25 July 2017

GUEST POST // HOW DEAFNESS AFFECTS ME


In this guest post I have my better half, Ben who is going bare all and talk about his struggles with accepting his deafness and the worries he has for our kids.


Hi,

I'm Ben, Georgina's husband to be, Eloise and Lily's Dad, a deaf human and official guest poster.

I have Bilateral Sensorineural Deafness (you're probably wondering what the hell that is, right? Even the spell checker doesn't have a clue. I explain it better in the video below). So, with being a deaf person myself, and Georgina being a hearing person, that gives our children a 50/50 chance of being deaf. Wonderful odds. My Mother is hearing, my Father is deaf, and his Father deaf also. So that means that there’s a good chance that my kids are going to be deaf. Right?


Lily appears to be hearing, I say appears because sometimes we’ll tell her to stop doing something and she’ll just look at us with a cheeky smile then carry on, so I’m unsure if she’s just a dick or if she just can’t hear much. The morning after the birth, she had her hearing testing with a little device, all was good apparently.


We then had to get Lily’s hearing checked out properly a few weeks after the birth, but I don’t remember much about it because I was too busy worrying that she could be deaf. All I’m thinking is crap like, “Shit, she’s going to get bullied in school, she’ll struggle to hear things and she’ll feel like her social life will be crumbling around her just because she can’t hear her friends” Then I started worrying about her pulling her hearing aids out if they gave them to her at such a young age, then I started worrying about the batteries, then then trips to the hospital to keep getting checked. All stuff I had to go through.


I recall being told by some Doctors during Georgina's pregnancy that deafness can have patterns, and as it happens there seems to be a pattern regarding the men on my Dad’s side. As already stated, my Father is deaf, my Grandad was deaf, my Uncle is...well I believe he struggles to hear sometimes but he just plays it off. Either way, my Grandad and myself are the ones with the worst deafness in that we’re “Severely” deaf, whereas my Father is just “Moderately”.


Lily isn’t talking much, she says, duck, cat, hiya in context, but she isn’t really developing much in that aspect, but she does understand certain things we say and seems to respond fine. So why am I still worried?

I wasn’t diagnosed with deafness until I was 4. I don’t know how that happened, but I feel like maybe my parents went through the same thing Georgina and I are going through now. Maybe I acted fine and seemed okay, but maybe I was in fact responding to actions, facial cues, and what little pitches (Without hearing aids in I can hear some dull or high pitches) I could hear. Maybe this is what Lily is doing?


Maybe Lily is lucky and doesn't suffer with deafness, and I say “lucky” because, it sucks. Constantly having to think about if your batteries are running low, then wondering if you have any stored away. Struggling to hear new people's speech because your brain isn’t accustomed to their voice and then worrying that you’re coming across as really ignorant. Worrying that your hearing aids are going to get wet, dropped, or hit by something and then damaged, then having to get new ones, while struggling to function without hearing until you do get new ones, because the NHS only allow you to have the aids you’re using, then they take the old ones, and send them off to be scrapped or refurbished.


I mishear things, I struggle to follow lengthy conversations, I hang up on phone calls when the person on the other end sounds like they’re getting annoyed with having to repeat something, I groan when the heat makes me sweat and that sweat goes into the microphone and makes everything sound muffled. I hate panicking that I’m not going to understand anything my kids say to me and they’ll just decide to stop talking to me because it would involve them repeating themselves an annoying amount of times.


As a kid it’s quite restricting, imagine being invited to a friends house to go and play in the garden on a hot day, the sun’s out, sweat drips onto the aids and renders you completely deaf until you fix it, then they start to play with those super cool water guns and then your mates Dad brings out a fucking amazing 7ft inflatable pool and you can’t join in with because you don’t feel comfortable taking your hearing aids out being unable to hear everyone, so you just sit and watch. While I could do most things other kids were doing, there were also moments of uncomfortableness where certain activities could have led to damage or awkward moments where I’d not understand instructions given so I’d do everything wrong. But then if I chose to sit out of things I’d be teased for not taking part, then eventually everyone just forgets about you and doesn’t involve you at all.



My Mum told me that when I first got hearing aids, the first things I was surprised about hearing was the sound of the toilet upstairs flushing, the sound of the freezer humming, and the birds when we went on a walk. I apparently had a huge strop about wearing them, but then, most kids don’t like having random things being stuck into their ears, so that was understandable, but apparently after hearing those sounds I started to enjoy them more. Throughout school I struggled to follow lessons, and was even given a type of device where I wear tiny speakers that attach to my hearing aids, and the teacher wears a clip on microphone. It was handy, but I felt uncomfortable to the point that when I started high school I requested that I stopped using it because I “didn’t need it” but really I felt like a freak amongst all the other students.


To this day I still force myself to struggle because I don’t feel comfortable enough to acknowledge my deafness. If sounds are really loud, I won’t turn the device down, if my mould gets clogged with wax sometimes, I won’t take it out and clear it, I’ll either suffer until I get home or find a bathroom and sit in a cubicle. I won’t change my batteries in public. I feel like I have to act normal to feel normal, and then I’ll be there thinking, “ahh fuck what people think.” and carry on hiding my disability anyway. I'm worried that might happen with our kids, and it’s disheartening.


I don’t want Lily, or any of our future kids to have to go through everything I have had to over the years, but if they do end up being deaf I’ll support them just as much as I’ll support our hearing kids. If they struggle, I’ll help, if they’re bullied, I’ll bring hell upon the bullies, I’ll mould them all to stand up against the dicks of the world, and I’ll teach them to be who they are and be brave and do what they want. Yes, I’m scared that our children could end up deaf, but not because of the deafness itself, but because of other people, they might be bullied, they might be treated different they might get scared, they might struggle. That's what worries me.

I recently filmed an updated version of my "What is Deafness?" video on YouTube, check it out!





Ben, Georgina's husband to be, Eloise and Lily's Dad, a deaf human and official guest poster



Find Ben here:

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For more information and support surrounding childhood deafness please visit the National Deaf Children's Society.




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6 comments:

  1. This was such an interesting read. Well done for sharing your story Ben x

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  2. Well done for sharing Ben. It was interesting to read your experience of deafness.

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  3. Fab post! Definitely opened to my eyes more to something I don't experience or even think much of. Sending love xx

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  4. Thanks for sharing your story, a really interesting read xx

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  5. This was really interesting to read - thank you for sharing with us! I find it so shocking that it took until you were 4 to be diagnosed.xo

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  6. More guest posts Ben! Such an honest post, if Lily or any future children were to be deaf, the small silver lining would be having a Dad who knows exactly how they are feeling and they wouldn't feel so alone in it. Did it help at all that your dad and grandfather also had hearing loss?

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