IntrinsicTina

At the risk of alienating friends, neighbors, and family: Just watched the second presidential debate between Hillary Clinton and Donald Trump.What a shit show! An embarrassment for our nation. Every year we have eroded more and more. I will likely pass from this world by 2017, but I worry for my daughter and her future. Our leaders have no sense of dignity. Actually, that is what I see with Donald Trump. Hillary Clinton seems to want decorum and dignity but the Donald has had a debasing effect on American politics. His tactics have had a polarizing effect on me. His bullying and bluster are over the top. What he refers to as "locker room" banter as if that somehow makes it acceptable, is not much different than Paula Deen getting caught using the "N" word. It absolutely reveals his heart and his low opinion and disregard of women. I truly fear for the future of our nation.

17 A friend died today. That phrase, all too familiar when one collects friends with ALS. What was noteworthy for me, was my reaction to it; I was enraged. An example of frontotemporal disease, the emotion-altering gift to 10% of ALS sufferers? Or an understandable reaction to this debilitating disease? Or I'm just an a**hole? You be the judge; I can't stop you anyway.  My first reaction to the news was grief; tears streamed down my face, as I recalled her effervescent personality. I only met her a few years ago during an ALS event. She was magnetic; you wanted to be lucky enough to be in her orbit. If she was attractive, the added combination of her husband's devotion, and her faithful sidekick, a lovely retriever, made her impossible to resist. If I'm unflinchingly honest, I coveted her life, with or without ALS. Her husband never abandoned her, never left her to steal her last vacation, and probably cuddled her in bed toward the end. Her community came together to...

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...

Living in a nursing facility and having mobility issues gets one automatically placed in adult diapers. (a real ego crusher being forced to unlearn a lifetime of good toileting habits) I'm fortunate enough to be in a facility run more humanely, and can, on occasion, use a bedside commode. However, I must be hoisted by lift and sling, sans dignity-preserving covering, to be deposited upon said commode, like a bottomless, lame zip-lining ride, hoo-hah hanging out. And that's not the most cringe-worthy part! Add two well-meaning, albeit bumbling patient care technicians, who cannot retain the procedural steps to transfer me and must discuss, start, hesitate, rediscuss, restart. Whilst I clench butt cheeks, rolling my eyes at the absurdity, and try not to think ill thoughts. They finally get me up in the sling when progress again ceases. At the same time, suspended a foot over my hospital bed, my bowels moved infinitesimally. I scolded them in panic, disregarding my dysphasia, my...

Dear Renee', I saw you today, actually, I saw your image today. You were, pretty in pink, standing in front of a weeping rock wall, arms upraised, smiling to the Heavens. Wow! I cannot be sad when I see how much you enjoyed life. We were in Hawaii, on the island of Maui (your favorite), on the road to Hana with Dawn and Mark, myself, Rodney and yourself. But, this one is just you. The year was 2006, your first trip to the Islands, and you were ready to embrace the spirit of aloha. What fun to spend that time with you! Everywhere you went, you were decked out in flowers and/or a sarong. You were living in California, the rest of us were in Washington, thus we were Renee'-deprived. How fortunate we were when you decided to move to Washington. (I digress.) I remember your pedicure, shocking orange with white hand-painted plumeria, the exact shade as Mom's nails, though the two of you did not confer. I remember your toes in the sand, I should, I photographed them. It evok...

22 "I got to hold a cat! " I could scream it from the mountaintop, if I could only coax my throat muscles into working and get back to the mountains. Today, thanks to Chrissy, a social worker here at Bailey Boushay House, and Sandra, the recreation therapist, I, my husband, and Tessa, one of my patient care technicians, got to go to the "Meowtropolitan" for coffee and cat therapy. That's what I said, coffee and cat therapy, well cats, the therapy part is my take on the situation. I've been starved for kitty contact since my own sweet cat, Gracie, passed away a year and a half ago. Although I've lived in a skilled nursing facility situation for the past two years, my husband, dutifully brought my big, furry, gray tabby "baby" to see me. I yearned for the times when she'd arrive in my husband's arms. He'd place her on my lap as I sat, reclined, in my fancy, motorized wheelchair. I was already unable to pet her but just having her ...

Following another lukewarm, under-spiced meal of chili, really a mere suggestion of chili, my husband wanted to know what I wanted to eat from the local Italian joint. I indicated the beef bracioli. "Bracioli is usually cooking long and very tender. Ask them.", I typed, deleting errant keystrokes and retyping. He kept steering me to spaghetti and meatballs, forcing me to defend my choice. Spaghetti gets hung up in my throat, choking me. Then he goes on about the veal parmesan. All the while I'm trying to speak through the Tobii, fighting it to "see" me. By then, I'm getting frazzled. Then he tosses out that I'm purposely hiding the top line of my text on Tobii, a defect that I have no control over, that frustrates me to no end! I lost it! Screaming my wordless, soundless frustration, tears streaming down my face, blood pressure erupting, my impotent rage trapped within my useless ALS-ravaged husk of a body.

I have noticed that as I have become less able to communicate, the more acceptable it is to assume my mental incapacity. Even though I reside in a prestigious nursing facility, I am falling victim to the notion that I am not reasonable or prone to fits of temper for "no reason at all". These prejudices, that is what they are, are harmful to the ALS patient. They leave us grievously wounded, susceptible to physical harms, like pneumonia, choking, death, etc; as well as mental harm, like grief, despair, depression, and death of the spirit.

22 As a person with ALS living in a nursing home, I encounter much ignorance and get homogenized care. That is not saying my caregivers are stupid. On the contrary, they are intelligent and highly skilled. The problem is that ALS is not your typical disease. To effectively and safely care for us, one must have a thorough understanding of ALS disease processes. ALS destroys nerve cells in the brain and spinal column that control muscles, muscles that control arms, legs, eating, and breathing. As these nerve cells die, they cause itching, numbness, spasms, involuntary movement, varying degrees of pain, and, ultimately, paralysis. It's extremely important to understand what is NOT effected by ALS. Mental competency is NOT effected. Although, there is growing evidence of possible emotional involvement. Sensory is not effected, that includes the senses of touch, smell, taste, sight, and hearing. In my opinion, caregivers who employ critical thinking skills fare far better with ALS p...

"If you are trying to kill me, raise the head of the bed all the way and hold my arms forward on the pillow. It allows the torso to collapse down and crush the diaphragm." I said this to my patient care technician this morning, following a choking incident. Ungrateful, huh? She's feeding me and I'm an asshole! In my defense, I've had two days of caregiver mis-steps and I'm at wit's end. I get tired of struggling for my life. I mean, beyond the ALS.  While being turned onto my side, I had to give detailed step-by-step instructions (veritably impossible with severe dysphasia), when the caregivers could not understand that I needed them to move my foot for me. No matter what I said nor did, they insisted on repeatedly asking if I wanted a pillow.   After becoming agitated, the charge nurse came to sort out the problem. Unfortunately, I was unable to respond, while face down, neck wrenched.

Plastic garbage bags and totes litter my floor but they don't contain trash; they contain stories of my life, in the form of clothes. I have ALS, otherwise known as amyotrophic lateral sclerosis, motor neuron disease, or Lou Gehrig's disease. This degenerative neuro-muscular disease destroys the motor neurons, the communication system between the brain and muscles, which renders one paralyzed and breathing compromised. There is no treatment nor cure thus ALS is 100% fatal. Since I find myself in the latter portion of the disease, a quadriplegic, confined to my bed most days, I have no practical use for much of my hard-earned wardrobe. Finally the stars aligned where I could bear the dreaded chore, and my husband was willing to transport the dozens of 30-gallon spring green totes, full of shirts, pants, robes, career-wear, sportswear, and dresses to my nursing home. (Yeah, I live in one of those! It's where one goes when one doesn't purchase long-term care insurance ...

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...

I'm in a really good care facility, I really, really am.  Therefore, I am loathe to complain as much as I do. It would be incorrect to assume that Bailey Boushay House is an awful facility based on my complaints thus far. On the contrary, it's a fabulous place with mostly high quality caregivers. (I'm in a position to know.) I'm upset about a recurring problem I'm having with a male charge nurse. The first time I became aware of him was following my arrival, February 2015. I was struggling with caregivers, unfamiliar with my care, who placed me in a situation compromising my breathing. As a paralyzed person, with severely impaired speech, I was fighting a losing battle for my life. I was, however, able to make some noise through adrenaline-fueled panic yelling. He turned away in the hallway, muttering "Oh great, another noisy one." or a close approximate. I've had numerous negative encounters with him since. When responding to my calls, he used min...

It pains me to send caregivers packing. Before ALS, I was much more polite--not that they would believe it. Some days I awaken intolerent, protective, without energy stores. Today was such a day. I was awakened from a dead sleep, in the midst of a vivid dream, by a man in my face, asking if I was having breakfast. I wasn't ready to answer the question since I was still groggily trying to extricate myself from dream state to reality. I'd been carrying an armload of clothes from a motel room, my husband and I were staying in, to a disembodied voice, "Tina, are you eating breakfast?". I responded, "Let me wake up." To which he responded, "Your hair? Your head? Do you want your head up? Are you having breakfast? Do you wanna eat?" all in rapid succession. My ire raises as I'm peppered with questions by this little man leaning into my face, hands on knees, like he's talking to a kindergartner. Why, oh why don't they follow the care ins...

I'm so alone. My husband keeps showing me so. Today, he came to the Seattle MOHAI and never gave me the opportunity to join him. This, in itself, wouldn't be so bad, but consider this: He drove 20+ miles to go to this museum; he knew I wanted to go to that particular museum, since we missed opening hours last spring. It's located close to the hospice house I'm stowed at. We own a wheelchair van. He doesn't include me in any family events, despite close proximity, the ability to transport, and my desire to attend. He assured me that he would keep me involved in life, promising to position my hospital bed to the living room (in our home). He's off work for over ten weeks and yet, I don't ever see him before 4 pm. He wanted me to agree how well he's done, visiting me. And, yet, I rarely see the light of day, the seasons change, or breathe fresh air . This is not love. Ours, is the relationship people are grateful, they don't have. Why be angry ...

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...

I'm disappointed! Last night, or should I say this morning, I composed an email complaint regarding two new hires. Both of them have me worried for my safety. One, a nurse, tried moving me on her own and ended up leaving me flat on my back, with a pillow on top of me, no call button, and she closed the door. All of which is a recipe for death for an ALS patient with my issues at this stage of the game. Luckily, I did not die and was found by a pair of PCT's, breathless, angry, and shaken. The other is a PCT with attitude issues and no desire to learn the idiosyncrasies of caring for an ALS patient. I've been "helped" by her three times now and I read her loud and clear. She is not cut out for the moving target of ALS symptoms. She's already gotten angry with me and beat feet out of my room when she should've been doing her job, learning how to care for an ALS patient. I don't need a caregiver who takes training, personally and is quick to anger and...

I seem to dream of everything that has ever happened in my life. In these dreams, I am whole, I have ALS but I have yet to display the symptoms. I am walking, talking, using my hands and fingers normally. I am not extraordinary, just as I was in my real life, performing routine activities on an above average level. A sought after employee that held herself in low esteem--always striving for perfection. Last night I went back to work at Wendy's Old-fashioned Hamburgers in Kent, Washington, the site of my first job. Lord only knows why. I was positioned in the front end as order coordinator but given no instruction; it was assumed I knew what I was doing as a former employee, regardless of the elapsed thirty-five years between then and now. The first order came in as I stood between the cashier and grill operator; I strained to recall the activities of my role. Do I lay down the bun and layer on the condiments for the grillman? Wrapper or no? Dip the chili? Ready the drinks? I ...

I keep discovering that my best caregivers have left. Just about the time I am comfortable with people -- I discover they are leaving, or worse, they've moved on without saying good-bye. Please note: I detest being denied closure!  I understand that people have a right to move on or move up -- it's hardly a stretch to imagine a gifted, intuitive patient care technician (PCT) may want to strive for more, going back to school to become a nurse or a nurse that wants a more lucrative or challenging position. I do not begrudge them, I applaud their ambition. Not that long ago, I shared that ambition -- after all, I earned my college degree in accounting in 2005 facilitating a career change from administrative assisting. However, a part of me, selfishly wishes they'd confide in me, share their plans for the future, be sure to say good-bye when they leave. My emotions do not differentiate between family, friends, caregivers these days. I get emotionally attached to those who a...

Sometimes I'm ungrateful and sick-to-death of being a cog-in-the-wheel hospice resident. Most days I'm grateful to God, the caregivers, and the system that I have good care since becoming paralyzed by ALS. Caregivers tend to my every single activity of daily living; dressing, eating, toileting, rolling over, wiping my nose, you-name-it. If my door is open, volunteers try to entertain me; some activities I participate in, others I avoid. As in any life, each day brings myriad variations of daily minutae. In the course of receiving medications through my P.E.G. tube, I get interrupted from activities, my private space gets invaded (my "PEG" is positioned right between my breasts). Invariably, I get medications dripped, splashed, and dumped on me. Worse, I can't speak intelligibly which leaves me wet and sticky often Since nurses don't seem to notice. Breif changes, many times a day, are usually fraught with annoyances.  During the day there is normally eno...