We are excited to introduce you to George Choyce who has epilepsy, and has agreed to write a new monthly column -- Fresh Callings -- for our newsletter!
George Choyce is an Episcopal priest who has served parishes in Florida, Pennsylvania, Connecticut, and Tennessee. He was the rector of St. Timothy’s, Signal Mountain and currently volunteers at St. Peter’s Episcopal Church in Hixson. He lives on Signal Mountain with his wife of 27 years, Anne. They have four children and two dogs.
Look for his thoughts each month, and be prepared to be supported, challenged, and inspired.
February Support Group
Erlanger pharmacist, Allen Broome came to share with our group February 7th.
He spoke about medications, prescriptions, and pharmacies. Some pointers you might appreciate:
To increase your chance of having insurance pay for brand name drugs, make sure your doctor writes both "Dispense as Written" AND "Medically Necessary" on the prescription.
Hospital pharmacies will provide whatever medication they currently have on hand. If you are hospitalized, take your own home medications to reduce cost and to reduce risk of break-through seizures as a result of brand v/s generic or a different supplier.
When hospitalized, have your doctor write "Must use home medications" on your chart at the beginning of your stay. This should allow you to use your own home meds, rather than the hospital's.
Thank you Allen for all the great information you provided!
Google Doodle for Epilepsy Awareness
These folks are asking Google to represent epilepsy awareness every year by displaying anEpilepsy Awareness Google Doodle 2 days of the year. Do your part by signing the petition!!
November 1st - First day of Epilepsy Awareness Month
This way millions who use Google each day could learn more about epilepsy awareness and become involved in helping find a cure. Also, for the millions worldwide who live with epilepsy, it would shine a bright light for them to let them know that they are thought of!
FRESH CALLINGS
"But You Look so Healthy to Me"
“But you look so healthy to me.” Have you ever been fortunate enough to be told this by very well-meaning people when they find out you have epilepsy? I get told this all the time, because I refuse to “remain in the closet” about my epilepsy. I refuse to remain silent. I have got something to say or write, in this case.
I am sorry if I sound preachy on the subject, but it is an occupational hazard. You see, I am an Episcopal priest. “But you look so healthy to me, Father George,” is the constant, kind refrain of people whom I meet when I share my journey with epilepsy.
We all have a story to tell and a sojourn to share. It is healing not keep it all to ourselves. In my experience, it has been educational and encouraging to others to speak up about my experiences. “But you look so healthy,” is not healthy. Healthy on the outside does not mean healthy on the inside. What is more, silence over our “invisible disability” is not being well, because calculated quiet is the top put on a lid of boiling liquid. Something is bound to blow; the results will not be good.
Being a priest has its specific challenges. I used to sit around, sulk and remain silent once I was put on disability. This experience has been, and still is to some degree, part and parcel of my private grieving process. As I spiraled down into bottomless grief, I feasted on my anger, because I finally had a legitimate reason to be mad at God. Are you surprised to hear this from a priest? Have you never been mad at God? I could be angry because I was trying to do all the right stuff. Does this sound familiar? Furthermore, I was doing the right stuff for God and bam; I began to have Partial Complex Seizures. A CT Scan revealed a Cavernous Malformation deep within my left frontal lobe. A follow-up MRI uncovered a dark ring, called a hemosiderin ring, circling the Cavernous Malformation. This was the location where the “Cav Mal” had hemorrhaged. The irritated tissue around the blood launched the rest of my brain into total chaos and seizures were the result.
The physical part of seizures is difficult enough. In my opinion, the emotional and spiritual facets of epilepsy were even worse when they unpredictably erupted to the surface when my seizures were not controlled. All of my beliefs were broken open. Nothing prepared me for this. For instance: how can a good, loving God let this happen? Furthermore, as the Bible states, seizures can be considered a sign of demonic possession. Talk about an identity crisis! (I will address this specific issue in a later issue.) Additionally, families and friends are pulled into our fearful, unpredictable world. This was another burden I was not prepared to handle, because the poison spreads to others and multiplies exponentially. But we don’t talk about it. For whatever the reason or reasons, polite people don’t talk about it. Epilepsy remains generally taboo. We know that epilepsy is a medical condition, and we do not discuss it with others.
As poison must be extracted to save a body, toxic silence slowly steals our health unless it is addressed. Silence must be removed through talking about seizures. “But you look so healthy,” seems to be a way for onlookers to distance and shield themselves from our scary seizures. It is the paradox of spoken silence. As long as the “health card” is reinforced, then our condition – it is called epilepsy – will never get out and finally minimize the stereotypes of those of us who live with seizures. Maybe we should be more visible about our “invisible disability”? How can you be more visible? How can you be more verbal about the forbidden “E” word – Epilepsy? For me, I will keep on preaching about it. Like I wrote earlier, it is an occupational hazard.
