Hey everyone!

Just to let you know how my ataxia is getting on…

It is getting on, downhill!

Last week I had to take some pictures of a table leg (to be replace by my dad) and had to juggle the camera on my phone, while holding a crappy measuring tape… I did this by myself because I wanted to be useful and accomplish something that should be easy to one who grew up helping my dad make many things in the workshop!

It started easy, as I took pictures on the screws, I used plate glass to hold the measuring tape (which was from my wife’s sewing kit).

Then I jostled the leg onto the table, I got the tape to stay, and proceeded to get my phone… and the camera switched off, I couldn’t hold the camera and the tape, next the phone dropped from my hand, and then I picked it up and inadvertently closed the camera app because my hand touched the screen.  Upon opening the camera, then I clicked the wrong area (I can hardly see the tiny icons…) and instead of taking a picture, a sub-menu appeared, and then … and then….

All this time I am getting more visually frustrated, growling at the phone, dropping the tape, and in an act of agressiveness, I slammed my phone down on the table.  My Mom-in-law my frustration and came over to help before I slammed the phone.  My older boy also comes over, as did my wife.  She asked “What is up?”

My reply, in ASL, mind you:

“I am trying to take a [bleeping] picture with my [bleeping] phone!  I [bleeping] can’t!”

Does that show I am frustrated?  I rarely swear, especially when my family is around!

My wife saw, and my mom-in-law understood, my boy had already drifted away before that outburst.

My wife, love her forever, took the phone and together, with her mom, took the pictures.

As you can see; ataxia, coordination, are messing with my life.  And I haven’t accepted some limitations yet.

But, I need, I must, I have to, gain acceptance!  My older son has CAPOS too!  So, if he sees me going off and assaulting technology, he is going to think it is acceptable!

Thank you for reading!








2 thoughts on “Pictures

  1. Hey Craig. You are an excellent writer. I enjoy your blog posts.
    I empathize, though not first hand. Young adult daughter struggles with RP and now needing to learn to live with zero vision at age 28. In addition, her shaking hands and arms (likely due to anxiety and a ridiculously complex med regime for multiple medical issues) mean she can no longer even provide a legible signature on forms, even with a signature guide card. Plus she has very poor gross motor and balance and seizures. She gets very frustrated. Seems just when you get accustomed to one level of disability/challenge…life sends you to a new, more difficult challenge. Does suck.
    Sounds like you have a loving, supportive family…as my daughter has me. But that ever-in-your-face loss of or lessening independence is definitely hard. Hugs.


    1. Hey Ann! Good to hear from you!
      Yes, I am beginning to understand, if one has spent 50 years, with a gradual deteriorating of ability, then one is more accustomed to loss. As compared to one who losses ability quickly.
      Share with your daughter!


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