I went to get an eye test at an optometrists the other day – protect my one beautiful remaining eye and all – and they asked me 4 times through the process why I’d decided to go get an eye test. I kinda thought it was just something that people did when they felt they needed one. But 4 times I said ‘you see… I lost my eye at the end of last year… Well I didn’t lose it, that would be irresponsible. It was removed…’
Surely you’d think those notes could have transferred across staff members? Though I guess I got to deliver my hilarious line and get 4 separate laughs for my efforts so it can’t be all bad.
Plus she said my eye was a beautiful colour. Maybe I’ll go back there again.
What else to tell you… Not much has been happening really, hence why no updates for a while. Since the old ‘rummaging around in my face with no anaesthetic‘ experience I’ve just been waiting to hear from my team. Nothing yet.
I did have two CTs and an MRI though. And my second Vax. I’m now fully vaxxed.
The MRI probably deserves a mention. But refreshingly, not for the usual reasons.
My dear friend Rosa ended up coming with me. Yes, I actually allowed someone to accompany me, which is not a regular occurrence.
‘I brought my emotional support human!’ I told them. ‘She will be coming in with me.’
Not like… into the machine, but definitely into the room. If could have fit her in the machine with me, I’m sure I would have tried. Clarence came in though, of course.
The radiographer was wonderful, he had a really calm and lovely way about him, and he immediately put me at ease. And for some reason, he got the cannula in first attempt, with practically no pain and causing absolutely no issues. (as opposed to a CT scan a few weeks later that took them 4 goes and a lot of drama, but then again… I didn’t bring Rosa to that one, did I…)
Then the terrific Rosa came in and held my feet through the whole MRI and said helpful things like ‘I can see your whole body in the machine!’ which made me feel like I wasn’t zoomed off to outer space in a tiny tube.
As my friend Liz says, ‘The MRI machine is the loneliest place…’ And she is so right. Unless you’ve got a Rosa to tap your feet along with the machine beats while you dance your feet from side to side and shout ‘I love you’ back and forth to each other between scans.
See, I’ve been told that with the latest lot of metal and implants etc. in my face, I can’t get my MRIs on the machine that plays music anymore, because apparently the magnets are too strong in that one. So no more music, but it turns out Rosa does a better job of taking my mind off it all anyway. I had quite a nice time, recited some poetry, danced (while staying perfectly still, of course) and it went quite quickly, really. I also went home and started working on a song based on one of the patterns the machines made.
But aside from that, life rolls ever forward, as it is prone to do.
Not much else has changed, I’m still dealing with the same old things….
The fear of food disappearing beyond my mouth and up into my face,
The feeling when it does
The pain of taking the teeth/plate out to clean
Only being able to clean things partially… I can feel with my tongue where food is lodged, in the depths beyond my mouth, but I can’t seem to liberate it….
The yet greater pain when I put the plate back in
The constant drowning when drinking, which gets ever more persistent as time goes on
The way it gets more difficult to talk, and still I wait, to hear anything
The nerve pain in my face (and accompanying, persisting nausea and exhaustion) that has me lying down on my back, eyes closed, trying to meditate in the hope it will chase the pain away. It never does, time is all that brings respite, though never for long.
The scans that show ‘maybe something or maybe nothing, we can’t really tell, we’ll have another look in 3 months…’
Being caught in between states where people say they hope things are getting better,
While things get worse,
and still I wait.
Until something changes
so I can move forward
along with the ever rolling time…
I’ve had the time to get some music online though, so that’s fun. I had the foresight to record some vocals before they cut my face apart again. I’ll share here in case you’re at all interested to see what I’ve been up to. More to come soon.