Hi… I’m Back 💛

Hi everyone, I’m finally back after a couple of years away.

So much has happened since I last wrote, and I wanted to share a proper life update as well as talk about where this blog is heading next.

In the last few years I’ve:

• Bought my first home

• Adopted two beautiful doggies Milo and Marley

• Had surgery due to a cochlear implant failure

• Become President of IFHOHYP

• Become Mrs Want

It’s been busy, emotional, challenging, and exciting all at once.

This year, I have a lot planned for the blog and my socials. I want to focus on showing the realities of life as someone who is deafblind — the good, the difficult, and everything in between.

Although my sight has been getting worse, I’ve still been making memories and enjoying life, including buying my first home with my partner (now husband!) Mason in July 2024.

My Cochlear Implant Failure & Surgery

In September 2024, I began experiencing problems with my cochlear implant.

I had:

• Pain and discomfort around the magnet and ear

• Severe tinnitus

• Extreme headaches

• Distorted sound

I had to take time off work and schedule lots of “hearing breaks” because everything became overwhelming.

After several months of investigations, my audiologist confirmed that my implant was failing and needed replacing as soon as possible. I was placed on a waiting list in December, with an estimated wait of 2–3 months.

A Very Eventful Week…

Two days before returning to work after the Christmas break (I work in a SEN school as a Learning Partner), I came home from shopping with my mum to find Mason waiting with a huge surprise…

Two doggies

I was completely shocked and overwhelmed with happiness.

Then, just two days later, on my first day back at work, I received a call at the end of the day offering me a surgery date — that Wednesday.

I didn’t hesitate. I said yes.

One Month Without Hearing

The operation went very well, but afterwards I had no hearing at all for an entire month.

I also experienced constant, loud tinnitus, which was extremely distressing. Normally I would use white noise to help mask tinnitus, but without hearing, I couldn’t do that.

This was an incredibly challenging time, especially while adjusting to two new doggies at home.

To communicate, I relied on:

• Caption.Ed on my laptop

• A transcription app on my phone

These tools helped me understand conversations and stopped me from feeling isolated. I’ll link them at the bottom of this post.

During this month, I also:

• Turned 25

• Had my wedding makeup trial

Thankfully my Maid of Honour supported me, and my makeup artist was incredibly patient and accommodating.

I am so grateful to my family and support network, I couldn’t have managed without them.

Switch-On Day 💥🦻

On February 4th, I attended my switch-on appointment with my mum.

It was a strange hearing day.

But I could hear again.

I cried.

Everything sounded high-pitched and “elf-like” at first, but I didn’t care, I was just so relieved and happy.

It took some time for my hearing to settle back to normal.

https://videopress.com/v/ROTLdSkv?resizeToParent=true&cover=true&preloadContent=metadata&useAverageColor=true

Getting Back to Life

I returned to work about one to two weeks later. Getting back into routine took time, but slowly things became easier.

With hearing restored, I could finally focus again on:

• The doggies

• Wedding planning

• Daily life

Milo’s Health Scare 🐾

In April 2025, one of our dogs, Milo, became very unwell.

He was hospitalised and, after lots of tests, was diagnosed with megaesophagus.

The following months were tough:

• Feeding upright in a special chair

• Medication

• Constant monitoring

Thankfully, Milo made an amazing recovery. He’s now back to normal and just uses a slow-feeding bowl.

The vets told us this condition is rare, which makes his recovery even more special.

Becoming President of IFHOHYP

In May, I became President of IFHOHYP (International Federation of Hard of Hearing Young People).

IFHOHYP is an international organisation that supports and connects young people who are hard of hearing, including those with mild to severe hearing loss.

The organisation focuses on:

• Empowerment and confidence building

• Accessibility and inclusion

• Leadership development

• Advocacy for the hard of hearing community

• Creating international connections and opportunities

I feel incredibly proud and honoured to hold this role and to represent young people from the hard of hearing community on an international level.

UsherKids UK Camp

In July, I attended UsherKids UK Camp for a few days.

It was extra special because I was getting married the following week.

Seeing familiar faces, meeting new campers and mentors, and being in such a supportive community reminded me why this space matters so much.

Our Wedding 💍

On August 4th, I married my partner of nine years, Mason.

It was a perfect day.

Nothing went wrong.

Our doggies walked down the aisle with the rings.

We danced our first dance to Perfect by Ed Sheeran.

We laughed, cried, and had the time of our lives.

https://videopress.com/v/LgWzIafh?resizeToParent=true&cover=true&preloadContent=metadata&useAverageColor=true

Honeymoon in Japan 🇯🇵

For our honeymoon, we travelled to Japan — and it was honestly the best holiday of our lives.

Japan has some of the best accessibility I’ve ever experienced:

• Tactile paving everywhere

• Captioning and visual displays

• Braille signage

• Calm, organised environments

It felt incredibly inclusive, especially for disabled and neurodivergent people.

We will definitely be returning.

What’s Next for Chloe’s Usher Journey

Going forward, this blog will focus on:

• Life as someone who is deafblind

• Accessibility wins (and fails)

• Daily life, travel, work, and relationships

• Advocacy and community

Thank you for being here.

Thank you for your patience.

And thank you for continuing to follow my journey.

💛

Here is a link to Caption Ed and the app live transcribe which I used on my phone during the month of no hearing.

https://caption-ed.com

https://apps.apple.com/gb/app/live-transcribe/id1471473738

Since November last year, i’ve been learning how to use a cane as my eyesight has deteriorated more. Sadly after three sessions, my trainer went off sick and didn’t return to his role so i had to wait to get training again. However, Guide dogs came to the rescue.

I first applied for guide dogs last year, when I was living in Bristol and they said I didn’t need a guide dog yet. I applied again in late December as my eyesight has deteriorated a lot and was struggling to get to places independently. I went through two/three phone calls discussing my eyesight, my needs and what i’m struggling with. They then decided I can have the mobility assessment. This entailed, them watching to see if i can navigate a journey by myself and to see if i’d benefit from having a guide dog. I then went to the next assessment stage to see if I would be able to follow the dog and if it’ll benefit me. Following that i had the pet assessment to see if my dogs would get on with a gudie dog and I passed that!

I got a phone call couple of months ago to say I am on the guide dog waiting list, which I jumped for joy and was so pleased. During my mobility assessment, the lady asked about my cane training and I explained what happened. She spoke to guide dogs and the council and decided to continue my training with her. I can now go out with a cane confident knowing how to use it.

I’m still trying to get more confident with using it during daylight as it’s a new thing and I just get nervous i’m gonna see someone I know. I know it’d be fine but my brain gets to me and I don’t use it.

I tend to use it when i’m in London but the amount of people who do not move out of the way is outrageous. I know I will get more confident and it’ll take time and that’s fine as it is still new to me. But at least I’m on the guide dog waiting list and hopefully I don’t wait too long. I will keep you all updated.

I will be posting a blog about attending to the IFHOHYP study session in Strasbourg soon.

When my mum was 8 months pregnant with me, she had Septicaemia, so I had to be born a month early. The doctors provided me with medication in case I became unwell. They informed my parents about potential side effects, including the possibility of losing one or more of my senses. Therefore, both the doctors and my family believed that the medication might be the cause of my hearing loss and was told I needed cochlea implants.

At 18 months old, I had a cochlear implant operation on my right ear. Later, at the age of 11, I had the same procedure on my left ear. Growing up, myself and my family were unaware that a genetic condition was responsible for my hearing loss. Despite being the only deaf person in my family, who are all hearing, so I didn’t learn sign language. Instead, I learned to lip-read and received speech and language therapy to improve my verbal communication skills. Additionally, at my secondary school, signing wasn’t allowed, denying me the opportunity to learn alongside my fellow deaf friends.

I can’t count how many times someone has approached me in complete disbelief upon learning that I am deaf, given the quality of my speech. While I do wish I had learned sign language, I am planning to do so soon to improve communication with my friends who use BSL. However, it’s worth mentioning that I have often been told that I am quite loud and a talkative person. So, if you ever meet me, it’s safe to say the encounter will be memorable!

Anyways, let’s continue with my story. When I was 14 years old, I had a routine eye check-up with an ophthalmologist who wasn’t my regular one. During the examination, she noticed some unusual spots behind my eyes and showed some concern. Consequently, she referred me to Moorfields Eye Hospital in London. They did several tests on my eyes and then they confirmed the diagnosis. I also had genetic testing at another hospital, which revealed the presence of the CDH23 gene, indicating that I have USH1D, a rare subtype of Usher Syndrome Type 1. This condition, characterised by profound deafness (present from birth), significant impacts my sight and balance. At the moment, my vision is most affected in dim and dark environments, and I am gradually losing peripheral vision. As a result, I find myself constantly turning my head to ensure I can see everything around me.

Before discovering that I had this genetic condition, I was just a deaf girl attending a school for the deaf and was preparing to start my GCSEs. After receiving my diagnosis, I’ll be honest with you all, I was in shock and felt quite low for an extended period of time. The diagnosis not only raised many questions but also provided answers about myself. Growing up, I consistently faced challenges, such as difficulty seeing in the dark. Despite well-intentioned advice, like people telling me to “eat some carrots, it’ll help,” which, as we all know, wasn’t the case, I also struggled with issues related to my balance.

I am currently twenty-three years old and happily engaged to my amazing fiancé. Our love story began when we were just 16 years old. We met online through mutual friends and instantly fell in love. In 2019, he proposed to me on the field behind Gretna Green, and now we are excitedly planning our wedding, set to take place in 2025!

Currently, I am employed as a teaching assistant in a wonderful school and studying part-time at the Open University to achieve my goal of becoming a teacher. When I turned 21, I connected with a remarkable woman named Chloe, who oversees a charity called UsherKidsUK. She invited me to participate as a mentor in their first ever camp, and without hesitation, I accepted!

The USHThisUK camp proved to be an incredible experience. The camp is for children with Usher Syndrome, it provides a platform for learning about the condition, connecting with others facing similar challenges, and engaging in enjoyable activities. Being part of this wonderful camp brought me joy, and I am thrilled to continue participating in future camps. It’s worth noting that attending the first UK camp significantly boosted my confidence in managing my disability. It empowered me to face forthcoming challenges head-on and not allow my condition to dictate my aspirations and dreams.

Since attending this camp, I’ve had the pleasure of meeting many individuals who share similar experiences, and it has been a wonderful experience. A few months after the camp, a fellow mentor and I were invited to represent the UK camp at the USHThis camp in the US, organised by Ava’s Voice organisation. This opportunity was incredible, and I was thrilled to experience a summer camp in the US, a dream come true for me. One of the highlights was getting to do one of my favourite activities, horse riding! The camp was simply unbelievable, with the kids being absolutely lovely and a lot of the kids loved my English accent. I genuinely hope for the chance to go again and reconnect with all of them!

After the US camp, I returned to the UK camp and had the joy of reconnecting with everyone, it was truly unbelievable. I had the opportunity to meet even more people, and I also contributed by helping film the highlights of the camp. Participating in these camps just boosts my positive energy every time, thanks to the tremendous support from everyone involved.

At the USHThisUS camp, I was approached by a woman called Nancy, a member of the Usher Syndrome Coalition, who asked if I’d be interested in becoming an ambassador for the UK. Having completed my training, I am now prepared to discover new resources and assist those currently undergoing diagnosis, as well as parents of children with Usher seeking support or advice, or simply wanting a new friend.

Thank you for taking the time to read my blog. If you know anyone who has Usher syndrome or is interested in understanding it better, feel free to share my blog. I’ll be posting as much as I can here and on my Instagram, which is @chloe_ushers.

If you’d like to know more about the camps, I will be posting links to their websites on this website!