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.

In The News

Margot

Lisbeth

Calvin

Excerpt from the article The Scourge of Epilepsy

Brunswick Times Record, Friday, January 27, 2012

Margot
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
relief.

* * * * * * * * * *

Lisbeth
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.

* * * * * * * * * *

Calvin

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:

http://calvinscure.com

A Lisbeth Series

I've started a new series of paintings about Lisbeth. Trauma and healing, suffering and hope, joy and sorrow.......the whole ball of wax.

The Ambleeance Dance

Another word for the Lis-ictionary:

Ambleeance.

Resilient and Remarkable

That's Lisbeth.

Brainstorm Studio Midwinter Clearance SALE!!!

Everything is on sale in Lisbeth's Etsy shop!

Check it out! Great Valentine's Day gift ideas, or maybe a special midwinter treat for yourself to lift your spirits! Tell us you came by way of Not Bad Thing in the comments section when you make your purchase, and we'll include a free gift!

Back to the ER

Bandage with a numbing agent applied to the head wound.

Super glue in lieu of sutures. Works for me!

Lisbeth's helper Karen keeping watch, waiting for the wheelchair to take Lisbeth out to the car.

Brave and beautiful Lisbeth.

"Chadder" cheese soothes all ills...

Milkweed agrees.

I was working in my studio on some paintings about Lisbeth's last trip to the ER when her one-on-one helper called to tell me that Lisbeth had just had another bad fall during a seizure. I quickly yanked off my painting apron and told them I'd meet them at the ER. Evidently Lis had one of her "no warning" grand mal seizures where she goes down like a felled tree. These are the worst - no bending at the knees, no initial crying out, just BOOM. Straight down. She and her helper were in the kitchen about to make some banana bread, when Lis crashed into the refrigerator door, face first.
She's banged up but OK. Breaks my heart what she endures.