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Fear
Sept 16, 2006 16:57:10 GMT -5
Post by fourstar on Sept 16, 2006 16:57:10 GMT -5
Do you have fear of having seizures in public wether it be absence or grand mal?
When I had a grand mal on the train in NYC at rush hour no less. Somehow the pple got me off the train and when I woke up I was sitting next to a policemen. Who told me I had a grand mal. I asked him where my book bag was,(I was on my way to college) he said it was safe,next to me. Than the medics took me to the er and my parents came and too me home.
The next day my dad (my best friend) told me I had to go back on the train to make sure I had no fear of the seizures and public. I went back to college .
Another time when my grand mals disappered and now i Had absence where I took strolls. I got on a bus coming home from the NY Epilepsy Assoc (name changed,now political reasons) and didn't pay . Just sat down and everyone was looking at me . I am sure in retrospect I must have been sniffing and staring into no where. I kept wondering why are these pple looking at me. I get off at the next to last stop and the driver said to me when I was leaving its ok you don't have to pay. I said I paid and checked my pocket for change and their was my money for the bus,that my mom gave me. I was so embarassed, I told him I must have had a seizure and showed him my ID. and tried to pay. Now this NY bus driver was embarrassed and wouldn't let me pay. Apologized for not being aware and asked me if I needed any help. I said no and again tried to pay but he refused. I left and went home.
Many years later in Montreal after being sz free for over 15 yrs I had a grand mal in the shower where I swam daily. I love swimming. The life guards took care of me and took me home. I kept asking them were they going to ban me from the pool. They kept saying NO. The next day I baked them brownies and brought them to the pool and thanked them for their kindness. I told them I had to go back in the pool or fear would over take me. They agreed and told me because I had a blackeye I had to use the kickboard till I healed. Which I did.
Attitude is everything, you need that to fight the fear. Thanks Dad!!!!!!
Riva
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Fear
Sept 17, 2006 12:30:33 GMT -5
Post by Mandi on Sept 17, 2006 12:30:33 GMT -5
Hey Riva - I had a huge issue at first with fear concerning seizures in general, but especially having a seizure in public. There were many reasons for this... Would I get hurt? Would anyone help me? Would people just laugh? Would I make a fool of myself?? On and on and on. Thankfully I've gotten to a point now where it doesn't bother me to get out. I avoid certain things that I know can be triggers for me, but otherwise I am living my life. Living in fear means you're already dead.
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Fear
Sept 17, 2006 13:37:37 GMT -5
Post by fourstar on Sept 17, 2006 13:37:37 GMT -5
Hi Mandi: I was controlled half my life so when I did have seizures ,it was anever a big deal and when I lost control, my dad encouraged me to go out."life goes on" MY friends and neighbhors were great in NYC and Oregon. Montreal I more or less withdrew into myself,except for the swimming when I got better control. My Dad wouldn't accept that way,it was giving up. We aren't quitters. SO out I went. I am so lucky to have had such a great influence.
In todays magazine section of the Oregonian it asks "If you had one day to spend with someone who gone......Who would it be and What would you do? I thought about that my dad is lost to alzhimers, my mom passed . But I would like to spend the day talking to my childhood nuerologist. I never met anyone who ws his equal in teaching their patients to be independent. And I have been thru alot of Drs.
Riva
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Fear
Sept 18, 2006 14:16:40 GMT -5
Post by heidihope on Sept 18, 2006 14:16:40 GMT -5
Sometimes I'm still afraid of going out somewhere and having a seizure. I still go; that whole 'back in the saddle' approach. The hardest for me is being with my family, b/c I care about them the most, and I don't want them to have the experience of seeing me in a full seizure. Absence ones are okay; they've seen those pretty much my entire life, or at least it feels like it, since Jr. High. My worst was having one in an airport, but I've learned that most people are really understanding about it, and genuinly want to help. I used to hate that, I never wanted help, never wanted anyone to see, but now I accept it, it's just part of my life. If you know me for long, with seizures being as uncontrolled as they are now, you are going to experience a seizure episode, and I'd rather have it out in the open. The most frustrating for me is when people find out, and they want to be my friend, but it feels like they're there just to be donating time to a good cause. Like people who say they aren't racist b/c they have a friend who's black. It doesn't mean anything, it just makes them feel better about their life, that they are somehow a better person b/c they have a friend with a disability.
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Fear
Sept 18, 2006 17:54:50 GMT -5
Post by fourstar on Sept 18, 2006 17:54:50 GMT -5
Heidi do you really think pple want to befreind you to have a handicapped friend? ? Maybe thats your fear ? Riva
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Fear
Sept 20, 2006 21:09:00 GMT -5
Post by Mandi on Sept 20, 2006 21:09:00 GMT -5
Heidi - I've been there too and thought those things. The fact of the matter is you're going to be able to recognize if your friends are there for you or just for a pity party. Those there for the wrong reasons can easily just be kicked out the door.
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Fear
Oct 2, 2006 13:07:08 GMT -5
Post by heidihope on Oct 2, 2006 13:07:08 GMT -5
I had a gal I worked with, before I started having seizures, and we barely spoke to each other. Worked well together, but not what I would really call friends. Then I had a seizure at work, and all of a sudden she was a leach. She would go back to work after hanging out with me, and tell EVERYONE if I had any problems, and how she was able to be there to help, and how wonderful it was that she just happened to be available. Then you get the ones who find out from another friend that you have a problem, and they feel like they have to be your friend, b/c otherwise they're being cruel or uncaring, and they don't want anyone to think that they aren't your friend b/c you have a problem. So yes, I really do feel that way. I have a lot of really close friends who are genuine, but you're right, one of my fears IS being treated differently. There are days I can't walk without a cane, can't stop my arm from spasming and hitting myself, can't get words out straight or focus on a conversation. I have an IQ of 153 and I get treated like I never managed tying my shoes. And I hate that. More than anything - I HATE THAT! I used to take the bus, and I'd get stared at while I was twitching, and get those "I feel sorry for you, sweetie" stares, and it was so hard for me to not feel angry. I still feel angry. Right now I am incredibly angry. I'm terrified I'm going to die before I turn 30, and I'm pissed off at other people who take life for granted. I hear their petty complaints and I want to scream at them, to remind them of everything they can do, every single day, w/o a second thought, that I can't do, or struggle to do. Everyone sees me as so incredibly strong, b/c I usually handle things so well, and keep such a positive attitude, but lately I can't find that attitude. I'm afraid and I'm angry. And I hurt.
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Fear
Oct 4, 2006 12:15:08 GMT -5
Post by Mandi on Oct 4, 2006 12:15:08 GMT -5
Heidi... I'm right there with you right now. I get extremely aggrivated at people who treat me as though I'm a child and can't do anything myself. I'm not incredibly book smart, but I am an intelligent girl, and I know when I need to take medicine or when I need to do other various daily things. I hate pity and people treating me like I'm broken. It gets on my last dang nerve.
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Fear
Oct 4, 2006 15:32:59 GMT -5
Post by fourstar on Oct 4, 2006 15:32:59 GMT -5
What I have found when I was going thru a bad spell of time, I had this mantra, Epilepsy is not excuse and enjoy my day the max.
I wouldn't allow anyone to pity me, cause I would ask them to look at themselves first. My good days were enjoyed to the max.
I would tell myself I will find a way out of this mess and I did . Determination, Courage of your Convictions,Character will allow you to live your life to the fullest. I would talk to pple on other boards, they went to Univ, with szs, they sold their art,poetry, they lived to the max of their ability and one thing we all had in commonn is "never give up". Attitude is everything
Heres to us !!!! PPle with courage, inner strength, determination and attitude
Riva
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Fear
Oct 6, 2006 14:02:53 GMT -5
Post by heidihope on Oct 6, 2006 14:02:53 GMT -5
A positive attitude always helps. I think too many times in my life though, I've tried to be overly positive on the outside, while inside wanting to scream at everyone. It's awesome when you can honestly feel 100% upbeat, but right now I'm trying to let it be okay that I'm angry, and I hurt. It's not a funk I'm staying in, and I only broach it during times where it's appropriate, so I'm not lashing out at others without warrant, but it feels good to be real about it. I've gone through a lot the past few months, and there's something to be said for allowing myself to express the negative emotions. I know how to 'be positive'; I've been trying to perfect the technique since I was a kid. Now I'm working on 'being real'. I don't mean to be offensive, or bring down anyone's good cheer, it's just where I am right now. Mandi, I'm glad to hear that you've been there. I wish you hadn't gone through it either, but it helps knowing that I'm being normal. Of course, normal's just a setting on the dryer, but it helps to know I'm not alone in my frustrations. I'm going on a road trip for the weekend, by myself, to visit some family. Talk about fear. I've only been driving for about two months, just around the town where I live, with one road-trip with Josh last weekend. I love the feeling of freedom. I never had my license taken away, I was just afraid to drive. So I'm conquering it, and being careful and responsible. But I'm nervous. It's never easy to conquer fears, even when they are things everyone else takes for granted.
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Fear
Oct 6, 2006 15:21:03 GMT -5
Post by Mandi on Oct 6, 2006 15:21:03 GMT -5
Heidi hun... I'm extremely proud of you for recognizing your anger. You're so right... Anyone can learn to be positive, but really accepting your anger and hate and resentment is the only way to come complete full circle. I say experience your pain. It can only help you grow and teach you your lessons.
Have an excellent time on your trip this weekend. I'm sure you will have a blast. Be safe, I know you will. Come home soon and let us know how it went. I will be thinking of you hun.
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Fear
Oct 6, 2006 22:50:50 GMT -5
Post by fourstar on Oct 6, 2006 22:50:50 GMT -5
Heidi: have a great trip and enjoy the process of overcoming fear of driving. That is something I could never overcome. I had a bad experience go karting and swore I would never drive and froze when my husband tried to teach me.
Heidi please excuse me, I wasn't saying not to feel what you feel. Your entitled to your feelings, I just wanted you to fight the fear and understnad your not alone fighting. we have all overcome huge obstacles and pple in our lives who had nothing but negative effects. I have been furious,ready to murder but I felt it ,expressed it and than tried to enjoy the moment and not let it control me. I guess thats all i was trying to say (((((hugs))))))) wishing you a sz free life filled with joy and hapiness and lots of love Riva
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Fear
Oct 8, 2006 20:59:51 GMT -5
Post by Mandi on Oct 8, 2006 20:59:51 GMT -5
Thinkin of ya Heidi... Hope you had a fab weekend. Stop in and say hey and let us know how it went.
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Fear
Oct 20, 2006 10:47:26 GMT -5
Post by heidihope on Oct 20, 2006 10:47:26 GMT -5
I've now had two fab weekends! Make that three. I hiked Palousse Falls, I drove to Walla Walla by myself, and this last weekend I went hunting with Josh, hiking about 15 miles overall. I have been doing really well. The anger subsides the more I chose to be active. The pain is still really fresh. Next week I have to have minor surgerey. I miscarried earlier this year, and the abortion was incomplete, so they have to go in and do it themselves. The good part is they think the reason for all the more recent problems being so strong is due to the hormones being screwed up from this. So maybe being better is right around the corner this time. I'm trying to keep my chin up, but I just feel like crying. My two best friends got pregnant at the same time, and their babies are here, happy and healthy. I am so excited for them, and at the same time don't want to be around them.
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