Spending five days without the ability to communicate effectively beyond spelling a few words on an alphabet chart provided an insight I needed. I knew this was going to happen for some time and I failed to take proper precautions. I have been using a Toshiba Tecra A8 21 hours a day for 8 years beating the stew out of it on dirt trails, gravel roads and transferring it from wheelchair to bedside cabinet. I swear by the Tecra line. Until Carey and I were caught out in a frog strangler earlier in the spring I never had a second’s problem with the laptop. The diagnosed problem was a computer full of viruses. I have religiously updated my antivirus software and scanned the drives. As my dear friend Harmon Gunter use to say, “I wouldn’t spank a dog in the ass with that” AVG Internet Security! I was forced to upgrade to Windows 7. XP had been such a stable platform for my memory intensive programs I resisted leaving the trusted friend. Anyway, I need to have someone to write some code for my driving program before I enjoy independent mobility again.
Back to the program. I have been extremely proactive on this seated journey in terms of my health and challenges ALS presents. For my sanity I rarely look back rather keeping my nose to the wind, but five days of sitting around like a sack of potatoes lent itself for reflection, self-assessment and listening. Though totally paralyzed except for a finger and a few dependable facial muscles, I had never realized how empowering my wheelchair is for maintaining a positive outlook. Just moving from one location to another when I desire, getting jostled around on the gravel driveway appreciating the feeling of movement are things I am missing, but had never given conscious thought to before now. Bottom line, ALS is a horrific disease and I am fortunate that this is a temporary setback. I keep telling myself, this too will pass.
I will never be confused with a Chatty Cathy, but it was so damn frustrating existing in a silent world again. By late in the second day depression took over despite my best efforts to assure myself this obstacle would be short livd. I didn’t have my contact information for the people that could assist Carey solve my communication issues printed on good ole fashion reliable paper. Carey reached out for assistance on facebook and a few people recommended a guy from the ALS Association of Georgia. We called and never had the opportunity to explain the problem. He was more concerned with if I had a backup means of communication, which was appreciated. Carey explained that we use an alphabet chart and I wink for the desired letter to spell a word. He immediately pooh poohs our emergency solution for being too time consuming. He tells Carey that she needs to attach a laser pointer to my head so I can quickly point at the desired letters. I have not had the ability to move my head in over two decades and the scary part is this guy knows how long I have been diagnosed. When someone is drowning don’t throw them a cinderblock.
The movie Shawshank Redemption was released in 1994. I was still mightily struggling with my failing body. The bulbar deterioration had made my utterances unintelligible. Technology prices were as high as the expectations the public had for the new technological wonders. A laptop, necessary hardware and augmentative communication software was priced over $10,000. This predated insurance coverage of the necessity and with typical debt of young couples this purchase was delayed two years. Needless to say, my frame of mind was in need of encouragement. When I heard my favorite line in the movie, “I guess it comes down to a simple choice. Get busy living or get busy dying.” I did a little contemplating and decided it would be to get busy living.
Without anything to distract me I was keenly aware of all the conversations around me and the random comments made. It was surprising how distinctly different each individual was and how consistent their mental outlook they projected was, some overall positive, some mostly silent and some almost all negative. This awareness of attitudes got me thinking of the movie line. The thought that quickly came to mind was I had endured far too much to do anything but get motivated and get the hell out of this predicament.
This week has been extremely productive resolving issues and overcoming challenges daily. By Monday I should be back to normal maybe even sporting a few improvements. Thanks for reading. Have a great weekend! dj