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 ...

I'm working on some tough stuff. Stuff with the power to wound, but I view it as beautiful. It's a story of coming of age, coming to terms, foregiveness, and, ultimately, love.

What a great couple of days! The June installment of the ALS Association Support Meeting held on the third Wednesday of the month at Bailey Boushay House. Although this particular meeting brought up some feelings of loss and grief, it was educational, inspiring, and peaceful. Barcha taught us about P.E.R.M.A. Otherwise known as positive emotions, engagement, relationship, meaning, and accomplishment. Not what you might think and something I cannot speak to. But it explained why I am happy for the most part despite my disease. Another reason for the great days was a very special visitor, Rodney's cousin, Ruthanne Brauch, who has been steadfast support since before I got ALS. We met when I planned a 95th Birthday party for Aunt Mac, my mother-in-law, Magdalena "Madeline" Flink. Somehow, in the midst of all the party hubbub, we made a connection. I liked her immediately, and she liked me. We loosely stayed in contact, then somebody in the family grapevine got their wires c...

I just can't do it. I cannot lie to save her feelings or get on her good side. My experience is my experience. As I learned by having my daughter, it's not easy raising a child. She has different memories than I do.  The difference can be startling. The truth is that I don't have many good memories of growing up as Charleen's eldest child. I have good memories but mom is just not involved. I remember being yelled at, backhanded, lied to, and stolen from. I remember being made to be my sister's keeper, then my other sister's keeper, and then, my brother's keeper. I don't remember ever being allowed to just be a kid. I remember being sent to bed whenever the atmosphere got light. I grew up in a cigarette smoke cloud. Mom smoked a blue streak whether at the beach, in the house, or in the car. My father smoked, her friends smoked, her second husband smoked, her boyfriends smoked, up until my current stepfather, who has never smoked but tolerated her smok...

This weekend my husband gave me a wonderful gift..Himself. He has plans for himself for Father's Day weekend in St.  John,  Washington USA watching the Sprint boat races. These races take place in sloughs carved out of a farmer's field and are filled up with water. Sounds boring but it is not. I can assure you. These sloughs cross each other and create hairpin turns for the small boats powered by large, fast motors. They race time and have been known to run up on the banks, flip over, and even crash. Anyway, because I won't see him over the weekend, he spent this weekend doing things with me. Not a normal occurance but quite an equitable trade. I don't begrudge my husband a life away from me as long as I get to enjoy some life as well. I've never been a home body unless you count me as a homes body. We traveled between our homes but we spent a lot of time traveling and collecting experiences. I have always been a doer since I've been an adult. I cannot stand t...

Have you ever been famous or had your "15 minutes of fame"? Why yes, yes, I have. For whatever it's worth. I had the rare opportunity to knit a piece for the Silver Anniversary edition of Vogue Knitting Magazine while working for a prestigious yarn and notions distributor. I paired two luxurious yarns together in silver and black and knitted an elegantly simple scarf that actually graced the pages of this historic crafters and designers full color periodical. I guess I wasn't famous per se, but my work had it's day in the spotlight and I'm kind of proud of that. I had my moment of being infamous and it brings me shame. Why mention it? Honesty. Full disclosure. Know all of me. Good and bad. There is a little good in the worst of us and a little bad in the best of us. We are human and imperfect after all. I once made the newspaper for running my car into a bicycle shop. Well, I wasn't actually named in the article nor was my photo published but it was su...

A friend of mine and I took a look at a book this evening, Memory Journal, and read some of the prompts. Since my speech makes meaningful conversation a challenge, I assured her that I would write about them in my blog. Here ya go, Asma: What was the greatest invention to come about in your lifetime? Off the cuff, I answered, the computer. I mean, look at all that became possible when the personal computer came on the scene. I used an IBM Selectric to type envelopes for one of my first paying gigs for a local real estate broker in the late 70's.  I would've done a much more professional job had I been able to make corrections prior to printing. There isn't an industry that has not been affected by computers. You mentioned the iPhone, then I kind of had to agree, especially if we're talking about any multi-functional cellphone device with any computer capablilities. And then, I looked at the device that actually bridges the communication gap that makes it possible ...

I went on a short excursion from BBH (Bailey Boushay House, my hospice facility). I was tormented with suicidal thoughts to the point that I was planning my act. Thus I thought it prudent to get into a different environment to help change my headspace. Though I was a mess with dishelveled hair, red, swollen eyes, and bare of foot, I determined to go out for a walk, so to speak. I am, retroactively, grateful that they did not deny me my rights out of hand, like was the practice of Life Care Center of Federal Way. They assigned me a patient care technician to walk alongside my  power wheelchair and down the road I wen.t. Heading down Madison Avenue towards Lake Washington on the north side of the street, I crossed Martin Luther King, Jr to pass an eatery I've wanted to try since landing at BBH. Dinnertime and Luc was full up with contented diners leaving the bustling establishment. I felt a twinge of regret they had to see miserable me on their egress.  Even ignoring the ple...

I think about my friend, Kate Struby, who died from this horrible disease in 2013. She lived here at Bailey Boushay House before I did. I reached out to Kate online through FaceBook because I loved her photograph with her head thrown back in laughter. I also loved her posts. I guess I just loved her spirit. I got to finally meet her one month before she died. I happened to be at the University of Washington Medical Center for my quarterly appointment when I saw her FaceBook post. She was awake and in the medical ICU. She was a mere few floors down. I would not be stopped. Relativeor no, I would meet my FaceBook friend. Thank God I did. I rolled into the room to find a beautiful, ethere.al woman flanked by two friends. Although it was an impromtu visit, she said she knew me immediately.I was in awe of her with her fiery spirit despite the ravages of our shared disease. She, unable to lift even a finger, lifted my spirit.

1 I have ALS. And it sucks. But, I'm handling it. I am not ALS. The misery is not every second of every day. I find joy in the simple and the real. I applaud and envy those people who have family who gather round them to care for and love them to the grave. I don't have that. My family ignores me, and worse, reaches out with hateful, uncaring messages, worse yet, they blame me. That way, they can go about their lives guilt-free.  My family have all retreated into their various dysfunctions. My biological sister,into her "blame the victim" hostility stance. Whipping up her life long resentments until she's hard of heart and spoiling for a fight at the drop of a hat. Hair trigger, comes to mind. Even wrangling her best friend to throw barbs when she cannot. I've felt it absolutely necessary to ban her from. my life for self preservation. She has violent tendencies. Just listen to how quickly she wants to "kick my ass" or anyone else who doesn't a...

"If I don't tell my truth then the world has naught but lies to believe about me. "     ---Tina Flink I have another FaceBook stalker. Surprise surprise, it's my biological sister's best friend doing the same thing she did last year.  Verbally bash me on my FaceBook wall. She has taken over where my abusive sister left off. I had to remove myself from my sister's life for the same behavior earlier this year when I was in the medical ICU and a mere two days after dodging the final bullet. There is no excuse for that kind of no class behavior to another human being. In the interest seeing where I may have first harmed her, bringing this hatred upon myself, I have sat down in quiet contemplation, asking God to direct my thinking. The following is what I came up with: The following is what I came up with:   She's never been my cup of tea but I always granted her the right to be her tacky self. After all, we are all different and she was a great match for m...

13 How do I help you to help me? I want you to be successful. God knows that I do. The last thing that I want is drama. I am way too ill for drama. It sucks up way too much energy. . It was suggested that I write up instructions to help facilitate this. Trust me, I have tried. Not tried, as in thought about it. Tried, as in, I've  written up step-by-step instructions using the Tobii SonoKey, only to have them disappear.  So, write them up again. Right? At great expense to my energy and patience and time. Only to discover them wiped out or overwritten, again. And still, sometimes, again. For those of you who have accused me of not having patience, you have no idea the vast amount of patience that I have.

Living in a hospice care facility is a trip. It has it's good moments as well as bad, poignant moments, and embarrassing ones, too. This was a first, but I'll get to that soon. . ALS, also known as Motor Neuron Disease, gradually kills motor nuerons that control muscles. The propaganda says that the voluntary muscles are affected but my experience proves out otherwise. For example, elimination is hardly voluntary. It must be done or thou shalt burst. Eventually, we are unable to breathe. Also, not voluntary. Anyway, back to elimination. Yeah, I'm going there. My reality, being a non-mobile, is that I am frequently constipated. Despite consciously making healthy, fiber-rich choices, I am at the mercy of deteriorating biology. My options to prevent the aforementioned, bursting, are Miralax, stool softeners, suppositories, and something called digi-stim. Dear God don't ask! Tonight, I had yet another bout and had to resort to the dreaded suppository. I've had to tr...

My name is Tina and I'm an alcoholic in recovery.  I am humbled by being able to claim 18 years and eight months of contiguous sobriety. I need to tell you that I'm terminally ill living in a hospice care facility. And I am happy, joyous, and free. I am one of the lucky few to be blessed with ALS (also known as "Lou Gehrig's Disease") or amyotrophic lateral sclerosis, a progressive, degenerative neuro-muscular disease that has no treatment and no cure. That is correct, no treatment and no cure. Zip, zero, and nada. Go home and get your affairs in order and we don't know how long you have. How did I handle this solemn proclamation? About like you'd expect a veteran AA member with 16+ years of  "Letting go and letting God". Yep, I fell apart. .How am I going to tell my loved ones? When and what will I tell? What will my husband do without me? What about my daughter? Cat? Chickens? Our homes aren't complete. What about work? Will I qualify f...

Seven days since my husband has been here. More of his petty need for control. When last I saw him, I was crying and throwing a fit. Well, no small wonder you might say or think. We would leave as well. But, consider this... My husband and I have been together a long time. We have gone to counseling a few dozen times and, supposedly, know our issues. As adult children of alcoholics, we share some of the same dysfunction. Occasionally, we get mired in poor communication conundrums. Both sitting on hurt feelings, thinking nobody understands. He retreats into slothful behaviors. Sitting and reading, sitting and watching television, lying on the floor sleeping, and, generally, ducking all Responsibility. Most times, I'm the one to get us back on track. I've been the one to offer the olive branch. I've had to drive out to Packwood from Maple Valley, and, physically, pull him out of his funk. Suggest solutions and coddle his hurt feelings for the sake of our marriage. But, ...

More about me...I want to update changes I've noticed as ALS claims my body. As you may know, I have not walked for over a year. I'm fortunate enough to be in a facility that has excellent rehab staff In this particular hospice facility, I get my range of motion at least three times per week to keep my muscles moving. Because I cannot move my muscles on my own, they contract or shorten and cause considerable discomfort and pain. Through quality staffing, I'm able to minimize the amount of drugs I take and enjoy my last days clear headed. I also enjoy therapeutic massage which complements the work of the occupational and physical therapists. For relaxation, I enjoy the gorgeous music of the therapeutic harpist as well as meditation in my once per month ALS Association meeting or the once per week meditation group. Regardless of this amazing care, ALS progression marches on. My face seems to be the most noticeable change besides the whole quadrapalegic thing. My mouth i...

People are reading my blog! I cannot express my gratitude enough. My heart is soaring! Before I got ALS, it was a minor interest amongst many varied interests. Today, I am unable to physically participate in many of my prior interests, like motorcycling, photography, knitting and other handicrafts, hiking, traveling, painting, drawing, going to the gym, working in the garden, doing housework, canning, and cooking gourmet or ethnic foods. Therefore, I am more focused on the ones that are most accessible to me, such as reading via audiobook or e-book, television, movies, meditation, music appreciation, and writing. Like the blind man who's sense of hearing and smell is heightened, I'd like to think my crippled body has made me more attuned to things more on the spiritual and sensual level. Initially, when some members of my family read my blog, they chose to focus on what they viewed as negative. The feedback I got was harsh and personally critical. .I was told that I was ...