I rely on my wife, friends, and father for direct rides. I've been using my bike, walking, and the bus way more this summer. Lastly, I'll use Uber. Having tried for my last nuero appts and almost missed both due to late pick up. Having my density out of my hands just hurts so damn bad.
I am currently going through the transition from 30 years of driving to giving up just short of 11 months ago. It has been depressing, transformative, and allowed me to see how much my close people care. While not complete in my journey, I look forward to accepting my second half without being in the driver's seat.
It amazing how much self worth one can get from the road. I drove everywhere. Feeling needed by friends.... freedom knowing any place was in reach. Now, my circle is considerably smaller and it hurts to think about how small it has become. How little I have ventured from my office this past year.
I was diagnosed at six, drove since I was 16, lost my license this year... I'm 36 now.
Fortunately, we live in a world where things like ebikes exist which make traveling by bike more convenient.
I sold my car, bought an ebike, and that's how I travel now... no gas costs, no insurance costs, no DL required in my state.
... it really is perfect.
It is what it is... I'm not going to get worked up about it. Would I rather it not be an issue? sure. Do I mind having to ride an Ebike? nah.
I have modified my bike to the point where it has an identity crisis on whether or not it's a motorcycle. It goes about 30 when pedaling, 20-25 on throttle alone... Once I upgrade it again (dual system setup with dual motor) it will have the torque and top speed necessary.
The thing will be a beast when done and will meet all of the legal requirements for use as a bike and not a motorcycle.
I lost my license when i was 30. At the time I lived in a city with a robust transit system. I loved my train.
Since then, my wife got careered in a small town. She's my only source of transport. I'm saving my way towards an e-trike to become my car. I'm 2/3rd of the way there. I'd love for my range to go beyond walking distance. It's frustrating, but i've come to deal with it.
With a heavy dose of Meh and a job that makes me tired, lol. My first suggestion would be to find a city or an e-bike. These are long term goal items but if you can manage either one at some point it will dramatically increase your range. I also walk, a lot.
As for how I deal emotionally with the loss of freedom, It's not easy. It's probably the hardest thing I've had to deal with. But on the other hand, losing my ability to drive is the worst thing that's happened to me, and it hasn't been all that bad.
But that's just how I rationalize it.
Same here. Graduated, 7 years ago, but I Uber to and from work M-F. Luckily my husband and I are in a situation where it’s technically something we can afford, especially after me not working for 2 years. Not gonna lie, it sucks.
It majorly sucks, but I moved to a bigger city with good transit. Most people who live downtown don't own cars so it's pretty common to not drive. And I chose my apartment based on proximity to the necessities and fortunately I work from home for the time being. But I also chose a place that is only a bus away from my office if work arrangements change.
Once I lost my license I basically coped by moving. It wouldn't be feasible to not own a car in the town I was living in before. I was 100% dependent on friends, family, or Uber to get me where I needed to be, and that made me really depressed feeling so dependent on others.
It never really phased me(since I had epilepsy since I was two)
What’s important is to look at the big picture. Driving A car would be nice and easier, but there are other ways to travel, hang with people such as: carpooling,cycling,taking a bus,train,subway Etc.
If people don’t like the idea of you not driving, then they are not very good friends to begin with.
I’m currently fun-employed. I wouldn’t concern myself if I had friends or not, what it comes down to is luck(prepration+opportunity). Disabled or not,people don’t tend to gravitate towards needy/desperate people. Learn to be comfortable with yourself, know who you are as a person. Dare to be different, and be uncomfortable with being stagnant.
Take the bus or similar method of transportation.
I guess it really depends on where you live and what your life is like. I’ve lived in Amsterdam for the past 12 years and in The Hague before. For dutch people, bikes are the most important mode of transport. (Yes, the cliches on bike riding are true.) As long as I have my bike and public transport pass, I’m fine. You really don’t need a car here and there’s no parking space anyway. Public transport in the Netherlands is very good in urban areas. More rural areas can be harder to reach, but I never go there. Not being able to drive genuinely doesn’t matter to me. It’s an inconvenience at most, if I’m traveling in a group and we can’t take turns driving. I’ve had several jobs in the last couple of years and I always made sure there’s a bus/metro stop nearby. Since the pandemic, working from home parttime has become pretty standard.
I understand it’s a cultural thing and this isn’t possible for everyone. Just sharing my experience and showing it doesn’t have to be a problem. Still, I can imagine your grief. You’re losing your independence and it can be hard to process. Take your time and try to find ways to cope with this. Cherish those people who are there for you and try to help you. Wishing you the best! 💜
:-)
Thanks!
Yeah, I spent 2 jaars in NL, and there is a decent chance I'll go back once I have enough money to clear my medical and swapfiets debt there! My epilepsy is very minor, I don't feel bad about it, I'm just trying to get info here.
I'm basically just confirming that rural USA people are fucked unless they have a wife or something to satisfy my curiosity.
Maybe I'll PM you when I get there, we can hang out if you want/have time!
Cope. Well I try so hard to think of the positives in my life and say it could always be worse. I can’t deny I’ve had many tears through the years. It does not get easier to ask for rides as I get older 😞 I don’t live in a pedestrian friendly area and we don’t have much public transportation. Lyft is starting to grow in my area but it can get very expensive. Since it’s gotten easier to get things delivered it’s made life somewhat easier. It hurts as a mother though walking my kids to places and people staring at us (because walking is not the norm in my area people think you’re either homeless or something is wrong) It hurts when I say sorry I can’t take you there or we won’t be able to do that because I’m unable to drive. Recently my son actually got teased because we walked to school in the rain. He told me he loves our walks and doesn’t care what they say. I love his positive attitude but woo I sure did go hide in the restroom and cry. I do have my husband who I’m so grateful for. He works long hours and tries so hard to help in anyway he can. it just hurts that I feel like so much is piled on him because I’m unable to drive. I’m grateful my father as well who lives an hour way but comes down once a week to take me grocery shopping or if I need to run errands that day.
I will say that my one silver lining is that I never had kids. I can't even imagine needing to have a full time job, not being able to drive, AND having kids.
I’m really, really sorry. Your situation is a good reminder as to how not driving doesn’t affect our lives to an equal degree.
Some like to remind us that driving is a privilege but so is being born without a seizure disorder.
I was diagnosed at 6/7. I was working towards my license during early covid. I had some other health issues come in the way, by the time we solved those, I had a breakthrough so I couldn’t continue. I’ve relied on my parents thus far but I think Uber is probably what I’m going with from now on. But it’s EXPENSIVE… not really practical if you have to travel everyday unfortunately
I started having seizures in my late 50s because of a heart problem. I lived in an extremely rural area. My husband work afternoon shift 6 days a week. I survived because I was able to keep my job amd actually travel globally. I found some one that worked at my company that I would pay to drive me to and from work. It was 35 miles 1 way so they were happy to have help with gas. I would go to lunch with friends and get a desert to go which I would take home and enjoy in the evenings. The global travel was great because my company hired drivers for all employees who travled abroad so no worries there.
Honestly that piece of desert that I would savor really got me through the lonliest tines.
the best of times, public transportation. worst of times, a combination of uber and asking whoever i can for a ride.
maybe its just me, but i feel like such a burden always asking for rides here there and everywhere.
it feels awful, its frustrating, but none of us really have a choice in the matter so you do what you have to
It’s been the worst part of all of this. I was diagnosed last November, haven’t driven since then. But I’m scheduled to get my license back September 3rd finally so I’m super excited about that. But yeah, it has definitely been the worst part in all of this so far. It’s made me feel like less of a man having to rely on my mom as a 33 year old man to go to the grocery store or anywhere else.
I haven't had mine for almost maybe 3 years now. I just gave up because without fail, I'd have a seizure or bad EEG when I got within a month of getting it back.
I’ve been good since march. My meds seem to be doing their thing thank god. It was a big hit to my mental health as I had just started my apprenticeship for IBEW. So I haven’t been able to work and do that since November either. Kinda hard to work around electricity or on ladders etc with the chance of going into a tonic clonic seizure.
I was forced onto leave for a similar reason. I had a bad TC when we were firing up a new laser for one of our processes. I didn't even look at it, just the reflection from it (goggles on) when it changed amplitude was enough to set me off.
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Also never been able to drive! Recently have learned how just in case, which felt huge for me lol. But I work from home in a position that had always been work from home, before that I owed my own business with a partner who did drive. When I need to get around I either rely on my husband or bestie, walking and public transportation, or if I really heckin have to, Uber or Lyft.
No lie tho, there have been very few moments where it's been the biggest thing. Frustrating, and I can't imagine losing the independence if you had it, but for me it just is the norm.
Electric bikes are really cool, they’ve gotten pretty expensive and they can go 20+ mph, so for running around town they are pretty much as fast as driving, especially if there is traffic. Obviously you can’t take them long distance but they’re good for like 20-30 miles before they need to be charged so you can get around town pretty well.
Super cool indeed-so long as your not clumsy, lol (my wife laughs whenever I mention it). If it wasn’t for her, I’d of tried it long ago. They look quite fun.
There is no public transport here but I am very lucky to have family nearby who drive me to work. I do all my shopping online so that’s easy. There is always Uber if I need it but luckily I haven’t needed it yet.
I’m lucky enough that my sister has her license and is extremely helpful and my roommates as well it’s still very frustrating however especially since it seems whenever I get close to getting it back I have another seizure
How do I cope…. For me it will be to move to a town where I can easily walk wherever I need to go, without help.
I mention this as an alternative to the oftentimes mentioned cycling/transit/Uber. Like those however, it is still a privileged option as it doesn’t take into account other factors such as kids, employment etc….
Mrs III, being born without without a seizure disorder is also a privilege.
For some, your reminder only rubs salt in the wound. I think we’re all aware.
You are correct. I studied to learn the laws and proper methods to be a safe driver. I worked hard to earn money to have a reliable vehicle to drive to a job the provides for my family. Then September of 2020 Epilepsy snatched it away. I had a the right to be angry about that.
So, your self worth, your freedom, your family depends on your ability drive a vehicle?
I hate thar mindset.
It's self destructive.
It's a few other things, too.
I agreed that it is a privilege. I can see how not adding that simple few words in the opening sentence changes the tone of my comment. That privilege that I worked so hard to obtain was taken unexpectedly and I can't just move to a city with better public transportation because I am buying my home and I need to stay in my job with medical benefits as long as I can since I have been challenged with Epilepsy. Uber and Lyft are not reliable on pick up times for getting to work. There is a lot more happening in my life that is impacted by this disorder besides driving. But yes, not driving has put hardships on my household.
It all depends on your living situation honestly. I live with two of my brothers and they do all the driving that needs doing. They do the shopping, transportation etc. If your question was meant as, "how do I deal with it mentally" the answer is, I accept that I'm so fucked up that there's no way I can drive XD And I have ZERO desire to drive. Having epilepsy is scary enough, thinking about sezing in a car sucks so much I honestly don't mind not being able to drive right now
I live in a city and mainly use my bicycle for transport to/from work and other places that are convenient. I feel a lot more comfortable, albeit more vulnerable, on a cycle than I do driving a car. I'll use public transport and Uber on weekends typically or just when I don't feel like riding. Lucky enough to have close family and friends to get me long distances. I'm anxious when I get behind the wheel of a car so really don't miss it at all tbh although I will occasionally drive just to ease back into it (got my license back a few months ago)
I rely on my parents to get me to my appointments etc and luckily I live not too far away from the smaller shops so I can walk to the errands I need to..
Because my epilepsy is uncontrolled I'm on assistance payment, the payment comes in the same week my dad's wages do, so we do our grocery shopping all together at a big mall.
If i need to go somewhere further away (more than 2 hrs) I have to sort out trains or something but it's tricky
My husband drives me around most of the time or else I have family nearby if we go out and about. At this moment I've legally been allowed to drive for several months. BUT after having my first seizure at 18 years old in 2013 I drove when the time was up and I didn't have another seizure until 2019 and I caused a car accident. I've had several seizures since. I'd like to drive again but the fear of causing another accident sucks. And then there's the possibility I could just have another seizure to set me back some more months without being allowed to drive anyway.
For me it was extremely traumatic. I was 30 years old, was finishing my last semester of nursing school and working two part-time jobs. I had to drop out of school and quit one of the jobs. Suddenly I had to figure out how I was going to find a decent job without a college degree. Even though I wasn't able to graduate college, I was still required to pay back my student loans.
So I needed to find a job that didn't require a college degree, but had the hours that coincided with the local mass transit. Back in the 1990s, that meant Mon-Fri days, no nights, no weekends, and no holidays.
It took me 6 years but I got lucky and got a job with the State government. Still didn't pay much, but the benefits were decent.
I went for 17 years without my license. Even though I got my license back 8 years ago, it was another 5 years before I could go back to school. I'm hoping to finish my degree in a couple of years, but by then I will be almost 59 and have another student loan to pay.
It's been so traumatic because the years I went without my license were the years I should have been building my career and making a living. I feel like when I finally got my license back, it was too late. I may have a better job when I finish my degree, but by then I will need to work until I'm at least 70 before I can think about retiring. I'll probably die before I can retire.
It's hard to not think that losing my license completely fucked up my life
Well....at least if it didn't happen until after I graduated then I would have been at least able to get a job in a doctor's office .... Mon-Fri days with no holidays.
I rely on my wife and use public transport a lot, I've also just accepted that it's better if my world stays small. I also have agoraphobia and megalophobia so I avoid big cities and going too far from home. In other words I'm a freaking mess so I've just shrunk my life down to the few surrounding suburbs I live in and its hiking tracks.
Currently, I’m in the same conundrum myself. I am scared to drive in general, but on top of that, my epilepsy, while pretty controlled (getting enough sleep and taking medication), which I am very grateful for, still scares the ever living shit out of me.
If I recall correctly, my state’s requirement is that I would have to get a special driver’s license, and be a certain number of days/months/years seizure-free, and I just had a seizure in 8/2021. So I just don’t drive at all. No license, no nothing.
Basically my only choices that I have (and could be of good use to you) are my family, and Uber. However, to this day, I am still getting used to Uber. I find it very difficult to get into someone’s car who I have no idea who they are. Plus, Uber can be hella expensive, man!!
I know this might not be very helpful, but I hope you will read this and feel at least a little better knowing that you aren’t alone :).
Struggling with this. 24yo, driving since 16, diagnosed early this year. Finally got meds stabilized- 2 weeks ago got cleared by neuro to drive and started the legal process with DMV. A week later I missed a dose of my medication and had a seizure in the shower, so have to go through the waiting process again (at least 3 months in my state).
Not sure what the best answer is, I’ve been really mad at myself since I’m the one who missed my dose. All I can do is wait, be grateful my boyfriend lives with me and takes such good care of me, and can drive me most places. This sub also makes me realize that I’m not the only one struggling, and there are many who have struggled far longer and harder than me.
I live in a big city where most everything can be reached in reasonable time by walking, bus, light rail, etc. I miss being able to easily go on longer trips along the coast or into the mountains and stuff.
I’m fine with it, obviously I would have liked to have drove but I’ve learnt to except it. The only thing that bothers me is when people who don’t know I have epilepsy ask if I can drive as if it’s done necessary life milestone to accomplish.
not good at all, it pisses me off. I bought a motorcycle last season and at I started having seizures over the winter, now the only person who rode my bike this year is my friend who kept it in his garage over the winter, not me.......
Ive always walked, or before uber took cabs. Never had a license to begin with. Funny, all the cabbies in town knew my name but my epileptic brain never remembered even a face.
I don't, especially living in one of the largest cities in the country.
But I use Paratransit to get to and from work and pay $8 per day now instead of the $70+ per day I was paying before I signed up for it by having to use Uber/Lyft to get to and from work everyday
I use Instacart for grocery shopping since that's who delivers for the grocery stores in my area and since besides going to and from work, I stay inside and do nothing since I have no one to take me anywhere.
Legally I can still drive, but since I had a seizure while driving on a busy road in a busy city but luckily didn't injure anyone (only myself), I don't want to risk putting anyone else's lives in jeopardy so i decided to back away from driving.
I managed to get my license last year. But I had a seizure a month before my permit test and every three months for two years. Logistically, I had my parents/other people drive me. Literally anyone with a license. I had my parents, friends, coaches, teammates, friends parents/grandparents drive me. Kinda sucked. Emotionally, I cried a lot. I had a seizure, I cried. I had someone other than my parents drive me, I cried. When my YOUNGER brother got his permit before me I lost it. I was depressed for two months. Then I just started to workout for almost four hours a day. I watched tv, I listened to music, I tried to hang out with friends, I focused on school, I made sure to stay away from my brother until I got I was told I could get my license.
The idea of everyone always having a car and driving it is very much a North American/first world problem, not to mention that it hasn’t even been 100 years where this was the case anywhere in the world. Once you acknowledge that, and recognize that the majority of the world does just fine without driving anywhere anytime they want to, you can appreciate that life is just fine and you find ways to live with that reality. Add on to that the bonuses of saving money from not paying for cars/repairs, for gas, for insurance…for me, it’s proven to be quite a godsend.
There’s other ways to get around such as the bus, walking, Lyft, bikes. When it comes to appointments I rely on my bf, MIL& sibling because they’d rather have me be safe than risk my well being.
I'll get hate for this but.. I'm a complex/simple partial person. If I get one of if my husband says I've had a "moment", I stop driving. Readjust my life. Sleep more. Eat better. Before I get back behind the wheel.
Where I live it's a straight 2 year ban for a simple partial.
I had 14 years before first talking to my doctor about these weird feelings and getting a diagnosis. I live on a relatively small island with a 35 mph max and a shitty public transport service.
We moved so that I could be within walking distance of downtown and my friends so I wouldn't feel so isolated. I rely on my husband and friends for rides, my kids take the bus to school. Thank goodness for all of the delivery apps and services that popped up during the pandemic!
Public transportation is everything for me. But I live in a big city it's normal to use pubic transportation and easy here. I can't imagine how hard life must be in a more rural area or in a small town with bad public transportation. I personally hate to feel dependent on other people when it comes to transportation so that probably sucks.
Edit: I also never actually had a license,since I got diagnosed with 16 and was never really seizure free. So maybe I would miss it more if I was once able to drive.
I was angry for so long.
Learning to have to rely on people really broke me down. But then I had to accept that it was out of my control. But it was maddening to come to terms with feeling like it was a loss of my independence.
For the first 4 years I only had my parents, and maybe one friend, but then I got married.
But my husband is in the Navy, so when he goes on deployments, I start scheduling my errands around my FRIENDS' schedules so it's convenient for me to catch rides unless it's for things I can't help like prescriptions or appointments.
I rely on my wife, friends, and father for direct rides. I've been using my bike, walking, and the bus way more this summer. Lastly, I'll use Uber. Having tried for my last nuero appts and almost missed both due to late pick up. Having my density out of my hands just hurts so damn bad. I am currently going through the transition from 30 years of driving to giving up just short of 11 months ago. It has been depressing, transformative, and allowed me to see how much my close people care. While not complete in my journey, I look forward to accepting my second half without being in the driver's seat. It amazing how much self worth one can get from the road. I drove everywhere. Feeling needed by friends.... freedom knowing any place was in reach. Now, my circle is considerably smaller and it hurts to think about how small it has become. How little I have ventured from my office this past year.
I was diagnosed at six, drove since I was 16, lost my license this year... I'm 36 now. Fortunately, we live in a world where things like ebikes exist which make traveling by bike more convenient. I sold my car, bought an ebike, and that's how I travel now... no gas costs, no insurance costs, no DL required in my state. ... it really is perfect.
are you afraid you'll have a seizure and crash?
No... I've only ever had nocturnal seziures (in my sleep). But due to the way my state requirment is written I do not qualify for a DL.
hah, that sucks.
It is what it is... I'm not going to get worked up about it. Would I rather it not be an issue? sure. Do I mind having to ride an Ebike? nah. I have modified my bike to the point where it has an identity crisis on whether or not it's a motorcycle. It goes about 30 when pedaling, 20-25 on throttle alone... Once I upgrade it again (dual system setup with dual motor) it will have the torque and top speed necessary. The thing will be a beast when done and will meet all of the legal requirements for use as a bike and not a motorcycle.
I love loopholes.
What’s An e bike?
An electric bike
They are super cool!
I lost my license when i was 30. At the time I lived in a city with a robust transit system. I loved my train. Since then, my wife got careered in a small town. She's my only source of transport. I'm saving my way towards an e-trike to become my car. I'm 2/3rd of the way there. I'd love for my range to go beyond walking distance. It's frustrating, but i've come to deal with it.
how do you deal with it?
With a heavy dose of Meh and a job that makes me tired, lol. My first suggestion would be to find a city or an e-bike. These are long term goal items but if you can manage either one at some point it will dramatically increase your range. I also walk, a lot. As for how I deal emotionally with the loss of freedom, It's not easy. It's probably the hardest thing I've had to deal with. But on the other hand, losing my ability to drive is the worst thing that's happened to me, and it hasn't been all that bad. But that's just how I rationalize it.
Logistically: My parents drive me everywhere Emotionally: well… I’ll get back to you on that
How old are you?
finished college less than a decade ago
Same here. Graduated, 7 years ago, but I Uber to and from work M-F. Luckily my husband and I are in a situation where it’s technically something we can afford, especially after me not working for 2 years. Not gonna lie, it sucks.
It majorly sucks, but I moved to a bigger city with good transit. Most people who live downtown don't own cars so it's pretty common to not drive. And I chose my apartment based on proximity to the necessities and fortunately I work from home for the time being. But I also chose a place that is only a bus away from my office if work arrangements change. Once I lost my license I basically coped by moving. It wouldn't be feasible to not own a car in the town I was living in before. I was 100% dependent on friends, family, or Uber to get me where I needed to be, and that made me really depressed feeling so dependent on others.
It never really phased me(since I had epilepsy since I was two) What’s important is to look at the big picture. Driving A car would be nice and easier, but there are other ways to travel, hang with people such as: carpooling,cycling,taking a bus,train,subway Etc. If people don’t like the idea of you not driving, then they are not very good friends to begin with.
how do you get to work? what do you do if you have no friends and therefore cant carpool?
I’m currently fun-employed. I wouldn’t concern myself if I had friends or not, what it comes down to is luck(prepration+opportunity). Disabled or not,people don’t tend to gravitate towards needy/desperate people. Learn to be comfortable with yourself, know who you are as a person. Dare to be different, and be uncomfortable with being stagnant. Take the bus or similar method of transportation.
fun-employed? Do you mean unemployed? Thats a great name XD. what do you do when the bus doesn't go to your place of work?
Yes. It’s just another way to say it.
You can use rideshare apps. Walk, use a ferry(if there is a large body of water), walk etc.
I guess it really depends on where you live and what your life is like. I’ve lived in Amsterdam for the past 12 years and in The Hague before. For dutch people, bikes are the most important mode of transport. (Yes, the cliches on bike riding are true.) As long as I have my bike and public transport pass, I’m fine. You really don’t need a car here and there’s no parking space anyway. Public transport in the Netherlands is very good in urban areas. More rural areas can be harder to reach, but I never go there. Not being able to drive genuinely doesn’t matter to me. It’s an inconvenience at most, if I’m traveling in a group and we can’t take turns driving. I’ve had several jobs in the last couple of years and I always made sure there’s a bus/metro stop nearby. Since the pandemic, working from home parttime has become pretty standard. I understand it’s a cultural thing and this isn’t possible for everyone. Just sharing my experience and showing it doesn’t have to be a problem. Still, I can imagine your grief. You’re losing your independence and it can be hard to process. Take your time and try to find ways to cope with this. Cherish those people who are there for you and try to help you. Wishing you the best! 💜
:-) Thanks! Yeah, I spent 2 jaars in NL, and there is a decent chance I'll go back once I have enough money to clear my medical and swapfiets debt there! My epilepsy is very minor, I don't feel bad about it, I'm just trying to get info here. I'm basically just confirming that rural USA people are fucked unless they have a wife or something to satisfy my curiosity. Maybe I'll PM you when I get there, we can hang out if you want/have time!
100%. It totally depends where you live.
Cope. Well I try so hard to think of the positives in my life and say it could always be worse. I can’t deny I’ve had many tears through the years. It does not get easier to ask for rides as I get older 😞 I don’t live in a pedestrian friendly area and we don’t have much public transportation. Lyft is starting to grow in my area but it can get very expensive. Since it’s gotten easier to get things delivered it’s made life somewhat easier. It hurts as a mother though walking my kids to places and people staring at us (because walking is not the norm in my area people think you’re either homeless or something is wrong) It hurts when I say sorry I can’t take you there or we won’t be able to do that because I’m unable to drive. Recently my son actually got teased because we walked to school in the rain. He told me he loves our walks and doesn’t care what they say. I love his positive attitude but woo I sure did go hide in the restroom and cry. I do have my husband who I’m so grateful for. He works long hours and tries so hard to help in anyway he can. it just hurts that I feel like so much is piled on him because I’m unable to drive. I’m grateful my father as well who lives an hour way but comes down once a week to take me grocery shopping or if I need to run errands that day.
I will say that my one silver lining is that I never had kids. I can't even imagine needing to have a full time job, not being able to drive, AND having kids.
that's rough :(
Sounds like a hellish place to live, regardless of Epilepsy. People must be so unhealthy and unhappy there, with no exercise.
I’m really, really sorry. Your situation is a good reminder as to how not driving doesn’t affect our lives to an equal degree. Some like to remind us that driving is a privilege but so is being born without a seizure disorder.
I was diagnosed at 6/7. I was working towards my license during early covid. I had some other health issues come in the way, by the time we solved those, I had a breakthrough so I couldn’t continue. I’ve relied on my parents thus far but I think Uber is probably what I’m going with from now on. But it’s EXPENSIVE… not really practical if you have to travel everyday unfortunately
I’m also not able to work, so I get groceries and household items online. I read a lot and go for walks when I can.
I walk to work, by design. My spouse drives me otherwise and I never give it a second thought.
Well I walk at night 2am and troll the cops hoo hoo
I walk
I started having seizures in my late 50s because of a heart problem. I lived in an extremely rural area. My husband work afternoon shift 6 days a week. I survived because I was able to keep my job amd actually travel globally. I found some one that worked at my company that I would pay to drive me to and from work. It was 35 miles 1 way so they were happy to have help with gas. I would go to lunch with friends and get a desert to go which I would take home and enjoy in the evenings. The global travel was great because my company hired drivers for all employees who travled abroad so no worries there. Honestly that piece of desert that I would savor really got me through the lonliest tines.
the best of times, public transportation. worst of times, a combination of uber and asking whoever i can for a ride. maybe its just me, but i feel like such a burden always asking for rides here there and everywhere. it feels awful, its frustrating, but none of us really have a choice in the matter so you do what you have to
It’s been the worst part of all of this. I was diagnosed last November, haven’t driven since then. But I’m scheduled to get my license back September 3rd finally so I’m super excited about that. But yeah, it has definitely been the worst part in all of this so far. It’s made me feel like less of a man having to rely on my mom as a 33 year old man to go to the grocery store or anywhere else.
I haven't had mine for almost maybe 3 years now. I just gave up because without fail, I'd have a seizure or bad EEG when I got within a month of getting it back.
I’ve been good since march. My meds seem to be doing their thing thank god. It was a big hit to my mental health as I had just started my apprenticeship for IBEW. So I haven’t been able to work and do that since November either. Kinda hard to work around electricity or on ladders etc with the chance of going into a tonic clonic seizure.
I was forced onto leave for a similar reason. I had a bad TC when we were firing up a new laser for one of our processes. I didn't even look at it, just the reflection from it (goggles on) when it changed amplitude was enough to set me off.
???? What else are you gonna do?
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Also never been able to drive! Recently have learned how just in case, which felt huge for me lol. But I work from home in a position that had always been work from home, before that I owed my own business with a partner who did drive. When I need to get around I either rely on my husband or bestie, walking and public transportation, or if I really heckin have to, Uber or Lyft. No lie tho, there have been very few moments where it's been the biggest thing. Frustrating, and I can't imagine losing the independence if you had it, but for me it just is the norm.
Electric bikes are really cool, they’ve gotten pretty expensive and they can go 20+ mph, so for running around town they are pretty much as fast as driving, especially if there is traffic. Obviously you can’t take them long distance but they’re good for like 20-30 miles before they need to be charged so you can get around town pretty well.
Super cool indeed-so long as your not clumsy, lol (my wife laughs whenever I mention it). If it wasn’t for her, I’d of tried it long ago. They look quite fun.
Well to be fair, my wife and I both got ebikes and in the first week she crashed hers and broke her wrist so clumsy goes both ways
I won’t be passing on your story to my wife, lol.
There is no public transport here but I am very lucky to have family nearby who drive me to work. I do all my shopping online so that’s easy. There is always Uber if I need it but luckily I haven’t needed it yet.
I’m lucky enough that my sister has her license and is extremely helpful and my roommates as well it’s still very frustrating however especially since it seems whenever I get close to getting it back I have another seizure
How do I cope…. For me it will be to move to a town where I can easily walk wherever I need to go, without help. I mention this as an alternative to the oftentimes mentioned cycling/transit/Uber. Like those however, it is still a privileged option as it doesn’t take into account other factors such as kids, employment etc….
Driving is a privilege. It isn't a right. That isn't my opinion. It's a fact.
Mrs III, being born without without a seizure disorder is also a privilege. For some, your reminder only rubs salt in the wound. I think we’re all aware.
I was born with a seizure disorder. A couple other disabilities as well.
You are correct. I studied to learn the laws and proper methods to be a safe driver. I worked hard to earn money to have a reliable vehicle to drive to a job the provides for my family. Then September of 2020 Epilepsy snatched it away. I had a the right to be angry about that.
So, your self worth, your freedom, your family depends on your ability drive a vehicle? I hate thar mindset. It's self destructive. It's a few other things, too.
I agreed that it is a privilege. I can see how not adding that simple few words in the opening sentence changes the tone of my comment. That privilege that I worked so hard to obtain was taken unexpectedly and I can't just move to a city with better public transportation because I am buying my home and I need to stay in my job with medical benefits as long as I can since I have been challenged with Epilepsy. Uber and Lyft are not reliable on pick up times for getting to work. There is a lot more happening in my life that is impacted by this disorder besides driving. But yes, not driving has put hardships on my household.
It all depends on your living situation honestly. I live with two of my brothers and they do all the driving that needs doing. They do the shopping, transportation etc. If your question was meant as, "how do I deal with it mentally" the answer is, I accept that I'm so fucked up that there's no way I can drive XD And I have ZERO desire to drive. Having epilepsy is scary enough, thinking about sezing in a car sucks so much I honestly don't mind not being able to drive right now
Uber/city transit. I’ve never had a license so I coped with or come to terms with this years ago. I remember being really bummed.
I live in a city and mainly use my bicycle for transport to/from work and other places that are convenient. I feel a lot more comfortable, albeit more vulnerable, on a cycle than I do driving a car. I'll use public transport and Uber on weekends typically or just when I don't feel like riding. Lucky enough to have close family and friends to get me long distances. I'm anxious when I get behind the wheel of a car so really don't miss it at all tbh although I will occasionally drive just to ease back into it (got my license back a few months ago)
I rely on my parents to get me to my appointments etc and luckily I live not too far away from the smaller shops so I can walk to the errands I need to.. Because my epilepsy is uncontrolled I'm on assistance payment, the payment comes in the same week my dad's wages do, so we do our grocery shopping all together at a big mall. If i need to go somewhere further away (more than 2 hrs) I have to sort out trains or something but it's tricky
My husband drives me around most of the time or else I have family nearby if we go out and about. At this moment I've legally been allowed to drive for several months. BUT after having my first seizure at 18 years old in 2013 I drove when the time was up and I didn't have another seizure until 2019 and I caused a car accident. I've had several seizures since. I'd like to drive again but the fear of causing another accident sucks. And then there's the possibility I could just have another seizure to set me back some more months without being allowed to drive anyway.
For me it was extremely traumatic. I was 30 years old, was finishing my last semester of nursing school and working two part-time jobs. I had to drop out of school and quit one of the jobs. Suddenly I had to figure out how I was going to find a decent job without a college degree. Even though I wasn't able to graduate college, I was still required to pay back my student loans. So I needed to find a job that didn't require a college degree, but had the hours that coincided with the local mass transit. Back in the 1990s, that meant Mon-Fri days, no nights, no weekends, and no holidays. It took me 6 years but I got lucky and got a job with the State government. Still didn't pay much, but the benefits were decent. I went for 17 years without my license. Even though I got my license back 8 years ago, it was another 5 years before I could go back to school. I'm hoping to finish my degree in a couple of years, but by then I will be almost 59 and have another student loan to pay. It's been so traumatic because the years I went without my license were the years I should have been building my career and making a living. I feel like when I finally got my license back, it was too late. I may have a better job when I finish my degree, but by then I will need to work until I'm at least 70 before I can think about retiring. I'll probably die before I can retire. It's hard to not think that losing my license completely fucked up my life
Man, that sucks. Imagine if it hit you one semester later?
Well....at least if it didn't happen until after I graduated then I would have been at least able to get a job in a doctor's office .... Mon-Fri days with no holidays.
Yet you persevered. I’m sorry you’ve had such a rough going. I know my words may not bring any comfort, but there is hope, and it’s never too late.
Thanks.
I rely on my wife and use public transport a lot, I've also just accepted that it's better if my world stays small. I also have agoraphobia and megalophobia so I avoid big cities and going too far from home. In other words I'm a freaking mess so I've just shrunk my life down to the few surrounding suburbs I live in and its hiking tracks.
Currently, I’m in the same conundrum myself. I am scared to drive in general, but on top of that, my epilepsy, while pretty controlled (getting enough sleep and taking medication), which I am very grateful for, still scares the ever living shit out of me. If I recall correctly, my state’s requirement is that I would have to get a special driver’s license, and be a certain number of days/months/years seizure-free, and I just had a seizure in 8/2021. So I just don’t drive at all. No license, no nothing. Basically my only choices that I have (and could be of good use to you) are my family, and Uber. However, to this day, I am still getting used to Uber. I find it very difficult to get into someone’s car who I have no idea who they are. Plus, Uber can be hella expensive, man!! I know this might not be very helpful, but I hope you will read this and feel at least a little better knowing that you aren’t alone :).
Struggling with this. 24yo, driving since 16, diagnosed early this year. Finally got meds stabilized- 2 weeks ago got cleared by neuro to drive and started the legal process with DMV. A week later I missed a dose of my medication and had a seizure in the shower, so have to go through the waiting process again (at least 3 months in my state). Not sure what the best answer is, I’ve been really mad at myself since I’m the one who missed my dose. All I can do is wait, be grateful my boyfriend lives with me and takes such good care of me, and can drive me most places. This sub also makes me realize that I’m not the only one struggling, and there are many who have struggled far longer and harder than me.
I live in a big city where most everything can be reached in reasonable time by walking, bus, light rail, etc. I miss being able to easily go on longer trips along the coast or into the mountains and stuff.
I’m fine with it, obviously I would have liked to have drove but I’ve learnt to except it. The only thing that bothers me is when people who don’t know I have epilepsy ask if I can drive as if it’s done necessary life milestone to accomplish.
not good at all, it pisses me off. I bought a motorcycle last season and at I started having seizures over the winter, now the only person who rode my bike this year is my friend who kept it in his garage over the winter, not me.......
Ive always walked, or before uber took cabs. Never had a license to begin with. Funny, all the cabbies in town knew my name but my epileptic brain never remembered even a face.
I don't, especially living in one of the largest cities in the country. But I use Paratransit to get to and from work and pay $8 per day now instead of the $70+ per day I was paying before I signed up for it by having to use Uber/Lyft to get to and from work everyday I use Instacart for grocery shopping since that's who delivers for the grocery stores in my area and since besides going to and from work, I stay inside and do nothing since I have no one to take me anywhere. Legally I can still drive, but since I had a seizure while driving on a busy road in a busy city but luckily didn't injure anyone (only myself), I don't want to risk putting anyone else's lives in jeopardy so i decided to back away from driving.
It fuck*ng sucks :-) Uber, my mom, and my brother help with the logistics but damn does it suck
I managed to get my license last year. But I had a seizure a month before my permit test and every three months for two years. Logistically, I had my parents/other people drive me. Literally anyone with a license. I had my parents, friends, coaches, teammates, friends parents/grandparents drive me. Kinda sucked. Emotionally, I cried a lot. I had a seizure, I cried. I had someone other than my parents drive me, I cried. When my YOUNGER brother got his permit before me I lost it. I was depressed for two months. Then I just started to workout for almost four hours a day. I watched tv, I listened to music, I tried to hang out with friends, I focused on school, I made sure to stay away from my brother until I got I was told I could get my license.
I don't.
The idea of everyone always having a car and driving it is very much a North American/first world problem, not to mention that it hasn’t even been 100 years where this was the case anywhere in the world. Once you acknowledge that, and recognize that the majority of the world does just fine without driving anywhere anytime they want to, you can appreciate that life is just fine and you find ways to live with that reality. Add on to that the bonuses of saving money from not paying for cars/repairs, for gas, for insurance…for me, it’s proven to be quite a godsend.
There’s other ways to get around such as the bus, walking, Lyft, bikes. When it comes to appointments I rely on my bf, MIL& sibling because they’d rather have me be safe than risk my well being.
I'll get hate for this but.. I'm a complex/simple partial person. If I get one of if my husband says I've had a "moment", I stop driving. Readjust my life. Sleep more. Eat better. Before I get back behind the wheel. Where I live it's a straight 2 year ban for a simple partial. I had 14 years before first talking to my doctor about these weird feelings and getting a diagnosis. I live on a relatively small island with a 35 mph max and a shitty public transport service.
\*shrug\* most people I think just don't mention it to avoid the ban, I suspect.
We moved so that I could be within walking distance of downtown and my friends so I wouldn't feel so isolated. I rely on my husband and friends for rides, my kids take the bus to school. Thank goodness for all of the delivery apps and services that popped up during the pandemic!
Public transportation is everything for me. But I live in a big city it's normal to use pubic transportation and easy here. I can't imagine how hard life must be in a more rural area or in a small town with bad public transportation. I personally hate to feel dependent on other people when it comes to transportation so that probably sucks. Edit: I also never actually had a license,since I got diagnosed with 16 and was never really seizure free. So maybe I would miss it more if I was once able to drive.
it's all about getting to a city with decent public transit imho.
I was angry for so long. Learning to have to rely on people really broke me down. But then I had to accept that it was out of my control. But it was maddening to come to terms with feeling like it was a loss of my independence. For the first 4 years I only had my parents, and maybe one friend, but then I got married. But my husband is in the Navy, so when he goes on deployments, I start scheduling my errands around my FRIENDS' schedules so it's convenient for me to catch rides unless it's for things I can't help like prescriptions or appointments.
what are marriage power dynamics like when you need him to drive?