IntrinsicTina

Taking care of me is no easy task. As a person with ALS who has been made a quadriplegic by the disease, I require a Helluva lot of care. All of my activities of daily living (ADL's) need to be done by others. Telling somebody this does not begin to quantify the myriad details that must occur to keep me safe, healthy, relatively comfortable, and happy (or is the word  engaged). I rely on caregivers to feed, clothe, and medicate me. They change my position in bed and change my soiled briefs. They bathe me, brush my hair, brush my teeth, shave my legs and pits, shampoo my hair, set me up on the commode, apply antibacterial powder under my breasts, make up to my face, and Calazine to my bottom. Even this level of detail doesn't tell the whole story. They transfer me from bed to power wheelchair and back, from bed to shower chair and back, from bed to shower chair to accessible bathtub and back, again. To accomplish these moves, they must use slings for the built-in lifts. They...

Have you ever had password problems,? If you're online, the answer is probably yes. You go through your litany of passwords until you're locked out, happen onto the correct one, or you have to reset and pick another from your litany or, God forbid, you have to make up a new one! It can be a test of patience for an able-bodied person but consider the challenges to the physically-impaired. I have A.L.S., Amyotrophic lateral  sclerosis, otherwise known as Lou Gehrig's Disease or Motor Neuron Disease (MND). My disease process has left me a quadriplegic, and I'm fortunate enough to own  a Tobii alternative and augmentative speech device. This device enables me to communicate using eye gaze technology. It's amazing and brilliant and totally infuriating when it doesn't live up to expectations. It doesn't function exactly like your home computer, in that there are a lot of extra steps. For example, typing this blog entry requires forethought and few options for ma...

"Your husband is a saint." that sentiment never fails to piss me off! Yeah, I should just graciously accept the compliment on behalf of my husband but... I've been on the receiving end of his surly temper, impatience, and complete lack of empathy. I've felt sheer terror when his hands wrapped around my throat; when he threw me out of the wheelchair van; when he walked away from me in the pitch dark of North Dakota and I was wheelchair bound. I've felt the bitter taste of spousal betrayal when he abandoned me on four separate occasions. .I went from a healthy independent woman to quadrapalegic in eight short months. I needed my wedding vows honored. "In sickness and in health..." Not abandonment and my man actively campaigning against Me, trying to prove mental incompetence and calling attorneys to investigate divorce. These are facts, not just my perception. He chose to cancel my ticket for a Disney cruise through the Panama Canal when it was to be...

Countless muscle spasms throughout my body, the kind that really hurt, focused primarily my neck, throat, and jaw. Usually triggered by effort, turning my head, yawning, looking upwards to name a few activities. Automatic stretches elicit calf, foot, ankle, and toe spasms that pinch and release.. My hands and arms are propped atop pillows to stretch my torso and allow my diaphram to expand to capture as much oxygen as possible. And still, my fingers trigger, my wrists contract, my forearms spasm. If my arms hang at my side, the weight coupled with gravity steals my air, leaves me gasping and panting. Although, I struggle on the commode with a lack of musculature, still there are zings to remind me there is more left to die. This process is not even close to over. .  I am transported to and from my bed strictly by overhead lift. I am lucky enough to possess a first class sling to assist in this endeavour. (Thank you UWMC!) It's a very large pocketed affair that cradles me loving...

Fifteen years today. My husband and I have been married for fifteen years. The majority of that time has been very good. We seemed to be well-suited to each other. Two dysfunctional people, lives warped by alcoholism, alcoholic themselves, One drinking and one not. Working Monday through Friday for the man. Riding our Harleys when we can. An inauspicious meeting in a cocktail lounge. Being dedicated to sobriety, it was not the place I imagined finding the love of my life. God seems to have a funny sense of humor. Oh, I can imagine what you're thinking... Tina, we've read your blog before, you're always baggin' on that guy, and didn't he abandon you in your hour of need? True story and worse but I don't always share the best moments. I bask in them and soak them up. I've never been held so tightly nor earnestly. In the beginning, when I told him that I loved him...His head would tilt to the right, his expression, surprised. Has no one ever loved this man ...

I've been mistaken for a boy back in my early days of forced pixie cuts and flat-chested androgeny. Mortified, I'd hoped for large breasts and long hair to brand me, unequivocally, as female..Of course, when hoped for breasts arrived they looked more like "man boobs", those fleshy protuberances that develop on fleshy men or boys. No real help. But eventually they formed well enough for the boys to notice. That could be a whole new blog, so let's not go there. Eventually, I would marry and have my baby girl. My breasts took on a whole new purpose. Nourishment.. I am among the women that found breastfeeding to be very rewarding and one of the greatest starts to my daughter's life. She was healthy, rarely sick, and thriving. My breasts had something to do with finding and pleasing my second and current husband though he will be red in the face over my disclosure.  Unfortunately, my breasts aren't the asset they used to be. At this point of my disease, my b...

Dreamed I removed all of my hair except hair atop my head. I was bathing in a white porcelain bathtub surrounded by white casement windows draped with sheer curtains that gently billowed in the breeze. I felt no temperature although I felt the silky smoothness of my hairless body. I was working at cleaning the bathtub of soap scum and stubble. And made sure the casements were gleaming. I leaned out of the window to see the neighbors getting ready to till their soil to make a garden. I had no sign of ALS. I could walk, talk, bend, reach, grasp, sit, stand, and feel normal. Reporting a segment of my dream has no purpose beyond documenting my mental acuity in dream state even though my body deteriorates from ALS.

I got aced out of yet another family function. Bella, my common law granddaughter, had a birthday and I kept aware of it reminding my husband and pressing that he give her $100 (same as the grandson to avoid favoritism claims between siblings). So, imagine my surprise when I let him know we missed her Birthday celebration and he informs me that he attended on Sunday. Damn it! It's rude, insensitive, callous, and cruel! 

I watched a movie on Netflix, "Detachment" starring Adrien Brody, about a disillusioned substitute teacher who starts to attach to his troubled inner-city students. One of the first assignments he hands out is to write a paper on what your family would say about you when you die. I decided to take on that assignment. Tina Flink, formerly Tina Kent, formerly Tina Angela Danner, was our child, our sister, our family. She gave us a beautiful grandchild, and a lovely niece. Tina was hard to know. She would bring us close. Inviting us into her home for family holidays; Easter, Thanksgiving, and Christmas then she'd be off, living her life. She loved her husband and her daughter and her cat, Gracie, And her family. Tina was a precocious child. She carried good grades despite having to move a lot as a Navy brat. She was close to her grandparents, spending many summers with them at their home or going on roadtrips. She learned macrame´, ceramics, embroidery, needlepoint, croc...

New people taking care of me has to be the bane of my existence! I am not a good candidate for on-the-job training anymore. At least, not at night nor in a crisis situation. ALS at this stage is extremely taxing on my body. My muscle loss has so accumulated throughout my limbs and torso that minimal bodily functions have the ability to sap my strength and my patience. For example: Two patient care technicians (PCT's) new-to-me, not their jobs, are assigned to care for me. I need to be prepared to go to bed from my power wheelchair. (There is nobody available with experience in helping me, an ALS patient. Therefore, nothing that transpires is their fault and I bear them no ill will. ) They come in all smiles and good humor (they are adorable) and I am happy to see them. They know that they have to remove my Tobii alternative and augmentative speech device from my state-of-the-art Permobile power wheelchair. The trouble began with not knowing how to remove the expensive and criti...

Tuesday is shaping up to be my best day of the week. Every day holds the requisite eating, changing, television, and napping. But Tuesday, I got a glorious, hot bath in a handicap-accessible bathtub with my Angela and Lisa, reorganized my shower caddy with my Lisa, read "The White Album" by Joan Didion with my Lindsey, "supervised" doughnut-making and sampled same with my Sandra among others, and listened to Ryan Feng play classical piano. A new book fell into my lap today. Of course, I mean that figuratively. "Play It As It Lays" by Joan Didion was just laying on top of the informal Bailey Boushay House library cart, so I borrowed it. .Guess what we'll be reading? I feel very blessed!

Demands made upon other people for too much at-tention, protection, and love can only invite domina-tion or revulsion. TWELVE STEPS AND TWELVE TRADITIONS p. 44 I've heard people in AA say that every question they've ever had was answered between the pages of the Big Book of Alcoholics Anonymous. That has not been the case for me. Perhaps, I did not know where to look. Perhaps, I wasn't asking the right questions? Sometimes, I get my answers retroactively. Like now...The preceding quote, which actually came out of the 'Twelve and Twelve', as they say, Gives me some wisdom I needed last year when I clung so desperately to my husband when my disease caught up with me so quickly. (If you're reading this blog for the first time, I have A.L.S. And became paralyzed within eight short months. I was forced into a nursing home when my husband abandoned me a few months after that. I am currently 18 1/2 years sober.) When I ended up abandoned, I could only see the res...

One of the most luxurious things in life has to be a steamy hot, silky bath. For the first time in over two years, I had a real honest-to-goodness tub bath!  Bailey Boushay House has two walk-in bathtubs and thanks to two occupational therapists and one overhead lift, I got this wonderful treat!I was able to linger until they lifted me out like a boiled potato.