the closeness of death ... your thoughts?

[droolmonster]

This isn't going to be morbid, exactly, just some thoughts.

I've been thinking a lot about how as an epileptic, I am aware all of the time of how I could die at any moment. It could be SUDEP, or it could just be a seizure at the wrong place at the wrong time. I don't think that other people really understand this. I've been having seizures since I was thirteen, or twelve, that was a long time ago, the end of seventh grade, anyway, since then I have been aware of my own death. Also, my older brother died when I started high school. It was a new school, and I didn't know anybody. He was twenty. My remaining sister is fifteen years older than me. Now she is thirty-six, and my parents are just beginning their sixties. I am just beginning my twenties.

I feel old, and am thinking about how short life is. Especially compared to the entire span of existence. I don't mean human existence. Our existence, compared to the age of the universe, is so miniscule it's ridiculous. The entire age of the human race, compared to the age of the universe, is so miniscule it's ridiculous. Yet I feel old, because I am a human, and can only see what's in front of me, and I have an urgent need to leave something of myself behind, but what, is the question. I think all people feel that, that's why we reproduce even though babies are a pain. Just kidding, I love babies.

Has having this disease changed any of your perception of life and death? Do you prefer not to think about it?

Peace.

 

[dfwtexas]

When I got diagnosed 2 years ago, my neuro told me that I had an additional factor. My seizures are in my partiel lobe..the main factor that is different from other areas of the brain is if you have seizure in partiel lobe, it tends to cause seizures in other parts of the brain at the same time. Neuro explained if I had seizures in two parts of my brain at same time, I would just literally drop dead.
I have outlived 2 husbands (neither had E, one had cancer and one was murdered.). As I approach 50, I have outlived several friends. It just makes me appreciate my life and I really have no fear of dying. I honestly don't think about it unless someone brings it up. I am just too busy living to dwell on it!

 

[neilB]

Well I've never really thought about it much. I have been dealing with seizures for about 8 years now after being hit by a car while riding a bicycle. They do seem to becoming more frequent and as I approach the big 50 it might be something to think about. I would also agree that our "age" is miniscule compared to the universe or even the planet itself. The human species is, in my opinion, the "new kid on the block compared to other species that preceeded us. I also didn't view your post as morbid but I do lately think about having a seizure in the wrong place at the wrong time and it causes a little anxiety but nothing I can't quickly overcome. It will be interesting to hear from other people.
Thanks
Neil
:agree:

 

[Endless]

No doubt, epilepsy is scarey. Especially the feeling of loss of control over one's own life. When I was first diagnosed, mortality definitely crossed my mind.

The odds of SUDFP are quite low. And of those who pass on, half of them it was within their power. fifty percent of those who die of SUDFP tested below the proper level of their anti-seizure meds, which means they weren't taking their medication properly.

http://www.patient-brochures.com/scripts/getfile.php?fid=4244

We have a higher chance of having a seizure while driving, drowning, or another topic we aren't allowed to talk about in here and passing on that way. Still, the chances are low. Anybody on the planet could go tomorrow just walking across the street or sitting in a chair and reading. Not just us.

I prefer to concentrate on increasing my quality of life while I am here, and living the best life I can live. I don't want to waste my energy on thinking about the worst, when I can be applying my energy to the best. Look up! Not down!

 

[Nakamova]

SUDEP is so low on my list of worries as to be non-existent. And having had friends and family die suddenly and not-so-suddenly from a variety of causes gives me a certain perspective. I don't associate my epilepsy with death, but rather with frustration, annoyance, aches...

 

[Meetz1064]

I have

to agree with Nakamova. I have too many other things to be concerned with at the moment, and SUDEP is at the bottom of my list.

 

[Ruth]

to agree with Nakamova. I have too many other things to be concerned with at the moment, and SUDEP is at the bottom of my list.

:agree:

I agree!! You are young and should have a zest for life. Are you depressed right now?

I had epilepsy at your age and it did not bother me. I have continued on with my life. I am 67 years old. I still do not even think of SUDEP.

I still have a positive attitude towards life and always will.

 

[Endless]

Hey, Droolmonster,

Another thought -

Do you have fear seizures? If so, it could be that. Whenever I have one, It makes me afraid of whatever I'm thinking about before or after. I have to consciously think "that was a fear seizure - I'm not really afraid of that thing." If I was reading about Sudden Death at the time, I'd think I was afraid of that thing, and then think about it for days.

Otherwise, we read about all this supposedly scarey stuff. Don't let it get to you. Nothing is going to happen.

 

[Cint]

I've been thinking a lot about how as an epileptic, I am aware all of the time of how I could die at any moment. It could be SUDEP, or it could just be a seizure at the wrong place at the wrong time. I don't think that other people really understand this.

Well Droolmonster,

I guess I have a different perspective than those who replied before me. I am very aware of each and every moment I have here on this earth. I've had temporal lobe epilepsy for 30 years now and they originate from the left temporal lobe, the hardest type to control. I suffered from both CP and TC seizures, morning, noon and night. My first TC seizure happened while I was stepping out of the shower, and when I fell, I fell onto the hot water and lay there, seizing, long enough to suffer 2nd and 3rd degree burns on my back, arm and leg. Had I been home alone, I may not have made it out alive. I was in the hospital for 2 months and had skin grafts and more surgeries.

After I healed from that ordeal, I married and we had children. Then several years later, my seizures returned and when I was having 4-5 CPs a day, I decided to have a temporal lobectomy. I was seizure free for only 14 months and then they came back as TCs along with CPs, not to mention the depression that goes along with temporal lobe epilepsy. And the thoughts of suicide! Also, when my children were young and witnessed a TC seizure, they thought their mother was dying and several times saw their mom taken away in an ambulance when 911 was called.
Three weeks ago I had another burn incident, this time on my hand, while seizing and had to have another surgery, but I am still alive.
The surgeon did tell me he had 3 other burn patients in the hospital due to a seizure!

And now that I have the VNS and on occasion still have a CP seizure, I could have a TC when the battery needs replacement, and if I'm in the wrong place at the wrong time.............onder:

Here is a link that explains who is at risk with SUDEP:
http://www.epilepsy.com/epilepsy/sudep_risk

 

[droolmonster]

I'm actually not afraid of death, I was just thinking about how I could die at any time and how as an epileptic I'm more likely to die than a healthy person.

I refuse to think positively. Why? Because realistically, my life isn't that great. Things could get better or they could get worse, I have no idea. But I refuse to become a victim of false optimism, I like to examine the facts and make determinations based on those facts. If I were rich and famous maybe I would consider thinking positively. But as I see it now, life is a mixed bag. There are good parts and bad parts. And what I'm talking about now, my incurable chronic illness, is one of the bad parts. Sorry if that's off topic.

But also, the post was just about how short life is. Y'all are right though, I'm way too young to be thinking about stuff like that.

 

[skillefer]

Oh my! I have far too much life to live to dwell on the possiblity of death. You see, none of us come with expiration dates tattoed to the bottom of our feet. None of us know when our time is up. Now I can think about that everyday (but that kinda has a tendency to be a bit on the depressing side...) or I can think of everything that there is to do...there's a quote that goes, "The tragedy of life is not that it ends so soon, but that we wait so long to begin it."

 

[Cint]

I have also tried to religiously think positively throughout these last 30 hellish years, with the ups and downs of epilepsy and I'm not afraid of death, either. There were times when I wished I were dead because of the side effects of the meds and/or the seizures and aftermath of the seizures. But when one has a hard to control case, like mine, sometimes it is difficult to think positively all the time. And I think like droolmonster, I'm just being realistic when it comes to my life, considering the seizures, surgeries, and times I've gone status. And then to have the doctors tell you that you are in that 25%, that nothing seems to control the seizures completely, well... I do try to live my life to the fullest.... until the next seizure, be it CP or TC..... or the next bout of depression.... or the next headache.... or accident. I don't dwell on death, just aware it can happen anywhere, anytime and do not take life for granted. It is a gift to all of us! I take one day at a time.

If you check out Riva's Memorial, you'll find that none of those who passed from SUDEP would never have thought in a billion years that could happen to them or they could be taken too soon.

 

[carlos.fonke]

You're not being morbid. I believe it's useful to ponder these topics while you're young so you can appreciate and deal with life better as you age. If you don't deal with the fear of death while you're young, it can motivate everything you do. Unfortunately for many, fear of death is their primary motivation. It's sad to see.

I'm well past my 20s and I also don't think about death much, either. That's not avoidance so much as having checked the task off my list.

 

[dfwtexas]

I do have to say when one of our own family here passes away, it does shake me up. I am still upset over a young man named Jordan from this forum that passed away months ago.

 

[Zoofemme]

I have to say that I think like Cindy does. I've had my own few brushes with death already so I don't fear it but reality says I am at a higher risk becaue of the types of seizures I have, the difficulty in controlling them and the fact that I am alone the majority of the time. I don't dwell on it but it is what it is.

 

[gigi]

huh...sobering subject, as I have had my own brush with static E. Makes ya sit up and take notice. I was a little reckless prior to that. Now, the pendulum has flung/swung to the other side. I am a bit paranoid at times, have become a bit of a health nut. A blessing in disguise I suppose. I want to be in control, and death does not give us that option, to a degree. I have to be careful not to be too fearful of risks, after all that makes life more interesting.:rock:

 

[Ruth]

huh...sobering subject, as I have had my own brush with static E. Makes ya sit up and take notice. I was a little reckless prior to that. Now, the pendulum has flung/swung to the other side. I am a bit paranoid at times, have become a bit of a health nut. A blessing in disguise I suppose. I want to be in control, and death does not give us that option, to a degree. I have to be careful not to be too fearful of risks, after all that makes life more interesting.:rock:

Gigi, being in control is an option. Eating healthy, exersise and thinking positive, driving carefully, wacthing the signal lights when crossing a street and wearing a seat belt. I keep my mind off of death and keep my mind on life. I take one day at a time.

Yes, I have had a few status E, where the doctors thought I was going to die. I thought to myself that I am going to fight it. I have always thought positive for 61 years.

 

[foreverdark]

I am now 34 years old and I have never feared death. Obsessed yes, but never feared it. As I write this I am aware that the next word could be my last or my next. You could die in the next thirty seconds, 30 minutes.... I honestly don't care when it happens so long as I'm alone when it does

Death is like life, it is as inevitable as it is eternal. It will be one month tomorrow evening at 5:28pm that my mom passed away. I loved her desperately but she feared this whole subject. Wouldn't even acknowledge it for all the money in the world. My dad has had 4 - 5 heart attacks she had diabetes and cardiomyopathy and then I was diagnosed with E. She feared it for not herself but all her loved ones and in the end it killed her because her desire to keep everyone else from dying her body suffered. All this "everyone before me" came on full bore when her mom died in '99. SO seeing as how I've rambled to much again...

focusing on the gloom and doom of death, as you are by "I refuse to think positively" is just as bad as obsessing about and fearing death. Yeah, you will die and yes that fact is heightened by your E but why not exist to live instead of living to exist? Life would be to boring without the good and bad parts of it, or at least that's what I think. You aren't to young to think about this subject. Like someone said, accept, deal with and confront it head on at a younger age and it will not consume you later in life as it did my mom.

 

[valeriedl]

My husband just finished up with chemo and radiation for cancer. The drs tell him that they really can't consider him "cancer free" for at least 5 years. All that he's been thinking about lately is dying. He's been moping around the house crying and telling me that he can't be dead because he's got to be there to take care of me.

He's depressed too because he's been the one that is taking care of me, as I said above, but now I'm the one that is taking care of him. I keep telling him not to worry about it, that I don't care! He's been there for 6 years for me so now it's my turn.

I keep telling him that I could have a seizure at any time and how know's what will happen after it, but I don't worry about it, I've got better things to be doing.

I visit family, go out with friends as much as I can and if there is something that I can volunter at I'll do it so I'm not just sitting at home alone with nothing to do but think about things.

I'm a positive person to begin with. I love to laugh and tell jokes, even if people don't think they are funny.

I could go at any time, and it doesn't have to be with having a seizure so don't just sit there and worry about it, I know you have better things to do!!!!

 

[drarvindr]

Dear droolmonster - no offense , but What's with the sudden nihilism?. YOU'RE IN YOUR TWENTIES FOR GOD'S SAKE . As a doctor , i can say with certainty the things most likely to kill you at your age ( even given the epilepsy) are car accidents. Are you going to stop going out? My story isn't all that different from yours. i was diagnosed in 7th grade too and my dad is a cancer survivor.I'm in my twenties(OK OK ... LATE twenties). You have got to get out there and live to the fullest.Anyway , a few quotes to make you feel better about it all
"Live as if you were going to die tommorrow. Learn as if you were going to live forever"
Gandhi
"Funny isn't a guy on the street slipping on a banana peel. Funny is a guy carefully stepping over the peel - and falling in the gutter"
Charlie Chaplin.