Eyes Wide Shut

From my blog at: http://dreamsatstake.blogspot.com

I went to an all-girl, Catholic high school with only 44 students in my graduating class. Among other essential courses in science, math and english, every student had to take a typing class as part of the required curriculum. This, at the time, created quite a stir among some of us independent, strong-minded young women. I mean, really. <span style="font-style: italic;">Typing??</span> Did they think we were all destined to become secretaries?

But, of course, our protests fell on deaf ears. The powers-that-be continued to insist that we all sit in front of our (now extinct) electronic typewriters, dutifully typing "asdf jkl; " over and over again as we (or at least, I) rolled our eyes to the ceiling at the utter silliness of it all.

It's a funny thing, though, because that typing class turned out to be much more useful to me in my life than the more impressive courses like chemistry or physics. In fact, it may have been the single most useful class I ever took.

Here's why: something I have yet to mention on my blog is that I type with my eyes closed. Without looking at the screen (since my eyes are shut and all), I type out everything I want to say, then open my eyes to go back and look for typos. Fortunately, the plethora of said typos are usually highlighted in red, so I can spot them with greater ease. I fix a few, then rest, then go back to fix a few more, then rest, and so on.

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Once the typo's are fixed and there are no more bright red lines to mock my typing skills, I am then able to listen to what I wrote and make corrections as necessary.

I listen to what I wrote because I can't read what I wrote. Due to neurological problems that effect both my vision and cognition, I have been unable to read more than a few sentences per day for many years. Doing so causes a setback (or crash) that can take weeks, or even months or years to dig out of.

Fortunately, as this issue got to be a bigger and bigger problem for me, threatening my ability to even send or read email, my fiance began to search for free text-to-speech programs online. We found one that worked for me, and I have been using it for many years now. The speaker program not only reads back my own writings, but it also reads all of my emails, forum messages, comments, blogs, Facebook postings, and websites I visit. Essentially, I use the program to read everything.

I don't mention this to people often, as they tend to find it odd for some reason. I think some are taken aback that something with such a silly name as chronic fatigue syndrome could cause significant neurological problems and actually rob you of such everyday things as the ability to read or watch t.v. I also think others are weirded out by the computerized voice itself because it sounds so.. well, computerized. "Can you even understand what it's saying?" someone once asked me when they overheard my computer chattering away at me. I admit it takes some getting used to, but I've learned to adjust. In fact, I now welcome the voice, as to me it has become the sound of a familiar friend of sorts, one without whom I'd be lost.

I wanted to share this aspect of my disability because I know I am not the only one who faces this challenge. My fiance actually uses the program as well because he has the same kind of struggle. Many people with ME/CFS tend to find it more and more difficult to read, either due to the vision problems that often accompany this illness, the cognitive disturbances, the incapacitating fatigue or all of the above. And while for some this may be a mere, mild frustration (depending on severity), for others, it can mean a complete disconnect with the outside world. Compound this further with the difficulty of speech and interaction that some (like myself) also experience with this illness, and all means of communication are threatened to be lost.

So, in the event this program may be useful to some of you or someone you know, I thought I'd share it with everyone today. There are many different programs available; some free, and some at cost. The one I use is called Deskbot, and can be found at <a href="http://www.deskbot.com/">http://www.deskbot.com</a>. It's not the most advanced out there, but it has worked well for me. Please make sure you are visiting the company's direct website, however, as some downloads for this program come from questionable sites and may contain viruses. Always make sure your anti-virus software is up to date before beginning any download.

Another program is called The Natural Reader and can be found at: <a href="http://www.naturalreaders.com/">http://www.naturalreaders.com/</a>

This reader is actually a bit more sophisticated than my own, and when I'm up to giving it a try, I may make the switch.

Anyway, there have been a lot of other things I've also been hoping to write about these last many weeks... from XMRV news to the upcoming CFSAC meeting, to an update on my own health. Regretfully, I have simply been too ill. I've recently suffered yet another significant crash, along with the myriad of tremendous frustrations and disappointments that always accompany a setback. So, for now, I'm continuing to hold out hope, attempting to rest as much as possible, and am taking things moment by moment.

At this particular moment, I'm off to open my eyes and typo check. Wish me luck. :)

Comments

Thanks very much for sharing this. Way to take charge and find a way to still enjoy on-line communication! I think we're all pretty impressed by your perseverance!
 
I find that with my cognitive problems, I can still mess up and type the wrong word for things like calling a chair a hat LOL.

When I was in school, I remember going into computer class, and this was back when there was only DOS. I kept saying, what do I need a computer for. When will I ever need to use this thing. ROFL, now, it's my life :p

Lots of virtual hugs. I'm in a flare today, so I know. All these flare ups and crashes suck. I'm like totally braindead today.
 
LaurelB,

You are one hell of a woman (& I mean that in the nicest possible way).

Since reading your Blog, I thought you a great writer, but now I'm really in awe.

(I only did one term of typing at school & nearly failed - I hated it, but now computers & the abilility to type are the mainstay of many jobs).

I can only type looking at the screen (so I can backspace every time I press the wrong key). If I don't look at the screen, and my fingers don't type what my brain tells them to, it takes forever to correct what I'm writing.

Sorry to hear you've had another bad crash. I hope you are able to resume your "normal" routine very soon.

Living in the Moment is a most worthwhile occupation...

As Helen Steiner Rice said.....

There are two days about which we should never worry, and these are yesterday and tomorrow.
So with only today to cope with, the burden becomes lighter.....for we never stumble under the burden of today.
It is only when we add yesterdays and tomorrows to the load we are carrying, that it becomes unbearable.
 
LaurelB,

I always thought you a great writer & now I am really in awe.

I can only type by looking at the screen. My fingers don't do what my brain tells them, so by watching the screen, I can backspace every time I press the wrong key. Even so, I have to proofread my posts several times to pick up further errors....

So sorry to hear you've had a bad crash, hope you get back to "normal" routine quickly.

Living in the Moment is a great Occupation - it's highly under rated for people with chronic illnesses.

If one can stop worrying about yesterdays and tomorrows, you only have the lighter burden of today (to carry).

Life is much more manageable when you only have today to think about.
 
Thanks to everyone for such kind comments! I enjoyed reading (or listening to) them all. :) You are all equally inspiring to me.
 
I also went to all catholic school thru 7th grade. I took typing in H.S. as a lark and somehow passed with my hunt and peck system! I'm actually looking for speech to text software to help me out especially in a chat room! By the time I reply to someone in the chat room, Im a distant memory. LOL
 
All the college prep kids had to take typing at the school i went to.

Laurel, we are so lucky to have computerland. My sil was in a serious auto accident thiry yrs ago and during neurosurgery had a stroke. She recovered physically but had some aphasia. But much worse, she lost her ability to read and write. She tried everything and then went into a serious depression. When computers with the ability to talk appeared, it changed her life. I will forward your references just in case she doesn't have them. Be well.
 
Jimbob -- chat rooms are impossible for me.. much too quick for my slow processing brain! :) I went to Catholic elementary school as well (like you), all the way through HS. There are indeed speech to text programs out there as well, which I'm sure you could find with a quick google search. Someone mentioned one on my blog, actually: here's the quote:

"The first one I came across is "Naturally Speaking" @ http://computersoftware.suite101.com/article.cfm/naturally_speaking"

Andreamarie.... how sad about your sister in law, though I'm so glad she found a means around her disability as well. That's wonderful. Computers and current technology really are amazing. Can you imagine getting through this without them? I think the isolation would be unbearable.
 
Hi,
Just a note from me too, knowing you'll hear this rather than read it. I'd like to be able to adjust the computer voice to sound male, middle-aged, European accented and a little exhausted for realism. Well, maybe in the next version of Deskbot.

I am not as severely affected by ME but it affects my life big time. I type this using the mouse lying down. I want to look at Speech Recognition software. For some reason my back hurts when I keyboard type lying down.

best wishes
 

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