One View Expanded

This story was written in under 10 minutes at Writers Group yesterday afternoon. The exercise was to write about a still life composed of a tipped over kitchen chair, a pashmina draped untidily over the chair and a folded road map lying on the floor by the chair.

First Picture ~

It was far too obvious. The kitchen chair tipped over as though ‘accidentally’ placing itself on the floor. Mother’s beautiful turquoise pashmina - thank heaven’s it wasn’t her good one - was slung quickly over the rungs. I guess he must have heard the door and not had time to take it with him. It seemed tangled and would have dragged the chair across the floor. Too noisy! But the map? What is that child up to now?

Caving! Her young son was always rearranging furniture and, finding a map, would make a scene like a place he found on the map. This time, he was in the Guadalupe mountains where caves were tucked all over and the sky turned deep turquoise just before dusk.  Joel had watched enough National Geographic on Knowledge Network to know all of these details. Joel’s mother also found the crumbs of a cookie or sandwich he had been eating while taking his trip to this other world.’

~~~~~

After the fact, it occurred to me that when there is epilepsy in the household, a fallen chair would not bring an image of trying to make a cave and play act at caving. So this morning I penned this next piece: 

Expanded View

‘As Joel had grown up, his seizures had become less frequent and less intense.  He had responded well to medication from the beginning. The potential for seizures was still at the forefront for his mom, Shannon. Dr. Clark, their paediatrician since Joel had been born, had suggested that this may happen, that Joel could grow out of his seizures. Although warning that it may not. Much would depend on how well his response to treatment was and how well his health care was managed. Dr. Clark sounded awfully strict, but his strictness had proven to make life much more manageable.

So, Joel’s mom Shannon had never been certain, so still made certain about medications, sleep patterns and not too much stimulation for too long. That did cut a few birthday parties short, or kept group activities small, but so much better than a seizure in the middle of festivities.

While some parents were focussing on math skills or music practice or all the running about for classes and games, Shannon and her husband, Mike, were coaching Joel about coping skills. It really had become second nature to the family. Progressing in school, home and community were continually reinforced. Shannon was under no illusion that Joel would grow out of the epilepsy that he carried so stoically. 

Smiling, she recognized the cave that was an upturned chair, with the pashmina that was to cover it all and the map. Joel had not made epilepsy his identity. He was really an adventurer, with a bit of a heavy pack to shoulder.

Repost of "Interruptions"

Bills are paid - easily for a child, 
not necessarily an easy thing for parents.
Uninterrupted education ~ 
the norm for most.
Epilepsy  interrupts.

Education leads to gainful employment.
Uninterrupted employment ~ 
money in the bank,
a little, a lot, somewhere in the middle.
Epilepsy interrupts.

Epilepsy has no schedule
Infant to toddler,
youngster to adolescence,
through adulthood ~ onward and upward.

When does it start?
Where along the continuum?
Does money to pay bills arrive without interruption?

“The Interruption of Everything”

~ Terry McMillan

A Rough Start

A Rough Start

Tanya was a first time mom, Elizabeth their beautiful, darling child, just two months old. The fight that she and Steven had, about Elizabeth’s condition was horrible. It wasn't really a fight! Both of them were frightened, not knowing what to do, how to manage, what was happening!

It really almost looked normal, except for the long - too long - achingly long - pauses between her little breaths. And Elizabeth’s little eyelashes, so long and curly, fluttering and blinking. The first time it happened it was over in an instant. Still, Tanya didn’t think it looked right and called the paediatrician’s office. When she described what she saw, the nurse told her to come in immediately. But even as she was talking, Elizabeth’s eyelids fluttered and blinked again; she seemed to grow stiff. 

“Call 911 and get to the hospital immediately. I’ll have Dr. Pierce meet you at emergency. Stay on the phone with me until the paramedics get there. I’ll walk you through what to do.”

The nurse was saying to ‘protect her head’, ‘lay her on something soft’, ‘when the seizure stops turn her on her side’.......The voice on the other end of the phone kept Tanya from fainting. Tanya was crying and shaking. Steven, home for lunch, called 911 as soon as he saw Elizabeth stiffen. He was pacing, viciously raking his fingers through his hair. In all the Infant Parenting Classes they took, this possibility must have been addressed. But he couldn’t remember! Infant CPR? That was it! He could make sure she was breathing.......

~~~~~~~~~~~~

Elizabeth celebrated her fifth birthday, complete with birthday cake, mommy, daddy and baby brother Joey, grandma and grandpa, cousins and balloons - and lots and lots of toys. She still couldn’t pronounce the word epilepsy, but when she felt ‘far away’ she went to any of the adults in her family and told them ‘far away, far away’. The family had learned about how to help Elizabeth manage her seizures. She was very clear about taking her medicine. If a busy life took Tanya or Steven, even five minutes past medication time, Elizabeth would get her stool up to the sink for a glass of water. With great sternness, she would remind her parents of the time. Babysitter’s were definitely under her careful watch and knew that there were two things you did not avoid - her medication and reading all the pages of a story!

Information about symptoms of Infant Seizures from:

Epilepsy Foundation at ~   www.epilepsyfoundation.org

Reposting: “The Information Age, Pregnancy and Epilepsy”

This is a repost from March 3, 2013.  Seems I was not well at that time either!  I would like to think, the virus has given way to full blown allergies to pollen as flowers are hesitatingly coming into bloom here on the Island. When I read this post from last year, I thought it an appropriate repost for this year - maybe only because of the darn virus! But really, I had opened it to update the address and title, listed at the bottom of the page, of the Parkinson and Epilepsy organization, in Victoria with new street and web address.
Thanks for your time!
Susan

~~~~~~~~

This nasty cold virus has given me a lot of time on my hands today and yesterday. My energy level determined my ability for mind browsing (I think that’s called day dreaming) and browsing the world wide web. 

History of women was a direction that I took with my blog post last night. I wanted to know more about the history of epilepsy specific to women, so began to browse epilepsy sites. Pregnancy intrigued me. My sons, that I love so dearly, are both miracles for having survived my epilepsy and I would not trade either of them for the world. They each had a different experience with me, in relation to my epilepsy. One was conceived and carried to term after I had been on medication for about two years.  

The sites that google popped open were full of details about epilepsy, pregnancy, life, medications, and other treatments. It was so much that I felt a certain amount of information overload. I can also say that I felt frightened with some of the details that pertained to my situation so long ago, and that are issues to be dealt with today for other young families.

I’m getting old enough now to say that I have some history behind me and what the roving cursor reminded me of was how little I knew, and was told, about pregnancy and epilepsy in 1970. Not just pregnancy itself, but the possible effects of a seizure on the child. And from there it was a short trip to what would be the potential effects of anticonvulsant drugs (AED) on the child. To my recollection, these things were not discussed with me. I don’t know if anyone even thought about them, which I find rather odd as I was in the middle of nurses training with nurses and doctors all around.

There was definitely no world wide web with it’s present wealth of information in 1970. Now, when I think of all the homes in our communities, I think of the young families where epilepsy may be that not so silent companion. So I would encourage anyone with epilepsy planning a family, or the family of someone with epilepsy, to research pregnancy and epilepsy. I also am aware that not everyone has, or has access to, a computer. However, libraries, schools and universities usually welcome those requiring such services.

Since the initial post of epilepsy information in BC, it has changed - epilepsy has not changed. Contact the BC Epilepsy Society on Google for a provincial phone number and a local phone number for Victoria.

“In pregnancy, there are two bodies, one inside the other. Two people live under one skin......when so much of life is dedicated to maintain our 

integrity as distinct beings, this bodily tandem is an uncanny fact.

~ Joan Raphael-Leff

Author's note:

~ Edited December 03, 2023

~ This information and links are no longer validIn Victoria, a local source of information and support is at the 
Headway (previously Victoria Epilepsy and Parkinson’s Centre)
202-1640 Oak Bay Ave. (previously on Darwin Ave)
Victoria BC V8R 1B2
Phone:  250-475-6677

Email:  help@vepc.ca  (email is unchanged)

Web: www.headwayvictoria.com (previously www.vepc.bc.ca)

Clara Mae Hamilton

Clara Mae Hamilton 

Clara had never liked her name, but, that name was on her birth certificate in her father and her mother’s own hand so she had accepted it. She never liked being called Clara Mae and definitely not Mae. As a young child she had insisted that Clara was the only name she would accept. Young Clara had read Heidi by Johanna Spyri. Clara, in this story was, according the then young reader, was weak of body and mind, as well as a spoiled child. It made Clara Mae Hamilton shudder to be called Clara. But when she read about Clara Barton, the nurse who founded the American Red Cross she found her namesake and role model. At the tender age of ten, she knew she could be proud to be called Clara. Clara grew up reading as much as she could about Clara Barton and the stories of her bravery in the American Civil War, the nursing care of family and friends. As young Clara passed in to adulthood, all that faded, wrapped in shimmering gauze and tucked away.

Clara raised her children in an ordered way, volunteered in the community in an orderly manner, and generally conducted her life in blocks and schedules. Even her marriage seemed on a schedule, but her patient, kind and loving husband let her be until it was time for him to take her dancing. That's when she let herself go, whirling about in her red dress and black patent dancing shoes, held by the man she loved so dearly. When Michael passed away at the age of seventy five, Clara’s life continued on past her dear, dear Michael’s death. 

Holding her sadness still in her heart, she only allowed tears to flow when she played the Big Band Music they loved so much. When the record stopped, as if on cue, so did her tears. If her son or grandson was there, she allowed herself to dance once more. There were no tears then, her young men brought her such joy.

“Mom, what did you just do?”

“What do you mean, Michael?”

“You just dropped the tea kettle.  It’s a good thing it wasn’t boiling. It looked as though you almost fell!”

“Well it wasn’t boiling and I didn't fall.  There was water on the floor and the kettle just slipped out of my hand. It was nothing.  Happens all the time. Well, not all the time but just out of the blue once in a while.”

“Mom, how long has this been going on?”

“Oh, I don’t know. A couple of months maybe.  I’m sure it’s nothing. but if you’re worried, I’ll go to see Jim Huttleson next week. I have seen him about one fall I had a while back, but it was nothing.”

Michael, her eldest child, had come for a visit. His sister had called him and had casually mentioned some her concern about the fall. It strengthened his plan to come for this visit. A bachelor and newly retired, he had wanted to spend time with his aging mom, who was now eighty years old and living alone. He wanted to be assured that his mom was still able to take care of their childhod home comfortably. He had noticed a few things out of order. His mother’s usual order, anyway. He dismissed it as his mom realizing what she could and couldn’t do. She had been making noises about the house being unnecessarily large just for her. It was becoming illogical. The grandchildren no longer visited often, away at universities or on some European trip. It was hard to keep track of them. 

So, Michael quietly made an appointment with his mother's family physician. Jim Huttleston and Michael had known each other since high school. When he told his mom about the appointment, Clara did raise a bit of a fuss, but true to form, she said ‘Oh all right.  Let’s get this foolishness over with.’  Dr. Huddleston had already known about a few of Clara’s falls. She had omitted information about dropping things from time to time. When he learned more of these details (with Michael's prompting), Clara was referred to a neurologist, Dr. Ann Clancy.

Clara had blood tests, an EEG and an MRI very promptly due to her age. Two weeks later, having extended his visit, Michael took his mom to see Dr. Clancy to review the results. Not an unpleasant visit, Michael did feel sorry for the young woman when she explained her findings to his mother.

“What on earth are you talking about?! I knew when I heard your name, that you wouldn’t know much of anything. Epilepsy! That’s ridiculous. Epilepsy is what children get and in case you hadn’t noticed I haven’t been a child for many years. Now, tell me how you can be sure and have you shared your findings with Jim, I mean Dr. Huddleston.”

"Mrs. Hamilton, Dr. Huddleston and I have spoken and he has reviewed all the test results. He agrees with my diagnosis and treatment plans. He has also asked that you be referred to the local Epilepsy Foundation for some educational sessions about epilepsy and medications. I understand, from your son and Dr. Huddleston, that you live a pretty orderly life. That in itself is a very good start. I will get you started on medication today. Will you have someone with you for a while? You may experience some drowsiness while your body adjusts." Dr. Clancy glanced quickly at Michael who nodded.

Clara was less than pleased that there had been so much talking behind her back, but she would discuss that with her son and Jim Huddleston later. Right now, that was not terribly important. Her mind had slipped back to all she had read about the nurse, Clara Barton. She remembered one of the entries in a book about Clara Barton. She had cared for a young boy named Ira who had epilepsy at a time when just the word epilepsy was said in hushed and shamed tones. Clara Hamilton would learn to take care of her own epilepsy - as soon as she was assured by Dr. Huddleston that this young woman’s diagnosis was correct.

With characteristic abruptness, Clara’s anger had dissolved. She pinned Dr. Clancy with her clear blue eyes: “My dear, I have one question  for you. Can I still dance with my sons and grandsons?” “And for you, Michael, I’d like to begin looking for a smaller home."

Cool to Confused in Seconds

Cool to Confused in Seconds

Zeke Chisholm sat at the back of the room, his red and white cap on his head, the peak covering the back of his neck. His white t-shirt tight to his youthful body, a denim shirt open with sleeves loosely rolled up, blue jeans with just the right touch of crumpled neatness. Slouching just enough in his chair so he looked relaxed and cool, but not so much that the teacher would tell him to ‘Sit up straight, Ezekiel!’ Mrs. Lannigan was pretty old school and if she was in a bad mood, she made Zeke take his cap completely off. She didn’t like earrings, for guys anyway, or any kind of piercings for that matter.  Although she didn’t know about the ones hidden behind t-shirts and below waistbands.

Zeke had had a slower morning than usual. It was Monday morning. Saturday night had really been fun, not that he remembered much about it. He thought he had, but wasn’t really that clear. Stuff was kind of hazy. Sunday had been kind of blurry too. He didn’t do anything about it except sleep more. His parents put it down to teenage laziness and he was almost convinced they were right. Except for the feeling in his arms and legs. He was supposed to play some b-ball with his buddies but called it off.

Zeke’s eyes roamed the room, looking for Lacey Sarino. Saturday night had really been good. Looking at Lacey, Mrs. Lannigan’s voice seemed far away, kind of like in a tunnel. His eye lids were twitching like they did some time just before he went to sleep. Weird.

WTF! Why is my tongue so sore?! Mom called me for breakfast. Better get moving. I’ll be late for school. I promised Lacey I’d walk her to school today............WTF - Where am I? What am I doing on a bare floor!? My room at least has an old carpet! Damn, my head hurts.

“Ezekiel, wake up~ you fell out of your desk. The school nurse is here.”

“Why? The school nurse is only called in an emergnecy and I’m not at school yet. What are you doing here Mrs. Lannigan? Are you mad at me again?”

Zeke opened his eyes and saw a circle of faces staring down at him. Lacey with her long blond hair was crying, mascara tracing black wavery lines down her cheeks. What’s wrong with everyone? Why are they all staring at me? WTF! My pants are wet! I bet those jerks poured water on me and are having a good laugh. I wonder who needs the ambulance?

Zeke slipped back to sleep. When he woke up again, there was a mattress under him. His classmates faces had been replaced by white curtains. He could hear voices outside. Now where am I? What’s going on!? I’m supposed to walk Lacey to school.

A tall man Zeke had never seen pushed open the curtains. “Hey Zeke, how’re you feeling now? You gave everyone a nasty scare. Is this your first seizure or have you had others?”

Zeke's tongue was thick and sore, but he managed "I don’t know who you are or what you’re talking about. Just get me out of here so I can get to school. Lacey’s going to be really mad at me - didn’t I just see her. Was she crying?”

"Lacey? Is that your girlfriend. She’s in the waiting room with your mom and the school nurse. She insisted on coming with you. But let’s get back to why you’re in Emergency. I want to get you out of here as fast as you do, but I have to find you what caused your seizure. Guys like you don’t just have a tonic-clonic seizure in class for fun!”

Zeke was stunned into unusual silence.

“I’ve called a neurologist and ordered an EEG - that’s an electro encephalogram - to see what your brain has to tell us. This might have been a ‘one of’ fluke just like you said earlier - or it might be something else.”

“Like what?”

“Like epilepsy.”

“Epilepsy!!!! Epilepsy!! Did you tell my mom that!? Lacey? So you mean I’ll flop on the floor like a dead fish or do the funky chiken dance just out of the blue! I don’t think so. I’m not going to be like that guy in Grade 12! I’m not going to be like him!” Zeke's fists slammed on the mattress.

Zeke was rambling, his eyes filling with tears that he wiped violently away, sitting on the edge of the stretcher, still too weak and confused to stand up. “I won’t be able to work. To keep my driver’s license. To finish my education! I’ve watched what that other guy goes through!"

“Hold on! Hold on! One step at a time. Let’s get a diagnosis first and then see what needs to happen. I want you to see the neurologist who’ll give you the goods. We don’t know that it is epilepsy yet.” 

"Where's my mom? I need to talk to her, please. I just want to go home."

Cause and Effects

Heat rises....
Slashing, burning
Wires downed
Crossed circuits short and spark

Time passes quickly or slowly

Suddenly 

lights flicker, 

go out

Mobility crashes, crumples and fails

Memory banks fade to black wavering holes.

“I was interested in big unknowns, and the brain is one

 of the biggest, so building tools that allow us to regard 

the brain as a big electrical circuit appealed to me.”

~ Edward Boyden, neuroscientist at M.I.T.