Three:Two Story Life

Back the way it was. We're early in the 2nd year without Dad, and Scott still has this verbal tic. My response changes. I know, honey. It is the way it is. I do too. No response, depending on how the day's rolling. Scott is taking prozac now - I imagine he's depressed. The doctor agreed although I am the only reporting individual. She takes my word for it and writes a script. The carers report that he is more responsive (although I still don't know what to do with the one who coaches him to say praise Jesus!) I notice that Scott has stepped into life a bit more. (The fact that he can repeat praise Jesus! is one example.) This return to life shows up in making choices about his environment. He's picking up his dish from the table more often. He makes his bed. Moved his record albums into the living room from his bedroom. Decides when he's going to put on underwear instead of a diaper.

I have to be faster. He picks up his dish, but turns it upside down in the well I put the clean dishes. Then I need to rewash those. He makes his bed over wet sheets. Then the comforter is wet, too. Scott will toss underwear around until he finds the pair he wants to wear, and then I feel like he should be allowed to wear his choice, until the laundry basket is half full with wet underwear. I've had the plumber in 3 times in 60 days because Scott now wants to use toilet paper when he pees. A roll at a time. If he flushes, we're plugged. He doesn't always, so I have to be alert to what's up in the bathroom. Every time. Ten twenty times a day.

My handler with the State DHHS confirmed there's no way to timestamp this. Constant vigilance. No line item. I don't know why I brought it up with her. Looking for some affirmation that this is hard, unrewarding, depressing so that translates to a spreadsheet in the Capricorn corner of my brain.

My therapist used to instruct me to ignore stuff. Just la di da while stepping over scivvies tossed on the floor, toothpicks embedded in the carpet, twist ties strewn around the house. Back then it made some sense. Back the way it was meant arguing with Dad every week about allowing Scott his own life, his own agency, his own quirks. Now I am pushing back at that agency, a quandary for personal growth and peace.

All this stuff is just stuff. Whinging about the mundane. Because that's what it is. It is what it is.

Dad was a support on this three-legged stool of our stories. Scott spent all of his life with Dad in his story. That's a huge loss for him. Scott is finding his way in this new world order without the brain power and memory to find a way through. I question every hour if there is someone or anything that would be a comfort to him.

Dad was the person I could talk with, share his love of sports, my love of art. He was funny when he wasn't grouchy. Just like me. There are entire days when Scott and I have no direct communication; days when he's roaming the corridors of his inner life, and he does not hear me speak.

I'm mad and sorry most of the time. My freedom is curtailed - if I need to leave the house, I either have to take Scott with, or pay for support. I am not as agile, nimble, or interested as I was a year ago. Feeling isolated, I've isolated myself more. Quit the art commission. Stopped painting. Writing, creating, anything. I don't want to get dressed, shower, or rise from the bed to do neither.

I keep thinking this is the day it turns around. This is the day I reengage with life. This is the day my story will take up where it left off. And on that day I'm wrong again.

I am stuck in a groove of being unable to console myself because so many other people have it much harder than I do.

And I still can't cry.

To Beckie: In This Life and Any Other

Thinking of Beckie as we approach the end of the first year without her beloved company on earth. Written June 5, 2009, after three weeks in hospital where she would live for over a year:

My best friend Beckie and I met on August 12, 1995 at 8:30 a.m. It was a bad day for me: first day at a new job. I was grieving about my youngest niece starting day care, after being with me for 3 years. I was close to tears all morning. It was a job I did not want, for a company I could not possibly like. My workspace was isolated, in a big room that was gray. It was hot, humid, miserable and I was wearing pantyhose.

And there was Beckie. She had bronze hair, and purple eyes. She was serene and glowing. She would laugh to read this. She emanated. I walked right up to her and introduced myself, a thing I'd never done. We meet people occasionally and wonder if we've met somewhere before.

Beckie and I didn't think about that in those early friendship months. We enjoyed as much time in each other's company as we could. We ate lunch together, we finagled our workspaces to be together, and had breakfast on Sundays at Clairpointe. We shopped for shoes. We laughed. We talked. Beckie has a functionally thoughtful, deeply grooved brain. If we have met before; if reincarnation is true, Beckie brought the previous brain with her each time she showed up on Earth again. Supernumerary brain. Her life view is ancient; her responses, fresh. Being in her company is like taking a sunlight shower, a moon bath. She is wise, reasoned, and soft-spoken. She is a humanist, and an excellent human.

We are both women of strong opinion, and commonality of opinion makes our relationship satisfying, but we are unconditionally devoted to defending each other, whether we agree or not. People who choose to confront Beckie have both of us to face, and vice versa. Beckie has the better diplomatic skills and has physically stood between me and the object of my ire more than once. Where I am volatile, she is steady; my weakness is countered by her strength.

She has a scientific mind, analytical and crystalline. And a warm, accessible soul. She can multitask with each of her otherworldly brains separately, and in combination with her soul. With two young sons growing fast in her home, she could still focus on designing and laying out a college textbook on ancient Greek papyrii. In Greek.

Beckie is quietly accepting of my wandering in metaphysics and general Piscean goofballiness. Yet it was Beckie who wrote a note suggesting that perhaps we had met in another life, and more than once, and maybe I might want to write about that? For two years after I was diagnosed with cancer, Beckie carried my consciousness for me; a sacred and profound oath of friendship, to be there in the world for me while I was not capable. I love her unconditionally. Fiercely. Eternally. Beckie is our Mother Earth; majestic, mysterious, magical. She is the rock that will take on the hard place if someone she loves is in between. I wonder if the ancients may have assigned to their deity of choice the qualities Beckie embodies in her human form. She causes me to want to be the best possible person I can be.

As she has taught me, I will focus on being stronger, accepting, and radiating hope; abandoning anxiety, false control and rage. If I've stuck one hesitant toe in the waters of heavenly energy before, now I will immerse all and summon the light to be with her always with love.

Grief Depression Stress and SAD

Went to my second Alzheimer's Disease Caregiver Support Group today. The first one I went to in another city was canceled and I didn't know so I showed up to an empty room. I was sort of relieved. This one in South Lyon had one attendee. We figured out it was probably because the notice in the community newsletter didn't have where or a phone number. Cherilyn Johnson of Sparrow's Nest Christian Counseling was the facilitator as a volunteer with the Alzheimer's Association. She brought bundles of literature, handouts, relevant books, and her good heart, training and sensible approach. I was blessed with her willingness to stay for just one person. I then doused her with the issues in my life, my father's and brother's as well. We live together. My dad is 83 and 1/2 (it's a joke with his sister who is "going on 92") and my little brother has Down's Syndrome and now Alzheimer's Disease as well. On any given day we share a brain. Dad and I are observers to Scott losing little bits of himself, and we're struggling with diminished skills among all of us. The dog contributes by losing his command cues randomly which I think is intentional because dogs just want to fit in. The dog is also lousy at knowing where the car keys are and making dinner when we're too tired. So today I admitted to holding back grief. To denying depression. To more stress than I can handle alone. AND to the possibility of Seasonal Affective Disorder which I have in the past thought of as a whiner's sort of disorder, so of course, I couldn't have it. But now I am ready to find support and help. Not drugs yet - I'm not good at medications. My depression is the worst December, January, February, and I can get through those months if I corral the SAD. I shared the meeting with a good friend, and she - bless her - said yes, SAD is real, and she knew how to find a full spectrum light bulb and she'd get me one. I bid on some yellow candles on eBay because yellow is a sunny color. Cherilyn suggested I try to bring the grief out where I can see and address it by journalling or creating. What does grief look like? Grief feels like a black hole: icy, gigantic, solid. If I painted it, no viewer would feel the distance and aloneness, and I'd use up all my black paint. I told my friend Geri that I am envisioning more of a thready feel; like trying to walk a great distance on cobwebs. Over a big icy black hole. My friend Beckie who we lost last year gave me solid footing in the world. And her warmth was like a yellow dwarf star. Now there's a black hole where her star used to be. My little brother's humor is dimmed, his presence like a fading light, and I grieve for him, too. When I cried today because I didn't know if anything I'm doing is the good or right thing to do, Cherilyn said "do you ever let yourself just cry?" I said no, but I'm going to right now for a while. She also said, "all you can offer your brother is joy and safety." And that's what I will take to heart and give back as best I'm able. Safety and joy.

Cleaved Inclusion

Missing my friend Beckie grievously the other day, I picked up a crystal point on my desk. It is an extraordinary piece I chose as a woman was unpacking a box of crystals at Sweetgrass in Davisburg. I see a menagerie of animals, one of the Three Kings offering a gift, and a fantastic cleaved inclusion that causes the myriad of images. On this day of missing Beckie, my heart was empty and aching. As I clutched the crystal to my chest, my heart was flooded with light and warmth, and I felt her presence perfectly: a gift of healing from the Magi, and Mother Nature. When I am weary and heartsick, I will remember that no energy is ever lost, great spirit survives, and my soul will soar again in awe of the great mystery of life.