The environmental control service stopped by yesterday. The ECS provides an electronic system which can be operated through switches, buttons, voice control and the like. It can control “almost anything electric”, according to their brochure, including an intercom, door release, alarms, telephones, televisions, lights, curtains, computers, heaters, fans etc. it has taken a while for the appointment to come through, but once here, it was an interesting assessment. I’m a big fan of assistive technology, obviously, and browsing through their selection of different hardware components, realizing the untapped potential there still is, was both exhilarating and frustrating.
I’m still having quite a few issues. Chris helps, the part-time personal assistant helps, Dragon, GlovePIE, various joysticks, controllers and other fun things help. But I was in tears after they left. It was a three hour long appointment; I was tired and hurting, but mostly extremely frustrated. It is nice that things are coming toge and in general slowly improving. It’s nice to know that early in the New Year, a few more things will be added to the list of stuff I can do. But it’s really difficult not to feel discouraged. There is still so much I would like to do and do better. It used to feel a lot more depressing, it used to feel almost impossible. It no longer seems that dreary. Small steps do get you somewhere in the end. It may take longer, but as long as you go at a pace that’s doable, life is not that overwhelming.
I’m now starting to understand the general fascination and glee of gadgets. Chris bought me a touch screen phone that’s lying in my drawer untouched. It frustrates me. I can’t use the stylus or the screen and it just won’t do what I tell it to do. At some point, it’s just easier to give up on the impossible. It’ll never work for me. The environmental control system on the other hand, I was giddy with excitement. It is such a cool toy. The control unit is quite small, has a touch screen, which I think Chris will find useful but I find impossible to use, and will be mounted next to my computer screen. I chose a chunky one-switch button and to start with and it made me think about switches in general. There’s so much that can be done with USB plug-ins these days and the standard switches and mini-joysticks are really affordable. I have a table full of gadgets and toys, but it’s definitely time to add a few more.
I slept after they left. Woke up, tried psychonauts again, I’m now stuck on the psychedelic cube in Sasha’s mind and gave up when I started to feel that pre-migraine/seizure oddness hit. It took all of five minutes. I slept again. Woke up better but irritable for a three-hour raid. Today is a lazy day. My PA, it still feels strange to say that, is arriving shortly and it’s nice to know that although I love switches, buttons and sticks, they don’t do coffee or lunch or parts of games that I’m stuck on. It’s nice to gain more independence and be able to do more things without needing help, but it’s still nicer to have help at hand. The biggest improvement over the last year hasn’t been all the stuff we’ve gotten, it’s the people I’ve met. Few things are as reassuring as knowing that when I get stuck, I can say help please. And help there will be. Also, early in the new year, the environmental control unit will arrive complete with a handy pager, now wouldn’t that be handy and convenient.