude or ignorant.

That’s the hardest thing about going to an area where the staff don’t know you.  When I am in a familiar area and the staff have worked with me a few times before it’s a lot easier because they know I have a CI and they know that they need to have my attention when speaking to me. The CI improves my hearing 10 fold, but I only have the one CI; eventually I will get the left ear implanted if it’s possible. As wonderful as the CI is for me, it isn’t as good as natural hearing.

The most rewarding thing about being a bank/pool nurse is experiencing the different areas in nursing. You really get to become quite flexible in your role and learn a lot about different areas. Being a bank/pool nurse has really increased my confidence as a nurse; I feel I can really develop some well-rounded skills in this role.

Could you tell us about your interest in ageing and chronic disease?

I am currently undertaking a Master of Nursing Degree and specialising in Chronic Disease and Ageing. During my nursing career so far, I have been so fortunate to experience a variety of clinical areas. A large portion of our patients are aged and or have 1 or more chronic illnesses. I feel that the health care system is predominantly geared toward sporadic or occasional care rather than preventative care; I believe the focus needs to shift somewhat toward preventative care and helping people to manage their chronic conditions in the community.

I have a strong background in aged care, and as I mentioned previously a large amount of our patients are elderly, I feel that this specialisation would be of benefit to my patients as I aim to deliver a high standard of care. I hope to be able to support my patients and their families in achieving their health care goals. It is such a wonderful experience to see a patient achieve their goals, the pride and self-belief that they have in themselves from that moment on is incredible, I LOVE being a part of that.

With your experience working in a residential aged care facility, do you have any advice for healthcare professionals working with patients with dementia?

When I first started out in nursing, I worked in a dementia specific ward. I remember going home after a shift feeling exhausted both mentally and physically. In nursing you give all of yourself to your patients especially in dementia. Take care of yourselves, YOU are important too. Make sure you practice self-care, do things that you enjoy, have a Netflix binge in your PJs if that’s your thing, take a walk on a beach, create something, bake, dance, sing…  do what makes you happy. But most of all, debrief. Debrief to you nurse in charge or a trusted colleague, don’t take it all home with you.

I remember my cousin who is also a midwife gave me the best piece of advice for when you have a bad day at work, she told me to consciously leave my bad work day at a landmark on my way home from work. For me I drove past a beach every day, and I would consciously leave my bad work day at this beach so that I wouldn’t bring it home with me. I’d pick it back up again on my way back into work the next day. This piece of advice was particularly useful during my rotation in ICU and during my time as a student on placement.

Who are the four most influential people in your life?

My Fiancée Nathan, The world hasn’t been particularly kind to him yet he has never once allowed it to change who he is. He is kind, compassionate, giving, strong, and intelligent and just an incredible person. He has always had this indestructible belief in me that I am capable of great things, he makes me feel that I can do anything. He makes me want to be the best person I can be.

I don’t think that I would have got this far without his continuous unconditional love and support. He works so incredibly hard for me and our children and has never once complained. He is the most amazing person I have ever met and I thank the stars for him.

My Daughter Kendra, She has this unwavering strength and confidence. Even if the odds are stacked against her she won’t give up or give in. She exudes unconditional kindness and empathy and won’t let her emotions get the better of her. She handles situations with complete grace and intelligence. She is kind to everyone, even those who don’t deserve it; she feels that these are the people that need it the most.

My Son Axl, He has such compassion for people, he will do anything for anyone and won’t even think twice about it. He is very generous and giving. He can always tell if something is bothering someone and he will make his mission to help that person with anything they need. He is extraordinarily strong willed, once he has his heart set on something he is determined to reach that goal. I adore that kind of dedication and commitment for going after your dreams.

My Daughter Lilah, The most happiest and content little person I have ever met. She looks at the world with such wonder and excitement. She brings happiness with her wherever she goes. She makes it feel like the sun is shining when it’s raining, she is pure sunshine and joy. She dances like no one is watching; she is happy and smiling all the time it’s hard to be sad around her. She is always in a joyously happy mood; I think the world needs more of that, especially at the moment.

What inspires you about the nursing profession?

There is a rather long list about the inspiration I get from this wonderful profession. The main one is the resilience and strength of human beings in adverse situations. When you see a patient come in, they are so unwell, in pain, frightened and you as a nurse along with the patient themselves and a team of healthcare professionals all work together to establish the best possible plan for their recovery and discharge. Seeing a patient reach their health goals and be able to manage their own health always gives me a bit of a rush, I love being a part of that.

I know not every case works out that way, I wish it did. I live for the ones that do, that’s what I hang onto. I love being a part of the healthcare team; I take great pride in being a nurse. It’s such an honourable profession and I am grateful to be part of it. Medicine is always changing and updating rapidly. Nurses have this incredible ability to just adapt and hit the ground running.

 During the COVID -19 pandemic, policies were constantly changing in accordance with the most updated health advice and my colleagues just all took it in their stride and did what they had to do to get their patients and themselves through it. I am extremely proud of all of my colleagues, particularly over the last year or so, they’re incredible.

Can you share a funny story while working as a nurse?

One story in particular, I was working in a RACF. We cared for this very formidable little lady who suffered from dementia. She was known to become quite stroppy with the staff on any given day for any given reason. One day one of our wonderful Carers was attending to her. For whatever reason, this darling little lady just wasn’t in the mood for being helped at that particular moment and was becoming resistive and grumpy so my colleague moved on to the next patient.

As I was walking past, the little lady had me mistaken for a police officer and wished to report my colleague for harassment and assault… My colleague and I just went along with it and I pretended to arrest my colleague and escort her to the station. The little lady was most pleased with this. I was known as “Constable Care” from that point on; whenever that particular resident saw me she would wave and call out “Oh, Hello Sergeant!!” To this day I have no idea why she thought I was a sergeant, but it made her happy so we just went along with it.

As heartbreaking as dementia is, it is one of my most favourite areas I have ever worked in. We used to have a lot of fun with the patients. In long-term care you really get to develop a strong relationship with your patients and their families. They even become a bit like family to you. I’d often look forward to going to work. But, after many years in aged care I began to feel a pull in another direction of nursing. I eventually left aged care to experience other aspects of nursing and further my clinical skills.

How can nurses be effective mentors to students in the workplace?

It’s easy to forget what is like being a student. When I went to university to complete my degree in 2016, I hadn’t been a student for almost 10 years. Even though I had years of nursing experience in aged care behind me, I remember feeling terrified when I had placement.

A lot of the time, experienced nurses are really happy to teach students. Most if not all of my preceptors were excellent and they seemed to enjoy being a mentor to students. However, I did have a few instances where I was bullied, particularly after I had lost my hearing. I soon learned to speak up and put a stop the behaviour, it made me feel pretty confident in my de-escalation skills.

As a fully-fledged nurse, I LOVE to teach. Student nurses bring with them fresh new knowledge and passion to our profession and I feel we can all learn very much from them. I love to see the students that I have mentored become increasingly confident with their new found skills. We were all students once, I think we need to remember that and how daunting it can be.  

I think to be an effective mentor, you need to reflect on your days as a student, remember what it was like. Remember what your preceptors were like good and bad. Give your students as much practice in the clinical environment as you can, they need to feel ready when they hit the wards themselves. They are there to learn and it is our responsibility to teach them to be the greatest nurses that they can be.

Listen to your students, they are another set of eyes on your patients, they might see something you have missed. Show them what it takes to be a team and foster a positive and supportive work environment that encourages learning. Even when our student days are behind us, we are always learning for the rest of our career.

If you could tell your younger self any piece of advice, what would it be?

I would tell her that she IS good enough and to believe in herself a lot more than what she does. When she thinks about the person she wants to be, it’s a waste of the person she already is. She is capable of great things; all she has to do is believe it…

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