Thursday, March 15, 2012

Monday Fun

Blue Nosed Trolls

A "Sunrise Cut"

Lisbeth clowning in my studio on Monday. Lis missed a couple of Mondays in a row due to seizures, but has been back the past two weeks. Her participation level in an art activity varies depending on her clarity that particular day. She comes to see me straight after her therapy appointment with Stephanie Cimmet, and this week she was eager to show me the two paper cuts posted above that she made in her therapy appointment. The week before she was less clear but able to cut some simple heart shapes in my studio, and sat entranced as I dropped colored inks across their surface, folded them in half, then opened them up to reveal butterflies, and blue nosed trolls...
Great fun.

Monday, February 20, 2012

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...

Friday, February 17, 2012

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.

Tuesday, February 14, 2012

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."

Tuesday, February 7, 2012

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

Friday, February 3, 2012

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...

Thursday, February 2, 2012

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..."

Wednesday, February 1, 2012

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.

Sunday, January 29, 2012

In The News

Excerpt from the article The Scourge of Epilepsy
Brunswick Times Record, Friday, January 27, 2012
By Madeline Curtis, age 14, Margot’s sister
I wish there was a cure. The pills are supposed to
work, and maybe they do—on other people. But they don’t work on Margot. The diet
didn’t work, either. The fancy diet, the one that led to so much stress in our
house, didn’t work. The seizures just keep coming back, and my little sister,
eight years old, has to endure them. I wish there was a cure so that Margot, who
can’t even speak or walk, wouldn’t have to struggle so much. I wish there was a
cure, because I’m tired of all the new medicines that show up in the cabinet
above the sink. I wish there was a cure, because I hate the helplessness I feel,
watching her limbs freeze and her eyes roll up into her head. I wish there was a
cure, because I want all of the people who carry the burden of epilepsy to feel
* * * * * * * * * *
By Martha Miller, Lisbeth’s mom

Write about lost love, my professor says.
All I can think of is Lisbeth, and how I lost the little girl she was that day in
sparkling summer. She'd been ill and was feeling better, then awoke that morning
saying, “Mommy I don't feel good.” I laid her on the couch and gave her some
Tylenol. Twenty minutes later it happened: she was grey, her eyes rolled back,
the whites of them now yellow, moist, a faint clicking in her throat. Her body
was stiff, jittery. I yelled to my husband Garry to come. “Call 911,” he said,
and somehow I did. Waiting on the front steps for the ambulance the word
EPILEPSY kept playing in my head. The ambulance arrived and the men carried her
out. Garry rode with her. I followed in our car praying, “Oh God, please, this
is not how I want her to grow up." In the emergency room Lisbeth laid on the
stretcher. They'd cut her pink summer shorts in half, shoved tubes down her
throat. Garry leaned over her tiny body, her perfect pink six year old body, her
blue eyes, now shut. What (the Hell) was happening? I wanted to turn and run
away. Garry saw it in my face and said gently, “C'mon Mart.” I walked to the cot
where she lay, and I began to sing to her. I sang all the lullabies I'd sung to
her when she was a baby. I knew what my job was now.
* * * * * * * * * *
By Christy Shake, Calvin’s mom
Our nightmare started when Calvin was eighteen months old. He had
spiked a fever, so we gave him some acetaminophen and called our local hospital.
The doctor assured us that we had nothing to worry about even though I’d told
him Calvin had serious neurological deficits. Within mere minutes of hanging up
the phone Calvin suddenly cracked like a whip into an arch stiff as a steel rod.
His eyes bulged and his lips pursed as if drawn up with thread. My husband
Michael gathered him up, instinctively—worriedly—rocking him back and forth as
if to jostle the seizure out while I white-knuckle-called for an ambulance. “My
son is having a seizure,” I blurted, “he’s not breathing—he’s turning blue!” The
walls began closing in on me. Sounds morphed and muffled. Everything around me
looked hazy—blurred—as if in a cloud, except for my boy who remained in sharp
focus. Cradled in Michael’s arms, now jerking rhythmically—violently—Calvin
turned ashen like a corpse and his eyes rolled back into his head. Time stood
still as in a dream. I wasn’t sure if Calvin was alive even though his
convulsions persisted—I couldn’t find a pulse.My next memory is of the
cold hard edges in the ambulance, the sterile, sickeningly gray vinyl benches.
My tiny child lay in the center of a sheeted white gurney—his eyes now vacant
and still—staring up in a catatonic gaze at the bluish light in the ceiling. I
feared he might remain that way forever because of the seizure, or worse—die.
Little did I know then that some kids do.
* * * * * * * * * *
Margot, Lisbeth and Calvin are just three of as
many as three million Americans, and their families, who suffer from epilepsy,
and who likely will not be released from their misery until a cure is
discovered.During this brief campaign please, show your compassion and
donate to CURE epilepsy research at: