Angels Come In All Shapes and Sizes

They come in the shape of a man who drives an ambliance (Lis-ism)...

and the shape of a smiling fireman with a yellow glow-in-the-dark slicker.

They come in the shape of a young man wearing a sweatshirt and jeans, a baseball cap and rubber gloves...

...this young man, who can read the beats of a heart, and the pressure of blood as it surges through veins.

Angels come in the shape of a snow white cat...

with liquid eyes: big, blue, and full of knowing.

Pictures from Friday afternoon. Lisbeth had another long seizure, and another ambulance call. And when I returned to my house there was still no power, but in my backyard, just before sunset, there was this:

Angels sometimes look like this.

A Better Week

Thankyou for all your well wishes. Lisbeth did indeed enjoy her lobster last Friday, and she is enjoying a good week! She has been happy and giggling during our phone calls, and is looking forward to sleeping over on Saturday. We are grateful for this calm spell.

Today I will be spending alot of time with Lisbeth's snowflakes, submitting fabric designs to Spoonflower, so that we can start sewing some items for her Etsy store by mid-March!

Lobster

Lisbeth's Lobster Moon mandala is for sale in her Etsy shop (see the four black lobsters?)

Lisbeth with her brother-in-law, Cory Duggan.

Cory brought fresh lobsters down from Islesford where he lives with Lisbeth's big sister Kaitlyn.

Lisbeth was weaving in and out of cloudiness on Friday after having that rugged seizure on Thursday. She alternated between bouts of staring, and then coming to and circling the kitchen, saying "lobster, lobster!" over and over. Lis loves lobster. It's her favorite meal, and knowing that she was invited to a surf and turf dinner at our house cut through the thickest postictal fog! She is clearing up slowly, and on the mend, once again. She is a trooper.

A Prolonged Seizure

Lisbeth during a recent ER visit. For someone with uncontrolled seizures, this is not an uncommon occurrence.

Lisbeth had a tonic clonic seizure at 10:30 yesterday morning that lasted almost 15 minutes. This is rare, and it is an emergency situation. Staff called the ambulance - by the time they arrived at Lisbeth's house, the seizure had stopped and she was doing some of her usual postictal behaviors. She had been given 1 mg of lorazepam at 10:00 for seizure aura, but it had not yet taken full effect. I advised by phone not to transport Lisbeth to the hospital since she'd had the lorazepam, was responsive, and her vital signs were stable. Lisbeth slept quite a bit after the seizure and was very cloudy. (One neurologist told us years ago that a tonic clonic seizure uses up the same amount of energy as playing a full football game. I believe it). Staff kept a close watch on Lisbeth for more signs of seizure aura, in which case they would have immediately administered another lorazepam. Lis is still very sleepy this morning, but is a bit clearer - remembering and talking about coming over tonight to have dinner with us. Lisbeth's big sister Kaitlyn and her husband Cory are bringing down fresh lobster from Islesford where they live. It's Lisbeth's favorite.
We think that this unusual seizure was due to the med changes that are in place, the Vimpat increase and the introduction of Cymbalta. Fingers crossed it was an isolated event, and Lisbeth will be able to enjoy her weekend. I am posting this video of a little girl named Jessica Lindgren having a tonic clonic seizure. Jessica lives here in Maine, is the same age as Lisbeth, and also has uncontrolled seizures. Her mother, Leslie Lindgren, participated in the making of this video about epilepsy back when Jess was just six. I think that it is important to see what a seizure looks like. There are millions of people in the world with epilepsy, and you may be called upon one day to help someone having a seizure. DO: Time the seizure. Keep the person who is seizing safe - cradle her head, or put a pillow beneath it, and turn her head slightly to the side. Loosen clothing, move objects that might bruise her jerking arms and legs. Speak softly and reassure her that it is almost over and that you are there. If the seizure lasts more than 5 minutes, CALL 911. Stay with her after the seizure ends - she may lose bladder or bowel control, or vomit. She will be very cloudy and will need assistance. DON'T put your fingers or anything else in her mouth!!! And don't panic - seizures are rarely life threatening.

Stuff Happens

New Zealand writer, artist, and photographer Megan Young writes about Lisbeth today on her beautiful blog, The Scent of Water. Thankyou, Megan! This is such a special tribute, and Lisbeth will be so very pleased! xox

Valen's Day

New Giant Heart mandala!

A Valen dinner party, with Red Velvet Cake...

...and a Valen Smoothie for breakfast, with a new little bear from Daddy.

And a brand new bear from Mom. So soft, and the colors of Milkweed.

(Someone else loves Lisbeth's new bear...)

Lisbeth celebrated Valen's Day (Lis-ism) by having dinner with us and sleeping over last night. Lis loves Valen's - she routinely cuts hearts into her snowflake/mandalas. This past week has been a good one for Lis. Her staff reported that she has been mostly content and that there have been no big seizures. We are currently increasing her Vimpat, slowly, and this is keeping the big seizures at bay, but Lisbeth is still experiencing the eyes getting stuck, a milder seizure activity that we hope will subside as we step up the Vimpat. She also started taking Cymbalta this week, and we think that this is a good part of the reason for her improved disposition. I can always tell when Lis is feeling more like her old self because her snowflake production increases! She brought over a whole pile of the new cuts, including the giant heart snowflake pictured at the top of this post. Yay.

Shiny Shrine

Helper Heather and Lisbeth.

Lisbeth's little corner devoted to Milkweed. She had fun choosing all her favorite objects to add to Milkweed's shrine. Lisbeth is The Queen of Knick Knacks, and loves to go shopping for kitties, birds, gaudy frames, and all things shiny and PINK.

Lis has been feeling alot better this week. And we have the green light to start the Cymbalta. Fingers crossed it will help with her anxiety, depression, and neurogenic pain...

Smart Teacher

Four Glad Giants, one of Lisbeth's nine newly framed mandalas, now for sale over at Brainstorm Studio.

Lisbeth talking about the young man she shares her house with. He has severe autism, is non-verbal (but makes occasional loud shouts) and spends a good part of each day holding and wiggling his "dolls" (a rubber lobster and an octopus). She alternates between perseverating negatively about him, to knowing about him (and missing him when he goes home to visit his family...)

Hands All Shaky

Frog Queen, one of Lisbeth's nine newly framed mandalas, now for sale over at Brainstorm Studio.

You Little BUTT

Lisbeth Miller
Beach Rose and Bleeding Hearts, one of Lisbeth's nine newly framed mandalas, now for sale over at Brainstorm Studio.

Oh, the juxtaposing of butts and beachroses. My sweet Lisbeth...

After the Bath

Lisbeth Miller
Mother and Daughter NFS.

Recuperating

Lisbeth and I worked on her shrine today. We are painting these little shelves PINK.

Her hand got scraped during one of the several seizures she had this week. Lis began to seize and fell on the ground when she and her helper went outside to get the mail - she sometimes goes down fast and without warning - she has broken fingers, lost teeth, and cracked her head open. Usually we can catch her, but sometimes we can't.

When I arrived at Lisbeth's house today she was spacey, but up and about. When she has a cluster of tonic clonic seizures like she's had this week, it takes several days for her to come out of the fog. She paces and wanders, is at times non-verbal, or she repeats the same phrases over and over. Here are some of Lisbeth's time worn perseverative phrases:

Oooooh, little monkey, monkey!

Oooooh, George Washington!

Ooooooh, Bill Cosby!

Plus and take away! Plus and take away!

Ooooooh, what a cute little BUTT you got there!

You're fat as a cat!

You gotta fart!

You got the GAS from your big fat BUTT!

Chadder cheese! (sic) Chadder cheese! Chadder cheese!

Sometimes Lis trots quickly from room to room. (When she was younger, if someone was seated and she was trotting by, she would come right up and wack them hard in the back of the head! We learned to duck...). This is an example of the perseverative behavior she displays on these days. She'll line up her crayons over and over and over, or flatten a washcloth repeatedly. She snaps her fingers and claps rapidly and loudly (we call these snappy/clappy days). She also draws. I have a collection of her postical artwork - it is strange and powerful. Lisbeth has no recollection of these days. When she was younger and experiencing 12-20 grand mals a month, she had only a handful of clear days. The rest of the month was a black hole.

So today I helped Lisbeth get washed and dressed, then we worked on a little painting project and had lunch together. After lunch Lisbeth laid down to rest and went into some petite mal seizure activity. She typically has this aftermath of less violent seizure activity while she is recuperating from a big seizure cluster. By the time I left, Lisbeth was sleeping comfortably. Tomorrow she will be a little bit more clear...

Lost Love (Revisited)

Kaitlyn and Lisbeth, 1986
mixed media on Rives BFK, 1986
Kaitlyn and Lisbeth at Mount Hope, 1986
mixed media on Rives BFK, 22" x 30"
Lisbeth and Alec, summer 1986.

Lisbeth and Alec, 1986.

Lisbeth's 3rd birthday, October 27th, 1984.

The Millers, summer 1984. Clockwise from Lisbeth (center front): Kaitlyn, Andrew, Garry, Eben, Martha, Alec.

Feeling some sadness this morning. Lisbeth is in the midst of a rugged seizure cluster. I am grateful that she has dedicated helpers who take good care of her through these hard spells, and I'm grateful that I no longer have to observe every one of Lisbeth's seizures. Even though I have seen thousands of them, there is a level where I have never gotten used to this.

I've often remarked that I had no idea we were living a charmed existance before Lisbeth became ill in 1988. Life is like that, isn't it?

In my junior year at MECA in 2005, I took a memoir class with professor Claude Caswell, and he gave us many powerful writing exercises, including several "free writes." One morning Claude told us to do a free write on the topic of lost love. "Write about lost love for 30 minutes," he said, and he set the timer...

Lost Love

My heart is beating
fast
scared.
Write about lost love
he 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
eyes rolled back
the whites of her eyes now yellow, moist
a faint clicking in her throat
her body stiff
jittery
I yelled to Garry
to come.
Call 911
he said
and somehow
I did.
Waiting on the front steps
for the ambulance
the word epilepsy
playing
in my head.
The ambulance.
The men carrying her out.
Garry rode with her
I followed
in our car
praying
oh god
please
this is not
how I want to grow up
The ER.
Lisbeth
on the stretcher
they'd cut
her pink summer shorts
in half
tubes
down her throat
And Garry.
leaning over her tiny body
her shiny white blond body
her perfect pink six year old body
her blue eyes
shut.
What
(The Fuck)
was happening
wanting 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.
Years later I would dream that Lisbeth's head

was just an egg
an egg that I held in my hand.
The doctors came in and said
that they
could re-attach her head

to her body
but
I saw them look at each other
worriedly
doubtfully.
I saw them do that.
And all the king's horses and all the king's men
couldn't put Lisbeth together again.

The Brain Doctor

Lisbeth Miller
A Brain One

The Brain Doctor (Lis-ism), Dr. Heidi Henninger of Maine Neurology in South Portland.

Checking Lisbeth's Vagus Nerve Stimulator. It's good to go for another 4 months.

Lisbeth had her quarterly appointment with Dr. Henninger yesterday. We are going up on her Vimpat - she's only at a half dose right now - and this will hopefully reduce some of the auras and underlying seizure activity that has been the cause of much recent discomfort for Lisbeth. We are also working with Lisbeth's psychiatrist on finding another anti-depressant. Lis was on Zoloft for 15 years and it had become ineffective. We're looking at Cymbalta which is an anti-anxiety/anti-depressant that also works to reduce neurogenic pain, another problem that plagues Lisbeth. One med that can handle two problems would be good, as Lisbeth has to take so many drugs already. It's always a balancing act, and always a guessing game. One neurologist told us years ago that he considers neurology more of an art than a science. I have to agree. Lisbeth is currently in the middle of a seizure cluster - she's had three tonic clonic seizures in the past two days. This really knocks her out. It's been about three weeks since she's had a cluster, though, and for someone who used to have 12 - 20 tonic clonic seizures a month, this is not bad thing...