Challenge, Commitment and Change

The challenge of ill health,

unwanted and unasked for,

grows from within.

A commitment to good health,

when planted with intention,

roots in heart and spirit.

Many changes can be wrought when life blossoms in mind, body and soul.

“A wise man should consider that health is the greatest of human blessings,

and learn how by his own thought to derive benefit from his illnesses.”

~ Hippocrates

A Conversation about Risk

You can’t - I did.

You daren’t - I dared.

You have no need to dream.

Dreaming opens possibilities.

School is too hard for you.

It took me longer, but I learned anyway.

No one will hire you.

I found someone who did.

You’ll never get a driver’s license.

I’ll never know till I learn the regulations.

No one will want to marry you.

The love of my life proposed.

You’ll never be able to raise children.

Together we raised a family.

Who will take care of you when you’re old.

I’m not old yet, but so far I’ve taken care of myself!

“If one is forever cautious, can one remain a human being?”

~ Aleksander Solzhenitsyn

Research vs Daily Practice

Epilepsy is not at the top of the list for research dollars. Scrolling through the internet, there is research being done, mostly about neurobiology - the brain and it’s workings - and the genetics of epilepsy. I’m not certain of the specifics regarding the effects of active epilepsy on health care dollars, employment costs, the education system and in general someone’s home life. These issues would include the effects on the caregiver, if that is required, and details like care giver burnout, daycare, and respite beds. Then, there are dietary and medication requirements to be factored in to all these details.  

Home life can become extremely compromised, depending on the severity of the epilepsy, if there is more than one family member with this condition, how treatable are the conditions and the age of the individual with epilepsy. The two demographics that show the highest rates of epilepsy are children, and further, a significant amount (at least 14%) of people over age sixty five.

I have never been very interested in doing research, but interested in the results of research especially when it pertains to myself. I have benefited from the research that developed Phenytoin (Dilantin), phenobarbitol, ElectroEncephalograms (EEG) and the medical education my physicians have obtained. My form of epilepsy, idiopathic and temporal lobe, is pretty basic and I live a pretty good life - independently.

The more complex any health care condition is, the more complex the research must be. Increased complexity of this neurological condition means that there is more labour intensive daily care required at home,  at school, and in the community.

Another question that I raise is - Which must come first? Where should the dollars be spent? Which health condition needs to be addressed first. Epilepsy, this hidden disease with it’s attendant stigma, is just not at the front of the line and may even get pushed back occasionally.

Another issue that relates to research, and yes I am grateful for what I have, is that research results do not trickle down very quickly - if at all - to the individuals and families that require the knowledge to care for themselves or their loved ones.

We each must take care of our epilepsy on a daily basis, regardless of all the issues I have just raised.  And many times individuals and families do it based on limited knowledge, the knowledge of physicians and plain old fashioned common sense.

Addendum: August, 2024 - An added problem has arisen since 2013 - It is becoming increasingly difficult to obtain a family physician, a neurologist, and/or an epileptoligist depending on one's location in the country of residence.

“Science is simply common sense at it’s best, that is

rigidly accurate in observation, and merciless to fallacy in logic.”

~ Thomas Henry Huxley

Author's note:

Contact the BC Epilepsy Society on line for contact information, provincially and locally.

This information still accurate:

Canadian resources: canadianepilepsyalliance.org

                                 https://www.epilepsy.ca

United States resource: www.epilepsyfoundation.org

This information, links and phone numbers no longer valid.

Resource (practical) here in Victoria

Victoria Epilepsy & Parkinson’s Centre

813 Darwin Avenue

Victoria BC V8X 2X7

Phone:  250-475-6677

Fax:  250-475-6619

Email:  help@vepc.bc.ca

Web:  www.vepc.bc.ca

Letting Go of Epilepsy

How does one let go of the fear of something that resides inside some tiny part of your brain that cannot be seen without our present day technology?

How does one let go of all the behaviours that might come along with that ‘something’ or the stigma that is still, unfortunately, far too prevalent?

How does one let go of the loved one that has epilepsy?

watching that person try to navigate a world they may not understand.

witnessing seizures that could mean certain death - in an instant.

And what if that person is a vulnerable child - or maybe even infant?

I don’t know that I have an answer to those questions.

As an adult, when I have witnessed a tonic/clonic seizure, I have been in a health care setting with policies, protocols and people to help me to support and assist my patient through the seizure.

Only once, as a child of about ten, 

did I see my brother have his first tonic/clonic seizure.

My feelings - that I remember?

Confusion, frightened.

But dad was there to take care of things.

It was new to our family, and occurred many years ago when there was scant education about what to do when someone has any kind of a seizure.

How does anyone let go of epilepsy? 

Learning about types of seizures and what to do, 

can help and may just define your place in bad, or maybe just uncomfortable, situations.............

“Let go of certainty. The opposite isn’t uncertainty. It’s openness, curiosity and a willingness to embrace paradox, rather than choose up sides. The ultimate challenge is to accept ourselves exactly as we are, 

but never stop trying to learn and grow.”

~ Tony Schwartz

Provincial Resources:

www.skepilepsyinc.com

www.epilepsymatters.com/english/alberta.html

www.epilepsymatters.com/english/saskatchewan.html

www.manitobaepilepsy.org/

Concentric Circles

A newborn child grows and plays, 

learning family life-long ways.

Each family will have joys to share

and maybe wounds will need some care.

Teens spiral out to church and school.

Not one of them without some tools.

From village, town and cities strong

grown children enter world’s great throngs.

Building community quite far from home,

when babies are born, new families bloom.

*****

Epilepsy in one child, in one adult, one elder

affects families and communities ~

    ~ locally, regionally, nationally and globally.

“I don’t believe that life is linear.  I think of it 

as circles ~ concentric circles that connect.”

~ Michelle Williams

Resources at:

The World Health Organization

The International League against Epilepsy

The International Bureau for Epilepsy

 http://www.who.int/mental_health/neurology/epilepsy/en/index.html

Reflected Feelings

I feel shame when my epilepsy disrupts a family day, but I’m supposed to be proud of my other accomplishments.

I feel fear and helplessness when others witness my seizure but I’m supposed to be a helper and not be afraid.

I feel the anger of others when my involuntary noises interrupt a meeting, when I’m supposed to be quiet and attentive.

I feel your intolerance when 

I am unable to control myself.

but I’m supposed to tolerate myself.

I feel respected

when I show that 

this condition is 

my responsibility

I feel accepted

when I accept myself.

I feel love and affection from others

when I have learned to love myself.

“Feelings are more dangerous than ideas, because they 

aren’t susceptible to rational evaluation. They grow quietly, 

spreading underground, and erupt suddenly, all over the place.

~ Brian Eno