Meningitis Now staff member Andy Hopkinson

My non-visual struggles: Ami's after-effects of meningitis

Andy Hopkinson | 28th August 2021

Ami, from Greater London, contracted bacterial meningitis over 35 years ago at the age of 2. She survived her ordeal but the disease has left her with lifelong after-effects

Ami's non-visual after-effects of meningitis

Many of these, such as deafness, are not immediately obvious and in her regular blog she is keen to tell her story and raise awareness of her non-visual struggles. She’s kindly agreed to let us reproduce this recent entry.  

“I've had an odd month, too many things to juggle, one being my appointment with ENT tomorrow. I must say one is feeling a little anxious as to what the outcome might be.

“What is it like to be deaf or hoh [hard of hearing]?

“Especially to be someone who lip reads, so a lot of people don’t even know you’re deaf?

“For fun, I love pottery, reading when I can, sports, fitness, travelling and a lot more.

“Yes, deaf and hoh people have hobbies... We drive and yes have sex too.

Ami's non-visual after-effects of meningitis

“Growing up I taught myself how to read lips rather than use sign language.

Accessibility wasn't as good

"Why? 

“Back then accessibility wasn't as good, let's put it this way. 

“I’m eternally grateful that I had no choices for myself so early because it has shaped me into who I am now. The way I interact with the world, and, for me, it has made being deaf nearly a non-issue. 

“Often, friends and family forget that I am deaf because we interact so seamlessly. I’m sure there are many things that hearing people assume deaf people can’t do. 

“What are some things that deaf people can do that might surprise us?

I do not stop talking 

“Talk. Doctors told my mum that I would never be able to talk, but here I am! For those who know me... I do not stop talking. I’ve won speech and academic competitions, I drive, I love music, I've achieved enough to be proud. 

“A lot of people assumed that being deaf or hoh is a curse. Has being deaf ever affected my career? Yes, I think it has, but you could argue that it has driven me to succeed in some ways. I can’t stand being told that I can’t accomplish something, so I took every opportunity I had to blow that sentiment out of the water. 

“Do I take part in Deaf culture? I don’t, unfortunately, I have friends who are actively involved in Deaf culture, but I feel like I became separate from it the moment my mum made me part of the hearing world growing up. I understand and support the need for Deaf culture because it’s true that resources for many deaf people are lacking, and having people who understand what you need can be invaluable. It just hasn’t been something that I was exposed to, so it was never a part of my life.

Cochlear implants are amazing – but not for me

“How do I feel about cochlear implants? I think they’re amazing, just not for me. Look up some YouTube videos of people getting theirs turned on for the first time – some of them are beyond inspiring. I don’t have one, and I wouldn't want one. Why? I have accepted my deafness and I don't believe that having one would make a  difference in my life. I’m still holding out on some stem cell research – I was just talking with my doctor about this, and it will be fascinating to see where we’ll be in the next decade.

“Do my friends ever ask me to lip read across a crowded room? ALL the time! It's all about the gossiping.

“What advice would I give to someone who is dating or friends with a deaf person? Well, be very aware of the ‘good' ear, and try to be considerate of where you sit relative to that ear. My right ear is my so-called good ear, oh, it helps when people sit and walk to my right. I’ll often remind people, but it helps when people just remember. You don’t always have to talk louder, but make sure you’re talking directly to him or her so your lips can be read. That’s generally a good life practice anyway! Above all, just ask what the deaf person needs. Most people will appreciate that.

Ami's non-visual after-effects of meningitis

All my life I have felt lost 

“I can now sign and am slowly integrating myself into the deaf community because all my life I have felt lost for more reasons than one!

“Not belonging or not being accepted can have a massive impact on one's life. 

“For everyone out there that has suffered segregation or not been given a choice, it's never too late.” 

Read more of Ami’s inspiring thoughts on her blog – see http://mynonvisualstruggles.blogspot.com/

Read Ami’s meningitis story here.