Sunday, October 26, 2014

Unlearning how to walk

Today, at the beach, Alannah was doing a great job of slopping jellyfish into her bucket, but she wanted someone to hunt them out with. By the time the water was half-way up to my knees, I knew I was in strife. The tide had just ebbed, but the tug was negligible. It was the sloshing more than anything. Not the noise, but the impermanence of the surface. I did not fall, but it took all my effort to remain upright, and to head for the sand. It left an indelible impression from which I am still suffering 12 hours later. An immense weariness, and insecurity.

I suffer from bilateral vestibulopathy.
I suffer from cerebral ataxia.
I suffer from peripheral neuropathy. But, I am wise enough to wear a pair of reef shoes.
But, I shall probably not go into the water again, unless it is dire, and even then, I know I will be unable to assist.

Just this week I found some posters on the Ataxia (UK) site that reinforced something I had been trying to explain in my own amateurish way back in April this year. A graphic artist developed this series of posters to explain the vision proplems that ataxia suffers endure. I include four of them here:
I watch Juliet, as she wobbles across the floor, and know how she feels.

I have been thinking about these graphic representations of my declining sight. What I see -or don't see - is not what YOU see here. I do not see colours, nor do I see part of the image displaced in this way. The part of the image that is displaced is just gone - empty. It doesn't sit out there. It is just gone. I do not get the whole picture, there are lateral fingers that have been removed. Say, for instance, that I am looking for my phone. Unless my head is totally still - TOTALLY - I do not get information. When looking for something, one "sweeps" the landscape, yes? This just means that the lateral fingers of missing image are constantly moving. Hence, I have visual information deficit, AND my head gets very confused, causing me to fall or clutch for something to steady it all.


Joan Elizabeth said...

Gosh that must be a challenge.

Julie said...


But I am meeting it ...

diane b said...

What can I say? It must be dreadful trying to cope with these problems and especially when others are not aware of what these diseases are. You are doing so well helping out with the children when you have this handicap. Hang in there old girl. Keep us informed.