Balance

We have three modes of balance. Usually, they work together to ensure we know where we are in space and which way is up. They also work together to keep us from toppling over.

I'm talking about the vestibular apparatus and semicircular canals of the ear, the cerebellar lobes, and general proprioception of the body. In my 3rd brain op (in June 2021. I will get round to writing about the 2nd op, which took place in June 2017), the balance organ on the right was destroyed by the tumour and the relevant cranial nerve had to be severed. Not usually a problem (apart from becoming deaf in that ear) but the tumour had become entangled with a lobe of the cerebellum as well and that was necessarily damaged in surgery (there was already damage from 2017, of which more anon). This left me only my untrained stand-alone proprioception to depend on.

At first, I simply fell over even when sitting. My head lolled to one side without me even being aware of it. With practice though, I can sit straight without toppling (unless I lean too far to the right) and after the first couple of weeks I could hold my head straight. It took longer to learn to stand unaided. At first I simply fell helplessly over - thank goodness for the constantly vigilant physiotherapists by my side! A year later, I can stand alone for up to 30 minutes, though I always have something to hold onto if I need it and the bed to fall onto if I should fall. At first I stood like a baby with feet well apart. Now I can stand with feet almost together and I can sway without falling over. Indeed, swaying and turning my head has been part of my balance practice.

All is not perfect. My movements are somewhat jerky as I move my body, but the swaying is smooth and being able to stand and look out of a window like a normal person is deeply pleasurable and satisfying - things we usually take for granted.

An odd and thankfully temporary effect of the loss of my right side balance was the most alarming feeling that would happen without warning - usually when I woke. The entire ward seemed to have tilted 90 degrees. I would cling desperately to my bed rails, convinced that if I did not (although I was lying flat on my back) I would slide off the bed, which seemed to be vertically on its side. The nurses moved disconcertingly along the "walls", the ceiling formed the wall and the windows (we were on the 2nd floor) formed the floor to my world. I felt like I was in The Exorcist. One of the nurses, seeing my terror when it first happened and hearing my description, evidently thought I was possessed (I later worked out) and she conducted an impromptu exorcism. Quite a surprise, but the nurses were very sweet and truly wanted to help their patients.

This sideways tilting eventually came to an end when I realized that the world was not really tilting and I began investigating the phenomenon. After my 2017 op I had been left with double vision when I looked to my right and upwards to the right. Over time, I naturally came to avoid that region of vision. Curious what it would look like in that area, I looked up and rightwards. Instantly the world righted itself and I no longer felt myself falling. For the next days all I had to do was to look up to my right to stop the 90 degree tilt immediately. After a few days my inner ear started behaving - or rather, my remaining inner ear took over how I experienced the world.