Home » epilepsy » On Charity, Care and Ridiculous Ribbons

On Charity, Care and Ridiculous Ribbons

purple ribbonThis blog post might seem a little nasty. Nah. It will. You can skip over it if you like, but I’m really emotional right now, and I’m just going to roll with it.

I just spent a month watching friends of mine raise money for Children’s Miracle Network, which is great. It’s awesome, actually. I like CMN and think they do great work. I didn’t donate, mostly because I don’t have any money with which to do so. I felt targeted by every call for donation. Why aren’t YOU giving money, Sonja? Why don’t YOU care about the CMN? Why haven’t YOU reposted this petition for support? This was an annoying feeling, particularly because I knew that it wasn’t intended. It was imagined nagging; at least I’m fairly certain it was.

I’m saying fairly certain because I feel like if I’m putting this out there in blog form at all, that it should be honest. It’s highly likely that nobody involved will read this blog post anyway; plus, this is my blog, and it’s a place for me to document my own journey. I’ve been ridiculously hurt and offended by some things that have happened among this particular group, and a little tit for all of that tatting should pretty much be expected. Anyway, moving right along …

November is Epilepsy Awareness month. It’s just as much B.S. as every other awareness month, really. Nobody can possibly be AWARE of the horror of any of these diseases, syndromes and disorders if they haven’t lived in close proximity. Nothing happens if you just wear pink in October or red in February, for crying out loud. Unless you’re digging into your pockets and/or raising money to fund research, you’re mostly just stroking your own weird ego about how “active” and “aware” you are. Which is … fine. Yes, I’m judging, but it’s fine. I’m just saying that if you’re REALLY aware, these things don’t have months. They have days…. 365 days every year, to be specific.

My daughter has had an epilepsy diagnosis for quite some time now, and these same friends who may or may not have been targeting me personally with post after post after post shaming me for not donating a dollar or two to the Children’s Miracle Network as recently as last week probably don’t even know. Maybe they don’t care – in my estimation, more likely. They certainly don’t bother to ask how Kaeloo is doing. They didn’t raise money or offer so much as a “hey that sucks,” when we got raked over the coals by our insurance company and paid $11K out of pocket for routine EEGs, CT scans, and trips out to Philadelphia to see specialists. I felt no support from them, despite all of their infinite care for sick children.

Maybe I’m being unfair. Wait … nope.

EPILEPSY IS A FATAL DISEASE. 50,000 people die annually in this country alone from seizures, SUDEP and other epilepsy-related incidents. That’s more than from breast cancer, more than from drunk driving. There are 3 million Americans and an estimated 65 million people worldwide (of all ages) with the disease. Domestically, that makes epilepsy more prevalent than cerebral palsy, Parkinson’s disease, multiple sclerosis and muscular dystrophy combined.

I don’t really give one g-ddamn if you wear purple and post stats on your Facebook wall and pretend that you really care about epilepsy issues for the month or not…. because it’s pretty clear that you don’t. It’s actually fairly clear that society at large doesn’t, so I can’t really blame you, I guess. Research levels and funding are abysmal despite the mortality and prevalence of epilepsy. Public knowledge about epilepsy hasn’t improved much since the dark ages. I’m not kidding at all. This is the outline for an oral report I did for school. It was absolutely gut wrenching to research, and I was F.I.N.E. (Italian Job reference) when I actually delivered the report to the Murse and a video camera:

docs

Outline

docs

Visual Aid

I medicate my child to control her symptoms, but she has still managed to have SEVEN grand mal seizures in the past 21 months. SEVEN. Her whole body twitches and shakes. Her lips turn purple because she’s unable to get enough oxygen for minutes on end. Her tiny, beautiful face is twisted into a horrifyingly ugly mask of suffering while her brain fires random synapses that she can’t fight. She vomits all over herself, and I have to shove a syringe of medicine up her rear end to stop her convulsions … and then she passes out for hours. It is scary. Every time.

And you. Don’t. Ask. You don’t ask about her. You don’t ask how I’m dealing with everything. Not once, unless I bring it up. You don’t care.

So … I guess I don’t get it. Is it easier to be kind to kids you don’t know? Is it easier to give a damn anonymously about people that you don’t see? Is it the lack of employer matching or cool logo that keeps you at bay, or is this some sort of care purgatory into which you thrust your string of “secondary” friends who don’t get invited to baby showers, birthday parties, weddings and other get togethers?

Honestly, at this point …. I don’t care myself. I’m tired of being hurt by my friends.

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One thought on “On Charity, Care and Ridiculous Ribbons

  1. I’m sorry that your “friends” make you feel that way, Sonja. Like I told you the other night, I don’t really know what to say to someone in a situation that I have never been in. I always feel so cliche saying, “I’m here for you” or “I’m sorry.” It doesn’t mean that I don’t care, though. When I hear about little kids with epilepsy, I instantly think about you and your little girl, even though we have never met in person. I can’t imagine the pain and fear that you and your family go through every day.

    As for the “Awareness” month thing — it seems like a lot of people would rather wear a T-shirt or wristband or post something on Facebook than actually reach out to someone that they know because other people will know about it. It’s trendy and cool to do such things nowadays, and it makes people feel good about themselves. Don’t let the ignorance of others get you down, though; you are strong, and you and your family can make it through, with or without so-called friends.

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