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.
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."
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, anda Flower Angel winganda Potato One prayer...
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..."
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...
My daughter Lisbeth suffered a traumatic brain injury when she contracted a viral illness in 1988 at the age of six, and she continues to be challenged by multiple difficulties including uncontrolled seizures, behavioral disturbances, learning disabilities and developmental delay. Despite these challenges, Lisbeth's mighty spirit and creativity are remarkably intact. She creates extraordinarily beautiful cut paper snowflakes - hundreds of them (it is ironic that a cluster of seizures is called a "flurry...") and like real snowflakes, each one is unique. Lisbeth sometimes refers to her creations as "brains," which is poignant, for in the making of each snowflake/mandala, it is as if she is recreating her brain. Lisbeth sees figures, animals, and objects in the cutout shapes of each one of her designs, and says that these are what the brain is thinking!
Lisbeth lives in her own home with her cat, Little Milkweed.
Click their picture to learn about Independence Association, the amazing agency that makes this possible!
The Good Doctor
Dr. Gregory Holmes, neurologist, and Lisbeth. Click on this picture to learn more about the neurology program at Dartmouth-Hitchcock Medical Center.
Vagus Nerve Stimulator
Click this pic to learn more.
Click this pic and visit the incredible Spindleworks!
The Normal One: Life with a Difficult or Damaged Sibling
Click this pic of Lis and Sister Kait to read about Dr. Jean Safer's book!
Not Bad Thing (not necessarily bad), You Do Know (ya know?), The Right Way of It (to do things correctly), The Wrong Way of It (to do things incorrectly), True (what is real and right -affirmative), Silly Way of It (silly), Funny Way of It (funny), Mmmmm Hmmmm, Mmmmm Hmmmm, Mmmmm Hmmmm (yes), All the Ways of Lisbeth Miller (understanding Lisbeth's condition and caring for her appropriately).
It's left in my brain (I remember), It's not left in my brain (I can't remember), Hard to know (Hard telling not knowing, I don't know), Guys couldn't believe it! (incredible!), All the Year and Month (all the time), Doing the Funny Joke (kidding around), THIS way (inserted in sentences repeatedly, emphasis on THIS. not sure I can translate this. It's in the realm perhaps of, Do you follow Me?)
I am an artist, an art teacher, a mother of five children, and a grandmother of four, and I live with my husband and our two cats in the woods of Woolwich, Maine. I teach drawing classes through the Continuing Studies Department at Maine College of Art in Portland, and now privately in my new (!) studio @ 72 Front Street, Bath. My blog 'Martha Miller' shares my art, my process, and my inspirations, and my blog 'Not Bad Thing' showcases my daughter Lisbeth's artwork and process. It is also where I share my experience as a mother of an adult child with special needs. You can see more of my artwork on my website @ www.marthamiller.com