There’s so many things about a brain injury which are difficult to deal with, but probably the most fundamental is accepting that you can’t do things as easily as you did before. We often can’t even recognise what we’re struggling with to begin with until we look back at an event with hindsight. I’ve mentioned before in Lack of insight when brain injury strikes how this can affect me in strange ways, and quite frankly, can leave me feeling a little ashamed at my abnormal behaviour. Maybe that’s why I sometimes find it hard to accept that I need help with certain things because it means I have to acknowledge my problems.
Accepting support is so much harder than it sounds.
Actually I thought I’d become much better at accepting help, and I guess I had, but there was one more thing that required me to swallow my ego to deal with. Even as I sit here now, writing this post, I don’t feel comfortable opening up about what I’m about to admit. Not because it’s anything to be ashamed of, but because I have to own up to my disability which I find distressing. Previously in Tinnitus, the loathsome bells of brain injury I’ve told you about some of my hearing problems. Now the eagle-eyed amongst you with have spotted that I wrote that article almost 5 years ago. (Oh my, have I really been prattling on about brain injury for that long? Thank you for continuing to put up with me all this time.) Even though I have been living been this issue for a long time now, I have only just put serious effort into accessing a long term solution. Why? Because I knew I had some hearing loss and I was frightened that I might be told hearing aids would be the only answer. I didn’t want to have to face that because I didn’t want the world to see them and know I have a disability. The irony of that when I’m have complained about living with an invisible disability for so long isn’t lost on me.
I had been mishearing what people were saying and constantly feeling like I needed to either turn the TV up or have subtitles on to make sure I followed the dialogue properly. So finally I had an appointment with a private audiologist who confirmed my fears. I have moderate hearing loss which will be at least contributing, if not the primary cause of my Tinnitus. I have no doubt that my brain injury has exacerbated this and left me in this position. Although the news did not surprise me, I was deflated when he told me I should have double hearing aids. My left is worse (as is my leg, arm and well, everything following my brain injury) but I still warranted assistance for both ears.
I’d been trying to avoid having a device to support my hearing because I didn’t want people to SEE me as a disabled person.
As I’m in my late 30’s it’s not considered usual to have this level of hearing loss. The hearing aids the NHS hand out to patients here in the UK are large and very noticeable. My fear was that they would be uncomfortable and that people would see a “deaf woman” rather than me. That’s why I chose the private route. I know that this isn’t an option that many can consider, but honestly I would have just continued to tell myself that I could deal with it and try to ignore the problem. Fortunately, at a price, they were able to offer me hearing aids which are small and unless you look very hard you would never know were there. I don’t know why, but it still makes me feel less of a person which is stupid because I hold no judgement of the deaf community at all, so why am I any different? I guess the ego has a habit of holding ourselves to a different standard to that of which we have for others. Rationally, I realise that how well a person can hear holds on bearing on everything else about who that person is, thus it’s irrelevant to everyone else. But my ego and I need to get comfortable with our new reality. It’s been less than 2 months since I started using the hearing aids, and I’m slowly getting there. I haven’t told all my friends about them yet, for some crazy reason writing it here first feels like the step I need to do. Once I’ve put it out there to the world I don’t have to talk about it anymore. Either people will read it so everyone has the opportunity to learn about it at the same time, or they’ll notice them and bring it up. This way I don’t have to keep talking about it. That’s something about me that I have some to recognise, it takes me a lot of time to get to the point where I feel able to have open conversations about things which I’m feeling awkward about. Like when my car accident and subsequent brain injury happened: it was many many months before I told people what had happened and what I was going through.
I’m telling you this because I think it’s important to explain to people how it’s not always easy to accept what might appear to them to be a simple solution to the problem. It’s not that we feel the need to carry on like we’re some kind of martyr, it’s that we need to be psychologically and emotionally ready to acknowledge what that means for us. I’m not saying we’re overly egotistically, but human nature is such that we need time to feel ready to welcome the change.
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4 replies on “How ego makes accepting support after a brain injury challenging”
Wow, Michelle, this is amazing timing to receive your email with your blog today. My hearing has been terrible lately, I suffer from very waxy ears and have to have them syringed before my brain injury. Now I have had brain surgery they won’t syringe them, they will only do suction, so this also led to having a hearing test. The result being the brain surgery has left me partially deaf on the left with tinnitus in both ears but worse in my left. This was a bit of a shock, to be offered a hearing aid. I’m no stranger to hearing impairments, as my job before the brain tumour and surgery, was an interpreter for the deaf in schools, I would do sound checks and troubleshoot hearing aid problems for the children I taught.
This last 18 months my tinnitus has gotten worse and with no audiology appointments for suctioning being available due to Covid, I find myself struggling to hear at all in my left ear. Today I contacted my doctor for a referral for audiology, now restrictions for Covid are more relaxed, to get my ears suctioned and I was mulling over, do I get a hearing aid now?
Why am I struggling to hear when I know hearing aids could support me? Am I so vain, that I don’t want people to judge me?
Thanks for your honesty, or even your confession, it’s motivated me to stop mulling over this and be proactive. Once again Michelle, you are speaking words of wisdom, that communicates and helps just when we need it. Best wishes with the hearing aids. Your bravery motivates others.
Whilst I’m sorry to hear that you have been struggling with your hearing (no pun intended) I do like the idea that I might have helped you move forward with making decisions about how to deal with it. I hope you get the support you need so you don’t need to continue to struggle.
After my surgeries and I now have a brain injury which has resulted in aphasia, memory issues, low processing speed, cortical vision loss (homonymous hemianopia), difficulties with left to right side coordination amongst others. Most people who don’t me wouldn’t have any idea of any of these things as I’ve learnt to cover or adjust enough that it’s not noticeable – except my loss of vision. Because I use a white ID cane, I unfortunately attract a lot of unwanted stares and attention. My ego says I don’t want to stand out, but it’s dangerous for me not to use my cane. I have zero peripheral vision and can’t tell what’s coming unless I’m looking right at it. At least my cane identifies that I have vision issues so hopefully people will get out of my way as I can’t see them to get out of their’s! People don’t understand that I’m not completely blind – I’ve lost just over half of my vision. It’s a daily occurrence of people staring me up and down as they don’t realise I can see them, they talk loudly to me as if I’m deaf or talk about me right in front of me. The ego wants me to retort back, but if I do that wveey time someone is being rude, then I’ll end up being the ‘grumpy blind girl’. The stigma of disability still unfortunately makes me feel a little embarrassed about my brain injury.
I already have enough to deal with sight-wise without others needing to know about my brain injuries. I prefer not to discuss it as some make you feel stupid and can be very patronizing and condescending..
Those people are rude and ignorant. Dare dare they make us feel ashamed to the aids we need to live our lives and leave us wanting to hide them. They are the ones who should be ashamed because they can change their behaviour, we can’t change our disability.