IntrinsicTina

2 I've been admonished by a certain member of my family, a sister, for writings she construes as critical of my upbringing. How do I explain that my thoughts, feelings, and perceptions are mine. Right or wrong, true or false, they are uniquely, my own experiences. I freely admit that I'm an alcoholic, in recovery, of course, but an alcoholic, nonetheless. Thus, I have the innate trait of reacting not-quite-normal to my circumstances. I'm the girl scout who bit another girl scout at a troop outing. I don't remember why, but does it really matter? I couldn't wait to grow up to be able to drink alcohol like my mother, stepfather, and their friends. I had no concept of what I wanted to be but I was certain I wanted to drink, eat cake batter, and dance. I was the teenager who awoke to a sailor on top of her, following an all night party, with her new stepsisters, then feigned bravado at the discovery in flagrante´delicto. I figured I deserved my predicament, offended...

The bottom, right cabinet in Grandma's breakfront belonged to me. Though I always was forced to go home to my mother's home du jour, I knew I had a place of permanence, a home for my Archie's, Donald Duck, and Ritchie Rich comic books.

20   1 I gotta talk about it! I had another scrumptious dining experience, here at Bailey Boushay House! And if you're one of my regular readers, you may get the impression that I only blog about Italian dinners. However, I will tell you now, I'm a foodie. French, Indian, Thai, Japanese, Vietnamese, Columbian, Mexican, Tex-Mex, African, Irish, American. By God, if it's a foodstuff, I'll probably try it and, quite possibly, like it! It's coincidental that I'm, once again, going to rave about the awesome Italian dinner we enjoyed. To mix it up for you, I'm going to start at the end. That's right, if I had the option, I would've had dessert, first. Of course, I may well have cheated myself. Dessert was not particularly Italian, but it was my personal favorite...Creme Brulee´. Imagine this...Chef, clad in his classic chef whites, rolls his silver cart of magic into the roomful of satisfied, yet expectant, diners. Atop his cart, whipped cream, lady fing...

I have a very rich dream life, it allows me to do things that, frankly, I can only dream about. Just the other night, I was a young recruit in physical fitness training. I was one of many and I was lost amongst the many when I wanted to be one of the few, one who excelled at running. I talked a local health club into accepting me as a member despite their reservations over having military clients, due to their rowdiness. They recognized me as a member of the military because of my "high and tight". (Yeah, I told ya, rich dream life!) Three of my compatriots did likewise, so we trained together. You'd think we'd run on the treadmill but no. We trained in the swimming pool, both swimming and running. Naturally, we almost got "the boot" for horseplay. What was most interesting to me was how we defied physics, training ourselves to run flat out by running sideways on the pool walls. With the pool full of water, no less! I loved the feeling of running, Espe...

Highlight of the Day: My daughter arrived (Unfortunately, she developed cold symptoms on the plane.) Lowlight of the Day: Tobii spontaneously disconnected from the internet in such a way that reconnection was impossible without hands.

I may pass sooner than later. I'm having terrible spasms throughout my organs and around my heart. I wake up with my whole body quivering. Much to my dismay, nobody seems to notice.  Fasciculations herald the death of the muscles, in my personal observations. Therefore, I figure I will likely die suddenly from a catastrophic organ failure. I know I'm paralyzed but I'm unnerved when my body seizes. I gasp for air almost every time I'm changed, as I'm being lowered, my body stretches, then my diaphragm spasms big time.  Though I'm gasping, caregivers continue to lower my body to proceed with changing, without realizing it, they are increasing pressure on the chest, with the weight of gravity. Instead, it makes more sense to raise the head of the bed, to reduce pressure on the chest, then pause until the spasm (gasping) passes. This was my state of mind yesterday evening.  Luckily, I got out of my head and shared with my husband and one of my favorite, and mo...

I've had some amazing caregivers over the course of my ALS journey. In fact, I've had some amazing friends who acted in place of caregivers, in my tumultuous early days, when I lost mobility and emotional degradation (unbeknownst to me at the time). Marcie comes to mind. She dropped everything to care for me, despite the disadvantage of not having any real idea of what ALS was. As I deteriorated, my hands failing, using a cane, and becoming unable to dress myself, she prepared food and babysat me through the night. (My husband worked the graveyard shift.) If you saw the movie, "You're Not You", and remember the bathroom scene with Hilary Swank and her new caregiver, played by Emily Rossum, awkwardly maneuvering urination and wiping, then you witnessed Marcie and I. She was great but I focused and built upon perceived negatives (my motor neurons NOT at work). I severed our relationship due to exaggerated fear and anger. At the time, I thought I was astute and jus...