Saturday, May 1, 2010

Eyes Wide Shut

I went to an all-girl, Catholic high school with only 44 students in my graduating class. Among other essential courses in English, math and science, every student had to take a typing class as part of the required curriculum. This, at the time, created a bit of a stir among some of us independent, strong-minded young women. I mean, really. Typing?? 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.

Photo from Getty Images

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, depending on how far I push it.

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 are free and some must be purchased. The one I use is called Deskbot, which can be found at It's not particularly advanced, 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:

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 but, 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 taking things moment by moment.

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


  1. Laurel, your posts are always beautiful and so very informative. I can't imagine the number of people you've helped along the way. It's inspiring how one person with a huge disability can make a difference.

    I laughed at the typing story as I too was one of those girls. I hated typing class and now look how important it was!

    As always, you're in my prayers. Take care,

  2. Laurel, thanks for this valuable information. I can't read for very long either. I wrote the book I have coming out a sentence at a time, over a couple of years.

    I'm going to check out the resources you mention.

    Your courage never ceases to amaze me. You are inspiring.

  3. I have been wondering how you did your posts with the severity of your symptoms. What a great solution.

    I'm just curious but don't they have programs out there now that allow you to speak and the program types for you?

    That sounds like it would be the icing on the cake.

    Hang on for a minute...I just checked. There is actually.

    The first one I came across is "Naturally Speaking" @

    Anyway, I digress.

    Thank you for sharing this. I have actually thought about getting a program not so much for the fatigue alone but because my hands get so painful, it hurts to type. I don't write in long hand anymore for that reason.

    Additionally, it's easier for me to speak my thoughts on most days than to write/type them out. It takes me several hours to write a post and edit it, so this would be a time saver for me.

  4. Thanks Lori, Toni and Dominique for your kind and thoughtful comments! You are each so sweet.

    Lori... typing class really did seem so silly at the time, but I am so grateful for it now!

    Toni.. I hope you find one of the programs helpful.

    Dominique... you make a great point, and one I probably should have mentioned. There are not only text-to-speech but also speech-to-text programs out there. Regretfully, since I can't speak more than a couple words above a whisper, I am unable to use them. Typing is easier for me than speaking. But no doubt for some the speech-to-text programs would be very helpful as well. My hands do get tired, and I have to space things out. It can take days or even weeks for me to finish a post! :)

  5. I remember the day I realized I could type without looking. I never thought that could become a necessity for anyone.

    It's great that you found this combination of solutions. Here's hoping for the day nobody needs them anymore.

  6. i had the same reaction to my forced typing class in HS. our teacher was an old strict witch. i was a young striving feminist...who defiantly believed that they were teaching me to type so that i would be prepared to be a secretary..which of course i was never ever going to be.....typing is the only class i ever rec'd a c in my entire academic career. ...actually i was lucky i wasn't failed with my bad attitude. in my early 20's i had a similar view abt making coffee for the office...once again they were pigeon-holing me to be the coffeemaker b/c i was i was strident back in my day.

    laurel, i am very sorry to read how ill you are and wonder if you have tested u may have heard some docs are experimenting w/ant-retrovirals on the sickest of us who test pos.

    you may want to explore this option given how ill you are....the arv's are RAL (isenetress) and tenfovir.

    if you are intersted in more info please leave a comment and i will leave you my email address

    take care, lisa

  7. Thanks, Cinderkeys and Lisa.

    Lisa -- I actually am XMRV+. I wrote about it a bit here:

    I have been reading (or listening to) some of the discussions on anti-retroviral treatment and will bring it up with my doctor next time he comes to the house. I don't know if he'll go for it because he's a naturopath, and there are no studies of yet. But it's worth exploring, especially given my state. Thanks for asking. :)

    Funny how many of us were forced to take typing. Sometimes teachers do know best, I guess. :)

  8. hi laurel
    thanks for reminding me that my cognitive & vision symptoms are part of the illness.
    i'm managing to work part time, 2 x 1/2 days per week teaching -tutoring small groups of high school students with learning difficulties. i absolutely love the work but feel exhausted after a few hours from concentrating, reading and focusing.
    i also find having conversations with others exhausting..part of the illness which is difficult to understand, especially for those who haven't experienced it.
    i feel lucky that i am able to do this much and appreciate life more from having cfs.
    wishing you all the best, and hoping for a breakthrough that will give you improved health!!

  9. I laughed at the schoolgirl resistance to typing. I had the same, I was far too posh to type and my school was far too posh to teach it. I learned on a government funded course in my twenties and has been one of the most useful skills of my life.

    It allowed me to have a career in e-learning during which I had a huge interest in accessibility. I am very familiar with text to speech software and the liberation it brings to many. Also of the importance of making websites work with this software. So many don't still. Most computers have a built in narrator which you can find in the accessibility programs.

    I have trouble reading as well. It used to be such a big part of my life and now I'm reduced to a couple of pages at a time. It's interesting that our hearing and auditory processing works better than our visual faculties. I may try switching to my computer's narrator to start following blogs. Thanks for the reminder.

    I'm so sorry you've had a setback recently. With improvements always come hopes, it is very galling to have them dashed. It reminds of that song where you 'pick yourself up, dust yourself off, and start all over again.' Take care.

  10. Hi Laurel!

    In my circumstances, almost all my typing is done under the blankets while laying down. Keyboard on belly along with the mouse.

    I too am glad for my typing class I once took. I picked up the sightless typing fairly quick and easy because of it.

    Nice post Laurel! I hope you get feeling better from the crash as the seasons move towards summer. Maybe some of that warm sunshine out your window will make it inside and energize you. :)

    big hugs, Lisa

  11. I'm so glad you've found a method to be able to blog...typing is one of those things that I'm thankful I can do as well.

    I tryed some voice transcription software for a while, however, I find that typing takes a lot less energy than speaking...

  12. Thanks for the comments, Cheryl, Sundog, Jo and UpNorth! :) Cheryl... that is great you are able to do what you do, though I'm sure it must be exhausting. It is interesting how many of us have trouble with conversation (or in my case, talking at all).

    Jo... great point about the built-in accessibility programs on most computers. I have tried using them before but find the other software a bit more user friendly. But that's another good point I should have brought up.. that many computers already have this feature available for use.

    Sundog... I have my laptop on my belly when I type too! :)

    UpNorth... I find typing tremendously easier than speaking as well.

    Thanks to everyone for all the well wishes!

  13. Laurel...beautiful and courageous!

    Thank you for sharing both your truth and the resources that help you. It isn't easy for us to share the neurological parts of this illness that are so debilitating...and I think you answered a big part of why..."yeah right you have chronic fatigue syndrome and you can't read write, or in my case, breathe well, walk without my feel shuffling after a little while."

    The picture of you with your head on the keys of your laptop, shouts ME/CFS truth. What a perfect picture for ME/CFS awareness month.

    No matter how this comment sounds through your "ability" machine...I hope you feel lots of love in it and appreciation for being able to experience your beautiful spirit that flows through what you share.


  14. This is a such a good example of adapting. I'm impressed. Thanks for sharing.

  15. Laurel, I adore you.

    You are fantastic and such an inspiration for those of us suffering with this disease.

    I also have neurological problems with reading and writing. Some days are better than others thank god.

    I think about you often.

    Thank you for your posts.


  16. Thank you so much for your sweet comments, Kerry, Alison and Annie!

    Kerry -- I wish that photo was of me! She's younger and has clean hair. :) I actually got the photo from a stock photo site, and thought it fit perfectly.

  17. Thank you so much for this post Laurel, I am always fascinated to know how other people who are severely affected manage their computer use. It's such a treasure to have someone else to trade tips with! I'm always interested in solutions and look forward to trying those programs. Thanks for sharing what works for you.

  18. If it's at all possible, this post just makes me admire you even more Laurel.

    Your determination to do this blog is amazing and the number of comments shows how many people you are inspiring.

    Laurel, I am totally wowed by you. I hope you are starting to recover from your 'crash'.

    Lots of love

  19. Thanks, green words and Karen! Karen -- you are too sweet!

  20. I have been ill with M.E. (I refuse to call it C.F.S. anymore) for nearly 2 decades. I had forgotten how frail I was neurologically. Over a decade ago I wasn't able to read, watch TV, talk on the phone, carry on a conversation, write, much less work on a computer.
    I am now able to do all of these things with the exception of telephone conversations which must be short. I spend an in ordinate amount of time on the internet without much problem. I want to tell you to let you know we do heal eventually...
    Though I am still housebound, like you, I look forward to a future without M.E.
    I am so very impressed with both your ability to adapt so that you can blog as well as your passion to do so. Kudos!!!
    I have only recently discovered your blog but I am finding it well written
    and informative with an upbeat mood...which is amazing given the subject matter.
    Carry on girl, carry on!

    P.S. I got pregnant in HS typing class and never finished. Like all of you the feminist in me detested it. I guess I found a fail proof way out. Lol! However, we could never have imagined the internet then...could we?P.P.S.S. Typing, that is, I am a college graduate.