Friday, August 12, 2011

Blind frustration.

There was a woman on the bus screaming into her cellphone. I fall over her bag which is sticking out in the walkway. On the street a man behind me is walking so close to my heels I can hear his fingers beep beeping away as he writes another dumb text message. The scaffolding is in a slightly different place from the last time I walked past here or maybe I am just 2 feet slightly to the right. Whatever the cause is, I shoulder crash into it and cause cellphone man to throw his phone up in the air in front of him cursing: "why don't you look where you are fucking going!" before he sees the cane and scampers off sheepishly into the distance.

It's one of those days, my mind is running slow and the calculations that I need to make as a blind person are not quite up to speed with my walking. It's being overwhelmed by the incessant chattering and constant movement of people with no levels of self-awareness. I am deaf as well as blind but I keep my ipod turned on because the music helps me concentrate.

I know I should slow down but I can't and I am asking for trouble. Cars, bicycles, fire hydrants, children, dogs, gyro trucks, bollards and scaffolding had better watch out because I am coming through and immovable objects won't stop me.

I rub the area around by shoulder where I bumper car'd the scaffolding and know that it will be a nice shade of blue tomorrow. Instinctively I also reach down and rub my left shin where I walked into the open door of the dishwasher a year ago and can still see the discoloration.

Some days are just tougher than others. It's the little things that really bug me more than anything. The pen that I just put down and then can't find it. The garbage that used to be there and is now over there a mere 2 feet away. A 2 foot difference that will result in me doing a superman impersonation right into it.

At the end of June I found myself at the Clearwater Festival in Croton-on-Hudson with about 20,000 other people. It was to be a nice day, a bunch of old lefties on stage like Billy Bragg and Pete Seeger and the family alongside me. Something in my head went horribly wrong.

It was my first time in a big crowd like that in a long time, and my first time ever with an energetic 4-year old in tow. The combination of the two freaked me out no end and caused a mental meltdown.

I'll try to describe what it feels like to be me and what I can see, but to be honest I can't really do a good job at it. Usher Syndrome is very inconsistent and some days are much harder than others. It's also an evolving situation as I get a little blinder every year, every day if my brain tells me to micro-analyse it.

My vision is kind of like looking through a keyhole. There is a very defined clear area in the center surrounded by a kind of fuzzy electrical field of light where the retinal cells are dying and confused. On days when I am tired the electrical field can come in towards the center and everything gets blurry. On those days I have to take my time and try to slow down.

The first thing that happened at the festival was that my daughter kept disappearing. She wasn't really but all she had to do was move outside of the keyhole and I would have a heart attack. This is bad enough when Me and her are at our local playground but in a crowd of 20,000 people it is positively stressful. Add to this the fact it was happening every 3 minutes and my brain starts to hurt.

The next thing is just navigating through the crowd itself. My wife is a great help, as she always is, but I have to keep pulling my cane in to avoid people falling over it or worse, standing on it and snapping it. This leads to a feeling of great insecurity as the cane is always supposed to be one step ahead of you. When you pull it back the pattern in your brain gets interrupted and you are essentially stepping into the void.

I chastise myself for being weak willed but then I think about who else has to put up with this shit? Who else has to fucking think about just walking to the end of the path without having an accident? Who else isn't allowed to turn off and is constantly stressed? Sure there are people but I don't know any of them.

When I get in this mood an incredible selfishness comes over me, I just want to get the fuck out of there and usually end up wondering why I ever thought it was a good idea in the first place. This inevitably makes it hard on others around me.

I miss the old days when walking was one of the ways I could relax. I would wander aimlessly along the Thames for miles and miles, following dirt tracks or making new ones through the bracken. I loved those days but now they are long gone, the dirt path confuses my cane and I would just fall over the bracken.

I get angry when I realize I am complaining about stuff over which I have no control, but at the same time I also get angry when I bottle stuff up and don't have a way to release my feelings. None of this stuff is going to get any easier, I just need to get stronger.

3 Comments:

At 12:32 PM , Blogger Brian Olewnick said...

Just wanted to say how excellent this page is, how strong the writing is. good job.

 
At 5:28 PM , Blogger Dave said...

Thanks Brian

 
At 7:08 PM , OpenID stuwho said...

Smashing bit of writing ... I really felt your frustration and anger, as I sometimes get so angry and pissed off with my own illness & relative disabilities, but ... like yourself ... I get angry at getting angry, and annoyed at getting annoyed ... and decide - Ah fuck it ... what's the point of being annoyed at something that can't respond

It's Life ... get on with it!!

love your strength, Dave

respect, ma man!!

And ... the piece about your Dad was incredibly moving, and touching and invigorating at the same time!

One of these days, I'll be able to write mine ... thanx for yours

xxx

Stu

 

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