MILEPOST 4—I’M THE LEADER OF THE PACK/ONLINE AND OFFLINE
Epilepsy Support Group
In eighth grade I discovered that there was an Epilepsy Support Group for Saint Croix County, one night a month, to talk out troubles coping, fears, frustrations, on job harassment, domestic strife. At first, I was just a member, and then I graduated to ‘Leader of the Pack’ status. I was leader (co-facilitator) for Saint Croix County’s ESG for eight years. And for two years I was contact-person for the WWEC (Western Wisconsin Epilepsy Center).
Gender makeup and number of the group remained fairly consistent—six to eight people, one male and either five or seven females. This didn’t prove to be a problem until they began discussing “female plumbing issues.” It also gave me an insight into the female psyche that few males could match.
I was leery of writing this MILEPOST, confidentiality wise, but being that it all occurred over 20 years ago, and the situations these women and one man dealt with are important, the way people can help other people in a group atmosphere. I’ve fictionalized names and combined situations, but let me assure you the circumstances these people went through are real, not fiction.
Agnes “Aggie” A. was in her 70s. She began having seizures in her 30s, after the birth of her first child. She was misdiagnosed as being mentally ill; the child was taken away by the State. She was institutionalized at the State Asylum (as they were called at the time) for 40 years. In a complex-partial seizure, there is a total escape from reality, and the person can easily be misdiagnosed. When she had a grand mal seizure (as they were known at the time), she was “acting up” and she’d be strapped down on a table, tongue paddle in mouth, and given ECST (electro-convulsive-shock-treatments). It was barbaric and brutal but thankfully it came to an end after the following.
The director of the WWEC (Western Wisconsin Epilepsy Center) Luanne Coy was being given a tour of this facility, long since renamed—Wisconsin State Mental Health Facility. An elderly woman handed her a note that read roughly—Please help me, I don’t belong here. I fall and shake and don’t know why. Six months later, after 40 years of misdiagnosed hell, Aggie was free and living on her own in a small, two room house, in River Falls, Wisconsin. Even after years of mistreatment, she had a delightful sense of humor, always upbeat, a truly great lady. It would be nice to think that she was still with us but at the time she would have been in her seventies; that would put her in her nineties now so it is possible she’s still alive but not likely. She got beaten up terribly in her grand mal seizures and would attend the meetings with bruises standing out in stark relief from her white skin.
Sally G. was a perky, snippy little gal, preoccupied with a marriage that was quickly falling apart. She was mother of two cute young girls who always accompanied her to the meetings. To describe Sally as hyper would be a severe understatement—today she’d probably be misdiagnosed as having “restless leg syndrome.” And no one could explain why, she was on the drug Phenobarbital, yet it had none of the barbiturate’s usual side effects—slurred speech, lethargy, drug-induced depression, slowed thought and movement. In some people, phenobarbital has the exact opposite side effect, hyper-activity. She was constantly on the move, clear speech, highly active, she could not put on weight, her mind and body worked like a finely oiled machine. I remember talking to her on the phone about how she’d been up at 3:00 am that morning and been vacuuming the entire house. We recommended she see a different neurologist, but for her, phenobarbital worked, so don’t rock the boat, baby.
Depression, she did have, but it was due to her failing marriage and bastard husband. At each meeting, she railed on about him, his inconsistencies, and shortcomings, how she’d opened a savings account in her name and took all the cash that remained in their joint account out and deposited it. There wasn’t much left as he’d been buying presents for his little bit of fluff on the side, a 16-year-old blonde, with the morals of a two-dollar-whore. When he found out he was enraged, but she’d already filed divorce paperwork. We all saw her through her divorce and she was an active member until the group fell apart in 1992.
Kelly I. was a high-school-age girl with verbal diarrhea who came to one meeting. Accompanied by her mother, the girl could not keep rein on her constantly yapping mouth. She monopolized the meeting and discussed various activities I’m sure she had no idea about. The way she was cold-shouldered by the other ladies in the group, most of whom were married brought to mind, been there done that or you have absolutely no idea, girl, while she fantasized out loud. Then two jokes that caused her not to be invited back, I only remember one and include this as an example of the low-class, poor taste jokes we sometimes run into—What does an elephant use for a vibrator? Not funny!
Cora, her mother called me the next day to apologize for her daughter’s behavior, she’d been scandalized not only at the “potty” humor but the mention of sexual matters. The thing is, it was Kelly who had the seizures—had she had tighter control over her mouth, we’d have welcomed her back; the poor girl definitely needed support of some kind.
Megan L. and husband Dave lived about a mile from our home just outside Hudson, Wisconsin. She was a wood worker, a carpenter, but had failing hearing. Fortunately, at the point I’m about to mention, her hearing was fine.
Doctor Penovich decided to try me on a combination of Felbatol (felbamate) and Neurontin (gaba-pentin); I’d been in the drug study for the latter when still a patient at MINCEP (Minnesota Comprehensive Epilepsy Program). It didn’t work and caused major balance difficulties.
I was in the living room and just like a pine tree felled in the forest, Don went KER-BOOM! The back of my skull collided with the chimney hearth and cut a nasty 3-inch gash. Good thing about having been diagnosed with a thick skull (check out Diagnostic Testing). The one thing I remember was taking a cloth and washing the hearth off so it wouldn’t stain blood. It is a funny thing, the memory. I called Meg and she drove over and took a look at the back of my head and said, “We’re going to the Emergency Room.”
Here I’ll introduce a man I’ll call Doctor Payne. As I was lying face down on a table in the ER, he cleaned out the wound. I remember he wore gray slacks and white/red pinstripe shirt. He said they weren’t going to use Novocaine; I should be full of endorphins (natural painkillers) now. It was the first time I had surgical staples without anesthetic and I felt each and every one go in. Sadly this was not the last time I had surgical staples in my 40 year Epilepsy Career. Newsflash to doctors—Just because mentally we aren’t quite with it yet does not mean we don’t feel pain. We stopped by Taco Bell on the way back to her place; I wasn’t hungry. When we got to their place I climbed into a leather-upholstered EZ-Boy Recliner with bath towel under the back of my head and fell asleep, I was exhausted and slept for 5 hours. Meg knew my Dad worked at Oakland Junior High School, called there and left a message. Dad pulled into Meg and Dave’s driveway around 5:00 pm and picked me up. We headed home.
A couple weeks later, the staples came out, but it was a breeze. They used what looked like a reverse tweezers to get underneath each and SPROINGed them out.
Meg was a cool lady and I felt really bad when the group fell apart in 1992. She and Sally G. were smaller-sized women and would exchange clothes, as they were the same size. Meg had been on the drug Felbatol for years and was seizure free. Then she reached that particular time in life, she was 45-years-old, when hormones get caught in a hellish whirlwind called menopause, and I received a call from her husband, Dave, as at this point, Meg was nearly stone deaf, and being that she had female problems, I thought a woman Doctor would be just the ticket and recommended my neurologist, Patricia Penovich.
There was a man named Tim S, who also was on the drug Phenobarbital and it had the opposite its usual effect. He was a member of MENSA (a high IQ society) and he didn’t really like the idea of being on it as it can have some bad long term effects on intellect, memory, etc. We talked him into a new neurologist, and I believe he switched onto a less side effect AED. I’m not certain though as he and his wife stopped going to the group.
Angie S. lived with Don C., a man from the area in which I’d gone to High School, who’d graduated four years before I did. The first time, they both came to the group together. She only came a few times after, always alone. She had issues she dealt with at work—a canning factory. Angie had tonic-clonic seizures and they insisted she work on the line, where she overheated, BOOM! A seizure would strike her. Of more concern were the exposed blades, knives used to cut out the bad or black parts of string beans. There were far less hazardous jobs, but the supervisor, “High-handed Joe Cool,” insisted she work on the line. After a call to the director of the WWEC, and a call from her to the owner of the canning factory, Angie was given a job in a far less hazardous part of the building and a rise in pay. After the change in her employment situation, she stopped coming to the group, maybe venting thoughts and feelings was just not her thing.
Check out the papers for advertisements of Epilepsy Support Groups in your area. If you don’t see any call the nearest hospital—The Saint Croix County Epilepsy Support Group met at the HMC (Hudson Medical Center); the workers there will be most helpful. Try the local library—The Star lighter Writing Group met once a month at the Grantsburg Public Library. Open up the Yellow Pages and let your fingers do the walking to the letter E and see if a regional Epilepsy organization is listed—give them a call. Here I have a link that will help you locate your local Epilepsy Foundation, from which you can locate a Support Group in your area. Find Your Local Epilepsy Foundation—you can search by either ZIP code or State http://www.epilepsy.com/
The key word is epilepsy, the seizural condition that approximately two-percent of the World’s population share. The secondary, Support—It helps you cope with all the pressures life deals you, frustrations with your living situations or as in the case of Sally G., marital problems, it lets you blow off steam, boosts your self-esteem, self-worth, unquestionably help with your depression, and unless hyped up on phenobarbital like Sally G., usually helps you sleep better. The third word is group, it shows you are not alone, I know how it can feel like that sometimes. The first Support group I attended, I was shocked, literally dumbstruck, there were eight people there just like me. It was enlightening, regardless what other people did, and thought, and said, I was part of a group of “extra-ordinary” people.
There were other members of the group, too, but these were the memorable ones. Feel free to email me—I will respond via email, just when is the question, my email address is firstname.lastname@example.org
High Tech Online Support Group
I started an online support group on the Epilepsy Foundation site—check out the link on the About the author page at the end. So I’m counseling people once again, this time in a high-tech way and I love it; I really like helping out other people, if you have complex-partial seizures or are a caregiver of a person that has CPs, you are more than welcome. Our number is 75, although it is actually 74 as one member, a great guy named Todd K. died of a heart attack in August of 2014. His page is still up, his last post was about three hours before he had his heart attack and died. You can think of the Epilepsy Foundation site as Facebook for people with Epilepsy, their caregivers, I know some neurologists are members and a few psychiatrists—they’re the ones who ask; what state of mind were you in after the seizure?