IntrinsicTina

I was asked to write a segment on "patience" of all things.This is for a staff training video. I cannot help but feel a little convicted as I am not always the best example of patience. I have thrown howling shitfits, cursed caregivers, and presented as a pain in the butt. Who would even care what I have to say on the subject?! Then, again, who wouldn't? I've had ALS for about 3 1/2 years. In that time, I've had to overcome the reality of transforming from an active, independent woman to one who must depend upon others for every single need, no matter how personal. I've suffered and transcended physical impairment, paralysis, emotionalability, betrayal, abandonment, humiliation, discrimination, and governmental inadequacy. And, I've not always suffered graciously nor quietly. Be that as it may, the following is my contribution: Patience. Ironic that I should speak to patience, when I seem to have so little. Patience is so important when dealing wit...

Minions. I need lots and lots of minions. My husband has been munching down Happy Meals like his life depends upon it. The quest for minions has begun... First, one showed up. I was entranced. They began arriving two by two, giggling and babbling in their infectious way. One, three, five, seven... Until I share a room with fifteen little, yellow hooligans who respond to noise and movement. I can be dead asleep but if a caregiver sets anything down, they raise a ruckus. I can't help but laugh along with them. They're a riot! My husband is going to Sturgis on his Harley Davidson. He promises a t-shirt and more minions...Lots and lots of minions!

My husband finally had my VHS-c tapes transferred to DVD format. Oh what fun! And illuminating as well! I've been binge-watching these DVDs ever since. They contain the most precious of memories. Memories of my daughter and my first husband and me. It's obvious to me how in love with our daughter we were. Still are, speaking for me. I don't speak for my now ex-husband. What I discovered, or was able to reaffirm, was that I was a good mother and my exhusband was a good father. My mother-in-law was exceptional. Exceptionally patient, kind, and generous. This, I always knew. I don't know who I mourned more with the loss of that first marriage, my husband or my mother-in-law or sister-in-law. I loved them all so much. My daughter, I loved most of all. Still do. I also saw how much I favor my grandmother. While my immediate family are of similar mindset, I am different. Whether it be nature or nurture, I turned my back on their lifestyle and attitude. That doesn't ...

Support group nite. The usual suspects, being Anne ALSA , Barcha, Ann, Nathaniel, Peter and his cousin, myself and my husband. Plus, a few national ALSA reps, a sweet man whose name I'm ashamed to say I forgot, and a man new-to-me but not to the group, William. A nice size group. Good energy! Practicing meditation and mindfulness is getting easier than ever before for me. Barcha is so skilled at speaking gently and purposefully and guiding us into relaxation. I thought I knew something of meditation, coming from the standpoint of recovery. I, actively, work a twelve-step program of recovery And, in so doing, there is a step that calls for seeking out the will of one's Higher Power through prayer and meditation. Admittedly, a tough one for me to do regularly, even after seventeen, almost eighteen years! Now, I wonder if I tried too hard or was too glib about it. Anyway, I just came out of our meeting peaceful, happy, and renewed, mentally. I wanted to acknowledge that. It...

So, my challenge, should I choose to accept it, is to write about my mother. Tall order. My mother has loomed large in my life. Father figures may have breezed through the formative years of my life but my mom was always there. My life was not made for T.V., it was a struggle over adversity. In the earliest years, I can only piece together a sense of things through old photographs on Kodachrome. I had a typical family unit of my mother and father and I looked well-loved. I mean, I smiled with my whole heart in those earliest photos. I held fast to my mother's hand and played up to my maternal grandparents. They also played a large role but this is a.bout my mom. My mom was very pretty and fell for a sailorman early in her life. She had me at 20 and I don't think there was much of a plan. I think she was "with child" before she got married. No big thing nowadays but a bigger deal back then. I suspect they married quickly and don't recall any big wedding photos...

Early in our relationship, though we were traditional nine-to-fivers, we were driven to create something together. At 36 and 43-years old, respectively, we were beyond creating babies. Besides, we came into our relationship with a perfect daughter each. Mine was 13 and his, twenty-three. Both blonde, bright, and beautiful and his came with a bonus, a baby! I came into the relationship with a condo that needed no work. He had a work-in-progress in the woods, actually two. We would spend our lives together redesigning and improving these "cabins in the woods". But, before that we took an afternoon cutting down young alders to use to make a trellis. Working together, we .wove supple, young branches into a nine-foot tall trellis with two hearts stacked one atop the other. We were in the gooey, sickeningly sweet, first months of love, forging a new life together. Here we are seventeen years later, separated by circumstance, through no fault of our own. I live in a hospice faci...

My ire's been up as of late. My frustration level has been like an overheating radiator on a limping jalopy. Bubbling at the lip, then shooting geyser-like, when one more frustration piles on top. More and more, I'm losing energy and my ability to speak. At the same time, my best, most intuitive caregivers are leaving, taking with them, valuable tribal knowledge about my care. Knowledge, that I desperately need them to pass on to the people left behind. Currently, I'm being taxed of my energy because many of my caregivers believe they can just pepper me with questions as they go. Once upon a time, that worked. I can assure you, those days are passed. I need my caregivers to perform like a NASCAR pit crew. Knowing what they need to do and do it quickly and efficiently. Overshadowing all else, should be the need to preserve my airway and to keep me breathing as comfortably as possible. They must understand that my disease is robbing me of all muscle function, including ...

It's 10 pm, I've accomplished nothing to speak of. I watched one movi, "The One I Love", a Twilight Zone-esque story on a couple trying to reconcile. And, one television show, "Running Wild with Bear Grylles" guest starring Channing Tatum. OMG!!! And, I ate some dinner. Tonight was chicken gumbo, chili, cornbread, oatmeal cookies and ice cream. Not much of a day. Nope. I was looking forward to my husband's visit but when he called at 5 pm, he mentioned that he was in Ritzville (by Spokane) working on his trailer with Darryl (the other jerk that took my cruise without me).  I do not begrudge my husband having a life away from me. However, as I keep telling him, I don't appreciate being purposefully left out of loop and disrespected by being left waiting for his disrespectful ass. Any questions?

I've read Sue Grafton mystery novels from A - W. I've devoured them within the last few years one after the other since finally acting upon a recommendation from an acquaintance at water aerobics. I immediately connected with her protagonist, Kinsey Millhone. Not because I'm like her but because I admire her. She's a loner. Confident but not arrogant. Fit but not a super-healthy eater. Runs her own business, supports herself, doesn't need a man. Decent integrity, but not unrealistically virtuous. I like that she can and will pick a lock when it's right but not necessarily when it's legal. I don't get her aversion to pets and children but it works for her character. I liked her observations and eventual acceptance of Ed the cat. It's beyond me why she didn't snap up the gorgeous Chaney and dump the commitment-phobe P.I. But I appreciate her not simpering about for a man. I like her habits, non-smoker, light drinker, tidy, industrious, and light ...

Let's get gritty. Some days are definitely better than others! I lost my sh*t yesterday. Frustration combined with exhaustion gets me every stinkin' time! I'm not able to deal with stress in the same manner as I used to. I can't explain what's happening in situ because I cannot speak. I can't scream and yell because that requires air volume and diaphragm muscle strength. I cannot point, motion, or signal in any way because my fingers, hands, and arms are paralyzed. I can't expend excess energy because there is none. No walking around the block to cool off for obvious reasons. I volumn up some but not like a normal, healthy, mature homo sapiens. I do cry piteously, from the very bottom of my heart and I am powerless to stop. Though my tears stain my face, my eyes swell, my nose runs into my mouth, (eww) sinus pressure builds up to blind me, hurt my ears, and throb my teeth. Every time I swallow my ears pop inward shooting excruciating pain inward. This pain...

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!

.My life, I live in increments. Periods of lucid awakeness, spanning shorter times. Less incentive to stay conscious. Poor facsimile of life. Downward escalator to death. I spend so much time in the different levels of sleep, I can almost recognize them when I'm in them. Why I dream of my exhusband so often, I do not know. Last night, I dreamt that I was to live with him in the .posh condominium of his deceased wife, (his current wife). He wasn't happy with the requirement and proceeded to treat me as horribly as possible. Not answering courteous questions I asked him, like "What would you like me to do? " He was moving ornate Oriental furnishings into the well-crafted one story home and I was trying to put everything away in a way that pleased him. Unfortunately, nothing pleased him. He held me in absolute disdain and scorn. Neighbors came by to welcome him back, giving me sidelong knowing glances. I kept searching the myriad cabinets and drawers for something to...

BUT.. Brittany is one of my favorite caregivers. She's intuitive about my care. Always mindful about my ability to breathe, my hand and head placement, and my cleanliness. All things near and dear to my heart. She is also very adept at helping me with my Tobii augmentative and alternative speech device. One of the rare few not intimidated by this advanced technology. Additionally, she gets my ALS accent, cutting down on the need to repeat myself, and conserving my energy. Another favorite is Victoria. I know that my night will go well. I don't have to worry about how I'll be handled, feeding will be uneventful, and she is very pleasant to be with. She is another caregiver with an ear attuned to my ALS accent. My favorite physical therapist is Darcie, for two reasons, her physical therapy skills and her bedside manner. She's a hoot! My time with her goes much too fast but is never hurried. She never talks down to me and carries the conversation unselfconcsiously, like ...