Month 10 – more hearing loss, steroid injections & the grief
Lots has happened. After my last post I had to concentrate on various practicalities. Having been off work for 6+ months my pay dropped to half and I was concerned with how to make ends meet. It takes quite some time and effort to navigate the benefit system and work out what you’re entitled to. They don’t make it easy for people and you have to jump through hoops to get anything. I can see how the people who need it the most might not know what they can get. Call (UK) Citizens Advice if you are sick or disabled to get help discovering what benefits you are entitled to.
My time was (and still is) very much spent hobbling around going to different appointments – physiotherapy, psychology, neuro-otology, hearing therapy and then all the other stuff – food intolerance testing, energy healing, spiritual readings…pretty much anything I could get my hands on that might help – not just to heal my ears but also to keep my spirits up in the process.
My walking and balance has very much improved and as long as there aren’t too many people around me I can walk well without my stick. Its only in the dark, busy places or on uneven surfaces I walk like a drunk. I’m also becoming more accustomed to the oscillopsia and am finding that I can keep my eyes on the road when I’m in a car without my eyes bouncing out of my head, though everything continues to bounce. I feel confident that I will be able to drive again eventually.
More Hearing Loss and More Intratympanic Steroid Injections
Unfortunately in October my hearing dropped again in my right ear. Words became a mere buzz, and my world fell apart. I was devastated to learn that despite all the therapies, detoxification and self-care I was devoting myself to, I hadn’t been been successful in preventing further hearing loss. For me it was earth shattering. Already my life has been irrevocably changed, the prospect of going completely deaf is simply unimaginable.
So I spent a month going back and forth to UCLH hospital for my second set of intratympanic steroids to the middle ear. They give 3 injections one week apart. This time they were excruciatingly painful. The first one left me shaking, totally traumatised on the hospital bed as they hadn’t properly anesthetized me. It was unbearable pain and I was pretty shocked by the lack of care in the hospital as all the nurses seemed to go home and just leave me there in the ward. (Please don’t be put off by my experience as I’m sure this isn’t common and if you have lost hearing it is vital that you try the injections whilst you can – its a small window of opportunity).
My hearing in my right ear lifted back to pre-October levels and I was overjoyed. But a week later it fell back down. The impacts of the steroid injections had been temporary and all the pain was all for nothing. My hearing aids were simply turned up because no-one knows what else to do. My neuro-otologist at UCLH who is one of the best in the country basically looked at me blankly and said they have no idea what will happen next or what they can do to help.
I have learnt about grief
There comes a point when there is absolutely nothing left to do. We can cry, beg, pray, give up, hope for it to end. Nothing will take away grief. We can only learn to carry it. We grow stronger and more accustomed to holding it and eventually we find we are better equipped to bear the weight without collapsing underneath it. Eventually we have no choice but to surrender. We hold on tight, pull ourselves together and stand up taller and go again, this time even more courageously to face whatever destiny is on the path we stand upon.
Life will sometimes destroy us, just so we can be rebuilt again in a new form.
Whilst we all like to think we have everything under control, steering our ship in a particular direction, there is a much bigger force than us at play which knows better for us. When things aren’t going our way we have to just find it within ourselves to trust the force, and in the strength of our own spirit to not just get through, but to always find a way to thrive.
I have come this far and there is a peace and an inner strength in me. I know the magna-enormous, strength, courage, determination, self-love and care it has taken for me to get here from where I was in February – reliant on others yet abandoned by those very people – to where I am now. I know that whatever happens to me I will always find happiness, pleasure and fulfillment somehow. Once upon a time I needed places, people, dancing, travels, adventures and movement to fuel my fires. Now I realise that true pleasure comes from the simple things – sincere connection with friends and people around me, a healthy body, laughter shared, creativity, learning, my spirituality and mostly mostly – the beautiful side of humanity – those unexpected acts of kindness which bring me to tears because they are oh so precious and beautiful in this crazy world, the friends who show up when you least expect it, the tender hug without words that just wants to help.
And I will always miss my former self, the one who traveled alone and sung and hopped skipped and danced. The one with the perfect hearing who didn’t need equipment or batteries and who could go anywhere she wanted unassisted, and talk to anyone at anytime. The one who ran through fields or just didn’t do any of those things but who always assumed she always would and would do more of it later. Every now and then the grief of missing her overwhelms me and I break again under the sorrow of what I remember I have lost. It’s like she is the ghost of a child I lost and I desperately yearn for her back.
Sometimes the grief is for the harsher side of humanity – for those who don’t understand what I go through, the ones who barge past me and almost knock me down to take the last seat on the tube when I am carrying the walking stick, the friends that didn’t call or visit, the people who tell me “you’re not deaf”…all those inconsiderate ones too wrapped up to notice the potential for love around them.
And when that grief arises and floods out of me like big fat breaking open of my heart, it moves out like a river towards the sea and I just let it go until its gone (for now). And if there happens to be a friend nearby who ‘knows’; who is wise enough to hold me without words; then the space of grief is filled by the love of their kindness….and we dry our eyes, smile at each other and carry on. In that way the grief brings forth a tender moment of understanding and intimacy between two people and that I find very beautiful.
I know I am a new me now and I will find a new way to live. I didn’t think I would be able to walk in a straight line and now I walk so much better. At one stage I couldn’t bear being around any noise with hearing aids and now I can wear them everywhere. For those of you who are grieving; who have been changed irrevocably through disability, illness, loss or whatever…as my best friend in the world said….this time will pass. It will I promise you, as you learn a new way. Things will get better. Cry as much as you need to. and then bring yourself to the moment (try not to ponder on the past nor worry about the future), look after yourself as if you were your own best friend, all that matters is right now and in the right now moment you can find pleasure. If you don’t know what next, watch this video! Call upon a friend, find new friends, ask for help. Someone will respond to you.
If you are with someone who is grieving, who is hurt. Please don’t tell them it happens for a reason, or they need to DO something to fix it. Don’t tell them they created it as this is an over-simplification of a much deeper spiritual understanding (not to mention, completely in-compassionate!). Deal with your own discomfort and then take an opportunity to be there for them by showing you care and simply being there, without words. I love this article by Tim Lawrence
My little update has turned into a thesis! 🙂 I’m having a bit of a rant because I think this stuff is important. As a past life therapist and spiritual explorer I can tell you with great certainty that our purpose here is to help others. There is something great about those moment when we step up and be a comfort to another in pain. Its sad when we miss those opportunities to share tenderness and vulnerability with those we love.
Thanks for reading this far I hope I have shared something that resonates with you today. Please let me know what you think about these things I have shared
December 20, 2015 @ 10:55 pm
Candice, this is incredibly powerful and moving. It sounds as though you have an amazingly evolved and old soul. I am in awe of your strength and courage. Having experienced SSHL in June this year in my left ear, moderate loss, you words truly resonate with me. In the depths of my despair my best friend also told me ‘this too will pass’, and she was right. And I will be careful to also apply this when life is going well too. Humility and taking pleasure in the simple things, love, kindness, health – is my new way. So much respect, Sasha x
December 20, 2015 @ 11:22 pm
Thankyou Sasha for your beautiful message. Praying your hearing returns again and this difficult period passes for you super-sharpish!:) Many Blessings xx
Anna Jean Mallinson
December 20, 2015 @ 11:09 pm
Thanks for this report. I’ve been wondering about you and really appreciate your generous sharing of your ordeal and what you are learning from it. I am a seasoned wobbler (1988) but have been struggling recently with serious diminution of hearing and the loss of vision in one eye, which has somehow brought my oscillopsia back in full swing. Reading your account helps me. Your reflections on what you have lost, on the grief for the old you, your old life are profound and touching. You pick yourself up again and again, look around to see what is left, find out that it is more than enough to make a life, and set about doing it. Blessings to you over the Christmas season and for the New Year.
Anna (1988) Canada
December 20, 2015 @ 11:19 pm
Hey Anna, thanks for your comment. The online community has been so vital hasn’t it, in providing support and understanding for each other. I’m sorry to hear you are still dealing with ongoing issues after all this time and to think all this happened from a trip to hospital, makes me crazy angry. I’m sorry. I hope this is just a blip and that your hearing and vision will return and stabilise. You are strong to have got yourself thus far. Keep drawing up the rest of us here that care. Blessings to you x
December 20, 2015 @ 11:22 pm
Hi Candice thank you for explaining how you feel and how you are coping with your balance and oscillopsia symptoms. I’m in England and had an oto-toxic reaction to gentamicin in 2011 – I was being treated in hospital for pneumonia and kidney stones and woke up one morning so dizzy I couldn’t even sit up straight. I had to use a wheelchair and couldn’t even look out of a car window as everything was spinning. I live alone so have had to fend for myself a lot of the time. Now 4 years later I am improved to the point I can walk using a walking stick but I am scared to go outside alone. Walking along a pavement makes me feel like I will fall into the street (in front of a car) and when I try to cross a road I feel like I am stepping off into a swimming pool. It’s a very scary feeling and everyone expects me to have recovered after 4 years. Fortunately I am generally ok in the house as long as I take things slowly and don’t make sharp head movements. I hope to continue to improve as I want to get back to driving again. Hope you improve too, this is a horrible thing, your video of oscillopsia vision is great by the way. All the best, Christine
December 20, 2015 @ 11:35 pm
Hey Christine, Thank you for your feedback. Gosh that’s terrible that you’re still not walking well outside after all this time. Did you get VRT/physiotherapy? This was a major part of the adaptation process for me. I also couldn’t lift my head in a car but now mostly I can keep my head up and eyes open. I also didn’t have much help so had to force myself to travel to and from appointments and I suppose over time my brain started adapting and I became more and more courageous to move beyond my comfort zone e.g. tackling shops etc. I know it can be scary to go outside when the world is jelly. Can you make tiny little trips (if you’re not already doing so)? The Wobblers Group really stressed the importance of keeping moving as its what helps the brain to adapt. I wonder might you have some vestibular function left which is adding to a sense of vertigo/dizziness? I will email you.
January 16, 2016 @ 9:40 pm
Great blog Candice.hope to see you sometime soon.
January 29, 2016 @ 9:06 pm
Iam deeply impressed by your block and your story as well.
I am 25 and have been going almost thought the same process as you did. Althought the physicians never diagnosed an autoimmun disease its more like a good guess by them. Only the bilateral vestibulopathy is clearly diagnosed.
Especially the hearing fluctuation seems similar to me.
When my hearing change all the time it was like a living hell for me, because I could never know how my hearing would be the next day. I was almost glad, when I was completely deaf because there were no more fluctuations anymore. Today I am completely deaf and wearing two Cochlear-Implants. I can tell you that the I feel that the dizziness is more challenging than the hearing for me today.
This permanent insecure sucks. But I am optimistic that my brain learns to deal better with this situation or there will be new developments like a implant for the vestibular system.
But to be honest… there I some days its hard for me to stand upright (metaphorically speaking) because everything seems so unfair and I feel so unhappy and sad.
I hope your hearing gets better. But if you have any questions about the Cochlear-Implant I would be glad to help you out as good as I can.
Theres a quote I want to share with you. From Seneca a Roman philosopher. I am translating it, so it might not be 100% accurate…
“For the gladiator its a shame to get a weak opponent. He knows a victory without risk is a victory without honor. The fate acts the same. It picks the strongest.”
Sorry for my bad english ;-D
Greetings from Germany
January 29, 2016 @ 11:31 pm
I’m so sorry for your loss. I would love to learn more about your story – perhaps you’ll consider writing a guest blog on this site? a few other people did already. If you like you can send it to me by email. When did you first become unwell? It does sound like AIED (which I think is a virus) but most ENT doctors don’t know much about it so its not unusual that you didnt get this diagnosis…not that it makes much difference anyway. I’m glad the cochlear implants have worked well for you – a miracle…and Vestibular implants will be available one day, we can just prey it happens quickly. Please do your VRT exercises and keep moving, walking etc it really helps the brain to compensate.
It is a beautiful quote! Yes we are strong ones to walk in a world so unstable.
June 20, 2018 @ 11:40 pm
Can you wear a cochlear implant. It is a world changer. Sorry if I missed something and thus us not possible.
June 21, 2018 @ 12:11 am
Hi Debra I hear so many positive responses on cochlear. They won’t give them to me as my hearing is not quite bad enough yet. My thresholds range from 40-90 but youbgave to be pretty much all in the 90s to get cochlear in the uk.
January 25, 2019 @ 7:22 am
This is very well written and relates to what people experience with many diseases. I’m grateful you were able to recover some of what was lost. Looking forward to reading the nextpost.