Skip to main content

A Beautiful Mind

The mind is a wild and wonderful thing. Today a lot more goes on upstairs than people realize. Many people make the mistake that because I live in a nursing home, I must also be feeble-minded. That because I speak like a five-year-old (due to dysphasia), I must also have the intelligence of one. It's frustrating and exhausting explaining and proving myself to those around me. Particularly frustrating is repeating myself three and four and five times to people who regularly care for me. Now I am not prejudiced. On the contrary, one of the greatest benefits to being in this home is my proximity to other cultures. But the people who struggle the most with my speech and care are people who speak English as a second language.It's a challenge to come up with alternate ways to describe things that you need.

Speaking of challenges, learning to use my Tobii alternate and augmentative speech (AAC) device is a doozy. I have always had a fairly easy time learning new programs and systems but I have found the I-series Tobii difficult to master by myself in a nursing home situation using just my eyes. Adjusting settings require mouse clicks, which requires fingers. My nursing home requires daily log-ins to access the wireless network and wouldn't you know every time I try to logon Tobii capitalizes the first letter which means I need to get help. Then my first challenge comes into play, find somebody who understands me. And facebook isn't much fun when you can't message your friends or view their photos or videos.

On a positive note, the Tobii has been one of my most useful tools besides my wheelchair. Keeping my mind active, giving me the means to keep in touch with family and friends, a tool to blog and visit favorite websites.

Comments

Popular posts from this blog

Kate

I think about my friend, Kate Struby, who died from this horrible disease in 2013. She lived here at Bailey Boushay House before I did. I reached out to Kate online through FaceBook because I loved her photograph with her head thrown back in laughter. I also loved her posts. I guess I just loved her spirit. I got to finally meet her one month before she died. I happened to be at the University of Washington Medical Center for my quarterly appointment when I saw her FaceBook post. She was awake and in the medical ICU. She was a mere few floors down. I would not be stopped. Relativeor no, I would meet my FaceBook friend. Thank God I did. I rolled into the room to find a beautiful, ethere.al woman flanked by two friends. Although it was an impromtu visit, she said she knew me immediately.I was in awe of her with her fiery spirit despite the ravages of our shared disease. She, unable to lift even a finger, lifted my spirit.

Immersion Therapy

Please excuse my selfish absence from posting to my blog. I wish I could say that I've been out diligently finding a cure for ALS, or tirelessly working to fund research, or hunger-striking to bring public attention to beacon the cruelty of not having access to care facilities geared specifically to the specialized needs of the ALS patient. Alas, I have been binge-watching Scandel, The 100, and binge-listening to audiobooks. I'm currently enamored of mystery and thrillers by Chelsea Cain and Lisa Unger. I cannot do a Helluva lot these days but I can still waste time. ALS ought to have some perks. I can immerse myself in completely in entirely new situations, raise my excitement level and learn something new to me.

Tuesday

Tuesday is shaping up to be my best day of the week. Every day holds the requisite eating, changing, television, and napping. But Tuesday, I got a glorious, hot bath in a handicap-accessible bathtub with my Angela and Lisa, reorganized my shower caddy with my Lisa, read "The White Album" by Joan Didion with my Lindsey, "supervised" doughnut-making and sampled same with my Sandra among others, and listened to Ryan Feng play classical piano. A new book fell into my lap today. Of course, I mean that figuratively. "Play It As It Lays" by Joan Didion was just laying on top of the informal Bailey Boushay House library cart, so I borrowed it. .Guess what we'll be reading? I feel very blessed!