Here's to the Caregivers!

This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!

Here’s to the caregivers for people with epilepsy!  Here’s to those who live with us, take us to the hospital, and love us any which way they can.  And here’s to that selfless love.  It gets us through all that life has thrown at us.

But what of those with epilepsy whose families don’t seem to be so loving?  We can be shunted to the side, never truly to join the family table.  How could these mothers, fathers, sisters, brothers, and grandparents be so heartless, seemingly embarrassed by the existence of “an epileptic?”

I’m graced with a loving family, but, in my support group, I’ve gotten to know wonderful people with epilepsy who have been emotionally shunted aside.  One person – we’ll call her Emily – literally had to sit off to the side.  She didn’t go to the family celebrations at cousins’ houses during the holidays, and her own family never hosted the events themselves, fearing the rest of their family would see a seizure.  Everywhere she looked was shame.  It’s inconceivable, but, then again, so is cruelty of any sort within a family.  How is this possible?

nally crippled by their families.

The “self” blurs outwards.  Depending on the individual, it either ends within the confines of one’s skin, brain, and actions or extends further.  For some, the person’s surroundings – environment, money, and/or people -- become a part of the self.  Feelings of pride or embarrassment blow back on individuals in the family.  And, for these people, the shame, seemingly caused by the innocent person with epilepsy, can’t be negotiated. 

Now, granted, we’re imperfect beings.  This extension of the self is challenging to control, even for those who recognize the interplay.  Regardless of these root emotions, though, our duty to care for our family is written into the definition of what it is to be human.  And it’s through this caring, this safeguarding, this loving of our family that we truly add to the core of the self. 

There are amazing caregivers whom most of us have met, many leaving us speechless.  As angry as we all can get about those who turn their backs on people with epilepsy in their care, I’ve decided to spend my time thinking about the extraordinary caregivers.

So, here’s to the father who drives his teen-age daughter everywhere so that she can participate in all of life, especially those I’ve encountered who support the Epilepsy Foundation New England.

Here’s to the mother who makes ketogenic meals for her daughter, having the rest of her family adhere to it, too, so as not to make the child feel odd.

And here’s to the sister and her husband whose brother with epilepsy lives with them, making him simply a part of their natural lives.

I’m so grateful for all these wonderful caregivers and would love to hear your stories about those you know.  If you have them, I hope you’ll tell them in the comments.  These are the tales that need to be told.

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