1. A Whole New World
It’s been a surreal and disorientating couple of days. My thoughts and heart are still very much with the friend I wrote about yesterday. The connections between her journey and my own are also occupying a lot of my mind. When something dreadful happens to someone close to you, the ripples are felt strongly and a lot of what I’ve been doing in the last day or two feels very much ‘going through the motions’ as all I want to do is go and give her a huge hug. I will talk more on this blog very soon about my wonderful friend and all of this will make a lot more sense. Not yet though.
Another very disorientating thing going on is my mind is that I can hear! I was diagnosed with sensory neural hearing loss a few months ago and, yesterday, I finally got my hearing aids. My hearing loss is moderate across most of the frequencies with severe on high frequencies. I have probably had a lot of this all my life. My mum always said I was deaf and tried to convince doctors when I was very little but they refused to listen as I could speak. I lip read a lot and have always hated talking on the telephone because it’s just not clear. I’m sure my hearing has declined over time but a lot of sounds I’m experiencing seem new to me. I’m not sure if I heard them before or if I have just forgotten.
A busy half term may not have been the best time to get hearing aids fitted. They recommend you start off using them in a quiet environment for short periods! It is a strange sensation. At the moment, it sounds like all the sounds around my are being amplified and fed into some radio playing inside my head. My voice sounds like a cross between how voices sounds when you have your fingers in your ears and how it sounds recorded and played back amplified. It isn’t natural sounds but I can hear so so much more. The best thing is that I can hear the children talking, I can hear birds in the town during the day, cracking and rustling of bags and paper, music is fuller and not so dull and flat as it sounded… I keep having to look or ask ‘what that noise was’ because there are some things I don’t recognise at all. It’s all fantastic but it is strange and it kind of messes up the other senses a bit while my brain gets used to it and balances. At the moment, I can hear all the background noises I don’t usually hear more than speech at busy, noisy times, I think because I’m not used to these noises and so my brain is more interested in them than the sounds I recognise. It will take a good three weeks or more for my brain to fully balance all of this but it gets easier the longer I stay in a situation. I was in town today with Wills and was about to take them out when we first got in. By the time we left I had forgotten they were in.
Hearing aid batteries last about ten days and the tubes need changing every three months or so. I have about ten weeks supply of batteries from the hospital but it dawned on me that I need some in my transplant bag. So, I popped into our fantastic friends at Croydon Hearing today who gave me loads of batteries for my transplant bag, enough for the whole time we are likely to be there and some spare tubes too. They are an amazing charity. I’d be lost without them right now. There is so much to learn.
My main priority now is something to hear the iPhone and the music I play through it. I can’t hear it at all held to my ear so have it on speaker for calls (not ideal when out and about) or through a loop system that requires me to plug it into a box then the box into a neck loop when it rings. There are so many systems, with very varying prices, for connecting with the phone varying from ear hooks, direct input shoes, all singing all dancing (and very expensive) personal loop systems that send almost anything you want to hear direct to your hearing aids…. For now, I’m going to get the cheapest and simplest option of the hooks while I look into things more. In fact, in January this comes out which may well trump everything available now…. Another whole new world has opened up to me, in many more ways than one!
Next week, when the children are back in school, I want to get out of the town into a quiet, country space and just listen to see what sounds are there. I also want to be near water, the seaside… I can’t wait to hear what there is out there that I have missed for so long or maybe never heard before.
This is some doodling about an idea I have had for a while now to write a poem about organ donation based on the concept of a mosaic. I'm not sure I have it yet but I'll share where I've got with it. You may well read some completely different ideas around this concept in coming weeks.
The jewels are yours to keep
The emerald memories
Gold and silver threads of time spent well
Red ruby passions
These are your treasures
Hold them deep within your soul
For the mortar that once bound these things
Can not hold them any more
You keep the jewels
But my emeralds are fading
The Gold and silver threads are frayed
My rubies no longer gleam
I can take the clay no longer needed
And make new mosaics where all can shine again
Give me the mortar that once bound your treasures
And keep hold of the jewels
3. Words and Music
Yesterday, I shared one of my songs. Music is really important to me as a writer. The mood, the key, the chords can add so much to words alone in conveying emotion and feeling. When I sit down to the piano I always gravitate to my ‘sussy’ chords (suspended) which tends to give my music a kind of melancholic feel but it’s not always sad in content. That said, I do tend to write more music when I am sad or moved by something. It’s interesting to me that, at the moment, I don’t play at all. I sat at the piano yesterday for the first time in ages, to see how it felt to sing and play a song with this weird ‘amplified in my head’ voice of mine. I played some old songs and not for too long. At the moment I feel that my emotions and feelings about the everything are pretty balanced, or at least they were before yesterday. If I allow myself to indulge in doodling on the piano and getting lost in those sussy chords I know the emotions deep down will become exposed and the balance will crack. So I am staying away from writing music for now. I am writing more words than ever before though and that is so therapeutic. That helps me to maintain balance. It’s strange, I guess we rationalise and work things out in words whereas music is an expression of raw emotion. If I was doing neither I would still not be as balanced as I am right now. I wouldn’t be on this journey either. I wouldn’t just think the thing you read on here. These things come through the creative thinking, sometimes self-examination and other times pure automatic free thought, that comes through writing.