Understanding Alice
shadesong was the one who wrote this, and I have thought similar thoughts on and off ever since that day in January 2006 when I was diagnosed. But she said it and I credit her.
****
And, y'know, I know that I have something that kills people. I know that I could drop dead any day. I try not to think about it; I try not to dwell on it. I'm not in denial about it. Thing is, I want to live .... Living includes loving - finding love everywhere, loving hard, loving with everything you've got, because everyone needs love so damn much. There is no such thing as too much, and some never, ever get enough. Living includes being fierce and not being a pussy and doing what you want to be doing, doing what you need to be doing, and doing it now because there may not be a tomorrow. And if there is? Well, there's more to do then.
And living a finite life means burning as brightly as you can while you're here. It means being a firework so goddamn big and bright that everyone who sees your life will have it burned onto their retinas for a few seconds, burned into their brain, jawdropping BANG of pure joy.
Happy Harry Hardon said "Talk hard." I say "Live hard." Live hard and bright and full, and take it to the limits, and when you hit the limits, cross them, and flip off the guards on your way through. Do something no one's ever seen. Be something no one's ever seen. You're not going to be here forever either. Make it count. Be you. You're the only one who can do you justice.
Do not just exist. Don't say I'll do it tomorrow.
"Live" is a verb, too.
And, y'know, not that I'm expecting to die anytime soon, but in the likely chance that y'all are still around when I do, this is what I want you to do, rather than get all weepy: I want you to go out and do something you've never done before. Something you've always wanted to do, but were putting off til next week, next month, next year, when you have money, when you have time. I want you to go out and do it. Cry me no tears. Send me no flowers. Do something joyful and extravagant.
Don't wait til I'm gone. Do it now.
****
After I read this post of hers, I cried for a bit, and then I thought. I thought long and hard. I thought back to my very first tonic-clonic seizure (early October 2001, in Lex's basement, on the couch, around 5:30 AM, scared the living shit out of Adam and Beth and Lex and Erin and that's how Beth and I technically met by the way). I thought, what if? I thought, it is unlikely, but I may one day go into status epilepticus. Non-convulsive would be scarier, complex partial status epilepticus, CPSE. Because it could go on for a while before anyone noticed.
I take my meds faithfully. I talk with my neurologist and my physician regularly. I ask them what they think of supplemental stuff like the herbs gotu kola and passionflower, and the amino acid supplement GABA, and yoga and meditation, and nutrition. I read. I research. I join support groups. I reach out.
And I try and explain. And I try to educate. A lot of people still don't realize how complex epilepsy is. I read a random comment in a community recently: "The OP absolutely does not need to go to their doctor and say they might have had an epileptic seizure. People are unconscious during seizures like that-- the OP remembers it, therefore it wasn't a seizure." And I thought it was quite ignorant. But I understood. There is still that widespread belief that someone having a tonic-clonic seizure could not possibly be conscious or aware in any way. Do you have any idea what it's like to be conscious, even slightly, during an intense seizure? You do think you're dying.
I had three intense seizures in three weeks. Friends have offered theories, but the culprit has been stress. Plain and simple: I've been stressed. Maybe even a tad depressed. Highly emotional. It happens. Medication does its best to control and prevent. But medication cannot cure. Not completely. And my medication has been working extremely well. However, stress is a superpower, a creature that eats reality and destroys thought. Stress consumes the best-laid plans of prescriptions.
Now, I am not stressed. I have no reason to be currently stressed. So I am okay.
But that post from shadesong still got me thinking.
And you know what?
It's all good.
It's all going to be fine.
Thanks for listening.
****
And, y'know, I know that I have something that kills people. I know that I could drop dead any day. I try not to think about it; I try not to dwell on it. I'm not in denial about it. Thing is, I want to live .... Living includes loving - finding love everywhere, loving hard, loving with everything you've got, because everyone needs love so damn much. There is no such thing as too much, and some never, ever get enough. Living includes being fierce and not being a pussy and doing what you want to be doing, doing what you need to be doing, and doing it now because there may not be a tomorrow. And if there is? Well, there's more to do then.
And living a finite life means burning as brightly as you can while you're here. It means being a firework so goddamn big and bright that everyone who sees your life will have it burned onto their retinas for a few seconds, burned into their brain, jawdropping BANG of pure joy.
Happy Harry Hardon said "Talk hard." I say "Live hard." Live hard and bright and full, and take it to the limits, and when you hit the limits, cross them, and flip off the guards on your way through. Do something no one's ever seen. Be something no one's ever seen. You're not going to be here forever either. Make it count. Be you. You're the only one who can do you justice.
Do not just exist. Don't say I'll do it tomorrow.
"Live" is a verb, too.
And, y'know, not that I'm expecting to die anytime soon, but in the likely chance that y'all are still around when I do, this is what I want you to do, rather than get all weepy: I want you to go out and do something you've never done before. Something you've always wanted to do, but were putting off til next week, next month, next year, when you have money, when you have time. I want you to go out and do it. Cry me no tears. Send me no flowers. Do something joyful and extravagant.
Don't wait til I'm gone. Do it now.
****
After I read this post of hers, I cried for a bit, and then I thought. I thought long and hard. I thought back to my very first tonic-clonic seizure (early October 2001, in Lex's basement, on the couch, around 5:30 AM, scared the living shit out of Adam and Beth and Lex and Erin and that's how Beth and I technically met by the way). I thought, what if? I thought, it is unlikely, but I may one day go into status epilepticus. Non-convulsive would be scarier, complex partial status epilepticus, CPSE. Because it could go on for a while before anyone noticed.
I take my meds faithfully. I talk with my neurologist and my physician regularly. I ask them what they think of supplemental stuff like the herbs gotu kola and passionflower, and the amino acid supplement GABA, and yoga and meditation, and nutrition. I read. I research. I join support groups. I reach out.
And I try and explain. And I try to educate. A lot of people still don't realize how complex epilepsy is. I read a random comment in a community recently: "The OP absolutely does not need to go to their doctor and say they might have had an epileptic seizure. People are unconscious during seizures like that-- the OP remembers it, therefore it wasn't a seizure." And I thought it was quite ignorant. But I understood. There is still that widespread belief that someone having a tonic-clonic seizure could not possibly be conscious or aware in any way. Do you have any idea what it's like to be conscious, even slightly, during an intense seizure? You do think you're dying.
I had three intense seizures in three weeks. Friends have offered theories, but the culprit has been stress. Plain and simple: I've been stressed. Maybe even a tad depressed. Highly emotional. It happens. Medication does its best to control and prevent. But medication cannot cure. Not completely. And my medication has been working extremely well. However, stress is a superpower, a creature that eats reality and destroys thought. Stress consumes the best-laid plans of prescriptions.
Now, I am not stressed. I have no reason to be currently stressed. So I am okay.
But that post from shadesong still got me thinking.
And you know what?
It's all good.
It's all going to be fine.
Thanks for listening.