Month 18 – Life as a deafened human
I’ve tried to keep all my posts mildly upbeat, considering the circumstance. I don’t want to leave a trail of misery in my midst nor give those of you out there in my position any reason to lose hope. But I realise that in doing so I’m also putting a big smile on a tragic situation, and wimping away from speaking the cold hard truth of what it’s like to be deafened.
So today I want to take the strong, resilient, contentedly-coping smile off my daytime face and tell you that to be deafened is to be completely isolated and excluded from our supposedly disabled-friendly society. It is a most lonely place to be. Being deafened is like always sitting at a table of people speaking a foreign language, waiting for someone to remember to interpret for me in a language I can understand. I spend much of my day hoping that someone on the other side of the conversation will remember for longer than 2 minutes that I am deaf.
Connection is why we are it. It’s what gives us meaning and purpose.
No matter how many times I say “I can’t hear you I have 30-50% hearing left could you speak louder”, most people don’t even seem to attempt to raise their voice. Which leaves me, in every conversation with another human being, struggling to rely on my 6th sense, smell and vision to decipher the faint warbles and hums that my ears hear, and then turn this into some sort of logical meaning; and this is all over the consistent shriek of the industrial machinery-style tinnitus in my head which is 5 times louder than that the actual voices around me.
…and then there are the people who get even quieter when I say I can’t hear! What the f^%* is that about? I mean seriously!? I’m giving every ounce of my energy to hearing your precious words because I want so much to hear you. Meanwhile you can’t be bothered to put even a decibel or two to your words for me?!
Not to mention the cinemas, restaurants, bars, concerts, theaters, coffee shops, dinner parties and workshops I now can’t go to. Or the swimming, cycling, running, dancing, diving, swinging, rolling and jumping I can’t do because of my balance issues. The good news is that I have a disabled CEA cinema pass that gives 2 for 1 entry but the bad news is cinemas provide next to zero facilities for deaf people so I why would I go now anyway. That’s how ignorant our society is of deaf people’s needs.
I know I sound bitter today (which is unusual as I’m usually so positive! lol) – it’s been day after day of others not speaking properly to me, in my workplace, on my course, with friends, at the social event, and with my family, none of which are making appropriate adjustments for me. I’m struggling with the imbalance of it, and I’m tired of the work involved to hear people. It’s these ones that keep me going.
As a deafened person I feel like I’m reliant on the beautiful aspects of humanity to show themselves. It’s those angels who occasionally touch me so deeply with their consideration and kindness, when they remind the others in the conversation to talk louder or one at a time so I can hear. The ones that check I am hearing okay because they remember that even though I look normal, I’m not ‘normal’ at all. The ones who come speak to me properly. I guess these are only ever my closest friends.
I wanted to educate people with this blog but mostly the people who read it are in the same position as me facing the same problems. No-one who has contacted me so far has lost quite as much hearing as me quite so suddenly but I’d love to hear your tips for how to cope with communicating with others with hearing loss? how do you manage? How has your life changed? what are the new things you spend more time doing now? How do you socialize? Perhaps you have some funny ways of dealing with difficult people? as usual I’d love to hear from you…
September 4, 2016 @ 1:07 am
So sorry to hear about all the ignorance, I’m suffering slightly by people’s lack of thought, on a mental health front. People don’t actually understand the isolation part, or choose to not understand.
I’m fully with you on the bitter front! Like 10000000% hahaha.
I think it’s great that you can share your feelings so strongly xxxx
September 4, 2016 @ 5:53 pm
Hello, first time I’m replying to your post. (Sept.16) I lost my hearing and my balance after bacterial Meningitis, 15 years ago. Over night. I was able to cope more or less for some years with hearing aids and a bicycle for disabled people with three wheels. I’m living by myself and I feel alone.
Now a sudden hearing loss caused complete deafness in one ear and still more hearing loss at the other side. This is harsh, this is hurting my self. The balance issues with permanent Oscillopsia increased still much more. People are drawing back from me, even more than in those years after the sickness. I got used to that. For most of them it’s ” too exhausting” to communicate, to speak to me in a slowlier way. It’s just a question of consciousness to do so. Sometimes somebody starts to try, but after some sentences it’s the same hurry as always.
Is it possible for you, with autoimmune desease, to get a Cochlear implant? For me it’s not. And did you try the “Roger MyLink”? ( Phonak) Of course this is no advertising.
Sending you regards from Munich, Germany
September 4, 2016 @ 11:38 pm
It makes me so sad to read your comment Marie. I feel your pain and there are no words for what you are going through. I fear also that I’m losing all my hearing in my right ear and I know that if I lose any more hearing then it will start to become difficult to function at all with other people. Why can’t you get a CI? Apparently I still have too much hearing for a CI – they only give them when hearing aids don’t work anymore. I do have Roger Pen which is very helpful in many situations, though I guess most of the time I have too much pride to use it. I hate to feel that my hearing aids aren’t enough and I need second equipment. Are you still using hearing aids? Can you get stronger ones? Bone anchored hearing aids? x
September 4, 2016 @ 10:51 pm
Dearest Candice, thank you for your honest post. It breaks my heart to hear how you struggle. Even if we never met, I have been thinking a lot about you. I think you are absolutely amazing! You have really helped my and otherwise to cope along the way with your texts and by sharing your experiences. Wish I could help you in any way. Even if I haven’t lost as much hearing I think I can understand the grief and frustration (since I also have AIED). Sending you love, strength and comfort. Understanding that words won’t heal, I am sure that you have what it takes to cope – maybe not right now but in a while. How is your ENT? Have you discussed CI? Can you try to get in contact with people HOH? At FB there are some people with AIED who have received CI which seems to have changed their lives, have you contact with any of them? Again, I send you all my love, you are strong and I know you will find a way…please let me know if I can help in any way! Love Mari
September 4, 2016 @ 11:47 pm
Thank you Mari for your kind words, reassurance and understanding. I’m glad my writing is helping others in similar situations. I ditched my incompetent ENT a long time ago…I think it was his comment “you don’t have sudden sensioneural hearing loss, because you still have some hearing left” which made me wonder his sanity, as I was already so deaf I’d gone and bought myself hearing aids! I have spoken to the hospital about CI but they said I still have enough hearing for hearing aids to work. I’ve also heard many positive stories about CI. Are there any particular groups you suggest? I joined quite a few but have not been so active on them recently. I haven’t been able to find many adults with sudden hearing loss.
September 8, 2016 @ 2:04 am
Dear Candice, I have found your blog while looking for results with the Medical Medium diet. Reading your posts, I couldn’t stop wondering if maybe German New Medicine could help you. I am in no way representing them, but I know a lot of theories about alternative healing and think that dr Hamer’s approach could work with your sudden hearing loss. Look it up if you think it could be helpful.
Unconditional love to you, Rita
September 10, 2016 @ 8:05 am
Thanks Rita I will look it up now X
September 10, 2016 @ 10:37 pm
I will check it out Rita thanks for the suggestion
November 25, 2016 @ 9:12 pm
I burst in tears when I found your blog. I am sure my partner of 42 years has the autoimmune hearing loss. This is the first time I have foundany link to it, and believe me I have been looking for years.
He is not alone. Oh my god. We have felt so alone, and he is isolated… even if I can empathise, which I can’t because I can hear… but I have severe vision issues… which I am linking to autoimmune…..
So he is mostly deaf & I am partly blind… gotta have a sense of humor.
November 28, 2016 @ 10:16 am
Its so awful that people are left to their own devices to try and diagnose this issue. There isn’t enough support or understanding by the medical profession. It must have been an awful time for you both. I’m glad you have found me because I want to raise awareness of what this is and also what the cause is. I hope you have read my natural approach section as I am discovering that autoimmune inner ear disease is linked to the EBV virus. Please also look at the links in the links section so you can be in touch with others for support and information. Sending prayers and best wishes to you both x
November 29, 2016 @ 8:46 pm
Thanks, how is the natural approach working? It takes time. I sent him the stuff about EBV, and our functional medical practitioner.
It is interesting that he is taking most of the supplements, acupuncture helps for a bit, as does cranio-occipital chiropractic. Being on an emotional even keel helps too.
February 6, 2019 @ 12:13 pm
I have only a small amount of hearing loss and it can be quite frustrating at times. The worst spot for me is when I’m assisting with endoscopy, I’m a nurse, and the doctor is issuing verbal orders. We are all wearing masks, the lights are down and sometimes they have the radio playing.
In these instances closed-loop communication is helpful and necessary. The doc says give two of versed but what if I heard “ten”?! So, I repeat back what I heard before I give the med. This form of communication can be helpful at other times as well. It can be a way to let someone know that I am trying to listen to them but that something isn’t coming through. It can be good for laughs as they realize just how bad my hearing is in certain situations.
Friend mumbles something.
I repeat it “You’re mom’s making a pot for the fair”?
They then realize what’s happening “she’s saving a spot for the car”.
This is probably only helpful with friends and family as you’re making a bit of fun at yourself and them. It’s best done lightheartedly and in good humor.
February 6, 2019 @ 12:47 pm
Lol yes I’ve had all sorts of strange conversations to 🙂 good idea to repeat what you think you’ve heard when administering drugs or working in surgery!