Wanna test a friendship...?
April 20, 2012 6:25 PM   Subscribe

Have a seizure. The non-disabled can have a lot of trouble coming to grips with a friend's disability, especially if it's something that doesn't show up well from the outside. As the writer puts it, "... she knows I have MS, but she's never actually seen my disease, and there are miles between those two things." There are a whole host of bad ways for someone to react to seeing the disease. And then there are the good ones.
posted by MShades (23 comments total) 35 users marked this as a favorite
That was so wonderfully written.

I have friends like Chion who, when first seeing what an RA flare is like, reacted the same way - calmly, no freaking out, just care and gentle concern. It means a lot to have friends like that.
posted by MissySedai at 6:59 PM on April 20, 2012 [1 favorite]

When I had my one and thankfully only seizure I was in bed. My then girlfriend (now wife) tells it better than I can.

She thought that I was having a really bad nightmare. I was thrashing about. It was pitch black in the room. She rolled over to tell me that it was just a bad dream. It was when she realized that it wasn't a dream she got up to turn on a light. That was when I fell off of the bed onto the floor. She said I was as stiff as a board. So she called 911. They told her to put a pillow under my head. She had to stand astride me and lift me off of the floor lengthwise like a statue. She says that at that time I was making a snoring sound. Like growling. (I understand that this is something that is normal)

It took about two or three minutes for the EMS to arrive. I was just coming around when they got there. I had no idea where or indeed who I was. It was like arriving newly born in a strange world. I do recall trying to take the oxygen mask off because it was too tight on my face.

They took me to the hospital. After some testing, EEG with lights, EKG, blood and such, they sent me home with a prescription for Dilantin. Which I take to this day.

I remember my body being sore from head to toe and covered with a patina of red dots from broken capillaries.

The thought was that brain damage from an earlier head injury (depressed skull fracture and surgery) was to blame.

My wife was cool headed and calm throughout (or so she tells me to type). people who will go through something like that and stay with you are few and far between.
posted by Splunge at 7:01 PM on April 20, 2012 [14 favorites]

I was acting in a show with a young man, let's call him Todd, who, unbeknownst to nearly everyone there, was prone to seizures. He had one early in the rehearsal process and several people started freaking out. I got my eyes down to his level and said, "Are you ok?" He made a very slight nod of the head. I said, "Can we do anything for you?" He made a very slight shake of the head. I said, "Laura here is going to sit with you until you're able to get up. Ok?" (Laura was a cutie in the show who I had sort of noticed was sweet on him, and she was already right there.) He made a slight nod of the head.

Laura sat with him then and throughout his other seizures that occurred throughout the rehearsal and performance of the play. She and he are now engaged.

One time he had a seizure and by that time everybody had gotten used to it...except one person who was new to the group. She freaked out and called the cops. While the emts were questioning people, our friend Barry looked at Todd and said, in a way that I think only an actor can, "TODD -- STOP HAVING SEIZURES." There was huge laughter and the emts left shortly thereafter. Todd came back to us, punched Barry on the arm, and we continued rehearsal.

Everybody has issues, I guess.
posted by Infinity_8 at 7:28 PM on April 20, 2012 [23 favorites]

I'm curious now. What is it like for others who have or have had seizures. That moment right after. That feeling of 'after the seizure'? Was it just me and what happened to me? Or is there a common thread, a common feeling? I don't know if I'm saying this the the right way... Maybe someone else can explain it.
posted by Splunge at 8:21 PM on April 20, 2012

Was it just me and what happened to me?

I had one once (only once, probably brought on by dehydration - yay 112 degree Texas summers!) and the aftermath was pretty fucking weird. I now have an intimate understanding of why prophets and visionaries fully believe they're getting messages from On High. I dunno if that's what you felt.
posted by restless_nomad at 8:24 PM on April 20, 2012 [3 favorites]

I have temporal lobe seizures. A couple a week in a good week. I do not have grand mal seizures.

I don't always know when I'm having one _in_the_moment_ but I always know before and (usually) after. Before hand I get a lot of aura like activity, like some people do with migraines, including light sensitivity, a sense of impending doom, difficulty parsing spoken language etc.

Afterwards I know because holy shit am I tired. And cranky. And I lose most of my nouns for hours. Oh and I hate you, and everything else though it's not really my hate. That hate is a lot like the ghost of a smell the last tenant left in your apartment.

When it's really bad I will have absence seizures and will suffer all kinds of confusion and disorientation for some time afterwards. I do not form memories well in this period. I am apparently a bit of a short tempered jerk and will take out my frustrations being me on pretty much everyone else.

Generally that feeling 'right after' is one of deep frustration, fatigue, pain (headache) and disembodied disorientation. I probably don't want to talk to you because a)it's too much effort b)I think I just sprained my brain and c)I temporarily have the disjointed vocabulary of an elderly dementia patient who's forgotten your name 3 times in the last 5 minutes but can still recognize you from your gait a block away. Oh and d)chances are no matter how loud you speak it sounds like, to me, that you're an adult on a peanuts cartoon. The closest I can describe it is a little like auditory dyslexia.

If you know me well enough to recognize some of my tics and ocd/tourettes triggers witnessing an elevated presence of these is a pretty good indicator that it's been an incredibly shitty neurological week and even if I do possess the social tools to talk about you can bet that that's the very last thing I'd like to do. I can't imagine adding in some of the more trying physical complaints some people have to deal with or even the first aid concerns around a grand mal.
posted by mce at 8:46 PM on April 20, 2012 [12 favorites]

I guess that the point that we may take from this is that seizure is a word for what happens to you. It might mean that your brain does "something". And whatever it is, it's different for each one that experiences it. So me asking 'what is it like for you' is like asking what is life to you?

There can be no one answer.

I think I was asking a question that can only be answered by mine was this way.
posted by Splunge at 9:32 PM on April 20, 2012

My wife started having seizures due to side effects and bad interactions between the anti-rejection drugs she had to take after her kidney transplant. The hate/anger mce mentions after a seizure she suffered from as well, The seizures itself are scary enough: teeth shattering, going stiff, shivering, but the aftermath was worse because of that hatred and paranoia, that could last anywhere from a day to a week or two.
posted by MartinWisse at 1:34 AM on April 21, 2012

My spouse's story has a lot of parallels with yours, Splunge. He doesn't remember much of it now. I remember that when he started to come around, he was totally disoriented. I bent down towards him, saying his name (he too had fallen out of bed). His eyes focused on me, he inhaled sharply, and his hands flew up defensively as he recoiled from me. It took him maybe five minutes to start being verbal, to be able to remember his name or where he was. By that time the EMS had arrived. He told them he had a bad headache and exhaustion.
posted by cybercoitus interruptus at 2:14 AM on April 21, 2012

I get partial complex and absence seizures as a result of my brain cancer (in the temporal lobe). They vary. Sometimes I remember having had one and sometimes, disturbingly, I don't even remember that. There are certain songs that sometimes play in my mind or things that I visualize, and when it happens, I think "oh yeah, that's it" ... and then afterward I can never remember.

To answer your question about the aftereffects, I sometimes feel cranky or something afterward, and sometimes not. I do often space out and have difficulty processing information or communicating for a period of time. Some of that depends on how many seizures I had that day already. Sometimes I have auras only, where I feel like a seizure's coming on, but it never does.

All of this occurs, of course, when my meds stop working for some inexplicable reason.

Thanks for this post, the writer and her story are lovely and inspirational.
posted by miss tea at 3:32 AM on April 21, 2012

My wife gets tonic-clonic (AKA grand mal) seizures. They are normally well under control, but she has had a couple of bouts following the birth of our first child, probably due to tiredness and hormonal influences. She had a cluster on the very day that we brought our baby home from the hospital, and then turned around and went straight back - unnecessarily, but there was a concern that it could be eclampsia. Our daughter has seen her mother seizing and will have to learn how to act as calmly and considerately as the friend of the author of this wonderful piece of writing. Ideally, everyone should know what to do, although I can completely understand that people might be frightened. A seizure can be scary - you can see how religions get started. Everyone's seizures are different, but here are two general pieces of advice for those who are unsure how to behave around someone having a seizure:

1. DO keep them away from hard or sharp things, particularly their head.

2. DO NOT obstruct their airway in the belief that the person might bite their tongue off, as used to be the advice.

We're lucky in that my wife's seizures are rare, but our family's health visitor (for non UKians - this is a person that our socialistic government sends round to give you advice on your child's health, feeding, and sleeping) put it rather nicely when we were trying to figure out how to juggle the various family members' sleeping requirements: "This is going to be in your family for a long time." The seizures are like a family-member: an uncle who comes to stay unannounced and is a big pain, but only really needs to be looked after and an eye kept on.
posted by GeorgeBickham at 5:03 AM on April 21, 2012 [1 favorite]

I've also have seizures - mine are grand mal, but I get an aura beforehand. So what I see is a small vision, that no one else can see except me. It's a circle about 4cm in diameter, and it is a dull grey color and has images moving inside of it, as if someone cut a piece out of the TV and put it in the sky in front of me. It's always in my right eye, but far enough away that I can see other things in my field of vision as well. I usually point at it, and if I'm doing well I can get a few words out to warn someone. Then I become unconscious.

My experience is waking up later, disoriented and surrounded by concerned people, having no idea what happened. At that moment I can't remember the seizure itself, or the rest of the day - my brain is completely fried. I forget the names of things really easily, but I still recognise people and objects, so I communicate by describing the concept and people can guess the word I've forgotten. But I tend not to speak much, as I have almost always bitten my tongue, and it swells up and gets bumps along the sides, so talking isn't easy for a few days until that goes away.

Physically my body feels like I just ran the longest marathon ever - aches and muscle stiffness all over, and exhausted. It feels like that because during the seizure I either shake vigorously, or go rigid and totally stiff. I've also been told I lose control of my bodily functions, and can drool or foam at the mouth as well, but by the time I wake up it has usually been taken care of.

Emotionally I can be sad or depressed, but mostly just spacey.

Thanks for the story - it is inspiring and a great way to raise awareness.
posted by EatMyHat at 5:37 AM on April 21, 2012 [2 favorites]

About a year ago, I was on 1 train coming from the Bronx into upper Manhattan and a women sitting next to me stood up, reached for the pole and then fell down and started to have a seizure. The car was approximately halfway full and I have to say that this was one of those moments when people were great - someone made sure the woman's purse was being watched, I put a folded shirt under her head when her seizure caused it to bang into the floor of the car, no one tried to put something in her mouth, and when she stopped seizing, someone went to her, put her in a seat and kept her from trying to go between cars when she was confused, talked to her calmly - in both English and Spanish because she appeared to be Hispanic, and then finally when we were in a station, someone took her out of the car and waited for the EMTs/paramedics to arrive.

During the time we spent in the station, there was one guy who was being a pain in the ass about it, complaining that the train was stopped, and a few people just told him off for being an ass.

The whole thing was impressive - people stopped and made sure this woman was okay and got the help she needed.
posted by sciencegeek at 5:48 AM on April 21, 2012 [11 favorites]

I was 8 or 9, and remember all kinds of colorful images and words going off before my eyes, kind of like fireworks but with pictures. I vaguely remember sounds but it's been so long I couldn't tell you what they were.

Oddly, I remember seeing the cavalcade of images while walking upstairs to my room in the early afternoon. The seizure actually happened in the middle of the night - I was taken to the hospital, stabilized, brought back home and put to bed. I don't remember any of that at all, and the bright afternoon sunlight is such a strong part of the memory I do have - maybe that was a hallucination leading into the seizure? I don't know.
posted by Flannery Culp at 6:18 AM on April 21, 2012

Things are much more complicated when you have a chronic health problem that's much less visible. My wife has a rheumatological disease (still no firm diagnosis a year after initial diagnosis and about three years after onset of symptoms--but that's an issue for a separate discussion). She has days when she's in a lot of pain and just can't leave the bed/house. Many of our friends have just drifted away during this time but there are a precious few who show compassion whether they understand the problems or not.

I can best relate the person ive had the most intense experience with. My former boss was one who couldn't grasp it. Although he knew I was going through this and a couple other personal crises (caring for elderly and/dying parent, etc), he called me into his office to reprimand me for not spending enough time working (though I was doing 45 hours/week). When he asked why I couldn't get my laptop out late in the evenings, I broke down crying and outlined my evenings (this was back before my wife had her pain under control and had been mostly bedridden for a few months): get home, make dinner, do a little housework, spend an hour with my family, collapse into bed by 9:00. His response: wow, you have to make dinner?

Fortunately for me, he got laid off--in part for being a crappy manager, I hear--and my new manager reiterates to me that family comes first. More importantly, he trusts me to get my work done regardless of how much time it takes me or what time of day I do it (grateful to have a career with that kind of flexibility).
posted by tippiedog at 7:20 AM on April 21, 2012

I used to have grand mal seizures when I was young, but they have gone away now. I am interested to know what the differences are between types of seizure with different causes. A friends mum had a diabetic seizure, which i had never heard of before he told me about it. What causes the seizures with the different illnesses? How are they different? Do you get Auras with MS seizures?

(Note for those who don't know: Aura in this sense has nothing to do with Kirlian photography).
posted by marienbad at 8:53 AM on April 21, 2012

One of my roommates had a seizure disorder, brought on by too many concussions playing rugby. When she moved in she hadn't had a seizure in a while, so she didn't think to warn us about what might happen. About six months later she for some reason started having a grand mal seizure almost every week, as well as frequent absent seizures.

I missed the first few, and then one day she came into my room and told me she was going to have a seizure and would I mind hanging out with her for a while. She sat on the floor with pillows piled around her and we talked normally, listened to music and watched youtube videos. After about half an hour my friend started to stutter, repeat herself, and lose track of what she was saying. She drooled and spat, her mouth was somewhat slack, her eyes and shoulders twitched violently, and her hands were curled up in claws.

I thought this was the seizure, until she hit the floor and started convulsing. It only lasted about five minutes after that. A few times her eyes were open and she looked at me and I thought she was back, but I was wrong. There wasn't much to do, except wipe the spit off her face, and when I thought she might choke I rolled her on her side - which was a lot harder than it sounds and she elbowed me in the face twice. When she came to she was exhausted and didn't say much.

There was never any doubt in my mind that I was just supposed to be there for her, and this wasn't a big deal, not something she had any control over, etc. But when I think about how I would feel if I had someone scrutinizing me while I stuttered and drooled and choked on my spit and became absolutely helpless - there aren't very many people I would want to see me that way, but she didn't have any choice. I often wonder at what point she stopped remembering what was happening, and does she remember me nodding along while she tried to tell a joke except it wasn't coming out and I smiled at it anyway. This didn't affect our friendship at all (there were many seizures after that one), but I can understand why she often preferred to have her seizures in private in her room without telling anyone, even if it was less safe.
posted by ke rose ne at 9:24 AM on April 21, 2012 [2 favorites]

Posts and threads like this are what I love about Metafilter. Thanks.
posted by salvia at 2:09 PM on April 21, 2012

This is what I was trying to describe when talking about auras in my post above.
posted by EatMyHat at 2:23 PM on April 21, 2012

Thank you all. I had a friend in a summer program I was in with epilepsy. I am not sure exactly what type of seizures she had, although from the descriptions, they were not grand mal. They mostly involved rocking back and forth for a minute or so. To me, it was no big deal, I just had to remember the flow of conversation, as she would sometimes come out of them expecting to just keep talking. I remember one day that she had one in class. Afterwards, she was ashamed and embarrassed, which I did not understand. After reading through your comments, it makes sense now.
posted by Hactar at 5:41 PM on April 21, 2012

I've never seen a seizure but I've been freaked out in other extreme situations. Thanks for sharing your stories, I hope that I can better empathize if it should ever happen to someone around me.
posted by cman at 12:56 AM on April 22, 2012

Oh MS, you are so hilarious and spontaneous with your surprises and the whole not knowing WTF is going to happen from one day to the next. I think only a very small percentage of us with MS have seizures, which I guess is kind of comforting to know. I did a bit of googling & it seems about 2 - 3% of people with MS have seizures, which is about 6% above average. I'd paste my sources, but I'm too damn tired.
Thanks to MeFi, I know about MS symptoms such as palatal myoclinus, seizures and death. YAY! These are things most neurologists don't tell us.

Splunge: I've not had a seizure (that I am aware of) but I used to get regular migraines. I started learning massage in 2002 & since then I've had regular massage & now I only very infrequently get migraines. I initially thought the MS exacerbation that lead to the MS diagnosis was a migraine (until the next day when my vision still hadn't returned to normal). I can't answer your question about seizures, but I do think I have a lot of cross over between MS/migraine symptoms in that that I know something neurological is happening, but I am not sure what, until it fully asserts itself.

I have some weakness & spasms. For about 2 years I've had involuntary muscle spams in my right leg; during most of 2011 it would go off sometimes several times a minute. It was downright exhausting. I'd go out to dinner with my daughter & spend the whole big night apologising for kicking her under the table. I imagine full body seizures must be like running a marathon.
posted by goshling at 3:39 AM on April 22, 2012

I've often used "I feel like I just ran a marathon" when describing the after affects of a grand mal (Tonic-Clonic) seizure. Of course, that feeling isn't the worst after affect for me - it's the 3-6 weeks recovery time after a bad one.

Yeah, I do separate my Tonic-Clonic seizures by severity. They all seem severe to those around me, but the ones I consider bad often have to do with how bad my body was injured during. Two years ago, I beat my head into a pulp seizing in my kitchen on the saltillo tile floors while no one was home. I lay there for several hours before my roommate came home from work and found me. Took three months before I was right in the head.

First thing to do when witnessing a seizure - make sure the person's head is safe.
posted by _paegan_ at 6:15 AM on April 22, 2012

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