Sunday, June 25, 2006

My Low Vision: Revisiting The Pain Of Being Disabled.

I'm high up in the Berkeley Hills cat sitting a charming black, gray, brown and white 'from the pound' cat. She likes me, and is the first cat I've been around who licks me to show her affection. Think: tiny, warm and wet sandpaper strokes. There is true satisfaction in being entrusted with a beloved pet. I am amazed how badly some well-off folks get treated. If they didn't have extra money, I'd not have a job.

I get a deep satisfaction in caring for the animal, and also doing more then my job requires. These dear people are computer 'babes in the woods'. They have had a computer for three years and have never backed up their data! Since I believe paranoia is a survival skill, I've made it my business to back up their home folder. They were really surprised. How hard is it to be 'nice'?

When discussing money they added to my wage so I could buy my own food, but then went out and bought some stuff for me. I don't want to turn down a gift, but I felt I was being paid twice. The lady's facial expression totally changed and she decided to add MORE money to my wages. So, I have eight days with an older iMac, great lighting for print reading and wonderful food.

Being I am pretty good on my own Macintosh, I quickly went about making the adjustments I use for my low vision. I use the Dvorek keyboard layout. (Thank gawd, they had THAT!) But I have no reverse video, or zoom capability. No reverse video is killing my eyes. Things that are effortless and fun at home are slow, painful and difficult here. I'd completely forgotten how different computers and reading used to be. I'm not happy at the moment.

It is very tiring, mildly painful, physically uncomfortable and absolutely NO FUN! These folks have an older Mac with OS X 10.1.8. Tiny font settings, yahoo as their Internet connection and Internet Explorer 5 for their browser! I would gladly pay the $129. For the Panther update - but I know they will buy it for themselves. All of that doesn’t help me now. I am amazed I accomplished, however badly, all I've done with my low vision. But, I now remember why I am unemployable in most circumstances. It hurts and stirs up a sadness I usually don't have to deal with.

I have worked very, very hard, most of my life, attempting to prove to myself and everyone else, that I'm not REALLY disabled. I believed I could overcome it by working harder, longer and in spite of physical discomfort. It has taken God years to divorce me from an over-inflated pride. I can do a lot of things, but unless I have complete control over the computer. The gain is for-sure not worth the pain. I hated myself for years, when I finally resigned myself to being on 'the system' for the rest of my life. My psychiatrist asked an interesting question: "CyberGal, are you sure that refusing to beat your head against a brick wall, any longer isn't a sign of dealing with reality and not a personal failing?" My head knows he's correct, but my emotions still churn.

My working harder, longer and in pain is an example of NOT working smart. Working smart is my computer at home. Reverse video takes the eyestrain pain away. Keyboard under monitor enables me to sit up straight, while at the computer, which takes the neck and back pain away. Finally, being able to control fonts and font sizes turns very slow 'guess what it is' reading into the joy of gliding over text I am sure I am reading correctly. This older computer has the nice moveable flat screen, and if it didn't have that, I wouldn't be using it much at all. Now, I retell the story of a lens for every occasion.

I have bi-focal glasses for improved general clarity and an 8x bubble magnifier, for quick reading of mail, or other larger then normal things. All my regular ‘glasses’ have a short focal length of 1/4 Inch or less. I have my 'at home' 12x reading glasses, that enable me to read 99% of printed material. For travel and the tech magazines, which insist on printing examples in light, skinny, tiny fonts, I have 15x glasses that were rigged up for me with a jeweler's loop mounted (backwards) in a frame. Then we have the most difficult lens system I've ever encountered, the telescopic monocular.

This device does two very different things. With no reading 'cap' attached, it works just like a regular binocular. Since it has one tube and not two, it is called a monocular. Range in distance is about 3x - 4x. This two to three inch tube is indeed mounted in a pair of glasses, which are very heavy and uncomfortable to wear. They are truly a contraption, but with them I can read about 1 and 1 half inches away from the material. I do this with the 'reading cap', a 2x - 8x lens which fits over the end of the monocular, turning it from a weak telescope, to a medium microscope. Distance is everything, when to lean over a fixed keyboard, to read the monitor, causes one to push keys with their breasts! I brought down a database because of this very problem, at San Francisco State University. Needless to say, that database was not accessible to me any more!

These lenses can magnify from 8x - 40x. They require weeks to adjust to. I have to cover them with electrical tape to block out stray light. I still get headaches when I use them. They are my lenses of last resort.

I now can deal with the very real grief work of putting up with years of unnecessary pain in the name of trying to do the impossible. I could weep at my self-hatred and unabashed arrogance, which drove me for all those years. Forty-five, was the age at which I surrendered to being unemployable. Oh, sure, I have little part-time jobs, but I have never been able to make enough money to really support myself since Windows replaced DOS. I feel and accept sadness over that entire struggle.

Without God, His goodness and the knowledge that He can arrange anything, I'd drift into bitterness. I refuse to go there. To me, there is nothing quite as ugly as a bitter blind person. With better visual aids, I'm manning a website, running this blog, working with Real Basic and doing Bible research. As I see my continued 'growing up' I do still hope to leave Social Security for a real, self-supporting job, but my hope is tempered with the reality that 75% of blind folks have Bachelor's degrees, or Masters AND 75% of us are under employed enough to require Social Security.

My energy in leaving me. I'm hunched over a keyboard reading the bottom line on a slanted monitor, writing this blog. I realize, if I had a lot of my early years of pain to do over again, I wouldn't. That makes me really sad, as I did force myself to read many fine print books, attempt engineering, calculus, psychology and even looked into attending a seminary.

But, now that I don't have to prove the impossible, I can honestly admit, that after this eight days of fooling around with real print, and a computer that is not accessible to me, I will be less ready to buy a print book, or deal with any computer, but my own.

I have to admit to a small hope, of being able to work at my church's PC. After these eight days - six of which have passed. I thank God; I had the sense not to try it. I would hate to sob in front of my Pastor. Sometimes, there is sadness. I know joy will come in the morning. I know my friends love me and understand me, probably better then I understand myself. I know God loves me and is not mad at me for expressing some pain. I know someone out there needs to see this aspect of recovery. Maybe you have a different challenge. Low hearing, a paraplegic, or a quadriplegic. There is a place to tell this part of the truth also. I look at it like this. Once I can admit my sadness, I can pray to God to help me find a new perspective and to learn and grow from the sadness.

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