IntrinsicTina

Grandfather drove bus in Hollywood during the golden age, "You go Vilshure, you go Wine?", the little Jewish men would ask of him. He was a very attractive, well-pressed man about town, intent upon rising above his humble, poor, dustbowl beginnings.

1 Momentarily sad, and at the extreme risk, of being repetitive, I am frustrated. Why? Let me just state my sincere appreciation for having access to an AAC device, also known as a speech generation device. Without it, I would be trapped in a heinous episode of Twilight Zone or Black Mirror, having a lot to say and not be able to say anything. And in this day and age of technological "miracles". Heinous. I am one of the fortunate ones, whose insurance covered my device, with my diagnosis. I have A.L.S., also known as amyotrophic lateral sclerosis, or Lou Gehrig's Disease. It's a terminal illness, but before it kills us, it robs us of everything we have and everything we are. The ability to walk, raise our hands, dress and feed ourselves, talk, gesture, and, ultimately, breathe. But I'm here to discuss the ability to discuss, to voice an opinion, to rise up "as it were" and be counted.  I am a fully cognizant individual, informed, college-educated, an...

I learned today that when I fail to blog, my "fans" begin to worry. Fair enough. If I may explain... Sometimes I'm blogging but not posting because I'm not able to finish the post due to technical difficulties with the Tobii or because the eye gaze isn't properly tracking my eyes or simply because I bonk (or run out of energy). Sometimes I cannot get centered on a topic and work on book reviews on Goodreads.com instead. And, still others, I've taken the time and energy to blog and post only to lose the whole shebang to an errant eye-click and I know that my blog software has lost three very important posts that I'm aware of! Totally demoralizing!!! As I tell my father every time I call him...I'm not dead, yet!  LOL!

I struggle each day for a topic to blog about. I have things that press upon my mind, emotions that spill over that I pour out onto the page to exorcize from my brain or my heart. I am, sometimes, moved to document my disease progression for posterity. Sometimes, something I've read strikes me and I'm compelled to share my thoughts. Like when I'm reading my AA material, my Bible, or the like. I also take cues from a book that my dad gave to me designed to document your life. That can be difficult. Especially, the ones about family. My family life has been painful to me, particularly the early days. It's difficult to put my thoughts and feelings out there for all to see and dissect. I've made a life of keeping my thoughts to myself, except in matters of AA and to keep my sobriety. My AA sponsor probably knows me best, then my husband, and doesn't he get me half the time. My family, and I do love them, are very judgemental .and use information to gain control. W...

People are reading my blog! I cannot express my gratitude enough. My heart is soaring! Before I got ALS, it was a minor interest amongst many varied interests. Today, I am unable to physically participate in many of my prior interests, like motorcycling, photography, knitting and other handicrafts, hiking, traveling, painting, drawing, going to the gym, working in the garden, doing housework, canning, and cooking gourmet or ethnic foods. Therefore, I am more focused on the ones that are most accessible to me, such as reading via audiobook or e-book, television, movies, meditation, music appreciation, and writing. Like the blind man who's sense of hearing and smell is heightened, I'd like to think my crippled body has made me more attuned to things more on the spiritual and sensual level. Initially, when some members of my family read my blog, they chose to focus on what they viewed as negative. The feedback I got was harsh and personally critical. .I was told that I was ...