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