IntrinsicTina

Grandma had the power. She could make boo-boos feel better and mend a shattered, little girl's self-esteem.

I continue hemorrhaging people. Stephanie, my Stephanie, has given notice of her intention to end her employment. Thankfully, she gave me notice as well. Tears were shed. I totally get that she must do the right thing for her life. Her Baby Girl deserves to have her mama at home on holidays. I will miss the love and her art on the graduated pitchers. I'm not gonna lie, it's hard to lose good people. People who are there, the ones that actually care. The ones who hug and kiss me (with permission) when I cry. The ones I laugh uproariously with; the ones who tell me off-color jokes and don't mind their language. Seems like only yesterday that I lost Meredith to Magic Mike, marriage, and the midwest, nevermore to hear her sound effects while rolling me over in bed. Lisa also went home to the midwest. Don't they understand snow and tornados?! At least my sweet Sophie moved to California. I see much traffic and smog in her future. Man, she's gonna be a great nurse. ...

What did you get for Christmas? Or what did you give? Unfortunately, I  did not give anything, not that I did not try. Just another unfortunate example of what I cannot do for myself, even though I have an augmentative and alternative communication device. After a Christmas morning of quiet, personal lamenting and escaping reality through sleep, my family showed up with gifts and laughter.  Precisely what I needed to lift my flagging spirits. My sister, my surviving sister, the one who, allegedly, doesn't cook, cooked a whole Christmas dinner. My family invited my husband for the Christmas dinner and he brought my mom and dad out to their place in Puyallup. Part of me was jealous that I wasn't even given the opportunity to participate, but a bigger part of me was grateful. I was grateful for the knowledge that my family has fully enfolded my husband into the family, and he won't be alone after I'm gone. I also benefited from her Christmas dinner preparation, the...

Got a chance to let my party goblin peek out a little at Bailey Boushay House, in Seattle, Washington. God, I love these parties!!! They are a real boost to my spirit. Day in and day out, I am in my room, pleasant as it is, I get starved for new understanding peeps to interact with. Additionally, I need new foods to pass over my bored palate. (Sorry, Daniel, as good as your food is, I am not accustomed to the limits set by institutional standards, for my level of dysphagia.) Thanks to Chef Daniel, I got a chance to sink my teeth into...wait for it...Beef Wellington, Stuffing, Sourdough Bread, Caprese Chicken, Cranberry Pear salad, and Broccolini. Following a fantastic meal, Chocolate Lava Cake accompanied by thick, rich, and creamy Egg Nog. How do I convey the deliciousness? My eyes rolled back and my taste buds practically sang. Mmmmmmmmmmmmm. ♪ Tis the season to be jolly, ate my fill, plus cake by golly. Fa-la-la-la-la-la-la-la-la-la ♪♪ Not only did we dine, we got to listen to...

Pleasantly surprised today, a nurse relayed a message from the Director of Nursing, a change is coming. The other night, a patient care technician (PCT) sprayed a heavy duty air freshener down the hallway...nearly suffocating me. Unfortunately, it was not the first time. I have ALS, amyotrophic lateral  sclerosis, a neurological degenerative disease which has progressed far enough that it has impacted my breathing. Furthermore, I am a quadriplegic, meaning all four of my limbs are paralyzed, and unable to speak intelligibly. I live in a skilled nursing facility, also known as a sniff (SNF). I rely 100% on caregivers to attend to my every need. Imagine my dilemma, I have approximately 10% Forced vital capacity (FVC), Meaning that is all the air that I can breathe, compared to the 110% that I started with. Now, I'm contending with toxic pollutants invading my hospice room. Insult to injury, I cannot escape nor can I tell anybody to close the door and open a window. I'm desper...

Contrary to what I publish to my blog, I want people to know that I am not unhappy. I laugh often and love much. I do enjoy Life, despite my circumstances. Having ALS is a bad break, but I should hope that it doesn't define me. I've had some incredible experiences that I doubt I would've had otherwise. I've rubbed elbows with some good people. I've gotten to know people in a unique way. I've been a part of purpose much greater than myself. I've been able to contribute to the future.  I learned to love Football way too late in life!I wish I could have gone to a game and watched the Seahawks in person! I adore all of them but mostly, Richard Sherman. I've really enjoyed watching the games with my husband.

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...

Today is the day of the ALS Walk. I should specify the city, Seattle. I have a team, TEAM TINA, formed by my husband, at the last minute. I must admit that I was not interested in the details of the walk. I doubted that I'd survive to attend and thus, nonstarter. Not a good attitude, I know. I did not attend. I'm just too fatigued all of the time. Just holding up my head is an effort. I was surprised and heartened to find we raised $500! It is so important to raise money for research to cure ALS. This is a horrible disease!!! Thank you to my walkers and donors! ***I stand corrected.  Team TINA had 12 walkers and raised $650!!  Wow.  I am humbled.

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...

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...

20   1 I gotta talk about it! I had another scrumptious dining experience, here at Bailey Boushay House! And if you're one of my regular readers, you may get the impression that I only blog about Italian dinners. However, I will tell you now, I'm a foodie. French, Indian, Thai, Japanese, Vietnamese, Columbian, Mexican, Tex-Mex, African, Irish, American. By God, if it's a foodstuff, I'll probably try it and, quite possibly, like it! It's coincidental that I'm, once again, going to rave about the awesome Italian dinner we enjoyed. To mix it up for you, I'm going to start at the end. That's right, if I had the option, I would've had dessert, first. Of course, I may well have cheated myself. Dessert was not particularly Italian, but it was my personal favorite...Creme Brulee´. Imagine this...Chef, clad in his classic chef whites, rolls his silver cart of magic into the roomful of satisfied, yet expectant, diners. Atop his cart, whipped cream, lady fing...

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...

Had I not gotten ALS, I wouldn't have had the opportunity to meet so many new and interesting people, nor had the opportunity to get to know the heart of the people already in my life. People with ALS that impacted me but lost their battle. Where do I begin? Gail Dubose came to our support group meeting in Kent only a few times but I remember her. She relied on her ex-husband before going into assisted living, then she was gone. I never would've known had I not "friended" her on Facebook. Notification of her funeral came in the form of a Facebook event post by her surviving family members. Unfortunately, my husband had a belly full of ALS and wouldn't take me to the service. I got to know people from all over the world thanks to the website www.patientslikeme.com. It was there that I met so many PALS; we support each other to the bitter end, we can't help but become invested in each other, we're on the same plight. But this support comes with a down...

.     23 Had I not gotten ALS, I would not have met and experienced so many interesting people nor experienced the depths of people I already knew. Through the ALS Association Evergreen Chapter, I met an extraordinary couple with expansive hearts who turned their personal ALS journey into a lasting mission benefiting persons with ALS (PALS) in our region. Because of them, I personally benefited: by having a platform in which to connect one-to-one with other PALS, demystifying the disease and its processes; by being able to borrow necessary durable medical equipment as it became necessary with a fast-progressing paralyzing illness; by becoming empowered to do what I can to fight for a cure; by being offered educational resources and opportunities to learn about aspects of the disease I, otherwise wouldn't have been aware of. This amazing couple continue to allow PALS, their families, and caregivers meet right in their living room. Carl's first-hand insight and z...

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...

Tonight we had a very special evening event at Bailey Boushay House. Viva Italia--a night of opera and delicious Italian fare. It was like a night out on the town without the logistical problems associated with transporting people with disabilities. The third floor dining room was transformed into an exclusive Italian ristorante´ resplendent in cabernet-colored linen, candlelight, plants, and sculpture. Flutes of sparkling cider caught the firelight playing on the computer monitor. It began with several opera numbers (I'm an opera idiot and couldn't begin to offer further descriptors) and proceeded with a gorgeous Caesar salad in a baked, filigree cheese bowl. A few more operatic tunes followed by a delicious tomato basil bisque that I'd swear contained real basil, rosemary, and parmesan reggiano. More gregarious opera and then a plateful of rustic Italian favorites, manicotti, pasta Alfredo, and chicken Parmesan, asparagus, and red pepper. Mangia, mangia, mangia! Still...

Orange, gold, rust, burnt sienna, ochre, raw umber; the riot of fall colors, in the trees and at our booted feet; a drive in the countryside; the taste of hot apple cider on my lips; the satisfaction of a truckload of firewood we gathered and cut ourselves; elk herds on the move; hearty stews, savory soup, crusty whole-grain bread, pumpkin and gingerbread spice lattes; these are the memories I tap into the most this time of year. Cabela's fliers in the mailbox; Carhart's camo-clad hunters swarm outlying areas; mushroom garthering; huckleberry picking; logger burgers; forest service roads; cheese sandwiches on the woodstove; warm quilts, cool sheets, and flannel nightgowns; cold butt, warm heart.  Immensely grateful to have the well of memories to draw upon.

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 ...

Talking to a caregiver the other day, she mentioned that she "hates Facebook because it's so fake." I've heard the same charge made about funerals and memorials. I have a different point of view. Look closely at a tree; not very attractive if is has a big ole burl blemishing the appearance. What about broken branches from the last storm? And the gaping hole, former home of birds, current home for squirrels. What a flaw! N.ow that I think about it, it's not symmetrical. Hardly a perfect specimen with bugs burrowing into the bark and vermin running about, up and down the trunk. Yikes! Now step away from that tree, see it with fresh eyes. You see it more generally; it's a tree, home to birds and squirrels, a food source for woodland creatures, a focal or backdrop for the nature photographer. Perhaps it gets harvested, becomes furniture or lumber to build a home. And that ugly burl? Goes to the craftsman to become stunning art. Maybe it falls to the woodsman...

Today is my birthday--another milestone met--another year of birth anniversary. I didn't expect much of a celebration this year and that was fine by me. I tire easily and can't bear up under the social expectations of others. Smiles and efforts to speak, with or without my speech generating device, taxes my energy--quickly. After a lifetime of acquiring stuff, I need nothing anymore; you cannot take it with you and I live in hospice where I live my life in a room. I'm pretty happy to have a delicious morsel that I can manage to eat despite my mouth, tongue, and throat weaknesses. Tonight was delectable and tender Lamb Curry, individual-size banana splits, chocolate mousse, and cupcakes. My mother and sister, Renee, surprised me with a visit complete with gorgeous fall flowers, gourmet cupcakes, a gift of audiobooks (my favorite kind) and their time, despite health challenges. My husband showed up while they were here, helping to carry the conversation, thus I did not ov...