When You're Blind and Start Losing Your Hearing – John's Story

Imagine being completely blind from birth, relying on your hearing to understand the world around you, and then discovering that you're losing that sense too.

That's the situation my husband John found himself in.

John has been totally blind all his life, but his hearing loss developed much later. In our latest Special Needs Adventure Family video, we sat down together to talk about how it began, the difficulties he's experienced and what it's like living with both blindness and hearing loss.

When John First Noticed His Hearing Loss

John first became aware that something wasn't quite right with his hearing around 2013, when he was still living in Florida.

After he moved to the UK, he underwent hearing tests around 2016, and it became clear that his hearing was deteriorating.

By then, I was becoming rather fed up with having to shout to make myself heard!

Of course, we can joke about it now, but hearing loss was something John found particularly difficult to accept.

Losing a Sense You've Always Relied Upon

John has never known what it's like to see. Blindness is simply part of who he is, and he's spent his life learning to manage without sight.

Hearing, however, was different.

It was a sense he'd always had and relied upon. It helped him understand what was happening around him, communicate with people and make sense of his surroundings.

Losing some of that ability meant having to adapt all over again.

As John explains in our interview, it's something he's still navigating years later.

The Fear of Becoming Completely Deaf

One of the most worrying periods came when John's hearing began deteriorating rapidly.

A consultant warned him that he could become completely deaf within five years.

Thankfully, that hasn't happened, but the possibility has never entirely gone away.

John is particularly concerned whenever he develops an ear infection. If his hearing becomes worse, how can he tell whether it's the infection causing the problem or whether he's losing more of his hearing permanently?

As he says in the video:

"Or is this my hearing going? I don't know."

That uncertainty is something he continues to live with.

What Hearing Aids Have Given Back to John

Hearing aids have made an enormous difference to John's life.

They've helped him hear conversations with me, hear about George's achievements and hear his mother's voice.

These are things that many of us take for granted, but they mean a great deal when you've been struggling to hear the people closest to you.

However, hearing aids aren't a perfect solution.

John still finds some conversations difficult to follow, particularly when there's background noise. Wearing hearing aids doesn't automatically mean that someone can hear everything clearly.

That's something worth remembering when speaking to anyone with hearing loss.

Why I Sometimes Have to Shout

This is a subject that can be both amusing and upsetting.

I'm a former teacher, and I still have what John calls my teacher voice. It's certainly useful when I need to make myself heard!

Unfortunately, people sometimes hear me speaking loudly to John and assume I'm shouting at him because I'm angry.

I've even been criticised for it.

The reality is that John needs me to speak loudly enough for him to hear. There's no point speaking quietly if he can't understand what I'm saying.

We can laugh about my teacher voice between ourselves, but it's upsetting when other people make assumptions about how I treat my husband.

John sums it up rather well in our interview:

"It would be very nice if people would understand."

And that's really all we're asking. Before judging someone else's behaviour, consider whether there might be a reason you don't know about.

How Hearing Loss Affected John's Chances of Getting a Guide Dog

Hearing loss doesn't just affect conversations. For someone who is blind, it can also have serious implications for getting around safely.

John underwent an assessment for a guide dog, but during the process he stepped in front of a bin lorry because he couldn't hear it approaching.

The incident brought home just how important hearing can be when navigating the outside world without sight.

John continues to use his long cane, and we're also following developments with Glide, a new mobility aid designed for people with sight loss.

We're hoping to explore Glide further in future videos as we learn more about it.

Living With More Than Sight and Hearing Loss

As if being blind and experiencing hearing loss weren't enough, John has also experienced problems with his senses of taste and smell following COVID.

During our interview, he jokes that he's now left with about one and a half senses!

It's typical of John's sense of humour, but behind the joke is the reality of having to adapt to several sensory difficulties.

John's Advice About Hearing Aids

Towards the end of our conversation, I asked John what advice he'd give to someone experiencing hearing loss.

His message was simple:

If you need hearing aids, get them and wear them.

John knows from experience how much difference they can make.

He also believes it's important to wear them consistently rather than leaving them unused.

Although hearing aids haven't solved every difficulty he faces, they've helped him remain connected to the people and conversations that matter to him.

Why We Wanted to Share John's Story

We made this video because one of our viewers asked about John's hearing loss.

We're always happy when people take an interest in our experiences, particularly when it gives us an opportunity to explain something that isn't always understood.

Being blind and having hearing loss presents challenges that aren't necessarily obvious to other people.

Sometimes those challenges are practical. Sometimes they're emotional. And sometimes they're made more difficult by other people's assumptions.

We hope that by sharing John's experiences, we can help people understand a little more about what everyday life is like for someone living with both disabilities.

And perhaps the next time you hear someone speaking unusually loudly to a person with hearing loss, you'll think twice before assuming they're being unkind.

Watch Our Full Interview

You can hear John talking about his experiences in his own words in our latest Special Needs Adventure Family video:

Blind and Losing My Hearing | John's Story

If you've experienced hearing loss yourself, or support someone who has, we'd love to hear about your experiences in the comments.

Thank you for following our adventures!

Sue, John and George

Special Needs Adventure Family

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