IntrinsicTina

Dear Renee', Rod and I keep viewing photographs on my old laptop and my heart catches when I come across photos of you and realize you're no longer going to walk through the door to paint my nails, recommend a book, or talk to me about knitting. I miss you. It's slowly coming to me that you are gone. (My grief broke)

25 I have a photograph of myself in front of the inscription We are surrounded by our past. This digital pic, taken by my friend, Anne Powers, numbers among my favorite photographs of myself. Not only was it a flattering photo, I had lost considerable weight and my hair was beautifully styled but I was at a place of confidence and gratitude. Contentment. Today, I am surrounded by my past. My husband brings my old laptop to view pictures I've taken throughout our years together. Additionally, he brings hard copy photos from boxes, albums, and DVDs. We pour through these pics, reliving memories, bathing in the nostalgia of holidays, vacations, meals, fishing trips, our families, friends, cats, you name it. I pluck out snapshots to post onto the metal supports of the built-in lifts, so I may view them and smile. I wish I could post my favorite pic here. 

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...

They sent her home, nothing else to be done. No more chemo, stem cell therapy behind her, crumbling bones, roughly breathing, pain. She died. Now I know grief, pain clawing it's way out of my damaged throat. Copious tears, but not enough sound. Pain this searing should be accompanied by keening. A girl so sweet that she never would bad mouth a soul. .

I had the privilege to be born in the richest and most powerful country on the planet. I was lucky enough to be birthed, uneventfully, in a hygienic, sterile, modern hospital, close to adequate resources in the event that labor and delivery went badly. RH-factor was already known thus measures were taken. My parents were, and remain, white, whatever that means anymore. Back in the early sixties, in America, it meant that though we were poor in the socioeconomic strata, we were automatically afforded privileges denied to other segments of our society. About the time I was toddling around with a fistful of Gerber biscuits, black Americans were fighting for the right to vote and my daddy was fighting the Viet Cong. I was lucky enough to be insulated from the ugliness. As the firstborn child, and the first grandchild, I basked in the glow of adoration, given attention, unquestioned love and affection. I imagine I wanted for nothing much until my first sibling arrived. I was lucky enough ...

Raspberry mousse to die for...Chocolate-covered banana...Chocolate-covered strawberry...Petit fours...Tulips...Roses...Heart balloon...Vikings...And thou...

Three years and five months ago, I was diagnosed with ALS. I feel heavier each day. Gravity, the weight of it bearing down upon my chest, my arms, my legs; the weight of gravity pressing my buttocks hard into the mattress. Caregivers have trouble grasping the reality of weight pressing down on me when nothing "heavy" is on me. Muscle spasms are an ongoing problem, increasing in intensity, inexorably marching me toward total immobility. I am a quadriplegic but I take heart in the small movement that remains, my thighs retain the ability to open my legs into a cobbler's pose, sometimes I can bend my knees sideways but not upwards, defying gravity. Likewise, I can move my upper arms toward my torso and, at times, away but not enough to lift my arms nor defy gravity. Calf and forearm muscles are wasted away, appallingly flabby, skin absent of mass. Muscle spasms also occur on the inside and the muscles around my organs quiver and clench. The most vulnerable muscle is the ...

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 ...

One more sleep until I get to go to the Meow-tropolitan. Uber-excited!!!

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...