IntrinsicTina

I've just put a cap on the final episode of a Sons of Anarchy binge fest, and I'm reflecting on my own life experience with bikes, bikers, and outlaw motorcycle clubs.

I think ALS is what one gets when one prays for patience. I don't actually recall praying for patience, but I thought about praying for patience. That must have counted. I number among that neurotic bunch of people who believe we have a daily reprieve on our alcoholism, based upon our spiritual condition. Indeed, I've logged over twenty years sober and clean. I like to say that I learned how to pray in my 12-step program, but that is not completely accurate. I learned how to pray as a child in that rout manner:  God is great. God is good. Let us thank Him for our food. Amen. I also learned to say nighttime prayers: God bless mommy and daddy, and Grandma and Grandpa... My foray into Born Again Christianity, in my teens, left me feeling like a fraud upon my return home to a more hedonistic household.  Therefore, I credit my 12-step program with teaching me the nuts and bolts of praying right. Thanking God for all the blessings in my life. Not giving Him my laundry list o...

Today marks the twentieth anniversary of my last alcoholic beverage. It will be a deferred celebration. I live in a nursing home, a hospice facility, more precisely. My husband wished me a "Happy Birthday" and gave me a fancy enameled coin depicting the Roman numeral for twenty, "XX". It's a beauty! Black, navy, red, and shiny gold. My girlfriend and sobriety sister, Arlene, sent me an email Birthday wish. I may have additional Birthday wishes on FaceBook, but I dare not check, lest it interfere with my AAC device**. Tough break, the most popular social media site on the internet, and Tobii cannot be bothered to make them compatible. Argh!!! Add that to Tina's bitch list on technology available to ALS patients. And add that to my personal resentment list. Yes, just because one accumulates 7,300 days in a row of not drinking alcoholic beverages and works the program of Alcoholics Anonymous, one is not immune to resentments. We just know what to do about...

I love my husband. You are supposed to love your spouse. But I'm fortunate enough to really know that I love him through thick and thin, sickness and health. Our love has been sorely tested. Love gets tested from many directions. Fidelity, finances, and children are the biggies. And we were no different. I lost a marriage, a lifestyle, and financial security when my first marriage dissolved due to infidelity. His history bore the same scar. We both had a single daughter from our first marriages that we saw only sporadically thanks to custody battles. We were mirror images on many levels; our children, hunger for a monogamous relationship, our emotional scars, our Harley Davidson motorcycles, gainful employment...What more do we need? How about love of God and compatibility? Sobriety? About God, we both classified ourselves as believers. We weren't church attendees, nor did we belong to a congregation. If we did, we may have had some issues. But our church avoidance was an...

. I've long wanted to chronicle my own experiences regarding sex. I'm not exactly sure why because I'm certain it places me squarely in slut territory, and opens me up for criticism and shaming. However, experience has shown me that when tough things are lain upon my heart, and I obey, good things are generated, that somebody needs to hear, or read, exactly what I have to say. So, here goes...

Sing it with me... "I went skydiving; I went Rocky Mountain climbing; I went 2.7 seconds on a bull named Fu Manchu..."  Hell to the yeah!  It was an awe-inspiring, balls-to-the-wall, scream-worthy, boundary-pushing event! A not-to-be-denied booster shot to my ego. It was so far out of my formerly staid domestic life. Nobody saw it coming...not even me! Following the implosion of my marriage with the requisite accusations, grenade-lobbing of insults, splitting of the money, bills, furnishings and paraphernalia of a married life, I was an empty shell walking. Alternately filled to bursting with anger, bitterness, rage, self-loathing, and terror, without a support system, I turned to alcohol, men, and anything that took me out of me. Oddly, it was a man, my paramedic, who appeared following a suicide attempt, that introduced the idea of skydiving. He described his experiences and the idea took root and quickly came to fruition. One beautiful, sunny desert day, I awoke to t...

2 Today marks my 21st anniversary of being a part of Alcoholics Anonymous. But, it is not my AA Birthday. I did not stay sober. I drank, again. Today is also St. Patrick's Day. Why talk about Alcoholics Anonymous on St. Patrick's Day? What began as a Christian feast day, celebrating the establishment of Christianity in Ireland, suspending the Lenten restrictions on eating and alcohol drinking, has degenerated into a day of celebrating Irish heritage and drinking to excess. I was among the revelers, participating in bar crawls, drinking green beer, and getting blind, black-out drunk, no religious connotation whatsoever. An excuse to claim my Irish heritage and dial-up my debauchery. The problem arriving upon awakening, the alarm too loud, my mouth parched -- feeling like an ashtray, though I'm a non-smoker -- stomach roiling, jittery, and surreal. And the horror of finding a stranger in my bed, or worse, not recognizing my surroundings or playmate. I well remember the ...

Twenty-four years ago, I went through the most challenging experiences of my life. Infidelity, estrangement from family, husband, daughter, grandfather, mother-in-law, sister-in-law, et al. A complete breakdown of self; no coping mechanism, no self esteem, suicidal tendencies. No safety net.  I clutched at whatever showed me the slightest bit of attention, mostly men. They were a quick fix, a balm to my battered ego. My empty dream home, devoid of life, an empty shell, a symbol of love lost and gone sucked out my will to live. An impending divorce, court battle for custody and foreclosure further overwhelmed my pysche. I sought solace in sordid places and drank my inhibitions into submission. In the light of day, my morals returned whereupon my rationalizations kicked into high gear. I hated being me in my situation, my skin didn't fit. I tried so hard to move forward in my life. I made sure that I had a job even when I couldn't get through a shift without crying. I enrol...

24 Saturday, my friends brought me a meeting, a recovery meeting. I so appreciate this simple act of love and kindness, this act of service, my lifeline to the program of Alcoholics Anonymous. Although, it must be hard on these friends to bear witness to my deterioration, they are faithful in their mission. I've been around the program of Alcoholics Anonymous long enough to know that the motivation is not purely altruistic. They get insurance of another day of sobriety; they get the opportunity to live their lives happy, joyous, and free. Even though, they have their choice of many venues to acheive this goal; they could attend any meeting of Alcoholics Anonymous, work with a sponsee, work with a sponsor, or any other person for the purpose of recovery. Heck, they could go take a meeting to another person confined to a nursing home, hospital, or in a recovery center, or incarcerated in a jail or prison. But, they spend time and resources to come to bring a meeting to me. I am g...

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...

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'm so fortunate! My daughter loves me. What's the big deal? It could very easily have gone the other way. And I dare not forget it. True, I made certain she had good foods, plenty of rest, dressed adorably, and got lots of hugs and kisses. For her birthdays, I learned to decorate cakes and made an amazing Minnie Mouse cake, as well as a Teenage Mutant Ninja Turtles cake when they were all the rage. Halloween, I sewed her costumes, beginning with a bunny costume I modified from a Cabbage Patch Kid's pattern. Next, came a voluminous sweet clown costume from fuschia pink, royal purple, and sky blue satin fabrics. That one was sized so abundantly and was so beloved that she wore it a few years until the witch costume. Yeah, I made that one, too. We checked out stacks of books from the library and cuddled up to read them in our overstuffed recliner. I taught her the fine art of armpit farts, in front of the mirror one hot summer day. We bowled together on a league. I jump...

Occasionally, we are seized with a rebellion so sickening that we simply won't pray. When these things happen we must not think too ill of ourselves. We should simply resume prayer as soon as we can, doing what we know to be good for us. -- TWELVE STEPS AND TWELVE TRADITIONS, page 105  Gee, I could have saved myself years of self-reproach by taking it easy on myself. "Try" as I might, I never could make prayer, in the traditional sense, a daily occurrence for stretches longer than a month. I had good intentions but inevitably, I'd be running late and forget. Or worse, I'd get a big, fat bout of attitude about not getting my wishes (the permanent position at the Gates Foundation, being fired from my last job when my health deteriorated, the cancellation of my Panama Canal cruise, and the various abandonments I experienced following my ALS diagnosis) and off I'd go, cursing my Higher Power, turning my back, isolating, and wishing I were dead (actually, I wa...

My husband asked that I write about my experience as a patient in the skilled nursing facility, Lifecare Center of Federal Way. It's a difficult endeavor due to my many traumatic experiences and the impact of fear and anxiety it left upon me. I hesitate because I don't want to insult the few good souls who made it bearable.  One may wonder why I did not document issues as they occurred. At first, I was unable to write due to the progression of ALS. Although, I owned a speech generating device, it was new and I was unpracticed. Additionally, I was having issues dealing with either frontotemporal disease (FTD) or PseudoBulbar Affect (PBA). My emotions were raw and I was laid open to impulsivity and acting rashly. (It's important to know what these conditions are NOT. They are NOT dementia. They do NOT effect cognition.).  I mention these deficits, not to evoke pity, but to gain understanding. Finally, I was intimidated. Fear of reprisal was more than a vague fear, on at lea...

The only thing that matters is that he is an alcoholic who has found a key to sobriety. These legacies of suffering and of recovery are easily passed among alcoholics, one to another. This is our gift from God, and its bestowal upon others like us is the one aim that today animates A.A.'s all around the globe. --TWELVE STEPS AND TWELVE TRADITIONS, p. 151 When I read this paragraph, it paints a broadstroke picture of our AA way of life. Simply speaking, one alcoholic to another alcoholic shares their experience, strength, and hope, as he knows it to keep sober himself. I'm not much of  a sponsor and yet, I've managed to stay sober. I've always nurtured a fire within my heart for sobriety and Alcoholics Anonymous . Even times  when I was absent  from meetings (which I do not .recommend), I remained committed  to sobriety, prayed rightly, shared my experience, strength, and hope with other alcoholics, and read our literature.  Admittedly, this practice is ...

I struggle. In many ways, I struggle. I struggle to be heard--to be understood as the muscles atrophy in my mouth, tongue, and throat, such is the reality of dysphagia. I struggle to move food from one side to the other within the confines of my mouth. I struggle to chew, to swallow, to nourish my body in a natural manner. I struggle to keep positive in the face of the losing battle that is ALS at this point in time. I struggle to graciously accept the fact that the majority of my friends and family don't understand this disease and keep their distance from me. I struggle to be kind to caregivers who don't know how to care for me -nor follow my care plan. I struggle to stay awake during the day. I struggle to be patient when I get yet another person unfamiliar with my eating/feeding routine. I struggle to pray and meditate each day. I struggle to dream up topics for my blog. I struggle to keep out of regret, remorse, and resentments. I struggle with decisions I've mad...

I spend my days in solitary trivial pursuits and in slumber. Listening to audiobooks, contributing to websites like patientslikeme and goodreads, blogging, reading the Daily Reflection on the Alcoholics Anonymous website. I have a Word of the Day delivered to my email from Dictionary.Com. Despite my impending demise, I'm intensely interested in learning. Classics, mystery, paranormal romance, are my preferred genres. But I've ended up reading non-fiction, biographies, true crime, and climbing books. On Good Reads, I document the books I've read, rating and reviewing them, and sharing these on Facebook. Oh yeah!  I forgot. I spend time on Facebook, communicating with family and friends and subscribing to pages centered around PALS communicating with PALS. This ended up being one of my main means of communication. On Patients Like Me, I document my ALS progression, my moods, and communicate with other persons with ALS (PALS) from all over the world. Note: ALS is also kn...

Nineteen years sober today. My husband bought me a beautiful coin commemorating my time free from alcohol and drugs, one of our family traditions. Some of my fellows will be bringing me a meeting and a cake at the end of the month to celebrate. So grateful for that.

After catching up another PALS blog, it put me of a mind to do what I learned in the recovery community, make a gratitude list. While I've had to endure losing practically everything I've worked for and who I am, I've got a lot to be grateful for. I've been abandoned by my husband, pigeon-holed in a nursing home, and virtually left for dead by family and "friends" but I still have much to thank my lucky stars for. I live in the best facility in the state of Washington for people with ALS. While it's not exclusive to ALS sufferers, it is a place that has the best resources available for our unique and rare disease. My room has a built-in lift (EWC), fresh paint with low VOC, linoleum devoid of stains and rips, a large sunny window, original artwork, tech-saavy appliances, namely a flat screen television with a Blu-Ray Player that is operable by my Tobii speech generating device (SGD). Yeah, I own my SGD! I'm extremely grateful to be able to communic...

The following is an angry rant from last month. Today, I'm more accepting and no longer consumed by anger and jealousy. Why publish this post? Honesty and full disclosure.  Coming to terms with the things I cannot change and the poison that sometimes takes root in my brain. Time to do more work...I got a message from my mother tonight going on about my sister's health issues and how my other sister is with her. And she's so glad that she's with her, taking care of her. Give me a God forsaken break and gag me. Am I supposed to be sad for her? She has had the attention of the entire family for the duration of my TERMINAL illness. Her illness, while life-threatening and serious, could be helped by quitting smoking and, eating healthfully, and exercising. Yet, she flouts medical advice, keeps smoking, overeating, gobbling pain pills, and driving under the influence. Sounds like a death wish to me. Meanwhile, I have no chance at survival, no matter how much I don't ...