Playing with Color and The Big Cut

Percolating with ideas for Lisbeth's big new cuts. I'm particularly keen on this design...

Wouldn't these make great tiles? Or fabric squares...

I pulled my palette from a couple of photos of bouquets from last summer's flower gardens...

Brother Alec

Lisbeth and Milkweed enjoying a visit from Brother Alec (Lis-ism) who now lives in Long Beach. Alec has been in Maine for ten days and flies back to California today. Lisbeth will miss her "little" brother. Sometime when I have more skin on (this has been a particularly rough week for Lisbeth) I will write about my experience of the difficulties faced by siblings of children with special needs. I could write volumes. But not today. For today I'll just say that there are indeed extreme challenges for these siblings, and in living with a "special" brother or sister, they become deeply wise.

Lisbeth and Alec in 1987, before Lisbeth's illness.

Marked Improvement

With the Risperdol decrease, Lisbeth's paper cutting is getting more and more fine tuned, more like the way she used to cut. These days she prefers to use a pizza pan to trace the circle for "the giant snowflakes." Even the simplist of these cuts would make beautiful tiles, or striking fabric designs. I'm planning to create some new fabric soon on Spoonflower, using some of these "new cuts."

Crayon Valens

Lisbeth and I made some crayon "valens" (Lis-ism) in my studio yesterday. Then Lis decided to make "a cut" from the colorful waxed paper, too...

She calls this cut "The Wedding One" and, "The Lips...." :^D

I LOVE LISBETH.

Of Potatoes and Flower Angels

Flower Angel, cut February 2, 2012.

One of Lisbeth's exquisitely intricate mandalas from around 2006.

Lisbeth working on a "Potato One" for Little Milkweed in my studio yesterday.

As I mentioned in yesterday's post, Lisbeth's capacity to cut her paper designs has been markedly compromised, and we're not sure why. Did she simply outgrow her interest? We all move on to new pursuits. Is she developing dementia? Her neurologist thinks not, and that her difficulties have more to do with her meds. But which meds? She takes three anticonvulsants. Or is it EPS, a side effect of the antipsychotic drug, Risperdol? Her psychiatrist is not convinced because she's been on Risperdol since 2001. Why wouldn't the EPS have shown up sooner, is his point. But does it take years to develop? So many questions.

Meanwhile, Lisbeth is on day three of the second Risperdol decrease, and is enjoying a really good patch. She's upbeat and clear, and according to her house manager, Rhonda Curit (who just this minute phoned me), is sitting in Rhonda's office contentedly cutting more detailed snowflakes. (Yay!) Lis likes to work in Rhonda's office (which is in Lisbeth's house) because Rhonda will often sit and cut snowflakes with her. It's a quiet space with few distractions. Fingers crossed, getting Lisbeth off the Risperdol is making a difference. Fingers crossed, we don't have to replace it with another drug. Fingers crossed, and a Flower Angel wing and a Potato One prayer...

How She Is

Lisbeth in my studio, admiring her latest "cut," a butterfly...

Butterfly Cut, by Lisbeth

We have started the second decrease of Risperdol this week. I am hoping that as we move this drug out of Lisbeth's system, her hand tremors and joint pain will be greatly reduced, and that she will be able to cut her snowflakes again with the same level of detail as in the past. I have been worried that Lisbeth's brain is deteriorating, and that this is the reason she can't "make the cuts" (Lis-ism) like she used to. I voiced this concern to her neurologist at her last appointment. Dr. Henninger admitted that adults like Lisbeth with a TBI and uncontrolled seizures will often develop dementia in their 30's and 40's, but she suspected this decrease in hand coordination had more to do with her meds. I believe it's either that or the EPS. Or both. To quote my therapist friend, "You can have ticks and fleas..."

How Is She?

My mother, Edna Simmons, with her grandchildren Andrew and Kaitlyn looking on as she holds her newest grandchild, Lisbeth, in November, 1981.

The first anniversary of my mother's death was last week. She was 88 years old when she died from complications from Alzheimer's. Mom moved into assisted living shortly after she was diagnosed with the disease in 2006, and my five siblings and I began our grieving process that summer as we worked together to clear out our childhood home. Alzheimer's is often referred to as "the long goodbye," and it is an apt description: we watched helplessly over those last five years as our mother progressively lost large expanses of memory and the capacity to do the things that had given her so much joy in her rich and busy life: knitting, sewing, baking, dancing, tending her house and yard, caring for her beloved cat Arabella, taking photographs, hosting the mammoth family gatherings for her six children and their spouses and her nineteen grandchildren and eventually their growing families. In her last year she still recognized my brothers and sisters and I as family, but she couldn't say our names, and the grandchildren and great grandchildren had become a big indistinguishable blur. I cherish the times she would pat my hand, and tell me in her low and broken voice, "You're a good girl."

Words did not come easily, and attempts to speak were often just garbled phrases, sputtered out with long pauses of frustration and sighs of exasperation. After these attempts to speak, Mom would fall back in her chair, her eyes closed with exhaustion from the effort. So we would sing to Mom, and tell her lots of stories. When we tapped into her long term memory and recounted tales from her girlhood, she'd smile, and nod with recognition, and perhaps even add a word or two. But when we would tell her, "Mom! You were married in the Spring of 1944 to a wonderful man named George, and you had six children together! Their names are Steven, Deborah, Kenneth, Martha, Susan, and Amy, " she'd scrunch her brow in puzzlement, and ask us, "How do you know these things?"

On one of my last visits to see my mother in the nursing home, I was talking to my sister about Lisbeth, and in a rare moment of clarity, Mom looked me straight in the eyes, and asked, "How is she?"

I am moved to tears each time I think of this: that my mother could "mother" me one last time with her concern, and that Lisbeth's story was so deeply etched in Mom's ravaged brain (or "left in her brain," to quote Lisbeth...) that she could rise up out of the murky swamp of Alzheimer's and connect with me about Lisbeth, for those precious few seconds...

simply slays me.