Frustration Redux

Houston, we have a problem.

I am having big trouble reading your blog responses.   As many of you know, part of the optic neuritis assault is a loss of contrast.  Words seem to fade off the page.  I have been through this many times but never get used to it.   Usually, I regain some sight but never make it back to the starting line. Some of your messages are long.  Very long.  There is no criticism here.  This is frustrating because I appreciate how much you put into what you write and how much you care.

.  When Christopher and Matt seemed to be talking past each other about emerging technologies, I kept attempting to reread what I could only half see.  I brought nothing to the conversation.  I find myself longing for a short response to a blog, something like, that sucks.  I could pick that up pretty easily.  I do not want to discourage full responses.    All of you can read them, understand and respond to each other.  That is so important to me.

Then there is the usual anger, which rears its ugly head in these situations.  Many carry that around on our backs.  MB writes, “I’m angry, resentful, and non-accepting, too.” I’ll see you and raise you.  I am angry, resentful, non-accepting and very pessimistic.  This enemy keeps advancing over the horizon like foot soldiers in old wars.   Reminds me of WWII movies.  But please keep writing.  If I cannot make it through your thoughts and ideas, I will wait and see the movie.

 

42 Responses to Frustration Redux

  1. Nancy Cincotta June 19, 2014 at 12:32 pm #

    What’s going on with the stem cell, need an update.

    • Richard June 19, 2014 at 1:28 pm #

      Stillill too early.

    • Patti June 20, 2014 at 7:10 pm #

      RICHARD,
      YOUR VERY SMART CHILDREN SHOULD BE ABLE TO FIGURE OUT HOW TO HELP WITH THE TECH ISSUES ON FONT
      PATTI

  2. Jenny June 19, 2014 at 12:58 pm #

    14 years ago my first recognizable symptom of MS was optic neuritis in my left eye. It affected my acuity and color vision in my central field. Never recovered…legally blind in that eye. 6 weeks later it hit my right eye….it somewhat recovered. Like you Richard, my face is up to the screen trying to read and write. If reading on a windows based computer hold down the Ctrl and + to increase font size. Wish we had the capability to increase font size for you as we type our comments. My preferred font is 14 Bold!! Best to you and all that read this response!

    • Richard June 19, 2014 at 1:33 pm #

      I am less concerned with font size than contrast. Words just fade away.

      Best,
      R.

  3. Yvonne June 19, 2014 at 1:52 pm #

    Hope that stabilizes for you. You are the discussion starter and we chatter around you. Maybe there is an application that reads all our chatter out loud to you. I know there’s something that types your words as you dictate. I’m obviously not tech savvy

    • Richard June 19, 2014 at 3:51 pm #

      Yvonne-

      If you could just find an ap to write the blllog, that would be great.

      R.

  4. Yvonne June 19, 2014 at 1:56 pm #

    This disease is a thief that steals some of our most precious gifts. I have my sight but lost 60% of my hearing. Sigh….

  5. Jeff June 19, 2014 at 2:46 pm #

    Have you looked into any tools that may help? I am not familiar with any, but I googled “read web pages aloud” and came up with this one:
    http://www.browsealoud.com/page.asp?pg_id=80004

    Good Luck!

    P.S. A year ago, I was an anxiety ridden angry man, but I have come to realize that my anger only ends up hurting me (along with my loved ones). Now, don’t get me wrong, it is a daily struggle to let my anger subside. But when I am able to do so I my symptoms seem a little better and I am able to enjoy things a little more. There is no easy way out of this!

    • Jeff June 19, 2014 at 2:49 pm #

      Sorry, just actually read that link and it is for putting text to speech on your website, not for a reader to get text to speech on all websites. This one may be better? – You can even copy and paste text into the box and it will read it for you.
      http://www.naturalreaders.com/

    • Richard June 19, 2014 at 8:41 pm #

      I am a fan of angry fflashhes. Then let them go.

      R.

  6. Mike June 19, 2014 at 2:46 pm #

    THAT SUCKS!!!

    • Amy Corcoran-Hunt June 19, 2014 at 5:32 pm #

      What he said.

  7. jeanne June 19, 2014 at 3:59 pm #

    Only half of what I write makes sense anyway. You’re not missing anything here.

    Get better please!

    • Richard June 19, 2014 at 8:43 pm #

      I will. Promise.

      R.

  8. Sandy June 19, 2014 at 4:16 pm #

    I am new here and just recently began reading this blog. I have come and gone from other forums and blogs mostly due to boredom and not being able to relate to others.
    Your blog hits it right on the head for me and I am so impressed with your honesty and your ability to put into words the ever-changing world we live in.

    Richard I loved your book, too.

    I try to avoid the anger and when I can’t I use humor to get passed it. Mostly I have learned to laugh at myself. Lost words, a train of thought, losing my balance are all worth crying over at times but instead I try to laugh about it. The only worry I have is that I may be schizophrenic by the time I am done.

    Thank you Richard for doing this blog for all of us.
    You Rock!

    • Richard June 19, 2014 at 8:45 pm #

      And thank you for standing with me.

      R.

      • Sandy June 20, 2014 at 3:46 pm #

        Well Journeyman its like this…its not a journey any of us chose but we seem to be on it together.

        Thanks for letting me tag along.
        Sandy

  9. Betty Moody June 19, 2014 at 4:24 pm #

    Richard,

    An observation from my side is that the reply type (once submitted) presents as

    lighter in the comment field. Is it possible on your settings to make the type bigger

    and darker, and would double or triple spacing help? You are our thought-leader,

    trail guide, and referee. That’s a big responsibility, and your posts are frequent.

    How can we make this easier? Spread things out a bit? Let us know how we can

    help.

    • Betty Moody June 19, 2014 at 4:30 pm #

      PS I did triple space my recent reply and it made a small difference.

      This is five spaces.

      This is a test.

      • Linda Lazarus June 19, 2014 at 4:37 pm #

        My optic neuritis always gets better. But, when it is bad, I read with one eye closed.

    • Richard June 19, 2014 at 8:48 pm #

      Maybe darker font. And cllearer thinking.

      Best,
      R.

  10. Betty Moody June 19, 2014 at 4:35 pm #

    Looks like three is max spacing at the current settings. 🙂

  11. Marilyn June 19, 2014 at 5:36 pm #

    You are a brave man with a fabulous sense of humor. Optic Neuritis, like so many, was my first major symptom. My vision returned. Bout of double vision later too. Luckily, went away.
    Short and sweet. MS SUCKS. My husband tells me to keep moving. Believe it or not, even though I am slow as heck, the support helps. Thank you Richard. You give me hope, promise and a smile.

    • Richard June 19, 2014 at 8:50 pm #

      I’ll take the smiles.

      R.

  12. Jack June 19, 2014 at 5:38 pm #

    “Brevity is the soul of wit.”

  13. Joan L June 19, 2014 at 6:01 pm #

    Looking for large emoticon with middle finger over letters MS…

    • Yvonne June 19, 2014 at 6:42 pm #

      LOL

  14. MB June 19, 2014 at 7:27 pm #

    A drop of ink may make a million think. (an abbreviated Lord Byron quote)

    The same holds true for virtual ink. Your posts have elicited some great responses from your blog followers. We’re using our brains the way they were intended to be used—to think, not just as receptacles for neural misfires.

  15. Mark June 19, 2014 at 10:07 pm #

    Don’t worry about bringing value to the conversation. You brought this group together, Richard. This is a great place. I check it daily. It is fun. It is therapeutic. Thank you. I hope the condition resolves soon.

    • Richard June 20, 2014 at 8:36 pm #

      Thanks. It will be whjat it wilol be.

      R.

  16. Laurie June 20, 2014 at 1:39 am #

    Richard,

    Thanks for your posts and for bringing people together,

    What you are going through does suck. I like your honesty.

    Laurie

    • Richard June 20, 2014 at 8:37 pm #

      Laurie-

      I was lying. Just kidding.

      R.

  17. nancy s June 20, 2014 at 11:09 am #

    Joan, your emoticon idea made me laugh…that’s such a good thing! I’m thankful for all that are traveling the same unpredictable road.

  18. Kate Aquilino June 20, 2014 at 12:29 pm #

    R-

    So sorry about the sight. I hoped that would be the first success of the stem cell therapy. Keep your eyes open (awful pun) for what’s next. Wishing you all the best.

    K

    • Richard June 20, 2014 at 8:40 pm #

      Kate-

      Keping an eye out.

      R.

  19. Tracy June 20, 2014 at 12:55 pm #

    Something happens to my brain when I read. Then, I get pain and muscle spasms and blurry vision? Does anyone else share these symptoms?

    Tracy

  20. Betsi June 20, 2014 at 2:41 pm #

    There ISN’T much contrast in the graphics on this blog. That’s something that usually can be customized. Do you have a tech person helping you with the layout?

    • Richard June 21, 2014 at 8:43 pm #

      Nope. More concerned with content than look.

      R.

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