IntrinsicTina

Bad news. One of my favorite caregivers is leaving Bailey Boushay House, and by extension, me. Assan Jagne, originally from Gambia, is a very tall, very black, imposing man at first glance. But, if you stop there you'd miss out on an extraordinary human being. I must admit that I was  more than a little apprehensive about being cared for by him. For one thing, I dreaded having my more intimate needs attended to by any man. I was terrified at the prospect of him. How utterly fear-based, sexist, and racist of me! As he did his job, I witnessed his gentle, self-effacing humor, his intuitive ability to really help, and the love that emanates from him.  I learned that he helped a friend of mine who also had ALS. As a result, he seemed to understand my particular needs as a spirited woman with ALS. I struggle to find the appropriate words to express my gratitude to God for sending me this lovely person to teach me valuable lessons.  I will feel his absence. I will strive ...

Writer's block. So much to say but how do I say it? Melancholia. I was ready to go on time. Up and at 'em at 0745. Shower accomplished. Appropriate wear for a choir concert held in Shoreline. I shouldn't care but I do. Snapped out of my funk when I chose to attend a music group. Rousing renditions of "Somewhere Over the Rainbow" by Isreal "Iz" Kamiole and Cassidy and our own, Nadine set the tone. We "sang", Nadine carries the song, Jola soloed, I'm the human metronome until I tire, Trish puts in a good word, and the volunteers join in. So, we sang "Stand By Me", "Lean On Me", "Under The Boardwalk", and "Sunshine On My Shoulders". And Nadine improvised a personalized summertime blues, including all of us. One cannot help having their spirits bouyed to a better place. One good decision leads to another. Next, I was blessed with Elizabeth, a sweet volunteer, who read "Awakening the Buddha Within...

I'm having trouble making another difficult decision Who am I kidding? I don't really get to make decisions anymore. I get whatever anybody is willing to give me. Why the pessimism?  I'm hurting again. Nothing has the ability to cause me more pain than strife with my husband. Especially so, these days. Living isolated, away from family and friends, was never in my plan. Frankly, it's pretty damned awful. Being so isolated, my emotional dependence upon him is magnified. This is a mistake and I know it.

Before it reaches crisis level, I need my caregivers to be aware of my respiratory needs. Currently, they enter my room and apply Purrell antibacterial to their hands. Great practice for infection control! Bad impact to someone with limited breathing abilities. The compromise is to rub in the antibacterial thoroughly prior to entering the room. That way, the fumes are minimized. My speech therapist also said that soap and water is another alternative. I agree. Other irritants include perfumes, sprays, and powders. Anything that emits a chemical or is propelled into the air can steal away my breathe. For that matter, even too many flowers can leave me struggling to breath deeply. I've had to ask that my room be mopped only when I'm not in it. While I love my air freshener, Febreeze, it must be used judiciously; aiming toward the floor. Talc or powder must be shaken into caregiver's hand, away from my face, then applied to me. And, please don't use these admission...

Memorial day weekend and I got out of the home, and out of my current reality, so to speak. The forecast was grim and the pregnant, pewter clouds echoed the same. Stepping out in faith regardless of a plan, worked. We planned to visit MOHAI over the holiday weekend but couldn't get it together early enough to justify the $17 USD per person entrance fees. Oh, MOHAI is the Museum of History and Industry. Located in Seattle, Washington on the banks of Lake Union in the heart of the Mercer Mess. Because my husband is easily frustrated by Seattle, by traffic, by my disabilities, by life in general, we decided to go on a dry run.Incredibly, this ended up being the main attraction. This was the same weekend for the Folk Life Festival, my first choice, so there were no crowds to contend with. What we found was easy parking for the handicapped; wide, clean walkways; open space, waterfront access (even for me); interactive fountain; city, lake, and Space Needle views; bright orange angul...

My husband told me that I got a private facebook message from my former best friend who has not spoken to me in 5 years. Then, he wouldn't read it to me, babbling on about how he hates facebook and doesn't know how nor like to use it. Now, I currently cannot use facebook through my Tobii SonoKey interface nor can I access it alone in any form. I get incredibly frustrated when he is my only gateway to do something that is so important to me and he lames out because he doesn't want to or fains ineptitude to get out of it. I wish I had more options and didn't have to rely on him.

1 Reading, or more precisely, being read to, by a volunteer-turned-friend, "Awakening the Buddha Within", Is having a profound effect on my understanding and acceptance of myself in life. While I've found some degrees of spiritual enlightenment on my path since discovering Alcoholics Anonymous twenty years ago, this book is jelling together my understandings of principles and my life experience. My recall on step one is sketchy, although I think I understand more of why I "failed" to achieve more traditional success during my lifetime. That is not to say that I was a failure. I was not.   I was not...So many things. I held a lot of jobs throughout my lifetime, the longest spanning four years working for a chiropractor as his assistant at a pivotal point in my life. My highest career achievement was working my way up from temporary office worker to Executive Assistant to the president of division of a global .aerospace company.  My most formative and fun jobs...