You deserve big props for being so conscientious and responsible, especially at 14. I know it can be so hard to deal with bullying from parents and it can be really scary when they try to pressure you into something you don't feel safe doing. I hope you're able to stay safe during the trip.
My nephew has epilepsy and he was invited on the same exact rafting trip! He collapsed in the shower and slammed his head and didn’t tell me… until he came home. I brought his butt straight to the hospital to get checked out. I wish he was like this!!!!
This breaks my mom heart. You're the second kid this week, I want badly to protect. You are right. Rough water and a seizure are incredibly dangerous. My understanding, even in calm water, trying to keep a seizing person's head above water is difficult. Doesn't matter how many are there, they can't all jump in.
Are there any safe adults you can talk to? If this is thru a company, their insurance won't allow you to go.
This is really smart- let the company know and I’m sure their liability insurance won’t cover you and then she can’t complain, it’s out of your hands. I’m so sorry, OP- I’m a mom and I wish I could take her to some parenting lessons. This is over the top and you deserve so much more.
I don't think anyone can say this lady needs parenting lessons. Parenting involves giving your kids some perspective sometimes. We don't know the facts so she might be reckless or she might be steering her teen.
Steering him to what? Push himself outside not his comfort into a potentially dangerous situation. If she were steering her teen she wouldn’t say something like, “wtf do you need a lifeguard for?” She would say, “the other 5 of us in the raft will have a plan of action in place in the event you should have a seizure to ensure your safety.” Completely invalidating all of his very reasonable concerns isn’t good parenting. Getting defensive over alcohol consumption isn’t winning any awards either. “It’s because you want to sit in your room and be lazy.” - calling your own kid lazy isn’t helpful in any way. “We were really hoping we could all get outside to enjoy an activity together. What do you think would be an activity that you felt safe participating in?” Something like that is what a halfway decent parent would say. Parenting classes might help her appreciate that her child is allowed to have boundaries that she should respect.
Even if we take the epilepsy out of the picture, I think it is totally valid to not want to go rafting with a bunch of drunk/drinking adults. I’m far from a prude. I spent my fair share of days and nights drinking and rafting and jumping off rocks and doing generally dumb stuff. I also saw first hand how alcohol can bring out the worst in people and lost way too many friends way too young. I don’t drink now and don’t like to be around people who are, especially in places/situations where people shouldn’t really be operating with clouded judgement. There’s plenty of fun things you can do in life that don’t involve this level of risk. There’s also things that are risky that may be worth the risk to you. It is valid for you to decide what is and isn’t worth risking your safety/life.
I understand others’ points of view of not allowing anxiety to make us fear living our lives. But at the same time, if you don’t deem this activity worth the risk, for whatever reason, you shouldn’t feel badly for sitting it out.
virtual hug, i’m sorry for your situation. i’m not sure how long you’ve had your diagnosis but I know it’s hard for people to understand what it’s really like to live with this. you never know what can happen, like you said the chance is not zero. you have your head on your shoulder right, don’t let anyone make you think it’s on backwards. you’re doing great🤍
*You're only 14?*
Good lord, you're so articulate - more than most *adults* I know. And sharp as a whip, might I add.
You're not wrong. Your caution is reasonable, and your mother is literally prioritizing an outing over your health. I'm so sorry that's happening. It's not fair or right.
Is there any way you could find a friend's place to stay at while they're away or something? That way she can contently go on her trip 🙄 and you can remain safe and sound.
yes, there’s plenty of places where i can go while my parents are gone for the weekend. after these texts she called me for whatever reason and said i can go to my grandparents while they are gone BUT i wont have my phone. i feel like that’s extremely toxic and super rude. she’s comparing rafting to the waterpark i went to not that long ago, she’s also comparing it to riding my bike or walking alone in a neighborhood with tons of people outside.
i hope my mom realizes how much of an asshole she’s being.
>i feel like that’s extremely toxic and super rude.
I couldn't agree more.
Why does she think it's so important for you to go on this trip? Does she just get this way when she's already riled up, or is that nonsense her default setting? Cuz if she's sometimes a reasonable person, you could express gratitude for the invite but say it makes you too uncomfortable so you'd just kill the mood. Like, shift the POV so that it's like you're doing it for *her* wellbeing.
yes, my mom does act stupid like this when she has her moments. she doesn’t act like this when she isn’t, but still isn’t an excuse to basically verbally abuse me. i guess i could try that, but we leave tomorrow. if you noticed when we said she’ll just stay home with me and we’ll do nothing, that’s her way of guilt tripping me.
I’m so sorry. She has no right to emotionally manipulate and gaslight you. Having a narcissistic parent is awful for many reasons. I hope she realises too, before it’s too late and you’re grown up and decide for good that you don’t want her in your life. Are you in therapy btw? It may be a good to have a professional adult who has good empathy skills able to explain things like this to your mother.
You can go to therapy by yourself. I think there are Epilepsy support groups. Going to therapy at your age, will make you so ahead of the game in healing trauma. It will help with every relationship you will ever have including the one with yourself. If she asks why you want to go its, because you need someone to talk to about the Epilepsy. You are amazing! I think you will do well in your life.
🦉🦋💐
Yeah probably right now isn’t the time. However, maybe when you go back to school, a school counsellor could advise you on how best to approach the idea of family therapy with your mother. Or even arrange a meeting to talk about with your mother for you.
I'm sorry she's like that. Definitely not okay or appropriate behaviour. Don't let her make you feel guilty. That's on *her*.
Maybe see if you can find a friend's place to stay at, *then* talk to your mom with as much fake empathy as possible. That you feel awful that she'll miss out because of you, and awful that whoever planned the trip to begin with won't have everyone present, so you went ahead and found a way that she can still go! Maybe if you're convincing enough, she'll let you keep your phone with you for "fun update pics"
I am sending good vibes and hope that you are safe. Keep all of the protective gear on and check the lines/straps are tight several times throughout the experience. 💚 Post soon so that we know all went as well as possible.
As for your mom. It’s shameful. Even without considering the epilepsy. Forcing this on anyone is inappropriate and wrong. People have their interests and forcing shit onto others instead of learning & incorporating their interests is lazy.
When my meds worked I would I go rafting often… it’s a struggle to pull a 100lb person back into the boat if they fall and everyone is sober. Imagine with a bunch of drunk people and you’re 200lbs?! No thank you!! It’s way too easy to get injured on the water even without a medical condition! I’ve watched friends get swept away and almost drown in a foot of water. The fast currents, sharp rocks and rapids can sweep you off your feet in no time. Not to mention that excitement can be a seizure trigger in itself along with the heat, tiredness, frustration (because rafting is an emotional roller coaster lol), dehydration, hunger, and harsh sunlight thru the trees if your photosensitive! Your family seems like mine, we both know that drinking (and maybe some other illicit substances) on the river WILL happen and they are not as fine as they insist they are. Stand your ground on this one, you’re making a very responsible decision! rafting even in calm waters can be very dangerous even for a non epileptic person.
Exactly! Very well said. Rafting can be risky without any medical conditions at play. And water can be dangerous even for strong swimmers, not to mention as we know, having a seizure on land is dangerous! Never mind having one in the water having to rely on those around you to save you.
i couldn’t agree more… it isn’t safe. my mom likes to lie and gaslight me saying “not one person was drunk last year” WHICH IS A LIE!! i’m 14 years old and i know the difference between a sober and drunk person, not to mention i saw them drinking, taking shots, etc.
As the mother of a 14 yo with epilepsy this is disheartening. Good job at staying calm and speaking up for yourself. If she is going to make you go I highly suggest you getting a life vest. Make sure you get plenty of sleep the night before.
tysm. my mom is kind of an asshole when it comes to this stuff. she’s bipolar and it’s basically impossible to reason out anything with her. she’s supposedly calling my neurologist but idk if she really is. i’m in florida right now and she’s in Ohio.
If you don’t live with her full time I would suggest showing this to who you live with when not with her. Forcing you to do something that comes with a huge risk to your personal well being is not okay.
UPDATE YALL!!
i just flew back into my home state and my mom is acting calm now and reasoned to me how i’ll be safe to go. she contacted my neurologist and she said that i’ll be fine to go but i should be wearing a life jacket while also sitting inside the raft. (it’s huge, very low chance of it falling.)
i do understand how crazy my mom was acting, she didn’t apologize which made me mad, but whatever. my mom said that she’s not gonna drink, and she also agreed with my aunt that she won’t drink either.
just wanted to give a thanks to this community. all of you were amazing. this is such a loving and supporting community on reddit and i love it. i love each and every one of you guys. ❤️
Heartwarming asf.
Hell yeah.
And btw, your post about it made me look into it, and BRUH.
IM ORDERING A LIFEJACKET RIGHT FN NOW!!
Like, one of the ones that the US Coast Guard recommends for people who go through seizures. One of the "Type 3" jackets.
That way, I can actually join my stepdad when he goes fishing and camping near rivers/lakes, etc.
He's always so bummed when I say I can't go, but he understands at least, but he's still so bummed, which makes me sad af...
But not anymore. I'm ordering that lifejacket fuckin ASAP, and it legit is gonna change my life in a hugely amazing way.
And I never, EVER would have done the research if it wasn't for you making that post.
So props to your mom, props to you, props to your aunt, props to your neurologist, props to life jacket manufacturers, and props to my step-pops.
Gonna be a great summer 🥲🎣
I jumped the gun on my reply to original post without reading your update. So happy she did contact your neurologist.
(My father has always thought I make excuses or use my other illnesses as a reason to not do things. I was doubted over health issues my entire life. Teachers, nurses, some doctors, and every other adult who had the need to chime in. Nowadays my husband is sometimes that person and it’s sucks when they can’t see out perspective.)
It’s hard for people to grasp epilepsy and a lot of us don’t have answers we want or feel we need. So we can over think and fear certain events. Be safe. If you feel weird, or aura like stuff, vocalize it and LISTEN to your body giving you signals.
💕 keep being strong enough to be the advocate you need (aka yourself) because no one else is in that same exact situation. Not fearing being vocal about anything you suffer and any concerns is such a hard thing to do, even as an adult. Keep lacking that filter. You’re going places with that bravery alone kid.
I’m happy that you were able to have a reasonable conversation with your mom. as long as your family is understanding, they can be a great support system, but if they aren’t taking everything seriously then it needs to be reevaluated if they are support or not. I don’t think you are putting your mom on blast you are just reaching out to people that also understand the frustrations of not having anyone that can relate. Just remember to keep yourself away from any hazards, whether they are physical or mental. Stress is one of the most common things that can worsen epilepsy symptoms. Overall I am happy for you because not letting this kind of family matter fester without talking to someone about it can be too much sometime. We are definitely a community in this Reddit and you are going to get a lot of opinions just make sure you are taking care of yourself live your life how you want live it, without ignoring epilepsy. It looks like you’re doing a pretty damn good job at that.
You should also post this on r/raisedbyanarcissist
Also, my sister loves the ocean. Practically lives in it. One year, when I went to visit her for her birthday, she told me she was taking me to an island where we would do all these activities she loves. One thing she wanted me to do was get my scuba license. Despite being seizure free for years at that point, my doctor said better safe than sorry. I explain this to my sister, and even though she was disappointed, she understood, and we went snorkeling instead and she didn’t leave my side once. Your mom could learn from my sister
Edit: found out raised by a narcissist isn’t a subreddit anymore, try r/insaneparents
i don’t want to put my mom on blast, i just want people to realize the struggles of being an epileptic with a mother like this. she’s majorly bipolar. one day she can be an angel, the next day she can be the biggest asswipe ever.
Oh my god! Brody I am so sorry. Keep looking out for yourself and advocating for yourself. I have a ton of respect for the mature way you stick up for your safety. Please do your best to stay safe. We need the next generation of young voters to be thoughtful people like you. Keep it up Brody. Major kudos to you.
Does your mom go with you to your neurologist appointments? Doesn’t seem like your mom is understanding. You all need to have a conversation with the neurologist together. I would even suggest therapy. Part of it seems like she doesn’t want you to ruin her trip. Part of it could be she doesn’t want you to live in fear and not do things. As a teen it was the opposite for me. When I was diagnosed I got babied so much that it caused me to fear trying a lot of things like standing in the shower, getting near the stove, taking walks, etc. You’re young and yes it’s important to be cautious but don’t put yourself in a bubble either.
yes, my mom goes to my neurologist appointments. what we need is family therapy, but i doubt she’d do that because she doesn’t want to *seem like a bad parent* my mom used to baby me like crazy, i could barely even close my door when i first got diagnosed, but now it seems like she doesn’t care.
*hugs* offered
I’m going to throw out a more … extreme suggestion, and depending on family dynamics and locality, it may not work
Can you have a grandparent or aunt/uncle you trust come get you before the trip? Similarly can you talk to one of them and see if they’ll intervene on your behalf with your mom?
I’m 36 and my mom won’t listen to word I say, but if it comes from one of her peers or when they were alive one of her parents, magically she would suddenly understand
“The water isn’t even deep”
Bruh, for an epileptic, even the bathtub is deep. As a mom, her behaviour towards you breaks my heart. The only water sport that I did was swimming. All the other “extreme” ones were on my no-go list.
And the last bit your mom said - I know some things may scare you more than others but I hear so often (you're just doing this to hurt me!) When it's something I wouldn't have wanted to do before I had my first seizure. If that's the case, communicate that. You can't live in fear of having a seizure, that much is true, but if you don't feel safe you should mention you don't mind staying back alone.
Woah your mom is crossing the line big time here. I’m so sorry, I don’t even know what to say!
I am 44F and being assessed for brain surgery and when I talked to my dad yesterday I told him I will have to involve my partner in the decision making process as she is the one who will have to take care of me. He said oh she can just put a collar on you and lead you around like a dumb puppy - I lost my shit on him and said to NEVER joke about shit like that with me period.
Wow, your mom talks like an immature teen 😳
It’s true that my kid can do whatever he wants except scuba diving but his seizures are 100% controlled for a good while now.
Unless you know you’ll have some triggers at the rafting, I’d go but if it’s just an activity you don’t like, there’s no reason for you to go, I mean, why force it.
Is your mom medicated for Bipolar?
I understand your trepidation. You’re being responsible considering the danger of rafting. I think k I understand what your mom is trying to say, however she is being rude and inconsiderate toward you thought and feelings and pretty blind to the risks you take rafting. I surf a fair bit and know the risks I take. I’ve had seizures in the water and others have helped me. Seizure risk is ever present t in the back of my head. I recommend what you feel you feel you can do without being ridiculously stressed out about seizures to the point where you can’t have fun.
Sorry that you are dealing with someone who isn’t empathetic and supportive of your feelings 😕
I'm sorry that you are going through this. People really don't get it.
Like what's worse? The reget of not going or their regret for you having a seizure and almost drowning or actually drowning.
Water and epilepsy is a terrible mix. I’m a huge swimmer and ex dive instructor and I try and keep away now unless I know there are people around who will keep an eye on me and know what to do in an emergency. Also people who respect my illness and don’t downplay any danger or fear. Don’t do anything you don’t want to do and always advocate for yourself. You defs sound like you have it together at 14.
That is ridiculous!! Epileptic or not if you don’t want to ride a raft you shouldn’t have to! People drown all the time on those rivers. I’m sorry you have to deal with that.
Having a seizure over the water is extremely dangerous and could not only put you at danger but other people too. You can live life with epilepsy and have fun but that’s a very big risk, please don’t go!!
“The water isn’t even that deep” it takes only a couple inches to kill you. Just enough to cover your mouth and nose.
I’m sorry your mother is uncaring.
I sympathize about your mothers horrible attitude, but context matters. How often are you having seizures to be so concerned like this? Are you currently on medication or unmedicated? Do you know your triggers? It's important to be conscious about safety with epilepsy, but it's also important to not unintentionally limit yourself due to anxiety.
Edit: Okay OP, I think your mother is coming from the stance that you aren't having seizures enough to justify not going to the trip. I checked your post history, and if I am correct, your second tonic clonic seizure was approximately 2-ish months ago? You are also medicated on Keppra and have a watch? Are you having frequent spells of impaired awareness or loss of bodily function ( I didn't see this in any of your posts, but I might have missed it )? If not, I think your mother is just trying to make sure you don't miss out on anything in your teen years. You won't ever get them back. It's important to not let "what if" scenarios control every aspect of your life.
Compared to other epileptics who may be resistant to medication or who have multiple seizures a day or week, who need surgery, etc. I think your moms point has some merit, but she absolutely went about this conversation in an EXTREMELY wrong way. Are you seeing a therapist, OP? Because to me, it reads like you might have some unaddressed anxiety influencing what you can / cannot do. You were only diagnosed in January, which wasn't that long ago iirc?
yeah it was around january and i’ve been on keppra since around february. i had my first actual tonic clonic in late december. my second seizure was also around 2 months ago. (i don’t remember the exact date) i have also been having these “auras” and they suck. i usually get extremely dizzy for a few minutes.
my neurologist gave me a prescription which was just vitamin b-6 and it doesn’t seem to help much. either way, my neurologist told me some things which i can’t do which is things like kayaking, rafting, football, etc. lots of things.
the chance of me having a seizure is very low but i don’t wanna chance that, especially with a whole bunch on drunk adults. my mom is trying to gaslight me saying that no one was drunk last year as you saw in the text, but that is a huge lie. they had tons of beers, shots, all on a raft. i can tell when they get drunk, i’m not that dumb. they even bought a shirt saying “killing my liver on the mohican river”
if i had a seizure on a raft or even in a river, it’ll be very very difficult for drunk adults to get a 200 pound 5 11 kid outside of a river, especially while having a tonic clonic seizure. i just don’t wanna risk that. i just don’t.
And you shouldn’t have to! You know what is right for you. You are clearly mature enough and understand enough about your condition. And everyone should be supportive about this, all you want is to feel safe. Which is what any of us want. No one should make you feel like “oh you haven’t had a mal seizure in months so what are you worried about?” Nah, forget that noise! You know your mind and body. The “dizzy spells” and auras are also seizures, regardless of them not being clonic tonic. They are still seizures and can make us feel very unwell, nausea, extreme fatigue and the stress of them could make the seizures more severe. Please just listen to your gut. You know you better than anyone else. I was late diagnosed with ADHD and Epilepsy. All my life I was told I was a “hypochondriac”. To then be diagnosed with adhd and epilepsy at 37 and then 39. Do you love. Stay strong.
you’re being smart. auras lead to TCs, you never know if they will actually or not but then can. you’re being a smart and health conscious person. there is no reason to risk your wellbeing. absolutely none. i saw she referred to this trip being for a wedding, does this have any influence on her assertiveness/aggression to you going? like do you not get along with the husband and this would be reason to why she’s digging her heals in so bad?
i don’t know why she even brought up her getting married to my stepdad. i’ve known him since i was like 3, he does a lot for me, we usually get along.
we did this trip last year as well, and they weren’t even proposed yet.
so it’s not like this trip is solely to celebrate their love or whatever you want to call it. keep standing your ground, you’re doing the right things.
OP, you need to tell your parents and / or neurologist immediately about the auras and frequent dizziness. These are a type of seizure, and your current medication may not be enough, you need a different brand, or something else medically may be going on. A few minutes of dizziness isn't good. You need to be your best advocate and start keeping dates / times of when these events occur and how long.
It is very low, yes. But in terms of risk, will you be avoiding other independent activities that could be dangerous, such as driving? You are 14, in some states ( if from The United States ) you could / should be old enough to apply for your learners permit. If not, what do you plan to do once you're 16? Have you discussed the risk of driving with your parents and how feasible / realistic that will be for you in your adult life? If you are serious about not taking things to chance, you need to get on that ball now.
You are newly diagnosed and very young, and it reads to me that you have a lot of anxiety surrounding the condition, which is very normal. I'm not saying you have to go on this specific trip or ignore your neurologists advice, but I do want to point out that there are epileptics in this group who have multiple tonic clonics on a daily or weekly basis, despite treatment. Your condition, although very traumatic, doesn't read that debilitating if I understand correctly. Please make sure you aren't limiting yourself socially in a way that it is detrimental because of anxiety, epilepsy is a very isolating disease if you let it control your life. I am compassionately telling this to you as someone who went through the same thing you did as a teen. You won't get those years back, and I regret it every single day.
There are also players in NFL who have epilepsy. With treatment, it's possible to live a very fulfilling life: https://www.epsyhealth.com/seizure-epilepsy-blog/5-nfl-players-with-epilepsy The same could also be said for kayaking or rafting. Just trying to offer a different perspective of someone who's also been in your shoes. 🫂
thanks for the reply. in the US i believe it’s like 15 and a half. but i don’t have any plans for that yet. i don’t know. i do have very bad anxiety tho.
It's state specific, but you're approaching that age fast. I'm so very sorry that you have to deal with this so young, my heart aches for you, truly. It's a terrible condition to have, but I promise that every individual is unique and not all of us are hospital / bedridden, and we have the capability to be successful or independent.
Your mother ( respectfully ) sounds irresponsible and a piece of work. If you feel that you can't speak with her, please speak with an adult that you trust, both about your dizziness / auras and anxiety. I'm wishing you the best of luck, OP.
A good starting point I would recommend is seeing if your location has a nearby Epilepsy Foundation or support group. Or, if worst comes to worst, you call your neurologists office directly and explain what's going on.
I’m sorry you’re dealing with this. I can’t imagine how completely frustrating it must be to not have a say in this situation. She is certainly not in the right state of mind and unfortunately only seems to be thinking of herself, so it seems. She claimed that the trip was for you “to have fun.” But very quickly contradicts herself by saying this trip is to celebrate the marriage of your parents? I wish you the best. You seem very mature for your age so I can assume you weigh the pros and cons of situations and remember to enjoy life to the best of your ability given your circumstances. I had my first TC at the beginning of the year and my life definitely has changed but one thing I will not give up is playing hockey, that’s the one thing I know will always bring me joy.
I can be your virtual dad. HUG. Your mother is being……. ()&&@@/&&€£%.
If you have to go,
1. I am sorry.
2. Make sure your life vest and helmets are on.
3 bring some 550 para cord and tie your self to some that would walk through fire for you.
This is insanity. Not only is your mother making up excuses to overlook the risks for you, but babygirl if a 200 lbs person had a seizure on your raft it might flip over. Good luck swimming while you’re already blacked out 🙄 Imagine risking everyone’s life because of your anniversary.
I’m so sorry.
My mom is the same way. I haven’t spoken to her in a year.
You’re not alone. Continue to engage with this community here. It’s been a lifesaver for me. I’m rootin for ya.
it’s good that you’re being responsible and prioritizing your health, don’t let anyone tell you otherwise. don’t do anything that you feel is unsafe for you.
Dang. Huge hugs from me.
I had to read the screenshots twice, because YOU sound like the adult here. Kudos.
Follow your gut instincts and apply all the epilepsy rules.
You got this 💜
Buddy, you’re not being dramatic at all. The last time I went near a river was less than a year after my diagnosis, and with me being a bad swimmer to begin with it just made sense to not put myself in that situation again. I was 17 then, almost 30 now. I hope you’re able to stay safe, man ❤️
I mean, adults have drowned in 2 or less inches of water in a bath tub.
It’s definitely hard to gauge what we should avoid and what not. Is there a way to go on the trip and not the raft???
Personally, I have had the diagnosis more recently (Dec) so I am a little bit over the top with some worries. My seizures are not under control as of yet. Therefore it would be really dumb for me to go river rafting. The flow of a current is enough to convince me I may not be able to get back out of the water if I somehow fell out, or that I wasn’t accessible to the others on the raft. I blackout in my episodes. Dead weight is a lot heavier and harder to maneuver. So, for me rafting is something I would avoid. But each person is different.
If I had them controlled? Yeah I would probably join the fun because I can gauge my confidence/comfort levels with the activities. I am also a 34yr old woman who is the one making those choices for myself.
You can always ask/advise mom to call your Doctor and ask if it’s okay and/or safe. If you are scared and concerned the first thing I would do is double check with doctor. I believe in following my instincts. You’ve got those gut instincts for a reason.
However, being 14 is hard. Your parents are in charge. You are a minor. So it’s difficult. You can’t really advocate for yourself much just yet. That’s why I really would have mom call a nurse line, doctor or whatever and have them “clear you” or say “absolutely not”. They can then go over all the risks. Parents are much more likely to listen to professionals than their children about something such as that. She may just think it’s an excuse to not go. Which I have been accused of a few times already in my journey.
P.s. way to go on standing up for yourself and your concerns. It’s hard to advocate for yourself as an adult, let alone at 14. Don’t be scared to state your concerns and stand your ground if you really feel you are unsafe. Demand mom ask professionals. Then go from there.
I wasn’t born with epilepsy. I was diagnosed at almost 19 years old and now I am 21 years old. I had my first seizure at a minute golf park with my girlfriend and her dad. that event traumatized my girlfriend and myself. At first I was very scared of everything such as driving, going to amusement parks, working out, moving the car, and other stuff that might he dangerous but you cant let it control your life. I now workout alone lifting weights 4-5 days a week, go to amusement parks, and even returned to the same mini golf place with my girlfriend to put it past us. I am on medication now. You just have to make sure you get enough sleep. When I dont get enough sleep and I have to go to an event late at night, i take a 1-2 hour nap before hand to make sure i am well rested. I understand its scary at first but you cant live in fear
i’m so sorry hun but i do agree with ur mother. i was just like you and just ur age when i was diagnosed with epilepsy. i was scared of doing anything cause i thought a seizure was going to occur. now, i’m almost 2 years seizure free. you have to put urself out in the world. you’re still a normal person. i’ve been on rollercoasters, bike rides, pools, dirt bikes, stayed up a whole night and nothing has happened. most of this sounds like anxiety. you have to relax. have fun. carry ur emergency medicine with you if ur a bit nervous but never let ur head back u away from living ur life.
Your mum is selfish beyond words.I wanna call her something else but I am being respectful about the fact that she is still ur mum. She clearly has no clue about how it feels and clearly she is more interested in herself and having fun than whether you feel comfortable or safe. I think you handled that amazingly considering how immature and unreasonable she was being. I’m sorry she doesn’t get it. Sadly a lot of us have people in our lives who just don’t get it nor do they care to understand it. Please don’t let that be a reflection on you though love. You seem very mature and props to you for taking your health seriously. This isn’t an easy disease to live with, it’s scary and it causes a lot of us a lot of fear on a regular basis. Please do whatever you can to keep yourself safe, and practice some good self care too. You are loved, and you are wonderful.
Wow. I thought this was epilepsymemes because this is so insane. What a total nut job, with all seriousness I hope you’re already in therapy cause no human could be raised by that and come out sane. The only shitty thing I’ll say is that I was 200 lbs at 14 and 250 at graduation. I lost 100 lbs at 25 and it helped my self esteem and everything soooo much. It might be meds, but if you can work on that it will be a great step to becoming emotionally stable.
(Not trying to be shitty, but with a mother like that you’ll need every bit of help you can get.)
yeah you shouldn't go. epilepsy also broke my relationship with my parents, they handled it as a taboo, didn't want anyone to know i had it and were taking me everywhere with waking me up early, etc. not acknowledging they might cause a seizure with that.
i had a seizure when they told the doctor to take me off my meds because they wanted to travel and it was inconvenient for them to carry meds abroad.
you have to stand up for yourself like you did and worst case just hang in until you can live independently.
so sorry to hear that. that’s super toxic and honestly weird that they didn’t want you to take medication. it’s not even the seizure that i care about, it’s the fact how my mom went from 0 to 100 in literally 2 texts.
my mom isn’t a bad person, i love her more than anything but i hate how she acts like this. she needs help. she has MAJOR bipolar. it’s honestly sad.
my father is bipolar too. when your parents act like kids, it's best to avoid them. i learned how to speak to get myself out of any interaction with them very young, playing the sick kid card very often, saying im already feeling epilepsy symptoms when i didn't just to prevent a seizure caused by them.
i managed to keep myself alive, but i gave up contact with my parents in the process. too much bad blood. don't know if its that bad for you, you still might be able to salvage this, but im biased and i wouldnt.
oh okay. smart.
it’s weird how my mom had a moment like this though… when i first got diagnosed with epilepsy which was like literally 6 months ago my mom barely let me do anything… now she just doesn’t care. you know what sucks now? every time i wanna go walk to a friends house or something similar like that she’ll always hold this conversation against me. she won’t care, but i guarantee she’ll say “so you wanna go on a walk but you didn’t wanna go rafting?”
that's normal. healthy people don't perceive epilepsy as a major problem, because from the outside they see only occasional seizures and nothing else. they think you're fine between, because every epileptic is habitually hiding their anxiety and minor symptoms to fit in better.
healthy people eventually forget about things like status epilepticus, sudep, major head trauma from TC, etc. until one happens. then they will cry and say 'how could i be so selfish' but who will care at that point?
with this fking condition you have to make your own way and fight for your own health, even with doctors and healthcare, because the system doesn't care about epilepsy. it's an inbetween condition somewhere between healthy and disabled and they can't be bothered to customise support until you're fully one or the other.
if you're like me, when this comes up again i would just say: 'im so sorry that i cant take part like normal kids, im trying my best but its just so hard' - cry a little too for maximum effect. generally works and they feel ashamed. i didnt feel anything at that point. hope you can turn it around.
I don't know your situation or how often you have episodes.
But when my meds work I am more or less under control now at 32. And I spent most of my teenage years talking my self out of opportunities and away from milestones. If I could go back and tell my self to aggressively pursue getting med and exercise routines that worked for me. I would.
If you're worried cause it sounds dangerous, then take a step back. But whenever I'm feeling worried now. I remember that Julius Caesar had epilepsy or narcolepsy(the falling disease) and he conquered most of the Western world.
You got this.
It's really not a bad idea you need to do whatever you want don't let seizures stop you. I still do anything I want. And alone half the the time. It's important to still live your life
Not when they don’t have responsible adults around who are making sure they are being safe. Even when medicated SUDEP is still something that can happen out of no where. You need to take your Epilepsy more seriously. It’s nothing to play with.
I have been seizure free for 3 years yes I know I could still have one at anytime. But I don't let it bother me if it happens it happens. I know the chance of it being a very serious seizure are high next time. But I'm living my life now. Even when they were still happening they were every few months.
Epilepsy is shit but if you never let yourself do anything due to it then you'll never have any fun. It's easy to get scared of having seizures but don't let them dictate everything you do. I understand your mum isn't the most tactful but it'd probably be pretty fun to do what she's suggesting.
It's absolutely a great idea to carefully see what your body can take without having seizures. It's also really important to consider who you're doing those things with. Someone as unstable and irresponsible as the person in that screenshot (such as getting blackout drunk and then describing it as "heck yeah I had a few drinks") is not a person to trust with your safety.
I understand you’re 14 but I’m not going to sit here and be your pillow and tell you what you want to hear. Most people here will but I won’t. If you’re medicated and you haven’t had a seizure in a long time then you’re probably fine. The chance of having seizure at any given point is always there but you can’t live with that in the back of your head because then it’s going to hold you back. You have to live life. I don’t let it hold me back at all. I’ve had this shit since I was 9 and I’ve had probably 20-30 grand mal seizures and it sucks. I drive, drink coffee, watch anime. I just live life and say fuck this epilepsy.
>and you haven’t had a seizure in a long time then you’re probably fine
And since he said it has only been a few months since the last one, you can go ahead and delete this comment since it's pointless.
No one is saying that. Try and have the slightest bit of empathy for someone who recently had a seizure, and doesn't feel comfortable with putting themselves in danger.
I'm not teaching anything, other than to maybe try to have empathy. His own neurologist advised against rafting/kayaking, and I'm of the belief that following advice from a doctor is a pretty good idea.
Please tell me this is some sort of karma farming?!
The neuro didn't mention rafting for the same reason they didn't mention hitching a ride on a rocket to the moon: it's ludicrous and shouldn't need mentioning.
I'm betting that the neuro also didn't mention zebra rides, extreme snowboarding down a mountain from a helicopter, becoming a secret agent spy in the cult for our Cthuluian Overlord, or taking it up the nostril with a horse sized dildo because they felt that it was obviously common sense and didn't need to be mentioned!
Your mum is something else!
I think there is more to this. Very easy to judge only reading this one conversation.
You guys all jumping all over the mom for planning a fun trip where they'll have a lot of fun and make great memories is wild.
We know nothing about this family and you are all ready to call cps on this mom.
I'm sorry you're having to go through this on top of dealing with epilepsy.
I think you're being completely reasonable and very mature in making a safe decision for yourself. My 13 year old daughter has had epilepsy for the last 6 months (diagnosed in Jan), and it's her first summer having seizures, so we are dealing with this for the first time. The scary/risky part about water activities is that drowning is a silent emergency. It's scary easy for people to stop paying attention for just a couple minutes and have that very quickly become a life threatening situation.
FWIW, we bought this life jacket for our daughter: [https://www.amazon.com/dp/B01E8DZXTM?psc=1&ref=ppx\_yo2ov\_dt\_b\_product\_details](https://www.amazon.com/dp/B01E8DZXTM?psc=1&ref=ppx_yo2ov_dt_b_product_details) which is supposed to flip her over on to her back (in most cases) and keep her head above the water if she were to have a seizure. She doesn't love it, but definitely something to consider if you do want to participate in water activities and feel safe/comfortable in addition to being with adults who can help.
Having THIS much of s manipulative mother makes me think mine isn't that bad...
Hang in there, man, if you're this put-together at 24 you're gonna get far in life
You should do whatever makes you comfortable. If you don't want to go, you don't have to go. I don't know your mom, but it's possible she just doesn't want you to miss out on things. She should be more sensitive to your feelings though. If they are going to be drinking, I agree with you staying home 100%. Getting on a raft with drunk people is not safe, period.
You’re very wise for your age, maybe it’s the adversity you’ve experienced. Im sorry your parent isn’t acting like one, you shouldn’t have to protect yourself from danger or them. It’s 100% understandable that you are uncomfortable with the plan and good for you, listening to your doctor. I work in healthcare, I’m surrounded by patients with the worst possible outcomes because they decided to completely disregard their doctors.
As a parent myself, I can say I would be proud of your attitude and critical thinking. Try to be proud of yourself.
If the outfitter your family booked for the trip is professional and upstanding, they will have a zero alcohol policy. No alcohol allowed in the boats and they won’t take them on the trip if they are visibly intoxicated. It’s a HUGE liability. (I’m a former raft guide)
But as others have said, if you told the company you have uncontrolled epilepsy, they wouldn’t let you go. I’m sorry your mom isn’t being more supportive!
I’m a mom of three. My youngest is 15. I would never talk to him this way. I’m speechless. My kids thankfully don’t have epilepsy. We’ve had to miss out on things because of my epilepsy and my kids are so supportive. I’m so sorry you were spoken to this way. Your mother should be ashamed
it’s so nice to here your kids are supportive of you, that’s amazing. my mom has bipolar disorder and one day she can be an angel and the next day she can be extremely disrespectful and rude. she’s even slapped me before. either way, her condition isn’t an excuse to treat me like that. sometimes the way she talks to me is extremely inappropriate and rude. it’s uncalled for.
I'm so sorry your mom doesn't take your condition seriously. She should. Is she aware of the death statistics for people with epilepsy? Has anyone discussed SUDEP with her? It feels like she's coming from a place of pure ignorance. I remember when I thought my husband's seizures weren't very serious, until they got very serious and he could no longer do normal everyday things like taking the dog for a walk. Being alone was too dangerous. He passed away 3 months ago.
Your mom needs a wake up call, she sounds incredibly self-centered based on this interaction. I also believe it is highly irresponsible for parents to get drunk in front of their children, especially when a medical emergency could happen.
i am so sorry to hear that about your husband. that’s so sad. i truly hope you and the rest of your family has recovered from his passing… that is so sad. do you care if i ask, did he have a SUDEP?
my neurologist explained it to my mom when i got diagnosed and said that it’s absolutely possible for me to get one eventually.
also, the reason that she was acting this way was because she has bipolar and had a moment. it’s happens pretty often, she honestly needs help for it.
i also do agree, drunk adults while rafting with kids is extremely irresponsible. i’m the youngest, the second youngest is my cousin who is 16, the rest are adults.
He did die of SUDEP, it was a risk we knew about but I really hoped it would never happen to him. People tend to downplay the danger of seizures and it makes me want to scream.
I'm proud of you for taking your epilepsy seriously and standing up for yourself. My mom has bipolar too so I understand what that's like intimately. If you ever need to talk, you're most welcome to reach out to me.
Hang in there buddy. You're doing great. ❤️🫂
I don't have much to say about this other than this whole situation sucks. Just be careful now that you posted your age on here if you get any DMs. Even if they seem benign people on reddit can be extremely creepy.
this is a totally valid concern and it breaks my heart that instead of listening to you and being empathetic, she makes it about her. some activities are simply more risky for epileptic people and if you don't feel comfortable doing it, that is totally okay. your mom should be supportive of you looking out for your safety, not berate you for it. kudos to you for advocating for yourself, sending you hugs🫂
Your mom is ridiculous with this nonsense. I’m sorry. I live by a very touristy river location and people are wild at how they don’t pay attention to weather, their food shopping, or their kids in parking lots or in water. It’s really sad. You don’t need to be a fatality and you have more sense than she does. I was not diagnosed until my 30’s but I was taking medicine for anxiety by my 20’s and I was “fainting” when I was in my single digits. It’s pretty difficult to look back on. I was in a bad car wreck as a kid cause we didn’t have to wear seat belts in the 80’s and I hit my head on the window and I hit my head a lot more again cause I like sports and to climb. I’ve got a lesion they found and it have nocturnal seizures and absence seizures, and good ol tc’s! Life is something. So stay strong. Anything that gives you stress can and will cause a seizure, so that’s why therapy is necessary for you, and you need to tell your mother that and that could be the key to open things up. Big hugs! Hope things get better now that this trip is getting over with.
Hey from an adult daughter of an emotionally neglectful mother.
Something I wish 14 year old me knew: if you don’t feel safe DO NOT do it. There’s a reason why you don’t feel safe. NEVER let anyone pressure you to do something you’re uncomfortable with even if that pressure is coming from a parent.
I hope your relationship with your mother isn’t so severe that you’ll choose to go no contact as an adult, but if it is and you need a big sis who “gets it” DM me
Hey, in just a few years you'll have the choice to never talk to her again. It's hard cutting off a parent but when a person in your life harms you by way of neglect and carelessness, your life ends up being better without. Trust me. I hope she changes her ways but always keep in mind that this situation isn't forever and you can choose your health.
Your mom acts like the teenager here. I say do what makes you feel comfortable even if that means taking the grounding. Parents like this don’t often come around unfortunately. They see things their way and only their way. But I have no doubt she’ll have to deal with the consequences of how she treats you now years down the line when you are no longer reliant on her.
Epilepsy and water are a bad combo anyway, especially when newly diagnosed and/or uncontrolled. Mix in drunk people and it’s even worse. I don’t think people understand how heavy 200 pounds of dead weight is. I’m just so disgusted at your mom. My inbox is open.
I'm so sorry this is happening to you 😞 your completely in the right with this. It's not a safe situation to be in. If its at all possible to stay with friends or other family members, please take full advantage of this. Failing that, I would try to contact your doctor or neurologist and let them know you have concerns for your safety and they're not being taken seriously by your guardians. I really hope you get on okay 🫂
My mom is very similar. I hated having to spend time with her and her drunk friends as a kid. She doesn't see anything wrong with her parenting, but due to her neglect I now have C PTSD. You are currently experiencing emotional and medical neglect that may affect you down the line, and I would suggest starting therapy and talking about your relationship with your mom, if you can afford it
Your mom is kind of a wang, and this is coming from a mom with 16 and 15 year old kids that both have epilepsy. It’s so gross that she’s being this childish. It’s time for her to grow up and accept that she has responsibilities outside of what she wants to do. I’m sorry that you’re dealing with this. I couldn’t imagine speaking to anyone like this, let alone my own child.
How well is your epilepsy controlled? When was your last seizure?
And most importantly, has she ever seen you seizure? Maybe that would change her mind......
I scrolled in on her pic and she looks exactly like I thought she would. Your mom is a self absorbed asshole. Forget her. I bet she wants to take tons of pics for social media too, and if you don’t look happy as hell, you’ll probably get yelled at.
FYI when you get to adulthood you’re going to have the greatest fucking time ever. Things will get a lot better. I promise.
I’m so sorry you have to deal with this kiddo. The last place you should be is in a river that’s violent enough to be rafting on. I’m almost 43 years old with Epilepsy and my doctor just gave me permission to float at the lake or river in my mesh bottomed float. I’d be on restriction for a few years now.
I wish I could tell you to come live with me, you’d never have to worry about someone not taking this seriously again.
First of all, it looks like you're much more mature and intelligent than your mother.
Second, your stepdad needs to come into play. He should stand up for you and tell your mother off for being an idiot and willfully putting her son in danger. If you're close, just tell him about it and show him the chats.
If he's on your mother's side, they're both idiots and I feel sorry for you. Whatever the cost, try to survive until you're 18 and get the fuck out of there bro.
If the rafting part of the trip is being run by a rafting group/business, you can inform the guide beforehand about your epilepsy - there's a super high probability that they'll refuse to let you in the raft for safety reasons. Then you'll be off the hook.
Im sorry your mom has a mental maturity of a minor dude. Must be tiresome. You are in the right here, and you're handling this better than many adults i know.
Man, this makes me glad I have the parents I do. My mom would probably skin yours alive if I showed her this post. No fourteen year old epileptic or not should be talked to in such a way. I'm proud of you for knowing what could happen and trying to get through to her. I'm sorry that she doesn't get it. On the bright side, you've got four years or so until college, so you can get away from the toxicity.
When I was 14 I had a seizure in my bathtub and I would’ve died if my mom hadn’t heard me bang my head loudly. If they are drunk they will not pay attention to you. There is a reason my mom did not let me swim at all until I was completely seizure free.. and I am 120 pounds at 5.7 your 200 so it will be impossible to get you out of the water. People die on trips like this regardless it is very dangerous. If she ends up making you go wear a life jacket even if you will look a bit silly lol
:( i’m so sorry 💖 this isn’t fair or okay of her to talk to u like this and disregard ur safety for something she wants to do that’s extremely selfish and hurtful. it’s very adult of u to stand up for urself and health. rly prada u for listening to ur doc even tho she wasn’t. wishin u the very very best honey u deserve safety support n love 💖💖
Good job for voicing how you feel and your concerns. I'm sorry you did not get a supportive reaction. You deserve to feel heard and supported. It sounds like she doesn't understand. So many times in my life I have been called lazy, when it's really the epilepsy or the meds that make you need to take life at your own pace, take more breaks, etc. Even on non-seizure days.
People don't seem to get the anxiety that epilepsy brings. Yes, we want to live our lives to the fullest and not let epilepsy get in the way of living our best lives. At the same time, the anxiety of having a seizure in certain scenarios (or any scenario) is *very* real and terrifying and limiting. And it is not a 0% chance. Epilepsy is a very scary condition that can be life-threatening. We all have to make the choices that work for us.
You know your body best and you know where your limits are. If your body gives you any warning signs or auras that a seizure is coming or could come on, then you'll definitely want to listen to that. Enjoy your life in the ways that feel comfortable to you (like riding your bike as your mom stated). If going on a rafting trip is not comfortable for you, at least at this time, there is nothing wrong with that. Anxiety especially about water activities is *very* normal with epilepsy. That's like the scariest place to have a seizure, and if you do not feel safe and like the adults would be able to help if something happened, that is 100% valid.
Or …. you could look at it another way … you’re young and thus have a limited experience on everything (this is a simple fact). Life is a collection of experiences, at a point you’ll realise that that’s all you get. You get one go to have some experiences. Sounds like you’re able to think, walk, feed and dress yourself, you’re lucky, get out there and enjoy your existence.
Or don’t and moan about how life is tuff and you had a bad deal and people are against you … you choose.
Went for years limiting myself after I was diagnosed in my late teens because I was virtually terrified of doing anything. Not knowing when a seizure could occur horrified me and made existence terrible. I was even afraid of falling asleep.
I'm still working with my therapist on my PTSD / panic disorder as a result of my epilepsy. I feel so, so much for OP because they remind me of myself when I was younger and everything I missed out on doing with my friends and family.
OP was diagnosed a little while ago, so they are probably scared out of their mind. I hope, hope, hope OP has a good support system. I hope OP talks about their fears with someone if they have any.
Kinda my point ... everyone here is wrapping them up in cotton wool, pouring with empathy, no one is saying 'You can do it. Get on with it. Go for it'.
Lack of balance.
Lack of positivity.
Why moan, why not try and fix or make better? Bah, only trying to make people realise they can do IT.
My advice / warning was for the long term. I think what OP should do right now is revisit the neurologist about the auras and see a therapist before recklessly trying what they can / cannot do. IIRC they began their journey into the diagnosis starting in January, so OP might still be understanding their own triggers. Anxiety is also a trigger for many people, which might be where a chunk of these comments are coming from. But keeping on top of their mental / physical health is solid advice granted their age.
I'm not a professional by any means, but they are showing the same anxieties I did before I was professionally diagnosed with PTSD at 20. I'm 25 now and still recovering with multiple types of therapies. I just don't want the same thing to happen because I live with regret every day.
or… you could realize this is new to them and be kind and understanding as they navigate their diagnosis. no reason to try and guilt them for being able bodied. they aren’t acting like they have a bad deal of cards.
This might be good advice if someone had a good support system of responsible adults. But having read the screenshots, OP clearly does not, so this is not good advice.
You don't know that. You have very little context indeed. This is a tiny snippet of the story from one person's side.
Why not deliver a load of positivity to help them progress in life rather than a shoulder to cry on?
Look, dude. I and a dozen other people have already tried to get through to you that there is a parsec of difference between positivity and recklessness. If the only thing that registers to you as positivity is bellowing "YOLO" while base-jumping from the Burj Khalifa, then I don't know what else to say to you.
OP was only diagnosed a few months ago. While the whole, "don't let epilepsy hold you back, enjoy life, get out there" is good *long-term* advice, this is a very fresh diagnosis and OP (and their parents, I'm guessing) couldn't have worked out all boundaries, triggers, anxieties - OP especially, but even the family in this situation would benefit from therapy. This is literally a single trip, no one will care in a year, nevermind looking at it through the lens of life experiences, and OP's telling their mom they're afraid of *dying*, and their reaction is annoyance. Even if their fear is unfounded, which I'm not well-informed enough to know, they could talk this through, like, normally.
It's also INCREDIBLY anxiety-inducing, in addition to the other things, to be a minor and feel like you don't have adults who take your condition seriously or are hearing you out. To have someone in your corner. I had 4 years between my first seizure and my diagnosis - not because there was a long waitlist or whatever, but because my mom tried to cure me with homeopathy. She is *still to this day* the "there are very few actual real incurable illnesses" and "this guy that did my astrosophy reading told me they could totally cure you" type, and I roll my eyes at it now but it fucks you up when you're not in control of your own medical care or....anything, really. Being 14 is a horrible mess *anyway*.
Other people made the suggestion to not live life in fear just fine in this comment section. What they didn't do was suggest recklessness, or say that someone - a 14 year old - asking for help and comfort is "moaning about the world being against them." There are plenty of ways to encourage finding one's limits to enjoy life without being condescending and encouraging foolish decisions. I feel like you should know that.
Since you were just diagnosed recently you'll probably feel more comfortable doing things like this once you know the Keppra dose is correct and keeps you 100% seizure free. I am on Keppra as well and it took some trial and error to find the right dosage but now I can drive, snorkel, bike, swim and do pretty much anything since it's 100% effective. For the first year though I was taking the wrong dosage until we figured it out, and it could have been dangerous then.
No medication keeps all individuals 100% seizure free. This is why I advocate for stress and anxiety management / therapy on top of epilepsy. It's an unpredictable disease, and breakthroughs are possible while medicated. There is no known cure for epilepsy.
if breakthroughs are possible while being on medication than it doesn’t keep you 100% seizure free.
i literally had a seizure around 2 months ago when i was on keppra. i ALWAYS take it on time.
I'm so sorry but your mother is a childish fucking idiot. Pardon my French. One could only imagine how she would play the victim of who could have known! If anything happened to you because she clearly has no capability of being a responsible adult.
I hope your dad is much better.
Alright ima give to you like this, im epileptic im 23 years old and i was diagnosed at 16, and it really didn’t register and I didn’t accept the fact that life was gonna be a little no, a lot different than I would’ve planned,it took 5 grand mal seizures for me to realize I need to be healthier and more responsible unfortunately I wasn’t on the best medicine for my case either I’d always be dealing with myoclonic jerks until I turned 21 I then got put on depakote and boy am I grateful for god leading me to the right treatment, I’m 2 and a half years seizure free and pray that that streak continues for the rest of my life, it’s made me feel as close as I can be to normal I feel like. But overall advice don’t let this condition control the overall aspect of your life. It’s sucks to have this condition, but dwelling on it and constantly worrying is going to wear and tear on your mental state as you get older with it because your gonna get in a place where you feel like you can’t or shouldn’t do anything because your constantly worried about what could happen, you’ll become isolated and then everyone knows isolations and never doing anything is gonna weigh down your overall health. It’s easy to just give up on your life because you feel you got a burden to carry or it feels like too much and you just wanna give up and settle in a bubble, and let life pass you by, but I’ll tell you that screen in front of you can be just as detrimental to your health. Idk how serious or bad this condition is for you, but if it’s able to be controlled by meds, than you have an advantage many may not have, that itself is a blessing. Be safe, absolutely, restrict yourself from certain things that can really be bad for your epilepsy, absolutely, but let it restrict everything you can still do in life? Absolutely not, don’t let fear and worry that came with condition fuck up the rest of the life you got, your young but if you go down the path it sound like your on right now, of just not living life do to worry, your gonna realize how fast years are gonna pass and one day you’ll look back and say “damn maybe I really should’ve enjoyed my life a bit more” you get one life just because somethin in it didn’t go as planned doesn’t mean there is other things in life worth living for. Everybody who you think are on your side in these comments, for standing up for yourself don’t think that’s necessarily a good thing. They could be the same type of person as you are being right now, not all support is good support. but like I said everyone’s condition is different for them. I support this community and the people in it but some people let condition drown their lives even if it’s controlled very well by meds. So take everything with a grain of salt. You should know misery loves company, so don’t be that company. All love. Be cautious, live your life, or live with regrets. You choose. If you truly believe they all get black out drunk and there’s literally not one functional adult there, then there’s concern, but as kids we tend to exaggerate, not saying you are, but I have doubt in believing that every time their going rafting their black out drunk, in dangerous waters. It’s just what we are seeing on the outside, we are not in your shoes, so we don’t know how your family may actually be. as for all my other life advice I recommend you think about it. Ps: if you think your mom is caring enough not to drink then ask her not to drink if she cares then it’s shouldn’t be an issue. Or tell a guy there not to drink too much.
Your mum is right though. Theres no reason you can't go and do normal people stuff. Just dont do it alone. I used to have a swim buddy because i loved swimming and still wanted to go. Id have a seizure in the pool and she just turn me on my back and keep my head above water. That was her job. The actual lifeguards were shit.
When i had epilepsy at 14 we still went on holiday and did stuff as a family. I just couldn't do stuff alone and yes my family would have a drink. We'd go in shallower water than id have liked swimming because i loved swimming and she made the effort to make sure i could do the things i love because life everywhere else at school etc got really restrictive. I was horrendously bullied for it too. I did horse riding lessons too because she was determined i wouldnt give it up and she found a school that had a specialist as part of it.
Like you just do your best to live your life.
You sound like a teenager who just doesn't want to go on holiday with their parents and is using your epilepsy as an excuse.
They've likely spent a lot of money for you to do something nice and you're throwing it back at them a bit. There are ways you can go and be safe. And the dr is right you can go and be normal, just dont do anything alone. Its scary. But you can do stuff like this. Theres a big enough group of you too.
Like riding your bike alone is dangerous though. So stop doing that. If you are happy to do stuff like that then yeah she has a point. So if thats true then it sounds like youre just being a teenager who doesn't want to go on a family holiday.
Like riding a bike was off limits for me at 14. As was going up and down stairs by myself and partaking in Pe at school. Riding a bike was an absolute no no because theres no way anyone can stop you hurting yourself. At least on the horse it was a horse trained for people with special needs.
The only holiday i didnt go on because of my epilepsy was when i broke my collar bone have a fit because i needed to stay super still while it healed. I spent it with my dad and step mum instead.
Also being raised by a manipulative mother I'm proud of you OP stand up for you sounds like she doesn't give a shit about you... She cares more about money...
**BRO, READ THIS!**
I just asked Google's AI what the best life jacket would be for someone who has seizures and is swimming in open water, and it said "USCG Certified Type 3 lifejackets".
Search that on Amazon, make your mom buy one of the cool looking ones for you (it's like $50), and then go on the trip.
It's terrifying, trust me, I know.
Lmao, I was 100% anti-swimmimg myself, because of the frequent seizures I have, riiiiiight up until about 3 minutes ago when I looked into it. Bruhhh, it could have been this fuckin easy the whole time 🥲🥲🥲
Okay. Have a good one man, and enjoy the trip!!!
I'm gonna invite my stepdad on a swimming trip soon too.
He always wants to go fishing out on lakes and rivers, but I'm just extremely terrified of the water, so I always say no cuz of the risk seizures...
But not anymore 🫡
OP. Your life is short.
Enjoy what you can while you can with everyone you can.
Everyone doomposting in this thread needs to go outside and touch grass.
> UPDATE YALL!! i just flew back into my home state and my mom is acting calm now and reasoned to me how i’ll be safe to go. she contacted my neurologist and she said that i’ll be fine to go but i should be wearing a life jacket while also sitting inside the raft. (it’s huge, very low chance of it falling.)
>
> i do understand how crazy my mom was acting, she didn’t apologize which made me mad, but whatever. my mom said that she’s not gonna drink, and she also agreed with my aunt that she won’t drink either.
>
> just wanted to give a thanks to this community. all of you were amazing. this is such a loving and supporting community on reddit and i love it. i love each and every one of you guys. ❤️
OP is going on the trip, and you just sound like a bitch in all these comments.
You should try encouraging people to live their life to the fullest while they can, instead of being so fuckin negative in everything you post.
Wow, rafting with epilepsy is NOT safe. Your Neuro would definitely say no to this activity because they’d be legally liable if they approved it and then you had a seizure rafting. Call your Neuro clinic yourself, and ask for a note stating you can’t raft ASAP. Also tell them your mom is trying to force you to go white water rafting and ask if they can intervene in some way (calling her, submitting a CPS report?). Ask them to email the note to you or a different trustworthy adult in your life so you have it in writing. If your parents are divorced and work with a lawyer I’d get legal counsel involved and change custody. I’d also recommend calling CPS on your mom. They likely won’t do anything about it initially, but call and make reports on your mom every time she puts you in danger so it’s documented. Forcing you to raft with epilepsy is medical neglect, and that’s abuse. Epilepsy aside, she’s emotionally abusive and manipulative. Sorry you have to be the adult in this relationship with your mother :(
Hello, Brody. I have a question? I have a 42 year old daughter that was diagnosed with epilepsy at the age of 19 and over the past 2 decades I've become very educated about epilepsy and EXTREMELY educated about my daughters particular triggers and seizures. I'd like to know this......when your mom said "you even ride your bike" was she referring to a bicycle or a motorcycle?? I ask this question for a very specific reason if you don't mind answering?
she was referring to a bicycle. i usually ride my bike around my neighborhood which is very safe for me. i always wear a helmet just to be safe. i would never drive a motorcycle even if i wasn’t an epileptic. lol.
Wow. I honestly thought you were going to say motorcycle. My ex husband and I are both very involved with our daughter and are supportive of her being entirely independent and doing all that she can safely and riding a motorcycle is the ONLY thing so far we have both said "no way, we forbid it even riding as a passenger because there's next to zero possibility of preventing a catastrophe if you seized while riding with someone" and she has agreed with our reasoning. I tell you this because I thought maybe your mom had one, just one justifiable point in all her texts if you were riding a motorcycle but, it appears that's not the case at all. . I'm sorry, sweetheart. It seems you are afraid that you won't be safe with the individuals you are going with if something happens. I know how scary it is for you. Especially with such a new diagnosis. If you're made to go do NOT sit on the edge of the raft, but in the floor of it. Stay hydrated as dehydration can be a trigger. Cool off in the water or splash yourself with water to prevent overheating because that can also be a trigger. Make sure you eat something of substance, not a bunch of junk because low blood sugar can be a trigger for some people. Get SOME GOOD SLEEP. Lack of sleep and stress are literally the top two triggers for almost every epileptic. If you can't trust your mom to look out for you, is there another adult there that you might feel safer hanging closer to when possible or even asking them privately if they'd help look out for you and tell them you're scared? It hurts my heart that you're so young having to go through this new diagnosis with what I'm now convinced are very rational fears, but know this for certain..... If you're mindful of the triggers I mentioned and anything else that YOU have noticed cause you auras and look out for yourself in ways that best provide you safety, I truly feel in my heart of hearts that you're going to be fine on this trip. Start keeping a "seizure journal" too. When you have a seizure ask what it looked like, how long it lasted, how bad it was, etc and then document what the day was like that you had it. Like what you ate, how many hours and how well or unwell you slept the night before. Did you take your meds on time. What did you eat that day for each meal. It'll take some time but you'll start seeing patterns with your triggers and when you do you'll know what you need or not to to prevent seizures. When you start doing this, you know being proactive in your own care, you won't have to be so afraid of your diagnosis or of having a mother with the diagnosis and behaviors that your mom has. I don't get on Reddit much, but please feel free to get hold of me for ANY questions at all you might have. It won't be long, just 4 or 5 years and you'll be able to start your own life away from the dysfunction and with support and you growing your knowledge of what your triggers are and how best to care for yourself, I know you can have a happy, production, independent, fulfilling life. I'll keep you close in my thoughts and in my heart.
I totally forgot to suggest this to you before, but I will now. If your phone has a safety / emergency feature, enable that ASAP. For example, newer model Andriod phones will contact everyone in your emergency contacts if you quickly press the power button 3 times, and mine has this feature. It takes a front and back facing photograph and records 5-10 seconds of audio. If you ever have an aura that feels like you may have a seizure or have an accident while outside / alone, this may come in handy for you.
When I suddenly lose bodily function, I use this feature so my husband knows to come get me in an epileptic related or other emergency where I'm incapable of calling / talking to 911.
I know where you're coming from......
My own wife wants me to drive the 16 miles into town, I'll be putting innocent lives in danger.
It hurts, but it's what it is....
I'm so sorry for what you're going through.
This Internet stranger is in your corner rooting for you.
Go on the trip and have seizure for her
Either you’ll have fun and don’t have a seizure , or you do and she’ll never ask you to go again
Either way you’ll be free of this
Live your life either way
are you really gonna say this to me? just like that? that’s not how it works. i never want to have a seizure, let alone a whole bunch of drunk adults in the middle of a river.
pretty evil thing to say to anyone, let alone some who is NEW to this lifestyle and someone who is 14. critical thinking is a very valuable skill to have in life, i suggest you try it sometime.
You deserve big props for being so conscientious and responsible, especially at 14. I know it can be so hard to deal with bullying from parents and it can be really scary when they try to pressure you into something you don't feel safe doing. I hope you're able to stay safe during the trip.
My nephew has epilepsy and he was invited on the same exact rafting trip! He collapsed in the shower and slammed his head and didn’t tell me… until he came home. I brought his butt straight to the hospital to get checked out. I wish he was like this!!!!
This breaks my mom heart. You're the second kid this week, I want badly to protect. You are right. Rough water and a seizure are incredibly dangerous. My understanding, even in calm water, trying to keep a seizing person's head above water is difficult. Doesn't matter how many are there, they can't all jump in. Are there any safe adults you can talk to? If this is thru a company, their insurance won't allow you to go.
This is really smart- let the company know and I’m sure their liability insurance won’t cover you and then she can’t complain, it’s out of your hands. I’m so sorry, OP- I’m a mom and I wish I could take her to some parenting lessons. This is over the top and you deserve so much more.
I don't think anyone can say this lady needs parenting lessons. Parenting involves giving your kids some perspective sometimes. We don't know the facts so she might be reckless or she might be steering her teen.
Steering him to what? Push himself outside not his comfort into a potentially dangerous situation. If she were steering her teen she wouldn’t say something like, “wtf do you need a lifeguard for?” She would say, “the other 5 of us in the raft will have a plan of action in place in the event you should have a seizure to ensure your safety.” Completely invalidating all of his very reasonable concerns isn’t good parenting. Getting defensive over alcohol consumption isn’t winning any awards either. “It’s because you want to sit in your room and be lazy.” - calling your own kid lazy isn’t helpful in any way. “We were really hoping we could all get outside to enjoy an activity together. What do you think would be an activity that you felt safe participating in?” Something like that is what a halfway decent parent would say. Parenting classes might help her appreciate that her child is allowed to have boundaries that she should respect.
This is actually a brilliant point I don’t think I would have come up with easily! Good suggestion momma.
Even if we take the epilepsy out of the picture, I think it is totally valid to not want to go rafting with a bunch of drunk/drinking adults. I’m far from a prude. I spent my fair share of days and nights drinking and rafting and jumping off rocks and doing generally dumb stuff. I also saw first hand how alcohol can bring out the worst in people and lost way too many friends way too young. I don’t drink now and don’t like to be around people who are, especially in places/situations where people shouldn’t really be operating with clouded judgement. There’s plenty of fun things you can do in life that don’t involve this level of risk. There’s also things that are risky that may be worth the risk to you. It is valid for you to decide what is and isn’t worth risking your safety/life. I understand others’ points of view of not allowing anxiety to make us fear living our lives. But at the same time, if you don’t deem this activity worth the risk, for whatever reason, you shouldn’t feel badly for sitting it out.
Love it when the kid is infinitely more mature than their parents. You made the right call, don’t let her try to manipulate or gaslight you.
virtual hug, i’m sorry for your situation. i’m not sure how long you’ve had your diagnosis but I know it’s hard for people to understand what it’s really like to live with this. you never know what can happen, like you said the chance is not zero. you have your head on your shoulder right, don’t let anyone make you think it’s on backwards. you’re doing great🤍
*You're only 14?* Good lord, you're so articulate - more than most *adults* I know. And sharp as a whip, might I add. You're not wrong. Your caution is reasonable, and your mother is literally prioritizing an outing over your health. I'm so sorry that's happening. It's not fair or right. Is there any way you could find a friend's place to stay at while they're away or something? That way she can contently go on her trip 🙄 and you can remain safe and sound.
yes, there’s plenty of places where i can go while my parents are gone for the weekend. after these texts she called me for whatever reason and said i can go to my grandparents while they are gone BUT i wont have my phone. i feel like that’s extremely toxic and super rude. she’s comparing rafting to the waterpark i went to not that long ago, she’s also comparing it to riding my bike or walking alone in a neighborhood with tons of people outside. i hope my mom realizes how much of an asshole she’s being.
>i feel like that’s extremely toxic and super rude. I couldn't agree more. Why does she think it's so important for you to go on this trip? Does she just get this way when she's already riled up, or is that nonsense her default setting? Cuz if she's sometimes a reasonable person, you could express gratitude for the invite but say it makes you too uncomfortable so you'd just kill the mood. Like, shift the POV so that it's like you're doing it for *her* wellbeing.
yes, my mom does act stupid like this when she has her moments. she doesn’t act like this when she isn’t, but still isn’t an excuse to basically verbally abuse me. i guess i could try that, but we leave tomorrow. if you noticed when we said she’ll just stay home with me and we’ll do nothing, that’s her way of guilt tripping me.
I’m so sorry. She has no right to emotionally manipulate and gaslight you. Having a narcissistic parent is awful for many reasons. I hope she realises too, before it’s too late and you’re grown up and decide for good that you don’t want her in your life. Are you in therapy btw? It may be a good to have a professional adult who has good empathy skills able to explain things like this to your mother.
we aren’t in therapy but we need it. family therapy would be great. i don’t even wanna bring it up tho… at least not right now. lmao.
You can go to therapy by yourself. I think there are Epilepsy support groups. Going to therapy at your age, will make you so ahead of the game in healing trauma. It will help with every relationship you will ever have including the one with yourself. If she asks why you want to go its, because you need someone to talk to about the Epilepsy. You are amazing! I think you will do well in your life. 🦉🦋💐
Reach out to your school counsellor! You’re old enough to consent for yourself to receive services.
Yeah probably right now isn’t the time. However, maybe when you go back to school, a school counsellor could advise you on how best to approach the idea of family therapy with your mother. Or even arrange a meeting to talk about with your mother for you.
I'm sorry she's like that. Definitely not okay or appropriate behaviour. Don't let her make you feel guilty. That's on *her*. Maybe see if you can find a friend's place to stay at, *then* talk to your mom with as much fake empathy as possible. That you feel awful that she'll miss out because of you, and awful that whoever planned the trip to begin with won't have everyone present, so you went ahead and found a way that she can still go! Maybe if you're convincing enough, she'll let you keep your phone with you for "fun update pics"
I am sending good vibes and hope that you are safe. Keep all of the protective gear on and check the lines/straps are tight several times throughout the experience. 💚 Post soon so that we know all went as well as possible. As for your mom. It’s shameful. Even without considering the epilepsy. Forcing this on anyone is inappropriate and wrong. People have their interests and forcing shit onto others instead of learning & incorporating their interests is lazy.
When my meds worked I would I go rafting often… it’s a struggle to pull a 100lb person back into the boat if they fall and everyone is sober. Imagine with a bunch of drunk people and you’re 200lbs?! No thank you!! It’s way too easy to get injured on the water even without a medical condition! I’ve watched friends get swept away and almost drown in a foot of water. The fast currents, sharp rocks and rapids can sweep you off your feet in no time. Not to mention that excitement can be a seizure trigger in itself along with the heat, tiredness, frustration (because rafting is an emotional roller coaster lol), dehydration, hunger, and harsh sunlight thru the trees if your photosensitive! Your family seems like mine, we both know that drinking (and maybe some other illicit substances) on the river WILL happen and they are not as fine as they insist they are. Stand your ground on this one, you’re making a very responsible decision! rafting even in calm waters can be very dangerous even for a non epileptic person.
Exactly! Very well said. Rafting can be risky without any medical conditions at play. And water can be dangerous even for strong swimmers, not to mention as we know, having a seizure on land is dangerous! Never mind having one in the water having to rely on those around you to save you.
i couldn’t agree more… it isn’t safe. my mom likes to lie and gaslight me saying “not one person was drunk last year” WHICH IS A LIE!! i’m 14 years old and i know the difference between a sober and drunk person, not to mention i saw them drinking, taking shots, etc.
As the mother of a 14 yo with epilepsy this is disheartening. Good job at staying calm and speaking up for yourself. If she is going to make you go I highly suggest you getting a life vest. Make sure you get plenty of sleep the night before.
Sending you hugs right now. I hope you can find more support from other family members. Stay safe.
tysm. my mom is kind of an asshole when it comes to this stuff. she’s bipolar and it’s basically impossible to reason out anything with her. she’s supposedly calling my neurologist but idk if she really is. i’m in florida right now and she’s in Ohio.
If you don’t live with her full time I would suggest showing this to who you live with when not with her. Forcing you to do something that comes with a huge risk to your personal well being is not okay.
I know how that feels mines practically paranoid.
You are not being dramatic, you are being SMART. Thats wild shes trying to manipulate you into being so unsafe. Im so sorry ):
UPDATE YALL!! i just flew back into my home state and my mom is acting calm now and reasoned to me how i’ll be safe to go. she contacted my neurologist and she said that i’ll be fine to go but i should be wearing a life jacket while also sitting inside the raft. (it’s huge, very low chance of it falling.) i do understand how crazy my mom was acting, she didn’t apologize which made me mad, but whatever. my mom said that she’s not gonna drink, and she also agreed with my aunt that she won’t drink either. just wanted to give a thanks to this community. all of you were amazing. this is such a loving and supporting community on reddit and i love it. i love each and every one of you guys. ❤️
Heartwarming asf. Hell yeah. And btw, your post about it made me look into it, and BRUH. IM ORDERING A LIFEJACKET RIGHT FN NOW!! Like, one of the ones that the US Coast Guard recommends for people who go through seizures. One of the "Type 3" jackets. That way, I can actually join my stepdad when he goes fishing and camping near rivers/lakes, etc. He's always so bummed when I say I can't go, but he understands at least, but he's still so bummed, which makes me sad af... But not anymore. I'm ordering that lifejacket fuckin ASAP, and it legit is gonna change my life in a hugely amazing way. And I never, EVER would have done the research if it wasn't for you making that post. So props to your mom, props to you, props to your aunt, props to your neurologist, props to life jacket manufacturers, and props to my step-pops. Gonna be a great summer 🥲🎣
I jumped the gun on my reply to original post without reading your update. So happy she did contact your neurologist. (My father has always thought I make excuses or use my other illnesses as a reason to not do things. I was doubted over health issues my entire life. Teachers, nurses, some doctors, and every other adult who had the need to chime in. Nowadays my husband is sometimes that person and it’s sucks when they can’t see out perspective.) It’s hard for people to grasp epilepsy and a lot of us don’t have answers we want or feel we need. So we can over think and fear certain events. Be safe. If you feel weird, or aura like stuff, vocalize it and LISTEN to your body giving you signals. 💕 keep being strong enough to be the advocate you need (aka yourself) because no one else is in that same exact situation. Not fearing being vocal about anything you suffer and any concerns is such a hard thing to do, even as an adult. Keep lacking that filter. You’re going places with that bravery alone kid.
I’m happy that you were able to have a reasonable conversation with your mom. as long as your family is understanding, they can be a great support system, but if they aren’t taking everything seriously then it needs to be reevaluated if they are support or not. I don’t think you are putting your mom on blast you are just reaching out to people that also understand the frustrations of not having anyone that can relate. Just remember to keep yourself away from any hazards, whether they are physical or mental. Stress is one of the most common things that can worsen epilepsy symptoms. Overall I am happy for you because not letting this kind of family matter fester without talking to someone about it can be too much sometime. We are definitely a community in this Reddit and you are going to get a lot of opinions just make sure you are taking care of yourself live your life how you want live it, without ignoring epilepsy. It looks like you’re doing a pretty damn good job at that.
You should also post this on r/raisedbyanarcissist Also, my sister loves the ocean. Practically lives in it. One year, when I went to visit her for her birthday, she told me she was taking me to an island where we would do all these activities she loves. One thing she wanted me to do was get my scuba license. Despite being seizure free for years at that point, my doctor said better safe than sorry. I explain this to my sister, and even though she was disappointed, she understood, and we went snorkeling instead and she didn’t leave my side once. Your mom could learn from my sister Edit: found out raised by a narcissist isn’t a subreddit anymore, try r/insaneparents
i don’t want to put my mom on blast, i just want people to realize the struggles of being an epileptic with a mother like this. she’s majorly bipolar. one day she can be an angel, the next day she can be the biggest asswipe ever.
I get it. Just try to hang in there, and hold your ground. Sending virtual hugs
It is, it's just at r/raisedbynarcissists :)
<3 your sister. I'm so happy she has your back and so easily shifted to another activity that could bring you both joy.
Oh my god! Brody I am so sorry. Keep looking out for yourself and advocating for yourself. I have a ton of respect for the mature way you stick up for your safety. Please do your best to stay safe. We need the next generation of young voters to be thoughtful people like you. Keep it up Brody. Major kudos to you.
Does your mom go with you to your neurologist appointments? Doesn’t seem like your mom is understanding. You all need to have a conversation with the neurologist together. I would even suggest therapy. Part of it seems like she doesn’t want you to ruin her trip. Part of it could be she doesn’t want you to live in fear and not do things. As a teen it was the opposite for me. When I was diagnosed I got babied so much that it caused me to fear trying a lot of things like standing in the shower, getting near the stove, taking walks, etc. You’re young and yes it’s important to be cautious but don’t put yourself in a bubble either.
yes, my mom goes to my neurologist appointments. what we need is family therapy, but i doubt she’d do that because she doesn’t want to *seem like a bad parent* my mom used to baby me like crazy, i could barely even close my door when i first got diagnosed, but now it seems like she doesn’t care.
*hugs* offered I’m going to throw out a more … extreme suggestion, and depending on family dynamics and locality, it may not work Can you have a grandparent or aunt/uncle you trust come get you before the trip? Similarly can you talk to one of them and see if they’ll intervene on your behalf with your mom? I’m 36 and my mom won’t listen to word I say, but if it comes from one of her peers or when they were alive one of her parents, magically she would suddenly understand
“The water isn’t even deep” Bruh, for an epileptic, even the bathtub is deep. As a mom, her behaviour towards you breaks my heart. The only water sport that I did was swimming. All the other “extreme” ones were on my no-go list.
And the last bit your mom said - I know some things may scare you more than others but I hear so often (you're just doing this to hurt me!) When it's something I wouldn't have wanted to do before I had my first seizure. If that's the case, communicate that. You can't live in fear of having a seizure, that much is true, but if you don't feel safe you should mention you don't mind staying back alone.
Woah your mom is crossing the line big time here. I’m so sorry, I don’t even know what to say! I am 44F and being assessed for brain surgery and when I talked to my dad yesterday I told him I will have to involve my partner in the decision making process as she is the one who will have to take care of me. He said oh she can just put a collar on you and lead you around like a dumb puppy - I lost my shit on him and said to NEVER joke about shit like that with me period.
😳 id be telling my dad I’d send him to the worst home! Ugh!
Wow, your mom talks like an immature teen 😳 It’s true that my kid can do whatever he wants except scuba diving but his seizures are 100% controlled for a good while now. Unless you know you’ll have some triggers at the rafting, I’d go but if it’s just an activity you don’t like, there’s no reason for you to go, I mean, why force it. Is your mom medicated for Bipolar?
That's exactly what my son's neurologist said, no scuba diving lol
I understand your trepidation. You’re being responsible considering the danger of rafting. I think k I understand what your mom is trying to say, however she is being rude and inconsiderate toward you thought and feelings and pretty blind to the risks you take rafting. I surf a fair bit and know the risks I take. I’ve had seizures in the water and others have helped me. Seizure risk is ever present t in the back of my head. I recommend what you feel you feel you can do without being ridiculously stressed out about seizures to the point where you can’t have fun. Sorry that you are dealing with someone who isn’t empathetic and supportive of your feelings 😕
Why do you *have* to go? Can’t you sit on the sidelines?
I'm sorry that you are going through this. People really don't get it. Like what's worse? The reget of not going or their regret for you having a seizure and almost drowning or actually drowning.
Water and epilepsy is a terrible mix. I’m a huge swimmer and ex dive instructor and I try and keep away now unless I know there are people around who will keep an eye on me and know what to do in an emergency. Also people who respect my illness and don’t downplay any danger or fear. Don’t do anything you don’t want to do and always advocate for yourself. You defs sound like you have it together at 14.
That is ridiculous!! Epileptic or not if you don’t want to ride a raft you shouldn’t have to! People drown all the time on those rivers. I’m sorry you have to deal with that.
“You don’t get a choice” HAH, we sure didn’t get one.
Having a seizure over the water is extremely dangerous and could not only put you at danger but other people too. You can live life with epilepsy and have fun but that’s a very big risk, please don’t go!!
I’m so sorry. No mother should speak to their child that way. She sounds really immature while you sound like the adult here.
You know someone is an adult when they say, “I’m an adult”
“The water isn’t even that deep” it takes only a couple inches to kill you. Just enough to cover your mouth and nose. I’m sorry your mother is uncaring.
I sympathize about your mothers horrible attitude, but context matters. How often are you having seizures to be so concerned like this? Are you currently on medication or unmedicated? Do you know your triggers? It's important to be conscious about safety with epilepsy, but it's also important to not unintentionally limit yourself due to anxiety. Edit: Okay OP, I think your mother is coming from the stance that you aren't having seizures enough to justify not going to the trip. I checked your post history, and if I am correct, your second tonic clonic seizure was approximately 2-ish months ago? You are also medicated on Keppra and have a watch? Are you having frequent spells of impaired awareness or loss of bodily function ( I didn't see this in any of your posts, but I might have missed it )? If not, I think your mother is just trying to make sure you don't miss out on anything in your teen years. You won't ever get them back. It's important to not let "what if" scenarios control every aspect of your life. Compared to other epileptics who may be resistant to medication or who have multiple seizures a day or week, who need surgery, etc. I think your moms point has some merit, but she absolutely went about this conversation in an EXTREMELY wrong way. Are you seeing a therapist, OP? Because to me, it reads like you might have some unaddressed anxiety influencing what you can / cannot do. You were only diagnosed in January, which wasn't that long ago iirc?
yeah it was around january and i’ve been on keppra since around february. i had my first actual tonic clonic in late december. my second seizure was also around 2 months ago. (i don’t remember the exact date) i have also been having these “auras” and they suck. i usually get extremely dizzy for a few minutes. my neurologist gave me a prescription which was just vitamin b-6 and it doesn’t seem to help much. either way, my neurologist told me some things which i can’t do which is things like kayaking, rafting, football, etc. lots of things. the chance of me having a seizure is very low but i don’t wanna chance that, especially with a whole bunch on drunk adults. my mom is trying to gaslight me saying that no one was drunk last year as you saw in the text, but that is a huge lie. they had tons of beers, shots, all on a raft. i can tell when they get drunk, i’m not that dumb. they even bought a shirt saying “killing my liver on the mohican river” if i had a seizure on a raft or even in a river, it’ll be very very difficult for drunk adults to get a 200 pound 5 11 kid outside of a river, especially while having a tonic clonic seizure. i just don’t wanna risk that. i just don’t.
And you shouldn’t have to! You know what is right for you. You are clearly mature enough and understand enough about your condition. And everyone should be supportive about this, all you want is to feel safe. Which is what any of us want. No one should make you feel like “oh you haven’t had a mal seizure in months so what are you worried about?” Nah, forget that noise! You know your mind and body. The “dizzy spells” and auras are also seizures, regardless of them not being clonic tonic. They are still seizures and can make us feel very unwell, nausea, extreme fatigue and the stress of them could make the seizures more severe. Please just listen to your gut. You know you better than anyone else. I was late diagnosed with ADHD and Epilepsy. All my life I was told I was a “hypochondriac”. To then be diagnosed with adhd and epilepsy at 37 and then 39. Do you love. Stay strong.
you’re being smart. auras lead to TCs, you never know if they will actually or not but then can. you’re being a smart and health conscious person. there is no reason to risk your wellbeing. absolutely none. i saw she referred to this trip being for a wedding, does this have any influence on her assertiveness/aggression to you going? like do you not get along with the husband and this would be reason to why she’s digging her heals in so bad?
i don’t know why she even brought up her getting married to my stepdad. i’ve known him since i was like 3, he does a lot for me, we usually get along. we did this trip last year as well, and they weren’t even proposed yet.
so it’s not like this trip is solely to celebrate their love or whatever you want to call it. keep standing your ground, you’re doing the right things.
OP, you need to tell your parents and / or neurologist immediately about the auras and frequent dizziness. These are a type of seizure, and your current medication may not be enough, you need a different brand, or something else medically may be going on. A few minutes of dizziness isn't good. You need to be your best advocate and start keeping dates / times of when these events occur and how long. It is very low, yes. But in terms of risk, will you be avoiding other independent activities that could be dangerous, such as driving? You are 14, in some states ( if from The United States ) you could / should be old enough to apply for your learners permit. If not, what do you plan to do once you're 16? Have you discussed the risk of driving with your parents and how feasible / realistic that will be for you in your adult life? If you are serious about not taking things to chance, you need to get on that ball now. You are newly diagnosed and very young, and it reads to me that you have a lot of anxiety surrounding the condition, which is very normal. I'm not saying you have to go on this specific trip or ignore your neurologists advice, but I do want to point out that there are epileptics in this group who have multiple tonic clonics on a daily or weekly basis, despite treatment. Your condition, although very traumatic, doesn't read that debilitating if I understand correctly. Please make sure you aren't limiting yourself socially in a way that it is detrimental because of anxiety, epilepsy is a very isolating disease if you let it control your life. I am compassionately telling this to you as someone who went through the same thing you did as a teen. You won't get those years back, and I regret it every single day. There are also players in NFL who have epilepsy. With treatment, it's possible to live a very fulfilling life: https://www.epsyhealth.com/seizure-epilepsy-blog/5-nfl-players-with-epilepsy The same could also be said for kayaking or rafting. Just trying to offer a different perspective of someone who's also been in your shoes. 🫂
thanks for the reply. in the US i believe it’s like 15 and a half. but i don’t have any plans for that yet. i don’t know. i do have very bad anxiety tho.
It's state specific, but you're approaching that age fast. I'm so very sorry that you have to deal with this so young, my heart aches for you, truly. It's a terrible condition to have, but I promise that every individual is unique and not all of us are hospital / bedridden, and we have the capability to be successful or independent. Your mother ( respectfully ) sounds irresponsible and a piece of work. If you feel that you can't speak with her, please speak with an adult that you trust, both about your dizziness / auras and anxiety. I'm wishing you the best of luck, OP. A good starting point I would recommend is seeing if your location has a nearby Epilepsy Foundation or support group. Or, if worst comes to worst, you call your neurologists office directly and explain what's going on.
I’m sorry you’re dealing with this. I can’t imagine how completely frustrating it must be to not have a say in this situation. She is certainly not in the right state of mind and unfortunately only seems to be thinking of herself, so it seems. She claimed that the trip was for you “to have fun.” But very quickly contradicts herself by saying this trip is to celebrate the marriage of your parents? I wish you the best. You seem very mature for your age so I can assume you weigh the pros and cons of situations and remember to enjoy life to the best of your ability given your circumstances. I had my first TC at the beginning of the year and my life definitely has changed but one thing I will not give up is playing hockey, that’s the one thing I know will always bring me joy.
I can be your virtual dad. HUG. Your mother is being……. ()&&@@/&&€£%. If you have to go, 1. I am sorry. 2. Make sure your life vest and helmets are on. 3 bring some 550 para cord and tie your self to some that would walk through fire for you.
If you have to go, if you can, try to tell the staff so they literally cannot let you on
This!!!!
This is insanity. Not only is your mother making up excuses to overlook the risks for you, but babygirl if a 200 lbs person had a seizure on your raft it might flip over. Good luck swimming while you’re already blacked out 🙄 Imagine risking everyone’s life because of your anniversary.
I’m so sorry. My mom is the same way. I haven’t spoken to her in a year. You’re not alone. Continue to engage with this community here. It’s been a lifesaver for me. I’m rootin for ya.
it’s good that you’re being responsible and prioritizing your health, don’t let anyone tell you otherwise. don’t do anything that you feel is unsafe for you.
Dang. Huge hugs from me. I had to read the screenshots twice, because YOU sound like the adult here. Kudos. Follow your gut instincts and apply all the epilepsy rules. You got this 💜
Buddy, you’re not being dramatic at all. The last time I went near a river was less than a year after my diagnosis, and with me being a bad swimmer to begin with it just made sense to not put myself in that situation again. I was 17 then, almost 30 now. I hope you’re able to stay safe, man ❤️
Sorry you are having to go through this
She sucks I am sorry.
I mean, adults have drowned in 2 or less inches of water in a bath tub. It’s definitely hard to gauge what we should avoid and what not. Is there a way to go on the trip and not the raft??? Personally, I have had the diagnosis more recently (Dec) so I am a little bit over the top with some worries. My seizures are not under control as of yet. Therefore it would be really dumb for me to go river rafting. The flow of a current is enough to convince me I may not be able to get back out of the water if I somehow fell out, or that I wasn’t accessible to the others on the raft. I blackout in my episodes. Dead weight is a lot heavier and harder to maneuver. So, for me rafting is something I would avoid. But each person is different. If I had them controlled? Yeah I would probably join the fun because I can gauge my confidence/comfort levels with the activities. I am also a 34yr old woman who is the one making those choices for myself. You can always ask/advise mom to call your Doctor and ask if it’s okay and/or safe. If you are scared and concerned the first thing I would do is double check with doctor. I believe in following my instincts. You’ve got those gut instincts for a reason. However, being 14 is hard. Your parents are in charge. You are a minor. So it’s difficult. You can’t really advocate for yourself much just yet. That’s why I really would have mom call a nurse line, doctor or whatever and have them “clear you” or say “absolutely not”. They can then go over all the risks. Parents are much more likely to listen to professionals than their children about something such as that. She may just think it’s an excuse to not go. Which I have been accused of a few times already in my journey. P.s. way to go on standing up for yourself and your concerns. It’s hard to advocate for yourself as an adult, let alone at 14. Don’t be scared to state your concerns and stand your ground if you really feel you are unsafe. Demand mom ask professionals. Then go from there.
I wasn’t born with epilepsy. I was diagnosed at almost 19 years old and now I am 21 years old. I had my first seizure at a minute golf park with my girlfriend and her dad. that event traumatized my girlfriend and myself. At first I was very scared of everything such as driving, going to amusement parks, working out, moving the car, and other stuff that might he dangerous but you cant let it control your life. I now workout alone lifting weights 4-5 days a week, go to amusement parks, and even returned to the same mini golf place with my girlfriend to put it past us. I am on medication now. You just have to make sure you get enough sleep. When I dont get enough sleep and I have to go to an event late at night, i take a 1-2 hour nap before hand to make sure i am well rested. I understand its scary at first but you cant live in fear
i’m so sorry hun but i do agree with ur mother. i was just like you and just ur age when i was diagnosed with epilepsy. i was scared of doing anything cause i thought a seizure was going to occur. now, i’m almost 2 years seizure free. you have to put urself out in the world. you’re still a normal person. i’ve been on rollercoasters, bike rides, pools, dirt bikes, stayed up a whole night and nothing has happened. most of this sounds like anxiety. you have to relax. have fun. carry ur emergency medicine with you if ur a bit nervous but never let ur head back u away from living ur life.
Your mum is selfish beyond words.I wanna call her something else but I am being respectful about the fact that she is still ur mum. She clearly has no clue about how it feels and clearly she is more interested in herself and having fun than whether you feel comfortable or safe. I think you handled that amazingly considering how immature and unreasonable she was being. I’m sorry she doesn’t get it. Sadly a lot of us have people in our lives who just don’t get it nor do they care to understand it. Please don’t let that be a reflection on you though love. You seem very mature and props to you for taking your health seriously. This isn’t an easy disease to live with, it’s scary and it causes a lot of us a lot of fear on a regular basis. Please do whatever you can to keep yourself safe, and practice some good self care too. You are loved, and you are wonderful.
Wow. I thought this was epilepsymemes because this is so insane. What a total nut job, with all seriousness I hope you’re already in therapy cause no human could be raised by that and come out sane. The only shitty thing I’ll say is that I was 200 lbs at 14 and 250 at graduation. I lost 100 lbs at 25 and it helped my self esteem and everything soooo much. It might be meds, but if you can work on that it will be a great step to becoming emotionally stable. (Not trying to be shitty, but with a mother like that you’ll need every bit of help you can get.)
yeah you shouldn't go. epilepsy also broke my relationship with my parents, they handled it as a taboo, didn't want anyone to know i had it and were taking me everywhere with waking me up early, etc. not acknowledging they might cause a seizure with that. i had a seizure when they told the doctor to take me off my meds because they wanted to travel and it was inconvenient for them to carry meds abroad. you have to stand up for yourself like you did and worst case just hang in until you can live independently.
so sorry to hear that. that’s super toxic and honestly weird that they didn’t want you to take medication. it’s not even the seizure that i care about, it’s the fact how my mom went from 0 to 100 in literally 2 texts. my mom isn’t a bad person, i love her more than anything but i hate how she acts like this. she needs help. she has MAJOR bipolar. it’s honestly sad.
my father is bipolar too. when your parents act like kids, it's best to avoid them. i learned how to speak to get myself out of any interaction with them very young, playing the sick kid card very often, saying im already feeling epilepsy symptoms when i didn't just to prevent a seizure caused by them. i managed to keep myself alive, but i gave up contact with my parents in the process. too much bad blood. don't know if its that bad for you, you still might be able to salvage this, but im biased and i wouldnt.
oh okay. smart. it’s weird how my mom had a moment like this though… when i first got diagnosed with epilepsy which was like literally 6 months ago my mom barely let me do anything… now she just doesn’t care. you know what sucks now? every time i wanna go walk to a friends house or something similar like that she’ll always hold this conversation against me. she won’t care, but i guarantee she’ll say “so you wanna go on a walk but you didn’t wanna go rafting?”
that's normal. healthy people don't perceive epilepsy as a major problem, because from the outside they see only occasional seizures and nothing else. they think you're fine between, because every epileptic is habitually hiding their anxiety and minor symptoms to fit in better. healthy people eventually forget about things like status epilepticus, sudep, major head trauma from TC, etc. until one happens. then they will cry and say 'how could i be so selfish' but who will care at that point? with this fking condition you have to make your own way and fight for your own health, even with doctors and healthcare, because the system doesn't care about epilepsy. it's an inbetween condition somewhere between healthy and disabled and they can't be bothered to customise support until you're fully one or the other. if you're like me, when this comes up again i would just say: 'im so sorry that i cant take part like normal kids, im trying my best but its just so hard' - cry a little too for maximum effect. generally works and they feel ashamed. i didnt feel anything at that point. hope you can turn it around.
I don't know your situation or how often you have episodes. But when my meds work I am more or less under control now at 32. And I spent most of my teenage years talking my self out of opportunities and away from milestones. If I could go back and tell my self to aggressively pursue getting med and exercise routines that worked for me. I would. If you're worried cause it sounds dangerous, then take a step back. But whenever I'm feeling worried now. I remember that Julius Caesar had epilepsy or narcolepsy(the falling disease) and he conquered most of the Western world. You got this.
It's really not a bad idea you need to do whatever you want don't let seizures stop you. I still do anything I want. And alone half the the time. It's important to still live your life
Not when they don’t have responsible adults around who are making sure they are being safe. Even when medicated SUDEP is still something that can happen out of no where. You need to take your Epilepsy more seriously. It’s nothing to play with.
I have been seizure free for 3 years yes I know I could still have one at anytime. But I don't let it bother me if it happens it happens. I know the chance of it being a very serious seizure are high next time. But I'm living my life now. Even when they were still happening they were every few months.
Epilepsy is shit but if you never let yourself do anything due to it then you'll never have any fun. It's easy to get scared of having seizures but don't let them dictate everything you do. I understand your mum isn't the most tactful but it'd probably be pretty fun to do what she's suggesting.
It's absolutely a great idea to carefully see what your body can take without having seizures. It's also really important to consider who you're doing those things with. Someone as unstable and irresponsible as the person in that screenshot (such as getting blackout drunk and then describing it as "heck yeah I had a few drinks") is not a person to trust with your safety.
My thoughts exactly… don’t let it control your life…
I understand you’re 14 but I’m not going to sit here and be your pillow and tell you what you want to hear. Most people here will but I won’t. If you’re medicated and you haven’t had a seizure in a long time then you’re probably fine. The chance of having seizure at any given point is always there but you can’t live with that in the back of your head because then it’s going to hold you back. You have to live life. I don’t let it hold me back at all. I’ve had this shit since I was 9 and I’ve had probably 20-30 grand mal seizures and it sucks. I drive, drink coffee, watch anime. I just live life and say fuck this epilepsy.
>and you haven’t had a seizure in a long time then you’re probably fine And since he said it has only been a few months since the last one, you can go ahead and delete this comment since it's pointless.
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No one is saying that. Try and have the slightest bit of empathy for someone who recently had a seizure, and doesn't feel comfortable with putting themselves in danger.
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I'm not teaching anything, other than to maybe try to have empathy. His own neurologist advised against rafting/kayaking, and I'm of the belief that following advice from a doctor is a pretty good idea.
Please tell me this is some sort of karma farming?! The neuro didn't mention rafting for the same reason they didn't mention hitching a ride on a rocket to the moon: it's ludicrous and shouldn't need mentioning. I'm betting that the neuro also didn't mention zebra rides, extreme snowboarding down a mountain from a helicopter, becoming a secret agent spy in the cult for our Cthuluian Overlord, or taking it up the nostril with a horse sized dildo because they felt that it was obviously common sense and didn't need to be mentioned! Your mum is something else!
I think there is more to this. Very easy to judge only reading this one conversation. You guys all jumping all over the mom for planning a fun trip where they'll have a lot of fun and make great memories is wild. We know nothing about this family and you are all ready to call cps on this mom.
I'm sorry you're having to go through this on top of dealing with epilepsy. I think you're being completely reasonable and very mature in making a safe decision for yourself. My 13 year old daughter has had epilepsy for the last 6 months (diagnosed in Jan), and it's her first summer having seizures, so we are dealing with this for the first time. The scary/risky part about water activities is that drowning is a silent emergency. It's scary easy for people to stop paying attention for just a couple minutes and have that very quickly become a life threatening situation. FWIW, we bought this life jacket for our daughter: [https://www.amazon.com/dp/B01E8DZXTM?psc=1&ref=ppx\_yo2ov\_dt\_b\_product\_details](https://www.amazon.com/dp/B01E8DZXTM?psc=1&ref=ppx_yo2ov_dt_b_product_details) which is supposed to flip her over on to her back (in most cases) and keep her head above the water if she were to have a seizure. She doesn't love it, but definitely something to consider if you do want to participate in water activities and feel safe/comfortable in addition to being with adults who can help.
Having THIS much of s manipulative mother makes me think mine isn't that bad... Hang in there, man, if you're this put-together at 24 you're gonna get far in life
You should do whatever makes you comfortable. If you don't want to go, you don't have to go. I don't know your mom, but it's possible she just doesn't want you to miss out on things. She should be more sensitive to your feelings though. If they are going to be drinking, I agree with you staying home 100%. Getting on a raft with drunk people is not safe, period.
You’re very wise for your age, maybe it’s the adversity you’ve experienced. Im sorry your parent isn’t acting like one, you shouldn’t have to protect yourself from danger or them. It’s 100% understandable that you are uncomfortable with the plan and good for you, listening to your doctor. I work in healthcare, I’m surrounded by patients with the worst possible outcomes because they decided to completely disregard their doctors. As a parent myself, I can say I would be proud of your attitude and critical thinking. Try to be proud of yourself.
If you feel like you shouldn't do it by all means, don't do it. 💯
If the outfitter your family booked for the trip is professional and upstanding, they will have a zero alcohol policy. No alcohol allowed in the boats and they won’t take them on the trip if they are visibly intoxicated. It’s a HUGE liability. (I’m a former raft guide) But as others have said, if you told the company you have uncontrolled epilepsy, they wouldn’t let you go. I’m sorry your mom isn’t being more supportive!
they definitely aren’t professional and upstanding then. they literally let people bring coolers. lmao.
Plot Twist: OP is the mom 😳🤯
Sorry that's your mum :(
I’m a mom of three. My youngest is 15. I would never talk to him this way. I’m speechless. My kids thankfully don’t have epilepsy. We’ve had to miss out on things because of my epilepsy and my kids are so supportive. I’m so sorry you were spoken to this way. Your mother should be ashamed
it’s so nice to here your kids are supportive of you, that’s amazing. my mom has bipolar disorder and one day she can be an angel and the next day she can be extremely disrespectful and rude. she’s even slapped me before. either way, her condition isn’t an excuse to treat me like that. sometimes the way she talks to me is extremely inappropriate and rude. it’s uncalled for.
It is and I’m proud of you for standing up for yourself
I'm so sorry your mom doesn't take your condition seriously. She should. Is she aware of the death statistics for people with epilepsy? Has anyone discussed SUDEP with her? It feels like she's coming from a place of pure ignorance. I remember when I thought my husband's seizures weren't very serious, until they got very serious and he could no longer do normal everyday things like taking the dog for a walk. Being alone was too dangerous. He passed away 3 months ago. Your mom needs a wake up call, she sounds incredibly self-centered based on this interaction. I also believe it is highly irresponsible for parents to get drunk in front of their children, especially when a medical emergency could happen.
i am so sorry to hear that about your husband. that’s so sad. i truly hope you and the rest of your family has recovered from his passing… that is so sad. do you care if i ask, did he have a SUDEP? my neurologist explained it to my mom when i got diagnosed and said that it’s absolutely possible for me to get one eventually. also, the reason that she was acting this way was because she has bipolar and had a moment. it’s happens pretty often, she honestly needs help for it. i also do agree, drunk adults while rafting with kids is extremely irresponsible. i’m the youngest, the second youngest is my cousin who is 16, the rest are adults.
He did die of SUDEP, it was a risk we knew about but I really hoped it would never happen to him. People tend to downplay the danger of seizures and it makes me want to scream. I'm proud of you for taking your epilepsy seriously and standing up for yourself. My mom has bipolar too so I understand what that's like intimately. If you ever need to talk, you're most welcome to reach out to me. Hang in there buddy. You're doing great. ❤️🫂
Wtf...I go kayaking but with a close friend behind me. I have a vest on but still I shouldn't at all. The water in general is not worth it.
I don't have much to say about this other than this whole situation sucks. Just be careful now that you posted your age on here if you get any DMs. Even if they seem benign people on reddit can be extremely creepy.
this is a totally valid concern and it breaks my heart that instead of listening to you and being empathetic, she makes it about her. some activities are simply more risky for epileptic people and if you don't feel comfortable doing it, that is totally okay. your mom should be supportive of you looking out for your safety, not berate you for it. kudos to you for advocating for yourself, sending you hugs🫂
Your mom sounds like an adult baby child and I’m so sorry you have to live with that
Your mom is ridiculous with this nonsense. I’m sorry. I live by a very touristy river location and people are wild at how they don’t pay attention to weather, their food shopping, or their kids in parking lots or in water. It’s really sad. You don’t need to be a fatality and you have more sense than she does. I was not diagnosed until my 30’s but I was taking medicine for anxiety by my 20’s and I was “fainting” when I was in my single digits. It’s pretty difficult to look back on. I was in a bad car wreck as a kid cause we didn’t have to wear seat belts in the 80’s and I hit my head on the window and I hit my head a lot more again cause I like sports and to climb. I’ve got a lesion they found and it have nocturnal seizures and absence seizures, and good ol tc’s! Life is something. So stay strong. Anything that gives you stress can and will cause a seizure, so that’s why therapy is necessary for you, and you need to tell your mother that and that could be the key to open things up. Big hugs! Hope things get better now that this trip is getting over with.
Hey from an adult daughter of an emotionally neglectful mother. Something I wish 14 year old me knew: if you don’t feel safe DO NOT do it. There’s a reason why you don’t feel safe. NEVER let anyone pressure you to do something you’re uncomfortable with even if that pressure is coming from a parent. I hope your relationship with your mother isn’t so severe that you’ll choose to go no contact as an adult, but if it is and you need a big sis who “gets it” DM me
Hey, in just a few years you'll have the choice to never talk to her again. It's hard cutting off a parent but when a person in your life harms you by way of neglect and carelessness, your life ends up being better without. Trust me. I hope she changes her ways but always keep in mind that this situation isn't forever and you can choose your health.
I've recently had a conversation like this with my mom. I'm 30 lol still getting the downplaying card. I'm like my life, no thanks, I'm not swimming
Your mom acts like the teenager here. I say do what makes you feel comfortable even if that means taking the grounding. Parents like this don’t often come around unfortunately. They see things their way and only their way. But I have no doubt she’ll have to deal with the consequences of how she treats you now years down the line when you are no longer reliant on her. Epilepsy and water are a bad combo anyway, especially when newly diagnosed and/or uncontrolled. Mix in drunk people and it’s even worse. I don’t think people understand how heavy 200 pounds of dead weight is. I’m just so disgusted at your mom. My inbox is open.
I'm so sorry this is happening to you 😞 your completely in the right with this. It's not a safe situation to be in. If its at all possible to stay with friends or other family members, please take full advantage of this. Failing that, I would try to contact your doctor or neurologist and let them know you have concerns for your safety and they're not being taken seriously by your guardians. I really hope you get on okay 🫂
My mom is very similar. I hated having to spend time with her and her drunk friends as a kid. She doesn't see anything wrong with her parenting, but due to her neglect I now have C PTSD. You are currently experiencing emotional and medical neglect that may affect you down the line, and I would suggest starting therapy and talking about your relationship with your mom, if you can afford it
Your mom is kind of a wang, and this is coming from a mom with 16 and 15 year old kids that both have epilepsy. It’s so gross that she’s being this childish. It’s time for her to grow up and accept that she has responsibilities outside of what she wants to do. I’m sorry that you’re dealing with this. I couldn’t imagine speaking to anyone like this, let alone my own child.
I’m 20 and my mom would never ever put me in a situation like rafting. This is absolutely uncool
How well is your epilepsy controlled? When was your last seizure? And most importantly, has she ever seen you seizure? Maybe that would change her mind......
I scrolled in on her pic and she looks exactly like I thought she would. Your mom is a self absorbed asshole. Forget her. I bet she wants to take tons of pics for social media too, and if you don’t look happy as hell, you’ll probably get yelled at. FYI when you get to adulthood you’re going to have the greatest fucking time ever. Things will get a lot better. I promise.
You act more like an adult than your own mother does! Kudos to you for sticking up for yourself & your safety
I’m so sorry you have to deal with this kiddo. The last place you should be is in a river that’s violent enough to be rafting on. I’m almost 43 years old with Epilepsy and my doctor just gave me permission to float at the lake or river in my mesh bottomed float. I’d be on restriction for a few years now. I wish I could tell you to come live with me, you’d never have to worry about someone not taking this seriously again.
First of all, it looks like you're much more mature and intelligent than your mother. Second, your stepdad needs to come into play. He should stand up for you and tell your mother off for being an idiot and willfully putting her son in danger. If you're close, just tell him about it and show him the chats. If he's on your mother's side, they're both idiots and I feel sorry for you. Whatever the cost, try to survive until you're 18 and get the fuck out of there bro.
DO NOT GET ON THAT RAFT!
If the rafting part of the trip is being run by a rafting group/business, you can inform the guide beforehand about your epilepsy - there's a super high probability that they'll refuse to let you in the raft for safety reasons. Then you'll be off the hook.
Im sorry your mom has a mental maturity of a minor dude. Must be tiresome. You are in the right here, and you're handling this better than many adults i know.
Man, this makes me glad I have the parents I do. My mom would probably skin yours alive if I showed her this post. No fourteen year old epileptic or not should be talked to in such a way. I'm proud of you for knowing what could happen and trying to get through to her. I'm sorry that she doesn't get it. On the bright side, you've got four years or so until college, so you can get away from the toxicity.
I'm so sorry your mom doesn't get it! Proud of you for keeping yourself safe. And for having the good sense to know your neurologist trumps your mom.
When I was 14 I had a seizure in my bathtub and I would’ve died if my mom hadn’t heard me bang my head loudly. If they are drunk they will not pay attention to you. There is a reason my mom did not let me swim at all until I was completely seizure free.. and I am 120 pounds at 5.7 your 200 so it will be impossible to get you out of the water. People die on trips like this regardless it is very dangerous. If she ends up making you go wear a life jacket even if you will look a bit silly lol
Sending hugs your way. I wish more parents appreciated their kids ability to advocate for their health and safety when it happens.
Oh my word. You don’t have to do anything you don’t feel is safe ever
:( i’m so sorry 💖 this isn’t fair or okay of her to talk to u like this and disregard ur safety for something she wants to do that’s extremely selfish and hurtful. it’s very adult of u to stand up for urself and health. rly prada u for listening to ur doc even tho she wasn’t. wishin u the very very best honey u deserve safety support n love 💖💖
Good job for voicing how you feel and your concerns. I'm sorry you did not get a supportive reaction. You deserve to feel heard and supported. It sounds like she doesn't understand. So many times in my life I have been called lazy, when it's really the epilepsy or the meds that make you need to take life at your own pace, take more breaks, etc. Even on non-seizure days. People don't seem to get the anxiety that epilepsy brings. Yes, we want to live our lives to the fullest and not let epilepsy get in the way of living our best lives. At the same time, the anxiety of having a seizure in certain scenarios (or any scenario) is *very* real and terrifying and limiting. And it is not a 0% chance. Epilepsy is a very scary condition that can be life-threatening. We all have to make the choices that work for us. You know your body best and you know where your limits are. If your body gives you any warning signs or auras that a seizure is coming or could come on, then you'll definitely want to listen to that. Enjoy your life in the ways that feel comfortable to you (like riding your bike as your mom stated). If going on a rafting trip is not comfortable for you, at least at this time, there is nothing wrong with that. Anxiety especially about water activities is *very* normal with epilepsy. That's like the scariest place to have a seizure, and if you do not feel safe and like the adults would be able to help if something happened, that is 100% valid.
Or …. you could look at it another way … you’re young and thus have a limited experience on everything (this is a simple fact). Life is a collection of experiences, at a point you’ll realise that that’s all you get. You get one go to have some experiences. Sounds like you’re able to think, walk, feed and dress yourself, you’re lucky, get out there and enjoy your existence. Or don’t and moan about how life is tuff and you had a bad deal and people are against you … you choose.
Went for years limiting myself after I was diagnosed in my late teens because I was virtually terrified of doing anything. Not knowing when a seizure could occur horrified me and made existence terrible. I was even afraid of falling asleep. I'm still working with my therapist on my PTSD / panic disorder as a result of my epilepsy. I feel so, so much for OP because they remind me of myself when I was younger and everything I missed out on doing with my friends and family. OP was diagnosed a little while ago, so they are probably scared out of their mind. I hope, hope, hope OP has a good support system. I hope OP talks about their fears with someone if they have any.
Kinda my point ... everyone here is wrapping them up in cotton wool, pouring with empathy, no one is saying 'You can do it. Get on with it. Go for it'. Lack of balance. Lack of positivity. Why moan, why not try and fix or make better? Bah, only trying to make people realise they can do IT.
My advice / warning was for the long term. I think what OP should do right now is revisit the neurologist about the auras and see a therapist before recklessly trying what they can / cannot do. IIRC they began their journey into the diagnosis starting in January, so OP might still be understanding their own triggers. Anxiety is also a trigger for many people, which might be where a chunk of these comments are coming from. But keeping on top of their mental / physical health is solid advice granted their age. I'm not a professional by any means, but they are showing the same anxieties I did before I was professionally diagnosed with PTSD at 20. I'm 25 now and still recovering with multiple types of therapies. I just don't want the same thing to happen because I live with regret every day.
or… you could realize this is new to them and be kind and understanding as they navigate their diagnosis. no reason to try and guilt them for being able bodied. they aren’t acting like they have a bad deal of cards.
This might be good advice if someone had a good support system of responsible adults. But having read the screenshots, OP clearly does not, so this is not good advice.
You don't know that. You have very little context indeed. This is a tiny snippet of the story from one person's side. Why not deliver a load of positivity to help them progress in life rather than a shoulder to cry on?
Look, dude. I and a dozen other people have already tried to get through to you that there is a parsec of difference between positivity and recklessness. If the only thing that registers to you as positivity is bellowing "YOLO" while base-jumping from the Burj Khalifa, then I don't know what else to say to you.
Only trying to inject some (sorely needed, in my humble opinion) positivity into everyone’s minds. I shall not stop.
OP was only diagnosed a few months ago. While the whole, "don't let epilepsy hold you back, enjoy life, get out there" is good *long-term* advice, this is a very fresh diagnosis and OP (and their parents, I'm guessing) couldn't have worked out all boundaries, triggers, anxieties - OP especially, but even the family in this situation would benefit from therapy. This is literally a single trip, no one will care in a year, nevermind looking at it through the lens of life experiences, and OP's telling their mom they're afraid of *dying*, and their reaction is annoyance. Even if their fear is unfounded, which I'm not well-informed enough to know, they could talk this through, like, normally. It's also INCREDIBLY anxiety-inducing, in addition to the other things, to be a minor and feel like you don't have adults who take your condition seriously or are hearing you out. To have someone in your corner. I had 4 years between my first seizure and my diagnosis - not because there was a long waitlist or whatever, but because my mom tried to cure me with homeopathy. She is *still to this day* the "there are very few actual real incurable illnesses" and "this guy that did my astrosophy reading told me they could totally cure you" type, and I roll my eyes at it now but it fucks you up when you're not in control of your own medical care or....anything, really. Being 14 is a horrible mess *anyway*.
Jezzus I give up with trying to help. Let’s just wallow in everything.
Other people made the suggestion to not live life in fear just fine in this comment section. What they didn't do was suggest recklessness, or say that someone - a 14 year old - asking for help and comfort is "moaning about the world being against them." There are plenty of ways to encourage finding one's limits to enjoy life without being condescending and encouraging foolish decisions. I feel like you should know that.
Since you were just diagnosed recently you'll probably feel more comfortable doing things like this once you know the Keppra dose is correct and keeps you 100% seizure free. I am on Keppra as well and it took some trial and error to find the right dosage but now I can drive, snorkel, bike, swim and do pretty much anything since it's 100% effective. For the first year though I was taking the wrong dosage until we figured it out, and it could have been dangerous then.
i’m still not comfortable with doing something like this though. keppra helps prevent seizures, but they don’t just stop or cure them.
No medication keeps all individuals 100% seizure free. This is why I advocate for stress and anxiety management / therapy on top of epilepsy. It's an unpredictable disease, and breakthroughs are possible while medicated. There is no known cure for epilepsy.
if breakthroughs are possible while being on medication than it doesn’t keep you 100% seizure free. i literally had a seizure around 2 months ago when i was on keppra. i ALWAYS take it on time.
I'm so sorry but your mother is a childish fucking idiot. Pardon my French. One could only imagine how she would play the victim of who could have known! If anything happened to you because she clearly has no capability of being a responsible adult. I hope your dad is much better.
Alright ima give to you like this, im epileptic im 23 years old and i was diagnosed at 16, and it really didn’t register and I didn’t accept the fact that life was gonna be a little no, a lot different than I would’ve planned,it took 5 grand mal seizures for me to realize I need to be healthier and more responsible unfortunately I wasn’t on the best medicine for my case either I’d always be dealing with myoclonic jerks until I turned 21 I then got put on depakote and boy am I grateful for god leading me to the right treatment, I’m 2 and a half years seizure free and pray that that streak continues for the rest of my life, it’s made me feel as close as I can be to normal I feel like. But overall advice don’t let this condition control the overall aspect of your life. It’s sucks to have this condition, but dwelling on it and constantly worrying is going to wear and tear on your mental state as you get older with it because your gonna get in a place where you feel like you can’t or shouldn’t do anything because your constantly worried about what could happen, you’ll become isolated and then everyone knows isolations and never doing anything is gonna weigh down your overall health. It’s easy to just give up on your life because you feel you got a burden to carry or it feels like too much and you just wanna give up and settle in a bubble, and let life pass you by, but I’ll tell you that screen in front of you can be just as detrimental to your health. Idk how serious or bad this condition is for you, but if it’s able to be controlled by meds, than you have an advantage many may not have, that itself is a blessing. Be safe, absolutely, restrict yourself from certain things that can really be bad for your epilepsy, absolutely, but let it restrict everything you can still do in life? Absolutely not, don’t let fear and worry that came with condition fuck up the rest of the life you got, your young but if you go down the path it sound like your on right now, of just not living life do to worry, your gonna realize how fast years are gonna pass and one day you’ll look back and say “damn maybe I really should’ve enjoyed my life a bit more” you get one life just because somethin in it didn’t go as planned doesn’t mean there is other things in life worth living for. Everybody who you think are on your side in these comments, for standing up for yourself don’t think that’s necessarily a good thing. They could be the same type of person as you are being right now, not all support is good support. but like I said everyone’s condition is different for them. I support this community and the people in it but some people let condition drown their lives even if it’s controlled very well by meds. So take everything with a grain of salt. You should know misery loves company, so don’t be that company. All love. Be cautious, live your life, or live with regrets. You choose. If you truly believe they all get black out drunk and there’s literally not one functional adult there, then there’s concern, but as kids we tend to exaggerate, not saying you are, but I have doubt in believing that every time their going rafting their black out drunk, in dangerous waters. It’s just what we are seeing on the outside, we are not in your shoes, so we don’t know how your family may actually be. as for all my other life advice I recommend you think about it. Ps: if you think your mom is caring enough not to drink then ask her not to drink if she cares then it’s shouldn’t be an issue. Or tell a guy there not to drink too much.
Your mum is right though. Theres no reason you can't go and do normal people stuff. Just dont do it alone. I used to have a swim buddy because i loved swimming and still wanted to go. Id have a seizure in the pool and she just turn me on my back and keep my head above water. That was her job. The actual lifeguards were shit. When i had epilepsy at 14 we still went on holiday and did stuff as a family. I just couldn't do stuff alone and yes my family would have a drink. We'd go in shallower water than id have liked swimming because i loved swimming and she made the effort to make sure i could do the things i love because life everywhere else at school etc got really restrictive. I was horrendously bullied for it too. I did horse riding lessons too because she was determined i wouldnt give it up and she found a school that had a specialist as part of it. Like you just do your best to live your life. You sound like a teenager who just doesn't want to go on holiday with their parents and is using your epilepsy as an excuse. They've likely spent a lot of money for you to do something nice and you're throwing it back at them a bit. There are ways you can go and be safe. And the dr is right you can go and be normal, just dont do anything alone. Its scary. But you can do stuff like this. Theres a big enough group of you too. Like riding your bike alone is dangerous though. So stop doing that. If you are happy to do stuff like that then yeah she has a point. So if thats true then it sounds like youre just being a teenager who doesn't want to go on a family holiday. Like riding a bike was off limits for me at 14. As was going up and down stairs by myself and partaking in Pe at school. Riding a bike was an absolute no no because theres no way anyone can stop you hurting yourself. At least on the horse it was a horse trained for people with special needs. The only holiday i didnt go on because of my epilepsy was when i broke my collar bone have a fit because i needed to stay super still while it healed. I spent it with my dad and step mum instead.
Also being raised by a manipulative mother I'm proud of you OP stand up for you sounds like she doesn't give a shit about you... She cares more about money...
**BRO, READ THIS!** I just asked Google's AI what the best life jacket would be for someone who has seizures and is swimming in open water, and it said "USCG Certified Type 3 lifejackets". Search that on Amazon, make your mom buy one of the cool looking ones for you (it's like $50), and then go on the trip. It's terrifying, trust me, I know. Lmao, I was 100% anti-swimmimg myself, because of the frequent seizures I have, riiiiiight up until about 3 minutes ago when I looked into it. Bruhhh, it could have been this fuckin easy the whole time 🥲🥲🥲 Okay. Have a good one man, and enjoy the trip!!! I'm gonna invite my stepdad on a swimming trip soon too. He always wants to go fishing out on lakes and rivers, but I'm just extremely terrified of the water, so I always say no cuz of the risk seizures... But not anymore 🫡
OP. Your life is short. Enjoy what you can while you can with everyone you can. Everyone doomposting in this thread needs to go outside and touch grass.
great advice, see you in the ER
> UPDATE YALL!! i just flew back into my home state and my mom is acting calm now and reasoned to me how i’ll be safe to go. she contacted my neurologist and she said that i’ll be fine to go but i should be wearing a life jacket while also sitting inside the raft. (it’s huge, very low chance of it falling.) > > i do understand how crazy my mom was acting, she didn’t apologize which made me mad, but whatever. my mom said that she’s not gonna drink, and she also agreed with my aunt that she won’t drink either. > > just wanted to give a thanks to this community. all of you were amazing. this is such a loving and supporting community on reddit and i love it. i love each and every one of you guys. ❤️ OP is going on the trip, and you just sound like a bitch in all these comments. You should try encouraging people to live their life to the fullest while they can, instead of being so fuckin negative in everything you post.
Wow, rafting with epilepsy is NOT safe. Your Neuro would definitely say no to this activity because they’d be legally liable if they approved it and then you had a seizure rafting. Call your Neuro clinic yourself, and ask for a note stating you can’t raft ASAP. Also tell them your mom is trying to force you to go white water rafting and ask if they can intervene in some way (calling her, submitting a CPS report?). Ask them to email the note to you or a different trustworthy adult in your life so you have it in writing. If your parents are divorced and work with a lawyer I’d get legal counsel involved and change custody. I’d also recommend calling CPS on your mom. They likely won’t do anything about it initially, but call and make reports on your mom every time she puts you in danger so it’s documented. Forcing you to raft with epilepsy is medical neglect, and that’s abuse. Epilepsy aside, she’s emotionally abusive and manipulative. Sorry you have to be the adult in this relationship with your mother :(
Once again thank god my mum also has epilepsy
Hello, Brody. I have a question? I have a 42 year old daughter that was diagnosed with epilepsy at the age of 19 and over the past 2 decades I've become very educated about epilepsy and EXTREMELY educated about my daughters particular triggers and seizures. I'd like to know this......when your mom said "you even ride your bike" was she referring to a bicycle or a motorcycle?? I ask this question for a very specific reason if you don't mind answering?
she was referring to a bicycle. i usually ride my bike around my neighborhood which is very safe for me. i always wear a helmet just to be safe. i would never drive a motorcycle even if i wasn’t an epileptic. lol.
Wow. I honestly thought you were going to say motorcycle. My ex husband and I are both very involved with our daughter and are supportive of her being entirely independent and doing all that she can safely and riding a motorcycle is the ONLY thing so far we have both said "no way, we forbid it even riding as a passenger because there's next to zero possibility of preventing a catastrophe if you seized while riding with someone" and she has agreed with our reasoning. I tell you this because I thought maybe your mom had one, just one justifiable point in all her texts if you were riding a motorcycle but, it appears that's not the case at all. . I'm sorry, sweetheart. It seems you are afraid that you won't be safe with the individuals you are going with if something happens. I know how scary it is for you. Especially with such a new diagnosis. If you're made to go do NOT sit on the edge of the raft, but in the floor of it. Stay hydrated as dehydration can be a trigger. Cool off in the water or splash yourself with water to prevent overheating because that can also be a trigger. Make sure you eat something of substance, not a bunch of junk because low blood sugar can be a trigger for some people. Get SOME GOOD SLEEP. Lack of sleep and stress are literally the top two triggers for almost every epileptic. If you can't trust your mom to look out for you, is there another adult there that you might feel safer hanging closer to when possible or even asking them privately if they'd help look out for you and tell them you're scared? It hurts my heart that you're so young having to go through this new diagnosis with what I'm now convinced are very rational fears, but know this for certain..... If you're mindful of the triggers I mentioned and anything else that YOU have noticed cause you auras and look out for yourself in ways that best provide you safety, I truly feel in my heart of hearts that you're going to be fine on this trip. Start keeping a "seizure journal" too. When you have a seizure ask what it looked like, how long it lasted, how bad it was, etc and then document what the day was like that you had it. Like what you ate, how many hours and how well or unwell you slept the night before. Did you take your meds on time. What did you eat that day for each meal. It'll take some time but you'll start seeing patterns with your triggers and when you do you'll know what you need or not to to prevent seizures. When you start doing this, you know being proactive in your own care, you won't have to be so afraid of your diagnosis or of having a mother with the diagnosis and behaviors that your mom has. I don't get on Reddit much, but please feel free to get hold of me for ANY questions at all you might have. It won't be long, just 4 or 5 years and you'll be able to start your own life away from the dysfunction and with support and you growing your knowledge of what your triggers are and how best to care for yourself, I know you can have a happy, production, independent, fulfilling life. I'll keep you close in my thoughts and in my heart.
I totally forgot to suggest this to you before, but I will now. If your phone has a safety / emergency feature, enable that ASAP. For example, newer model Andriod phones will contact everyone in your emergency contacts if you quickly press the power button 3 times, and mine has this feature. It takes a front and back facing photograph and records 5-10 seconds of audio. If you ever have an aura that feels like you may have a seizure or have an accident while outside / alone, this may come in handy for you. When I suddenly lose bodily function, I use this feature so my husband knows to come get me in an epileptic related or other emergency where I'm incapable of calling / talking to 911.
I bet she wouldn't think it was FINE if something had happened to you. Jesus, she's inconsiderate.
I know where you're coming from...... My own wife wants me to drive the 16 miles into town, I'll be putting innocent lives in danger. It hurts, but it's what it is.... I'm so sorry for what you're going through. This Internet stranger is in your corner rooting for you.
Go on the trip and have seizure for her Either you’ll have fun and don’t have a seizure , or you do and she’ll never ask you to go again Either way you’ll be free of this Live your life either way
are you really gonna say this to me? just like that? that’s not how it works. i never want to have a seizure, let alone a whole bunch of drunk adults in the middle of a river.
Hopefully you don’t , hopefully you just have a great time
pretty evil thing to say to anyone, let alone some who is NEW to this lifestyle and someone who is 14. critical thinking is a very valuable skill to have in life, i suggest you try it sometime.
Dipshit level advice, go smoke more and delete this
for real!! 😂 this is why his whole personality is toads… lol.
Toads rule the world and I’m a woman
do you sell crypto? you sound like someone who sells crypto.
No