Comments on: How ego makes accepting support after a brain injury challenging

By: Michelle #jumbledbrain

Michelle #jumbledbrain — Fri, 09 Jul 2021 09:08:14 +0000

In reply to RelleJayne. 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.

By: RelleJayne

RelleJayne — Fri, 09 Jul 2021 07:14:26 +0000

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..

By: Michelle #jumbledbrain

Michelle #jumbledbrain — Thu, 08 Jul 2021 21:02:16 +0000

In reply to Joanne Wood. 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.

By: Joanne Wood

Joanne Wood — Thu, 08 Jul 2021 20:37:54 +0000

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.