Introduce yourself.
My name is Ellen, and my pronouns are she/her. I am a mental health worker studying my Masters in Social work. I love to cook, sing, dance, watch films (especially foreign films) and try new things (like roller-skating – I just started, and I am awful but determined to get better).
I started Lyra in October 2020, and I am now enrolled into Pearls Lyra for the third time. I love Lyra, and I am determined to continue to build strength and get better, so I can move up to Emeralds! I’d also love to try Sling and Vixenettes classes.
My goal is to turn up, have fun, and meet everyone in the class. They are all so talkative and positive to be around! A dance goal I have is to move past Pearls Lyra and do a straddle invert.
Note: since this interview was held, Ellen has progressed and will start her first term of Emeralds Lyra in Term Four.
Tell me about your condition.
I was diagnosed with Neurofibromatosis type 2 (NF2) when I was 14. This means that I have brain tumours on my hearing nerves [acoustic neuromas (AN)] and multiple spinal tumours.
It started when I was 2 with mysterious bumps on my head. We had multiple doctor appointments to work out why but they said that it was from falling over, and they would go down with time – but they never did. In fact, more bumps popped up.
The doctors didn’t know what it was, but after a while, they knew that it was more than just a bump. It wasn’t until I started losing my hearing at aged 14 that they knew something else was wrong. I was referred to an ENT and had an MRI – which showed a number of brain and spinal tumours. Brain tumours on my auditory nerves caused hearing loss. The left tumour was bigger than my right, so I lost the hearing in my left ear first.
I got by in high school as the tumours stabilised and didn’t grow until I was 20, when they started to grow rapidly again. I needed to have the left auditory nerve tumour surgically removed, which made me completely lose hearing in that ear. I was slowly losing the hearing in my right ear. I tried using hearing aids, but it was useless due to the severe level of loss I was experiencing.
Neurofibromatosis also affects my balance and can cause vision problems. Depending on where they grow, spinal tumours can affect the legs. So far, my legs have been okay. I feel lucky so far.
But then, I was approved to trial chemotherapy infusions. Initially, I got the infusions every two weeks, but now I am on the maintenance dose of every four weeks. It’s shrunk the auditory nerve tumours, and now I can hear better out of my right ear. It was such a weird feeling, because I had finally come to terms with my hearing loss – but it came back. My balance has also improved on this treatment! Follow up MRIs showed that my right AN had shrunk in size with treatment, something I never thought possible outside of surgery!
I feel like a fraud, but everyone says that I am not. Anything can happen at any point. It’s just so weird to be okay when I wasn’t for so long. A lot of people didn’t even know that I was hard of hearing – I hid it and pretended to hear people. I got really good at lipreading. When they learnt that I had brain surgery, they were like “oh!”.
I initially struggled a lot with my diagnosis because very few people had even heard of NF2 – even some doctors that I had seen didn’t know much about it! I felt scared from reading resources that said NF2 would take away my hearing, sight and mobility. But I feel so grateful to have supportive family, friends and doctors on my side. I feel privileged to have access to a life-saving medical treatment. I know that treatment with chemotherapy may not be sustainable long-term, and that my condition may deteriorate again in the future – but I am enjoying my current state of well-being for as long as I can.
How does Neurofibromatosis Type 2 affect you in class?
When I first started lyra, everyone had told me not to because I had recently started chemotherapy. I bruise easily, and I’m weak from the treatment. I didn’t see how it would work out, but I’ve stuck with it because I’ve gained strength, and I don’t bruise as easily anymore.
I found the studio when I was at the lowest point in my hearing loss journey when my Auslan tutor shared a post of Katia dancing. I was shocked to see that you could dance and be Deaf. It was so empowering. I thought “maybe I can do this too.”
Because my acoustic neuromas affect my balance, spinning in the hoop was initially really difficult for me – but I think this has become so much better with time and practice! In fact, I think this may have helped my balance improve overall!
My infusions make me fatigued, so I feel really weak in class, especially during infusion week. But Lyra has helped me build so much strength and confidence. I always leave the class with so much energy and in a good mood.
Some positions in the lyra hurt because of the placement of my peripheral tumours. Even holding the hoop hurts, because I have a tumour on the palm of my hand. I’ve learned to make some adjustments during certain positions to avoid this.
My peripheral nerve tumours made me feel so self-conscious growing up, particularly as they appeared on my face and arms – they are quite obvious. I used to get grossed out reactions from people when they asked me what they were. I’ve had multiple surgeries to remove tumours on my scalp, so I have a few bald spots that can really knock my self-esteem (I just want thick hair!). Lyra has helped me build my body confidence because everybody in the class is so supportive of each other. Seeing people of different shapes and sizes with different stories has been empowering to say the least.
As Lyra focuses on strength and flexibility, I think it has helped reduce the back pain I experience from my spinal tumours.
What do you wish people knew about Neurofibromatosis?
I wish more people knew about NF. It’s hard just learning about it from the internet, because people only really post about the worst experiences, so reading about it just gave me so much anxiety for the future. Living with chronic illness is hard, and an unpredictable journey – but everyones story is difficult and unique, even for those diagnosed with the same condition.
When people hear I have tumours they instantly ask if they’re cancerous and they are not - they’re benign. I then receive responses like “oh, that’s good then”, which minimises my illness. I need people to know that even benign NF tumours can grow and pop up in new places. I don’t have cancer, but it still SUCKS.
Living with an invisible illness is challenging and makes you question your identity - especially when the severity of it fluctuates.
Is there anything you want to add?
Living with an invisible illness is challenging and makes you question your identity - especially when the severity of it fluctuates. Going from being a hearing person to significantly hard of hearing meant that people often forgot that I couldn’t hear them. I hid my hearing loss for a long time during high school and uni - I became really good at lip reading and reading body language. This was even more confusing to people (and myself!) when the hearing in my right ear unexpectedly returned.
I struggled to identify as having a disability, even when I had severe hearing loss, because I still felt like I wasn’t disabled enough. Yet again, I struggled to fit in with all my able-bodied friends/family. Now it’s even more difficult because I have been doing well on treatment and my hearing, balance, and dizziness have improved - I say that I feel like a "fraud" because it has been a really confusing experience for me.
I have gained so much from Sky Sirens in the short time I have been here. It feels like a cosy, welcoming home.
I haven’t let my chronic illness get in the way of living my life! I still participate in all the things I want to and am proud of myself for continuing with studies and being an advocate for myself and others. I have always wanted to do aerials but I thought I wouldn’t be able to due to NF2 but I have challenged myself and it has been so worth it!