There is a terror that freezes you stone cold when you realize that your world and how you predominantly interact with it, could be taken away from you. And there is nothing you can do but watch it happen. It’s like watching a car crash in slow motion. Except in my case it looks like the car just never stops skidding.
It is the feeling of your world collapsing when all around you everything else continues as normal. Reminding you of all the gifts you had and all that may soon be lost depending on where that rolling car hits next. My freedom. My speech. My communication. My friendships. My work. My laughter. My social life. My ability to travel, or to connect with people. Which bits will be affected?
Life is such a precious and beautiful gift. I love to be alive. I love that over the past year I’ve found new ways to live with my disability. I’ve learned to walk in the dark with lights and sticks…which meant I could go camping…which meant I could try and watch the stars which now move all over the sky in my eyes. And I’ve had fun and gone to places with people and made friends and involved myself in conversations taking guesses at what the content is. I missed a lot of jokes, but I felt like I had got the most important parts of my life back. I thought the virus was in remission and that I was winning. Everything was going to be alright! Life has been really good.
Maybe I was having too much fun. Maybe I took too many deviations from the protocol. The glass of wine here and the meal out there. I’ve had more sudden hearing loss and it feels like my world has changed direction, its collapsing in on itself. The ground is unstable and I don’t know where I will end up next. After the battles with the NHS for help and steroids and painful injections and waiting for the sound to come again and the tinnitus to fade away….what will come next? My future rests on whether the doctor I get gives a damn about finding a way to help me, and on whether it is possible to revive these minute cells in my ears which have been damaged by virus. What straw will I get? If the sound returns, for how long?
My right ear is down by 20 decibels taking the middle frequencies down from -40 decibels to -70 decibels. There is only about 10 decibels left before I hear virtually nothing useful in that ear. When I put a headphone into my right ear I don’t hear the music I hear noise. Like a crackly rumble of wind through a deserted house. It’s a sound of a war being fought between my immune system, my organ and the virus. It’s ugly and I don’t know what else to do to make it better. It’s been pretty much a whole year of my hearing remaining stable and so this is a very unexpected surprise. It’s not that I can’t live with this level of hearing loss, after all, my hearing aids can probably be turned up and still work, it’s that this is a slippery downward decibel slope.
This isn’t the first time I’ve written a post like this. I actually seem to have had a similar hearing loss back in early 2016 when I blogged about my same grief and terror. This gives me hope that it will come back as it did before. Forgive my repetitive outpourings.
I’m touched by the well wishes and prayers I’ve received that have held me through the long hospital waits and battles for doctors to treat me with urgency. I am by no means alone and am grateful for the love around me. But sometimes the words make things so much harder. I have a tendency to take words literally and so when people say “get well soon” In my head I’m thinking
BLOODY HELL I AM TRYING! this ain’t going away with no Lemsip darlin’!! My organ is failing so talk to the ear!”.
People care. They ask what happened? will it get better? what comes next? And when I tell them I don’t know, or that actually nobody knows anything about sudden hearing loss in the medical field of ears; all they do is look at me with sympathy and say a loud silent “ahhh…there there”. And if I didn’t feel sorry for myself already, that just pushes me over the edge making me feel even more alone. And maybe I didn’t even want to talk about it. Obviously its a hard time for me so we don’t need to state the obvious. So in the end it’s easier to just toughen up and change the subject to save myself the agony of other peoples awkwardness…and this ensures that I never get the support I need which makes it all feel loads worse. It’s like some dark comedy!
Everyone means well. It’s not their fault. They don’t know what deaf means. They can’t switch off their ears and see what alone-ness deafness is.
What do we really want instead? (‘we’ being everyone in my position, who is sick, disabled, dealing with loss etc.). We need to know that someone will be present for us in the hard times. That someone loves us enough to see us raw, real and vulnerable, and not turn away because it is too difficult for them. They won’t underestimate the degree of the problem by providing affirmations or a new magic cure to try. They were around long enough to see how much has already been tried, and that sometimes it is stillness and presence not more activity which is required for a soul in distress. Love is what soothes….
I will be there with you through the thick and the thin. Through the ups and the downs. The days and the nights. The losing and the gaining. The tears and the playfulness. I will be watching and cheering you on as you learn to take a step at a time back to life. I will be there through it all. We go through this together. I will help you. I will speak louder for you. I will remind others to speak louder for you when you are tired of asking.
Everyone who has contacted me has said they couldn’t have got through it without their husband, wife or mother being there for them in this way. These angels are what gets us all through.
I rely on my faith in spirit and my soul to be that support for me. Lucky for me I have plenty faith in the non-physical world and my shamanic training and practices have allowed me to know I have a whole troop of invisible helpers that guide and assist me. Perhaps the entire purpose of illness is to turn us inwards, to our feelings, to some sense of spirit, whatever that is for us; to force us to gather and develop our own resilience and strength. Maybe for people like me who have so much activity in their lives it is the only way to make us stop and take note of what’s really important. To help us to remember not to neglect ourselves.
So I’m putting my life temporarily on hold so I can grieve, soothe my worried soul, and nourish it with nature, sleep, wholesome food, vitamins and any loved ones who offer their presence. I will ceremoniously take the methylprednisolone which I waited for 6 hours in hospital for, and pray to the gods of the ears to wake up my sleepy ear cells and raise them back into action sharp and clear, so I can continue my work helping others in my therapy practice. It looks like my birthday will be cancelled for the third year running thanks to this little reoccurring problem. Hopefully I will have a reason to celebrate soon when my ear recovers.
Part of me feels embarrassed sharing so publicly. I also know there’ll be 100’s of others out there feeling this way right now that may find comfort from knowing they aren’t the only ones going through it. I know that somewhere, sometime, someone will need to know that what I speak of now, is survivable, whatever the outcome. No matter how distraught, frightened and alone we feel, this time too will pass. At some point in the future there will be great joys though we can’t imagine that right now.
I will return in a few weeks and let you know if the drugs and injections worked for me this time.
Eventually, I will tell you how everything was okay in the end.