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.