Back in the early summer of 2017, when I didn’t know I was going to get an implant, I did a lot of thinking about what I was going to do. An implant was my plan A but, having convinced myself that I wasn’t going to qualify, I needed a Plan B.
I’d coped with many, many Plan Bs before. Indeed, given the constant need to adapt to worsening hearing loss over forty years, I was probably already on Plan Z, but I needed to do SOMETHING. One thing I planned was to restart the blog, describing what had happened to my hearing and then road-testing various strategies to help me cope. The other day I found a list of ideas for this in my notebook. I could test out mindfulness (very good friends of ours are enthusiastic advocates). I could try to find more things to do that didn’t involve my ears, get more involved in campaigning and take on a new challenge. I planned to report back on how I got on with all of this; what helped me and what didn’t.
Another idea on the list for road testing was counselling and I was already trying that. Struggling to cope and feeling absolutely miserable I had looked up the details of a local counselling service and made an appointment. Anything was worth a go.
So there I was at the counsellor’s office last summer, describing what the problem was. I did a bit of that and then, inevitably, I started crying. And that’s mainly what I did for the next few sessions. Cry. I couldn’t stop myself. I could barely speak. Caroline, the counsellor, listened sympathetically, and occasionally made a comment or asked a question. “I’m hearing a lot of grief”. “What does it feel like when that happens?” “What are you thinking when that happens?” Telling her made me cry some more.
It’s odd at first to be sitting there in tears and not have someone rush to make it better; to hug, pacify, attempt to cheer up, console. That’s what friends and family would do and it’s lovely, but it also (eventually) felt quite cathartic to sit there and cry and have someone say “OF COURSE you want to cry, you have grieving to do for what you have lost.” She passed the tissues. So I accepted that I was grieving. I listened when she said that grieving was a perfectly reasonable thing to do in the circumstances; that it wouldn’t help to fight it. I could see the sense in that, although it went against all my instincts of soldiering on regardless.
I’d also hoped to get answers to some of the things that were bothering me. Why did I suddenly feel so needy, for example? I’m not normally needy. What could I do about it? I wanted “my six top tips to stop feeling needy”. Instead, when I described how I felt, she said “but of course you are feeling needy. What human being in your situation wouldn’t feel needy? Why criticise yourself for it?”
Why indeed? Probably because I have built a life’s persona on being good at coping with things. My parents’ life had its ups and downs but they coped. They got on with it. They didn’t cry over spilt milk. They gritted their teeth. Nigel and I nicknamed my mum indomitable and she was, so I guess I learnt from that. Life sometimes deals you a rotten hand but you handle it. You make the best of things. You shrug it off. Or, to move into modern day jargon, you stay positive, you keep moving forward.
But I was stuck. I didn’t feel in the least positive. I couldn’t see how to move forward. So I sobbed away, and Caroline listened, and gradually I stopped sobbing and felt a bit better.
I know this sounds desperately sad. I was. But I learnt things (apart from that I was grieving for the latest tranche of lost hearing). I learnt that it was OK to admit that I wasn’t coping (which is hard if you are a lifelong coper) and get help. And I learnt that counselling helped. It really did. I recommend getting hold of some of it yourself when you next hit a trough.
All of which got me thinking about emotional support for people with hearing loss of which, I have to say, there isn’t a lot. I get huge amounts of support from my husband, from friends, from my local Hearing Support Group, from blogs (and blogging) and from on-line hearing loss groups but when it comes to any sort of official help, it’s hard to come by in my experience. Audiologists can be lovely, but they are trained in getting the best out of hearing aids, not in emotional support. Doctors and hospital consultants are ferociously busy.
I did once have Social Services ask if I felt that I needed counselling support. They were assessing me for a free smoke alarm for deaf people and I was intrigued enough to say that no, at that time I didn’t, but what would they do if I said yes? Their answer was that they would refer me to a local general counselling service; they didn’t know of any deaf-specific options. As I’ve since found out, a local general service turned out to be just fine, but maybe it would be even better to have access to people trained in counselling people with hearing loss? People tell me that such a thing used to be available in some NHS areas, but no longer, or at least not round here. And partners. What about them? Our partners need support too.
The only hearing loss specific service I know of is from the charity Hearing Link, who run extremely well regarded short courses (two types: intensive rehabilitation and self management) to help people adapt to the loss they have experienced.
What I experienced set me thinking. In 2016 I wrote a piece for Action on Hearing Loss magazine entitled, in my normal relentlessly positive manner, “My Top Six Survival Tips”. I still agree with everything in it.
- Know what to do when you are having a bad day (have your own set of survival strategies for times when you feel hearing-loss-miserable – mine are cook, read, watch a subtitled DVD, walk the dog……yours will be different, but know what they are so you can roll them out when you need them)
- Let stuff go (that is, decide to walk away from things you can no longer do, if trying to do them is making you unhappy).
- Find new things (to replace the things you have let go).
- Learn new stuff (always a great morale-booster, and our morale is often in need of boosting)
- Don’t underestimate yourself (often there’s a way to still do something you really want to do, even if it would be easier with better hearing)
- Cut people some slack (mainly, they are really trying to help).
But there should have been a seventh tip. Sometimes you need to grieve.
More than a bit deaf 
Dear Vera, I have now read your article a number of times and found it quite thought provoking and as usual very well written I had a Skype session with my daughter in Australia this morning and found it very difficult to understand what she was saying as she kept moving around, despite me as,I got her to keep still, but also although I could hear her voice the reception was not brilliant. I came away feeling very sad as my daughter was always the one person I could understand, but she has been away for a number of years and now talks quite quickly. I had never thought about counselling before reading your article, I assume I would have to go through a GP to get a referral, so maybe this is now an option to help me
Thank you so much for expressing what a lot of us feel.
Hi Patricia. If it’s any consolation I find Skype very variable. Sometimes the sound quality is good; sometimes it’s not. Sometimes the image is not in sync with the sound so I can’t lip read. Problematic. Some people say that FaceTime is better? On the counselling front it took a lot for me to admit that I needed help. You might be the same as me – too proud to admit it. Give it a go. You never know. I wouldn’t discount the NHS option either. My local GP surgery refers people to counselling services; the only issue is there is a bit of a wait and I reached the point where I didn’t want to wait – but your local situation might be different. Good luck anyway, and keep going. Vera.
Face time is wonderful! I can’t get on with Skype as there is so often a delay which makes lip reading impossible. Face time doesn’t suffer in this way and I can have a fluent conversation despite having a severe hearing loss. The only problem is you both need to be using an Apple device to be able to access it. I’ve yet to convert my son! He’s a dreadful “ “mumbler” and a conventional phone conversation nigh on impossible, he’s reluctant to be weaned off his android phone though! Good luck
Hello Heather. Many thanks for your advice about FaceTime. I did try to use it when I first bought my iPad but found the sound rather tinny also I have very good speakers attached to my PC for Skype and if my daughter is speaking clearly from her end there is normally no problem. I think it must have just been a one off connection problem as I often find if I log off Skype and then log back in again then the problem is resolved. On your advice I will attempt to use Face time again as there have been several IOS updates since I last used it. I have also sent my daughter a list of how to talk to people who are hard of hearing!!
Thank you again for such an inspiring article Jen Tomkinson
I remember reading your top tips in action for hearing loss magazine! Since accepting my hearing loss more, and letting go of some things that just became too miserable to persevere with, (I spent years I trying to be “normal”) I do feel more content. I searched for new interests that wouldn’t highlight the negativity of hearing loss. This can be somewhat of a challenge as a sociable person as I didn’t want solitary hobbies. My answer came in the charity “Hearing Dogs For Deaf People”. Firstly I applied for a dog and was accepted. I’m 18 months in now, awaiting a match. I so valued all the charity offers and became involved as a volunteer. It’s been fantastic. There is always something to get involved in, Ive met so many different people, some with dogs, some deaf and some hearing, but deaf or not everyone is completely deaf aware and every event accessible. It’s lovely to meet new people and exchange experiences, I take part in things I never thought I would and all the while raising money for a life changing cause. For me this has given me a positive slant on deafness. After all, had I been hearing would I have been able to have a lovely, fully trained dog I can take anywhere? ha ha! There are still many things I find terribly sad about hearing loss, but as I can’t do much to change the problem it has helped to change my attitude to it. Love reading your blog Vera!
Hello Heather.
What an inspiring story. It’s wonderful that you not only found a new interest but also that the new activity was so directly related to hearing loss. I love your expression “new interests that wouldn’t highlight the negativity of hearing loss” – what a positive, insightful way of putting it. I also love that you looked for something that would still allow you to be sociable. It’s tempting sometimes to retreat into solitary pastimes but it’s so important not to lose touch with the sociable world.
Thanks for all this insight and positivity.
Vera
Thank you Vera – again! I very much admire the fact that, in this blog, you are prepared to be vulnerable and admit to your feelings and fears. So much of what you write about resonates with me, e.g. the post before last on ‘selective hearing’. I am often ‘accused’ of not listening, e.g. ‘But you were there when this was discussed!’ I know that I am still grieving for the loss of so many things when I experienced massive hearing loss 12 years ago – music, changed relationships, being a counsellor. I worked as a counsellor a few hours a week, planning to do more when I retired from my full-time job, but continually saying ‘can you repeat that please’ to the client doesn’t really work!!
I have a good life and feel very fortunate to have a supportive partner and family, but the grief is always there. It surfaces every now and then and I have a good cry! Your blog is so supportive – thank you!
Jennifer
Hello Jennifer. Thank you for writing. It all, I think, exemplifies that hearing “loss” is a very good term for us adult-onset people. We had something, then we lost it, and the loss is real (and sometimes raw) because we can remember what it was like before. Vera.
It was a Hearing Therapist at our local audiology dept who referred me for a cochlear implant after I was sent to her regarding the tinnitus. and I found though it was not exactly counselling but talking to her was very helpful in making me realise how I felt. She was so helpful that after had the implant I got an appointment back with her to say thank you and tell her how I felt now I had the implant. i ave found the audiologists/speech therapist at Nottingham extremely good and easy to talk to.
However, I feel I have had a lot of support from the Facebook Group [Cochlear Implant Users UK help and support] and the social group that was set up by a lady to cover this area. Found talking to people with implant/deafness helpful.
Hello Josie. This wasn’t the audiology centre at The Ropewalk in Nottingham, was it? Nigel and I used to take his mum there (he was from Bulwell). It’s interesting that your hospital still has hearing therapists. I was talking to one of the speech and language therapists at the Bradford Cochlear Implant Centre a couple of weeks ago and she confirmed that all the hearing therapy jobs had gone round here.
Best wishes. Vera.