IntrinsicTina

1 24 Glittering Birthday tiara, emblazoned with "Birthday Bitch", sent forth by my surviving sister, sits askew the lampshade. A half eaten bag of tortilla chips remains on the table, dyed navy and green, in honor of the Seattle Seahawks. Perfuming the air, a squat, clear, vase filled with short-cut, long-stemmed, white and red roses. Birthday cards litter my counter and tabletop, wishing me a  "Happy Birthday" in varying shades of funny. One tells me my sister "squeezed a unicorn to make me a rainbow" and there sits a rainbow-hued pile of poop. Another tells me a "Birthday Hug is Incoming" as a grey kitten flies through the air, from my husband. Still another, tells me that my mother "was going to get a flash mob together to do a birthday dance"; when you open the card, it belts out "Everybody Dance Now" and a little man vibrating (dancing). One good musical card deserves another and I have one left from last year from my...

Looks like I made it! Another year older and I don't think I've EVER been more grateful or relished the simple act of breathing more. I ate Thai food, dark chocolate mousse, and a killer good Birthday cake! I overdosed on Iliza Schlesinger stand-up. Check her on Netflix! War Paint, Freezing Hot, Confirmed Kills. Did you know that PINtrest is porn for white women?!  Me neither.How about when you applied to become a girl, and they asked what your favorite season is. "Fall. Motha-fuckah!!" She retorts. Because we love #Pumpkin everything! And we lose our shit when the leaves turn.  Babe, babe, babe, babe, babe, babe, babe, babe: Is it cold outside? I got serenaded at midnight, so sweetly. All day I had Birthday wishes, on Facebook and in person. Lynn sang and played harp for me and my family. I got serenaded a second time by dayshift. And Jordan, my sweet Jordan, who comes to crochet bedside for me, showed up to facilitate birthday shenanigans. She's awesome! She...

2 1 1 Tomorrow is my Birthday, I shall be the oldest I've ever been, and I suspect, I'll ever be.

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 am honored to get to preview and test cutting edge solutions for Microsoft with regard to eye gaze technology enhancements. It makes sense considering we live in the land of Microsoft. I, especially, enjoy giving feedback and being able to be part of the solution, since I've been so openly critical of current technology options. Without giving away any secrets, they're working to improve the accuracy and usability of the eye gaze technology. They're also trying to give our "voice" more emotions and inflection. Less robotic, more realism. I'm heartened by their efforts, I'm only disappointed that it isn't instantaneous. I feel like I'm making a difference for the good of all people. Isn't that what all of us want? To make a positive difference. To matter.

Today is September 11th, a day that our nation, collectively, grieves the terrorist attack on our homeland. It is also a day significant in my life; four years ago, I was diagnosed with ALS. Instead of hearing what I have to do to get better, I learned that I would never be better, again. I was overwhelmed, emotionally. Absolutely overloaded. Loss has been a daily reality. Struggle is my constant companion; the struggle to accept my condition, the struggle to accept my future, the struggle to accept the loss of my independence, the struggle to confront my mortality. It's been messy but I am both stronger and softer.  Life is good.

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.

3 19 What's the worst aspect of having ALS? Is it the continual loss of motor skills?  One day you can no longer lift your own finger? Hand? Arm? Or scratch your own nose when it itches? Or wipe it when it runs? Or pet your own cat? Or hold your husband's hand? Or button your own blouse? Or unzip your favorite blue jeans? Or wipe your own behind? Notice the new stilt in your gait? Trip over air to faceplant on the kitchen floor?  The front porch? Graduate to a cane? Rolling walker? Then a manual wheelchair? A fancy motorized wheelchair? Is it the falling away of friends and family who don't understand my disease process? Admittedly, ALS, amyotrophic lateral  sclerosis, is a scary disease, it's a terminal illness, there are no pluses to this disease, you shrink, shrivel, slobber and, ultimately, die anyway. They are right to be afraid but you are not contagious. And you need support and effective advocacy. The few that visit, are put off by the out of sync speech ...

.1 I'm afraid my time is ending. My battle is soon over, with a foe who has slain so many wonderful people. I am but one of many. I'll not see my daughter marry, nor bear my grandbaby. This makes me sad. I hate to leave my husband, the love of my life.  We had such dreams, houses to finish, miles to ride, vacations to take, and love to make. Several times, I've awakened, sluggishly, locked half in, half out of a dream. Nurses have, lovingly, held my hand, while I've cried reluctant tears.