IntrinsicTina

I am so fortunate! My disease, ALS, is a moving target of symptoms. One day, I can tolerate being flat on my back for a few minutes. The next, it feels like my throat structure is collapsing under gravity. The reason I'm so fortunate is that I have very skilled, very compassionate caregivers. As long as I can communicate my needs and the reason for my explicit demands, they are pleased to lend assistance. Thank goodness I got my Tobii I-series speech device when I did. Just under the wire, you could say. December 2013, the next month the government would stop paying for the devices, a ghastly budget cutting manuver, taking away the voice of people who need it most. While our disease takes Away our muscle function, it leaves us with complete sensation and full cognition. Imagine not being to tell someone what is wrong and how to help you. Hell on Earth. . .

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...

One of my neighbors, a tiny woman with rail thin arms and bird-like legs, captures my attention every day. No small wonder since we have line of sight into each others rooms. I don't know what her affliction is but it has her operating at a near baseline level. I haven't heard a clear word from her, only gutteral sounds and the tinkling of her hand held bells alert us of a need. She points to her open mouth to signify hunger. Since my arrival four months ago, I've been compelled to make contact to establish a friendly relationship. I started with smiles to which she'd duck her head. On her brief visits to the hallway, especially during her meals, I'd stop my wheelchair, smile, and say hello. Each time, she would seemingly studiously ignore me and urge the caregiver for another bite of her pureed meal.  The meal making an abstract mess of the pillowcase bib, begging the question, "Is any of the meal getting inside?" This little waif of a woman twinges m...

1 It's difficult to relinquish control. Control over my environment. Control over my socialization. Control over my food. Control over body and it's functions. I miss being able. Able to pluck a dead blossom. Able to pick up a dvd and pop it into the player. Able to crack open a brand new hardback Bestseller. Able to sort, fold, and stack my own clothing. Able to water my container garden. Able to wipe the dust, grit, and crud off my wheelchair. Able to make my bed like I like it. Able to treat stains when I dribble my lunch. Able to select a chocolate and lift it my mouth. I miss being able to mingle among my peers. Able to select classes and go to college. Able to hold a baby and watch children. Able to go to Starbucks and choose between chai tea latte or carmel machiatto. Able to go to the park, lake, ocean, mountains, library, Trader Joes, Safeway, EMP, museums, mall, hospital, etc whenever I want. ... I miss being able to prepare healthy and delicious meals. Able to ...

The power of love just amazes me and throws me for a loop. Out of the blue, my husband bends down, grabs me, hugs me, kisses me, and  straightens up with wet eyes. I press my John Wayne for what's going on. He says, "Sometimes I just miss you."   Wow! My heart could just burst! Feeling so abandoned and thrown away, then feeling like a dreaded obligation. Questioning my decision to ride out this disease, not taking the "easier, softer way" out. Being present for all the losses, the declines, and hardships. And then his mask slips and he shows me his heart. He still loves me.

I've really had to work at the art of foregiveness. Still do. It goes against my natural instincts. When you hurt me, I want to crush you. Then, I want to fan the flames of my resentment. I want everybody to know you for the lousy human being you are. Thank God, I found Alcoholics Anonymous and did the work. In fact, I still have to. Being terminally ill does not give me a pass. I've had to continue to work on resentments, lest they take over my life. As a woman with ALS robbing me of my movement and voice, I have lots of time on my hands. Time I could spend nurturing petty grievances into full blown hatreds. And, if you think I can't drink just because I'm paralyzed and can't tolerate thin liquids, then you know nothing of the power of addiction behavior. We have ways. I get offered opportunities to drink alcohol all the time. And, I have a nifty PEG tube, a direct pathway right to my stomach. I have the potential to shotgun like never before! Not to mention,...

My stepdad became insta-father in the early 70's when he married my mother. He was young and green, hardened with the discipline of the U.S. Navy. Wholly unprepared to be a father to two love-starved waifs who had been drifting along with their bartender mother in the seaport town of Long Beach, California.  Family lore is that they met in the bar my mother tended and she was, and always has been, the life of the party. He was a comparatively-reserved recruit who pursued my beautiful, street-wise, sharp-witted mother. Moth to the flame...I'm just saying. I remember accepting him immediately. Life seemed different right out of the gates. Suddenly, it was sitting at the table like a family (and getting popped on the head with a fork for infractions to a code we were unfamiliar with.) My sister was, and remains, an extremely picky eater. Meals became delicious but it was a minefield of expectations we had trouble living up to. Many dinners culminated in my sister sitting at the ...