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The Brain-E Warriors: The Epilepsy Support group that Shames Epileptics into Silence

Sunday, March 22, 2015 10:47

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You’d think a support group would be, you know, supportive. The first time I joined a support group will be my last.

It’s not that support groups can’t provide support. I’m sure some can. I’m just not convinced, didn’t like the experience I just had, and am positive I am not a good candidate for support groups.

It’s not that I can’t follow a group’s rules, I can, but when a group keeps changing their rules and shows a bias against alternative or non-mainstream approaches to the subject at hand… then I know the place is not meant to be supportive for people truly wishing to find actual cures, actual treatments, actual freedom from what’s binding them in place making them need a support group in the first place.

As an independent person and a person raised the way I was, I never believed a support group would be good for me. In my household, we were always taught that you take care of your own business, your own problems, and certain things just didn’t go outside the family. That might work for some people, but it was hard for me—especially dealing with depression, an eating disorder, and undiagnosed epilepsy, pretty much since adolescence. I didn’t want the same vicious cycle to begin spinning out of control for me now, after being diagnosed with epilepsy… so as I’ve been doing research, for my condition, for the articles I’ve been furiously tapping out, and for my general knowledge, I began to wonder if getting in contact with other people dealing with epilepsy might be helpful. And, if it wasn’t necessarily helpful for me immediately, as a teacher whose life has pretty much been dedicated to helping people, I might gain some sense of confidence, some sense that I wasn’t alone in the black hole that epilepsy can seem like, some sense of “doing good” by helping others in their fight with this disease.

I kept hearing about this specific group, The Brain-E Warriors —a closed, private Facebook group. It was highly recommended by any number of epilepsy foundations. It seemed, from the outside looking in, like a place where I could find some support. In order to join, you need to apply for membership to the group (via the above Facebook site). I normally don’t truck with that sort of thing. I understand keeping a friends list private and for the personal profile my husband and I share, it is private. But, every group I’ve ever joined—be it a cause or a geekdom—has been open to all. Every group Anthony and I have created for an organization, an event, a cause, has been public.

So that was the first thing bothering me a bit, but I understood very quickly, after joining The Brain-E Warriors, why this group was private. It needed to be to protect member privacy. With such a very large group— when I was kicked out (yup, I’ll get to that in half a mo) there was a little under 5500 members—the administrators wanted to guarantee that what was discussed in the group, stayed in the group. They wanted to limit membership to epileptics and family members (direct care-givers) of epileptics. I got that. I also got why they have rules of no sharing and no linking to the group. Simply put, people there share some very private stuff with perfect strangers and many of those folks use their real names, linking to their actual Facebook profiles. People were discussing depression, medications, treatments, hopes and challenges presented by their healthcare practitioners; there was even one thread—that actually, come to think of it may have been removed since I couldn’t find it again—posted by a man who was looking for a lifeline to prevent him from committing suicide. Sure it could have been bogus, but it was just an example of how raw the conversation could get there.

This very blog post is against the group rules, but since I’m not linking directly to the group, not revealing anyone’s name, and since they kicked me out of the group, it’s not my concern. I am posting this to caution people about the group and about the mentality rampant in this support group, and indeed in our world—a mentality that on the surface pretends to Give Support to People Suffering, but beneath the surface only seeks to perpetuate a climate of suffering, only seeks to perpetuate illness and dis-ease, and seeks to shame those willing to stand up and give voice to alternative approaches to illness. I suppose I’m lucky all they did was give me the boot. A few hundred years ago, I would have been facing the Inquisition.

One of the rules of the group was no discussion of illegal activity and no condoning of illegal activity. That was understandable but I didn’t quite get what that meant until a simple, honest, well-meaning thread blew up into a total shit-storm that resulted in me being kicked out of the group. I was reminded of when I got kicked out of the Brownies, but that’s a horse of a different color.

So, a handful of days after I was accepted into the group—not even a full week—a post pops up asking the group the honest opinion of medical marijuana as a treatment for epilepsy. With such an enormous group, threads popped up and down on the list continually. At the same time that this particular thread popped up, three other posts also popped up.

First, when the woman posing her query was posting, I was busily posing my own query, asking if anyone there had decided to use an alternative approach to treating epilepsy or if anyone who had used medication had successfully gotten off the meds; I further asked if anyone had used herbal treatments or other non-medical, non-surgical methods to control epilepsy.

Second, a random group-member posted a seriously Christian post, quoting chapter and verse, which is fine on its own. But what got me was that she pretty much implied that anyone with epilepsy who wasn’t “friends with Jesus” deserved the seizures. These are my words, not hers, but that’s what I got out of her post—and the many, “Likes,” smiley faces, and assorted “Amens” that I saw posted in reply. As a devout NON-Christian, that bothered me. It also smacked of the so-called righteous execution of many epileptics during the Inquisition and Burning Times. For centuries epilepsy was connected to witchcraft and we all know how the Church loved witches. As a pagan and a witch, not to mention an epileptic, it hurt me to the core. (Here’s a great history of epilepsy.) I’m not sure if the Bible thumper’s belief stemmed from the Biblical story that Jesus was had performed exorcisms, and on a boy with the “falling sickness.” I’m more inclined to think that she was merely being offensive to anyone who hasn’t been “saved.”

The third wasn’t so much a post but a reply to a post that I had, myself, replied to earlier in the day. Another new member of the group simply posted her experiences and used the term “epileptic” to refer to herself. That created its own shit-storm because apparently a lot of epileptics don’t like using the term epileptic. Instead of post positive support for this person who was, like me, outing herself to perfect strangers, she was accused of being derogatory because she used the term epileptic. There were a handful of newbies who, like me, saw nothing wrong with the term. We were quickly put in our place by the longer-term group-members. They never explained the opinion displayed by this picture.

They just went ballistic. I had to come to my own conclusions because NO ONE on the thread actually explained why people were so upset. I can understand the view that using the term epileptic instead of saying I am a person with epilepsy, we are somehow condoning an environment that characterizes the person by the condition. Ok… but by the same reasoning then we no longer have alcoholics or diabetics or addicts? As an amateur philologist, the word itself didn’t bother me. It’s simply a description of a person with a condition. As humans, it is (for good or ill) in our nature to categorize as a means of explanation. I understand people won’t agree, but to direct such vehemence towards someone for using a term that is NOT a slur and NOT a discriminatory word bothered me.

It further incensed me because the same folks chastising this woman for using the term epileptic were also chastising people suffering from epilepsy who were seeking alternative, non-traditional approaches to treating the condition. They were essentially shaming us for

using the term epileptic and shaming us for wanting another avenue to pharmaceuticals to treating our epilepsy. I also had to wonder if, like the above Bible-thumper, the people really bothered by the word epileptic were also bothered because historically epilepsy and epileptics were treated much the same as witches, women, and heretics of the Church.

I noticed also, in general terms during that near-week of being part of this group, that the folks in the group didn’t know much about epilepsy beyond what their doctors told them, or what was shared in the group. I noticed a lot of people posting queries about why their condition was getting worse, why their medications weren’t working, or where (or how) they could get relief from the myriad side effects from those medications—side effects that ranged from skin rashes, to hair loss, to thoughts of suicide.

As I said before, I’m a teacher. My mother often criticizes me, saying that Jessie never talks, she only teaches. I guess, if I have information, especially if I’m asked for help, and providing that information to someone WILL help or CAN help, then I can’t not provide it. So, inside of a week, I was posting regularly. When someone asked for advice about hair loss, I gave them some herbal remedies that might help and gave some suggestions about overly harsh hair care products to avoid. When someone posted about eczema, since I’m a bloody expert, I shared some remedies that helped get rid of my own eczema. When several people —a father of a girl with epilepsy and several different women in different threads— posted about worsening seizures or questioning the link to hormones and

COSM, Wappingers Falls, NY

seizures, since I knew about catamenial epilepsy (and no one had mentioned it yet on those threads), I shared what I knew. (Catamenial epilepsy can be boiled down to a kind epilepsy that women experience which is directly affected by fluctuating hormones).

One of the major rules of the group, no self-promotion, prevented me from sharing a link to my blog where I’ve written about these topics. I did, on one occasion invite group-members to message me for a link to my blog, telling them I’ve written and researched this stuff extensively. Generally, I got positive replies to my posts and people seemed to genuinely appreciate the resources I was able to provide, they appreciated the support and the feedback, even if it was to confirm that they weren’t “crazy” for thinking things like hormones and seizures were linked.

Now, getting back to the cannabis conversation…. The first caveat of that conversation, the woman posting said specifically that she was talking about legal marijuana use and merely wanted the opinion of the group-members on whether or not they thought cannabis could be a possible treatment for seizures. I believe she was posting from a location where

Alex and Allyson Grey with Dennis McKenna

medical marijuana is legalized. She was very clear that she did not want the conversation to violate the group rules, but since medical marijuana is legal in many places—both in the United States and globally—she felt that the conversation could be kept within the parameters of the group rules. The second caveat, a group administrator was part of the conversation and essentially echoed that belief. And, we did keep the conversation within the boundaries of the group. It was, I have to say, the most lively, enlightening conversation I had been a part of on that group.

It also happened to be posted on the day Anthony and I returned from visiting COSM (the Chapel of the Sacred Mirrors). We had spent a day at the retreat in the pristine, refreshing Wappinger’s Falls, New York, a day that was spent pondering alternative remedies to chronic illness. Dennis McKenna (author of Brotherhood of the Screaming Abyss

and brother to infamous psychedelic psychonaut Terence McKenna) was the keynote speaker who talked about his book which chronicled his own exploration—with his

Allyson and Alex Grey

brother—into psychedelics and ethnopharmacology. The focus of the day was the use of psychedelics as medicine. Alongside McKenna’s talk was the screening of the brilliant documentary Neurons to Nirvana and capping the day was a loose panel discussion about plant medicine with McKenna and the founders of COSM, Alex and Allyson Grey.

This brilliant weekend full of learning and discussion was fluidly in my mind when I sat down to read the posts on the Facebook group. I wasn’t sure I would post on the marijuana thread, since I had already posted asking people about herbal or alternative treatments to epilepsy. I noticed over the next several hours my own post got two likes but no comments other than one person saying, essentially, “yeah, there are herbs to treat epilepsy. I’ve never tried them and don’t know what they are, but they exist.” Really?

Then the misinformation started on the cannabis thread. People started talking out their derriere about cannabis, THC, and assorted subtopics. The misinformed folks weren’t against using cannabis, they just admitted they knew NOTHING about it other than the assorted tidbits (which pretty much consisted of rumor, misinformation, misunderstanding, and utter myth). They asked for information. There was a sense, from several people in the conversation, that if they couldn’t find the information from legal sources, they had no alternative other than to go the illegal route and basically go on a cannabis adventure to see what might help their conditions. I had to get in there and give some basic information, along with resources. I told them not to simply take my word for it, to read up on the topic themselves, and to absolutely NOT go to the black market. It’s not that I’m opposed to a cannabis adventure. If someone was looking for a specific strain to help them, trial by error wasn’t the way to go. I highly recommended the documentary, Neurons to Nirvana, and noted loudly that I had NO connection to the film, merely that I had just viewed it. I explained what it was and that it was the best film I have ever seen, from an educational standpoint, that discussed plant medicines—specifically psychedelics—and why so many are illegal in the United States (and elsewhere).

And then the same Bible thumper from earlier got on to post about her drama with epilepsy, how she tried every medication, underwent 2 (or perhaps 3) surgeries, all to no avail. I thought it strange because apparently from her earlier post, Jesus was supposed to help her and since she knew him so well, her seizures would be taken care of. She then called everyone taking part in the discussion about cannabis druggies, addicts, junkies, and drug pushers. She said she’d continue to bounce around to different medications, hoping something would work, but knowing that if something didn’t, she’d have Jesus to help her. As I remember it, she also said something to the effect that all us junkies deserved our seizures and that Jesus won’t help addicts.

One person politely asked her not to call everyone in the thread a junkie. One dude just kept tagging all the group administrators. He didn’t comment, just tagged them as if to throw up his hands to say: pot discussion here! Illegal activities being condoned! Help help we must repress this conversation! An admin got in to disagree with the Bible Thumper. Then I got in there to express my compassion for her not being able to find a helpful remedy, to ask her not to call us addicts or drug pushers because we were discussing what amounted to alternative therapies to pharmaceuticals, and I suggested she look at Neurons to Nirvana because it discussed why plant medicine was made illegal in the first place. I tried not to sound as angry as I was, but I did say that perhaps because Big Pharma hadn’t worked for her, she would be a good candidate for trying a plant medicine like cannabis.

Then the entire post was removed and then I was kicked out, for what? Providing information? For disagreeing with a Christian? For suggesting a documentary? I don’t think I’ll ever know really.

I had gotten angry at the attitude, the sentiment from the mainstream on the group who had been so quick to censure and admonish those of us interested in alternative, plant medicines—and so I walked away from the computer. I went back to see if there were any responses a little while later, after putting on a pot of tea and doing the dishes to vent frustration—and I couldn’t find the post. I saw several other members had posted threads, protesting that the cannabis discussion had been deleted. I couldn’t find my own thread querying herbal or alternative approaches to epilepsy. There wasn’t any mention of cannabis in that thread and it’s possible that the thread merely, without interest, dropped off the page—but I was annoyed that I couldn’t find it. Another of my posts, a response to someone about something entirely unrelated, had also disappeared. So I posted my own distaste at how people were being silenced. I noted that I wasn’t sure I’d be staying with a group that professed support—but only support for allopathic and mainstream approaches to epilepsy. Inside of 10 minutes, literally the time I took to step away from the computer and get a cup of tea poured, I couldn’t find the group any more. None of the notifications were on my profile… and I couldn’t even find the group in a Google search. Not only was my post gone, but I had been blocked from the group altogether.

Too bad The Brain-E Warriors didn’t have this motto.

I emailed one of the administrators, the woman who had accepted me into the group. She got back rather quickly, but claimed she had been away for a few days and didn’t know what had happened. I relayed the situation, expressed my distaste and invited her to send my reply to the other administrators—one of whom had been part of the cannabis conversation—but apparently that didn’t warrant a reply.

My lesson learned here? We live in a society that is not interested in health. We live in a society that is so firmly cemented to Pharmaceuticals that we’ve forgotten that modern medicine, Western Medicine was not the first medicine. We live in a world that has chosen to shame those seekers who want another, better, more natural way to health. The administrators of The Brain-E Warriors group are not interested in supporting everyone with epilepsy. They are only interested in supporting those epileptics who will smile, nod, and take their meds. They are only interested in provisionally supporting epileptics who will take their epilepsy medication and their anti-anxiety drugs and their antidepressants and watch their hair fall out and their loved ones abandon them in times of need, while swallowing even more medications that don’t seem to be helping them but in fact, as many in the group surmised, were really killing them slowly.

Do I mean that epileptics shouldn’t use medication? No. Epilepsy can be a life-threatening illness. It is a disease that is silent and not spoken about and is horrible to endure, especially when it’s not easily managed via conventional treatment. But, as I expressed to the administrators so ready to gag me and cease the flow of information, if people desiring information cannot find that information in a supportive environment, what alternative do they have? The cannabis that has been linked to a relief in seizures is a very specific kind—a kind legal in areas—a kind that people on that forum had a right to know about. The idea that a conversation itself is somehow illegal is very distasteful and is offensive beyond measure. By blocking me from that forum, by removing that post—and undoubtedly other posts and other posters—The Brain-E Warriors group has effectively refused its members information and has sought to shame people suffering epilepsy into silence—and for that they should be ashamed.

Source: http://www.green-and-growing.com/2015/03/the-brain-e-warriors-epilepsy-support.html

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