In the past two months I’ve deleted multiple ideas for this blog. None of them felt right. The truth is that I dislike endings, saying goodbye in any form is a challenge. So with my husband playing “Pink Floyd” in the background…here goes. (Prayer: May “the Floyd” inspire me!)
The journey began as something out of a horror film. The journey began by being told that my vision was a great deal worse than I thought it was. That fateful return trip from Rotterdam changed my life. Actually it really began one cold November Saturday night in 2009 but who really cares? (Night Walking)
I arrived in Apeldoorn on 12, December 2011. By the end of the first day I just wanted to hear anything. The noise, and the hearing of the noise, was too much for my sorted brain. I wanted to never hear again. Hearing was worse than seeing. I did the only thing I could: I slept. That is how my journey into change began.
When I look back over the past 15 months I am struck by the many changes that have come about. Most of the changes are simple and some are more complex. I can’t write everything. Read the blogs to find out more.
I was asked last night if Visio had made my eyes better. Were they cured? “No, my eyes are still the same as when I checked into my cell but the way in which I deal with my eyes is radically different!!!! Maybe they are “cured.” Maybe there is a cure in the process. The cure is mostly psychological rather than physical. Attitude is everything when it comes to living with disabilities.
All the Stupid things I Learned
Or in other words “Why didn’t I think of doing that…stupid?” There are two processes that go hand in hand towards helping someone “get a clue” about not using their eyeballs. I’m convinced that failing to complete either cycle will leave a person floundering in the process of adjustment to low vision or blindness. The hours you spend doing “Ergo Therapy” or “Zien training” are critical.
Ergo (the practical living skills) work is essential to preserving a dignified life. Once I developed a pattern of working all tasks stuck in my head I was fine. I clean in a pattern, keep everything organized in the same place, and use common sense in what I do. I am very efficient and happy in my living environment. I no longer stress over my chores, I no longer ask “did I get it all clean?” If I missed something I missed it. For instance I cleaned out a kitchen drawer this morning…it was messy!!!! It was a place that needed some work but 10 minutes did the trick. Previously to my incarceration in Apeldoorn I would have spent 30 minutes!!!! It is just as clean in 1/3 of the time. Ergo rocks.
If Ergo rocks zien training is hell. For me zien (sight or lack thereof) has two vital aspects: confrontation and gizmology (the art of getting great stuff that works to help you.) acquisition. The latter is FUN. What do you need to help you “see” less and do more? My collection of charger devices has…well read the blog about chargers. Getting devices that help me work efficiently has been fun and rewarding as well as liberating. I have so many wonderful things that I enjoy using.
The confrontation aspect of the training was handled gracefully. I couldn’t have asked for more compassion as I came to terms with the reality of my situation. If “Night Walking” alerted me to my reality Zien training taught me that there was hope in discovering the truth. I no longer read anything unassisted as my eyes do not like the strain of reading for more than three minutes. I no longer have head pain from reading. That is just one example. Zien is where my journey grew to become a peacefulness of the soul. Zien is a slow steady hope that burns deep.
And the winner is: Computers!!!!! Yes, folks with all the time I spend on this thing it is a nightmare that has taken intense thought to conquer. The reason is that I have poor hand-eye co-ordination, don’t hear well, and have struggled with how to do it best. Exploring the options was frustrating because nothing felt like it worked. The traditional things such as using my hearing more have not worked well for me. Ironically closing my eyes when I type is about the best low tech solution, and even then it isn’t the best solution. I don’t do this well. My typing speed isn’t near what it should be for having been typing for 40+ years. That is just the tip of the iceberg. I am now investigating “Dragon” This I shall pursue AFTER “the guys spring me from the joint.”
Never have I worked as hard as I have to get to each pointed period. The bumps have been a constant reminder of the fact that reading in the dark might not be such a bad idea. Learning braille has not been easy at all and I am happy that I can, while not in a speedy fashion, read the bumps.
I’ve enjoyed reading all of my life and spent many summers with a stack of books just reading one after the other. Ah that was truly the way to spend my time away from formal learning!!!!! Reading has been a thrill. To struggle with each word has reduced me to tears. I have never wanted to quite braille, and I haven’t. The thought of not reading in any form goes against all I am. So at the end of each sentence I say “PUNT.” Thank you for sitting through the slow reading sessions.
There are two forms of freedoms I have gained while doing my work in Apeldoorn. The first is being able to be out on my own and feel safer with my friend “Myrtle Mae” (“Mobility in a Slipper”) I can honestly say that “it, Myrtle,” is my friend. The stick got named because it is with me when I need to be out and about in the big world. Naming it is just a silly and friendly thing to do. On the 29th of March I shall begin a new phase of mobility work that will be the final preparation for going for “Eyelette” the dog.
There is another Freedom: that of speaking. In the past 15 months I have begun the process of learning to speak Dutch. This has been fun, hard, challenging and rewarding. I’m still learning and I have a great ways to go but now the hearing of the language has turned to hearing words and not garbled sounds. I have no words that can express what I truly feel for my Dutch teachers. Each of them has done so much. Each has unique qualities that I could not have done without.
ON Thursday at 18:15 it is over and I am out. I will leave “cell 312 for greener pastures. My time is up and I’ve served it well.
Fijn weekend iedereen, van de piep kleine vrouw.