Being Alice: She Is My Own Brain
If you are with me in person, and I suddenly yell out and fall to my hands and knees and scream, do not be alarmed. Gently help me stand and help me to a soft place to recline. I may be unable to speak properly, and I may be unable to remember certain things. I may lick or bite my lips, I may scratch myself or pull my hair or vocalize oddly. Take me in your arms and say comforting words. If I start crying, let me cry. Tell me everything is all right. Kiss me gently on the forehead. Offer me tepid water, or coconut water, or juice, or tea. I will need to be hydrated. If I get up and start stumbling around, take my hand and follow me. If I head toward a bathroom, help me in; I will most likely be able to take care of things on my own, as it will be a very automatic process. When I am done, lead me back to the couch, chair, bed, etc. Continue to hold me or hold my hand. I may be very dysphasic and emotional. I may also be very empathic, so do your best to stay calm, with a good bedside manner. Offer me foods like fruits, crunchy bacon, pastries, dairy, vegetables, protein. No bread; I might choke.
If I start speaking oddly in a very intense manner, it may be due to one of my spirit guides helping me speak. Serena, Amara, or Amber, since Alicia can't speak outside the rabbit hole, looking glass, and Wonderland forest that directly affects my epilepsy. Serena helps me through chronic pain and fatigue. Amara helps me through any psychological distress such as anxiety, depression, and fear. Amber monitors my entire consciousness and soul. There are reasons they are named their names. These guides are fictional characters I created long ago, characters who took on their own "personalities" to become a sort of overall coping mechanism. While Serena and Alicia remain deep inside my psyche, Amara or Amber may speak through me and alongside me to work my mouth and voice if needed. You see, Amara and Amber have been with me in various forms since I was born; my brain created them in my intense creative imagination as purely fictional ways of coping with my life. Serena and Alicia came later, as ways to continue fueling that creativity. These girls are not real, but they are certainly helpful.
After I am affected by a seizure, I may also be affected by various complexities from spastic ataxic cerebral palsy: fibromyalgia, sensory processing disorder, synesthesia, hypersensitivity, ADHD Inattentive and Over-Focused Types, Obsessive-Compulsive Disorder, hypertonia, hemiparesis, hemiplegia, severe anxiety or even actual panic, problems speaking and moving, drooling and possible gasps, choking sounds, or odd vocalizations, memory disintegration, spasms, emotional outbursts. Try to not be surprised. This is technically normal for me. You can ask me questions and I may reply one way or another
Complex partial seizures via temporal lobe epilepsy are different for most epileptics. For me, having cerebral palsy, these seizures can be extremely fascinating and bizarre.
I will add that this all happened approximately an hour before I wrote this, and the main reason I was able to type this out was because Amber and Serena helped. My body and mind are both in an altered state. Reality is swimming right now. I just banged my arm against the wall, and the only reason I felt it was because of that part of my brain that is still processing the outside world.
Yes, please ask me questions of all kinds. Nothing is off limits. Speaking out helps me understand my own brain and my own intense neurology.
***
Edited to add:
I just got a really fascinating comment on Facebook since I copied this whole post there. I'm going to post the person's comment and then my comment. I'm still not sure what to think. Was I too harsh in my reply? Also, I still don't know what sort of point they were trying to get across:
Them:
'Ok not trying to be rude but who are you seeing for counseling? Because quite frankly if you are feeling that way it might help to talk to a professional. And if you are seeing one they frakking suck. No one should have to vocalize these feelings on line. You need an outlet. Life sucks for all of us. We work our asses off thanklessly all day long. Some at jobs. Some at home. Everybody I know is dealing with the mental/physical breakdown of being an adult. I will be happy to help in any way i can but I DON'T know how to help you!!! I come home from work every day in physical and emotional pain. And ya know what it is par for the course! I do not have the same physical limitations you do but I do have arthritis/ 10 hr days/ mega PTSD and bad joints!!! And i deal with it because i have to. What do you need that you are not getting that your friends can help you with!!! I will never say you are ok. Or should be ok. I will however say that none of us are. And we all have to work with the hand we are dealt and either make something of our lives or succumb to the negatives. What can we do to help you!!!?'
Me:
'First of all, wow. What?
Second of all: My psychotherapist is actually wonderful. She is perfect for ME. She doesn't "frakking suck" - in fact, within the span of two years, she has helped me open up to many things I never would have imagined, helping me heal myself from within.
The reason I vocalize this online is because I am a disability advocate, as well as an advocate for epilepsy, cerebral palsy, and fibromyalgia. Friends have actively requested that I post my experiences on Facebook and blogs. That is the only reason I am willing to talk about it publicly. I have learned that keeping silent means that others feel alone, lonely, and desperate; many of them feel that they have no one to talk to.
I don't post this to actually ask for help; I post this to help people with similar disabilities understand and share. I am honestly not sure what you're getting at. You're not being rude; I am just very puzzled. I am perfectly aware that everyone has problems. There are people who are much much worse off than me. There are people who may never talk about their pain online and that's just fine.
This is not the Suffering Olympics. This is not My Pain Is Worse Than Your Pain. This is not an example of You Think That's Bad? Check This Out!
This is I Am Sharing A Personal Experience So Others With Similar Issues Can Understand And Share Similar Experiences.
Are you trying to tell me that I shouldn't talk about my disabilities on Facebook? If you are, get in line. I did not realize that you had such an issue. I wish you would have come to me sooner, maybe in a private message. But I suppose this is a good way to get it out and a good way for both of us to talk about our feelings. You have chronic pain. You handle it your way. I have chronic pain. I handle it my way. Good for both of us. Why would I ask for help on Facebook? Most people I know don't even live close enough!
As far as this actual post... it was in reply to someone's request. How do I feel during and after certain seizures? What are things that I do? If a friend is with me, what can they do? This has absolutely nothing to do with my asking anyone for help. This is a clinical, simple way to explain what happens. If it bothers you, feel free to tell me. But I'm not going to change what I do or why I do it.'
Them:
I am in no way shape or form trying to be critical and my apologies if it came across that way. But I have many friends who have similar disabilities (some less some more severe) and I don't see them in nearly the physical/emotional pain you seem to experience all the time. I don't know if it is just that you talk about it more (and if that is how you cope then that is awesome for you) but to me you just seem SO focused on the pain and the negative impact of your condition that (and this comes purely from an associates degree in psychology which is worth practically nothing) that in some ways you could be making it worse for yourself. Look... I worry when people I care about are in pain. Especially constant pain. If you had a friend who was depressed and all they seemed to do was talk about how depressed they were and how much their life was misery you would reach out and encourage them to seek help right? I know what you are experiencing is not depression. But it is worriesome to outsiders looking in when they see a friend who seems to be so focused on the hard parts of their life. I'm not the type to beat around the bush. My apologies for being so blunt. But we have had too many friends of ours recently 'reach out' without ACTUALLY reaching out who ended up taking extreme measures and I just wanted to make sure this was not some cry for help that we were missing. In my own blunt caustic way this is me trying to be a friend and make sure that you are ok.
Me:
Thank you, but this is always how I have dealt with my issues. This was not a cry for help. I am not focusing on any negative - I am literally talking about my life so my friends who want to know can read. This was nothing more than a post about one epileptic seizure. Not depression. I am just wondering: if you have been so worried, why did you wait until now to make a comment on a simple seizure post? Why didn't you write me a private message? Or comment on an actual depression post? You're trying to compare me to people who have extremely different ways of dealing with their issues. I am not them. I am not you. I am me. And I am my own cope. This is how I cope. This has always been how I cope. But if you've been reading my posts for this long, you should have known that I never post desperate cries for help. If I need cheering up I ask to be cheered up. Otherwise I send people private messages asking how they cope. And in case you didn't know, none of my posts are ever secret cries for help. They are "This is what is happening right now" posts. And nothing more.
See, I've never been fully negative. I'm not going to apologize if all my posts seem like that's all I talk about. I'm not going to put smiley faces in every status post just because people think I can't shut up about things happening in my life. I don't think you know me very well. I am well adjusted. I am very happy. There is nothing in my life that is falling apart. If I need to reach out, I really really do reach out. In fact, I don't shut up about it. In fact, my friends actually tell me to stop talking when I pause for breath. I actively seek help. I have seven freaking doctors. I have a mom I talk to all the time. I am in no shortage of help. And I am certainly not draping any of my Facebook posts in thin cries for help. I'm actually slightly offended, because the friends who know me best know very, very well that if I wanted to cry for help, I would email them, pick up the phone, or go to them and physically cry until I felt better. Why would I do that in public on Facebook? What's the point? Like I said, I'm a disability advocate. That means I talk. A lot. In public. Where people can see what I'm going through. I also have blogs. Where I talk. A lot. In public. Where people can read. Facebook is simply a smaller outlet - I know a lot of people here who WANT to know how I am.
You see why your comment left me so confused? I have no memories of our actual friendship, then out of nowhere you start scolding me in a clinical epilepsy post about how I seem to focus on the negatives.
I should add that my issues are certainly not negative. My life is a fantastic dance. My personal disabilities are bumps on the dance floor.
How about the next time you want to worry, please look for a post where I say I am actually depressed - not a seizure post, please.
UPDATE!
She messaged me privately finally and also apologized in my public post. We were all right - she was overly stressed and in pain personally, and she had an intense knee jerk reaction to my seizure post. Since she was going through some incredibly painful mental things, she projected onto me. Her apology was so sincere that I was more than happy to chat and relate and ask if *I* could help *her* in any way. I mean, this does not excuse her behavior, but it does help me understand WHY.
***
Yeah, sometimes I forget that people just don't... don't click. And I'm realizing that sometimes people who think they're my friends really are not.
If I start speaking oddly in a very intense manner, it may be due to one of my spirit guides helping me speak. Serena, Amara, or Amber, since Alicia can't speak outside the rabbit hole, looking glass, and Wonderland forest that directly affects my epilepsy. Serena helps me through chronic pain and fatigue. Amara helps me through any psychological distress such as anxiety, depression, and fear. Amber monitors my entire consciousness and soul. There are reasons they are named their names. These guides are fictional characters I created long ago, characters who took on their own "personalities" to become a sort of overall coping mechanism. While Serena and Alicia remain deep inside my psyche, Amara or Amber may speak through me and alongside me to work my mouth and voice if needed. You see, Amara and Amber have been with me in various forms since I was born; my brain created them in my intense creative imagination as purely fictional ways of coping with my life. Serena and Alicia came later, as ways to continue fueling that creativity. These girls are not real, but they are certainly helpful.
After I am affected by a seizure, I may also be affected by various complexities from spastic ataxic cerebral palsy: fibromyalgia, sensory processing disorder, synesthesia, hypersensitivity, ADHD Inattentive and Over-Focused Types, Obsessive-Compulsive Disorder, hypertonia, hemiparesis, hemiplegia, severe anxiety or even actual panic, problems speaking and moving, drooling and possible gasps, choking sounds, or odd vocalizations, memory disintegration, spasms, emotional outbursts. Try to not be surprised. This is technically normal for me. You can ask me questions and I may reply one way or another
Complex partial seizures via temporal lobe epilepsy are different for most epileptics. For me, having cerebral palsy, these seizures can be extremely fascinating and bizarre.
I will add that this all happened approximately an hour before I wrote this, and the main reason I was able to type this out was because Amber and Serena helped. My body and mind are both in an altered state. Reality is swimming right now. I just banged my arm against the wall, and the only reason I felt it was because of that part of my brain that is still processing the outside world.
Yes, please ask me questions of all kinds. Nothing is off limits. Speaking out helps me understand my own brain and my own intense neurology.
***
Edited to add:
I just got a really fascinating comment on Facebook since I copied this whole post there. I'm going to post the person's comment and then my comment. I'm still not sure what to think. Was I too harsh in my reply? Also, I still don't know what sort of point they were trying to get across:
Them:
'Ok not trying to be rude but who are you seeing for counseling? Because quite frankly if you are feeling that way it might help to talk to a professional. And if you are seeing one they frakking suck. No one should have to vocalize these feelings on line. You need an outlet. Life sucks for all of us. We work our asses off thanklessly all day long. Some at jobs. Some at home. Everybody I know is dealing with the mental/physical breakdown of being an adult. I will be happy to help in any way i can but I DON'T know how to help you!!! I come home from work every day in physical and emotional pain. And ya know what it is par for the course! I do not have the same physical limitations you do but I do have arthritis/ 10 hr days/ mega PTSD and bad joints!!! And i deal with it because i have to. What do you need that you are not getting that your friends can help you with!!! I will never say you are ok. Or should be ok. I will however say that none of us are. And we all have to work with the hand we are dealt and either make something of our lives or succumb to the negatives. What can we do to help you!!!?'
Me:
'First of all, wow. What?
Second of all: My psychotherapist is actually wonderful. She is perfect for ME. She doesn't "frakking suck" - in fact, within the span of two years, she has helped me open up to many things I never would have imagined, helping me heal myself from within.
The reason I vocalize this online is because I am a disability advocate, as well as an advocate for epilepsy, cerebral palsy, and fibromyalgia. Friends have actively requested that I post my experiences on Facebook and blogs. That is the only reason I am willing to talk about it publicly. I have learned that keeping silent means that others feel alone, lonely, and desperate; many of them feel that they have no one to talk to.
I don't post this to actually ask for help; I post this to help people with similar disabilities understand and share. I am honestly not sure what you're getting at. You're not being rude; I am just very puzzled. I am perfectly aware that everyone has problems. There are people who are much much worse off than me. There are people who may never talk about their pain online and that's just fine.
This is not the Suffering Olympics. This is not My Pain Is Worse Than Your Pain. This is not an example of You Think That's Bad? Check This Out!
This is I Am Sharing A Personal Experience So Others With Similar Issues Can Understand And Share Similar Experiences.
Are you trying to tell me that I shouldn't talk about my disabilities on Facebook? If you are, get in line. I did not realize that you had such an issue. I wish you would have come to me sooner, maybe in a private message. But I suppose this is a good way to get it out and a good way for both of us to talk about our feelings. You have chronic pain. You handle it your way. I have chronic pain. I handle it my way. Good for both of us. Why would I ask for help on Facebook? Most people I know don't even live close enough!
As far as this actual post... it was in reply to someone's request. How do I feel during and after certain seizures? What are things that I do? If a friend is with me, what can they do? This has absolutely nothing to do with my asking anyone for help. This is a clinical, simple way to explain what happens. If it bothers you, feel free to tell me. But I'm not going to change what I do or why I do it.'
Them:
I am in no way shape or form trying to be critical and my apologies if it came across that way. But I have many friends who have similar disabilities (some less some more severe) and I don't see them in nearly the physical/emotional pain you seem to experience all the time. I don't know if it is just that you talk about it more (and if that is how you cope then that is awesome for you) but to me you just seem SO focused on the pain and the negative impact of your condition that (and this comes purely from an associates degree in psychology which is worth practically nothing) that in some ways you could be making it worse for yourself. Look... I worry when people I care about are in pain. Especially constant pain. If you had a friend who was depressed and all they seemed to do was talk about how depressed they were and how much their life was misery you would reach out and encourage them to seek help right? I know what you are experiencing is not depression. But it is worriesome to outsiders looking in when they see a friend who seems to be so focused on the hard parts of their life. I'm not the type to beat around the bush. My apologies for being so blunt. But we have had too many friends of ours recently 'reach out' without ACTUALLY reaching out who ended up taking extreme measures and I just wanted to make sure this was not some cry for help that we were missing. In my own blunt caustic way this is me trying to be a friend and make sure that you are ok.
Me:
Thank you, but this is always how I have dealt with my issues. This was not a cry for help. I am not focusing on any negative - I am literally talking about my life so my friends who want to know can read. This was nothing more than a post about one epileptic seizure. Not depression. I am just wondering: if you have been so worried, why did you wait until now to make a comment on a simple seizure post? Why didn't you write me a private message? Or comment on an actual depression post? You're trying to compare me to people who have extremely different ways of dealing with their issues. I am not them. I am not you. I am me. And I am my own cope. This is how I cope. This has always been how I cope. But if you've been reading my posts for this long, you should have known that I never post desperate cries for help. If I need cheering up I ask to be cheered up. Otherwise I send people private messages asking how they cope. And in case you didn't know, none of my posts are ever secret cries for help. They are "This is what is happening right now" posts. And nothing more.
See, I've never been fully negative. I'm not going to apologize if all my posts seem like that's all I talk about. I'm not going to put smiley faces in every status post just because people think I can't shut up about things happening in my life. I don't think you know me very well. I am well adjusted. I am very happy. There is nothing in my life that is falling apart. If I need to reach out, I really really do reach out. In fact, I don't shut up about it. In fact, my friends actually tell me to stop talking when I pause for breath. I actively seek help. I have seven freaking doctors. I have a mom I talk to all the time. I am in no shortage of help. And I am certainly not draping any of my Facebook posts in thin cries for help. I'm actually slightly offended, because the friends who know me best know very, very well that if I wanted to cry for help, I would email them, pick up the phone, or go to them and physically cry until I felt better. Why would I do that in public on Facebook? What's the point? Like I said, I'm a disability advocate. That means I talk. A lot. In public. Where people can see what I'm going through. I also have blogs. Where I talk. A lot. In public. Where people can read. Facebook is simply a smaller outlet - I know a lot of people here who WANT to know how I am.
You see why your comment left me so confused? I have no memories of our actual friendship, then out of nowhere you start scolding me in a clinical epilepsy post about how I seem to focus on the negatives.
I should add that my issues are certainly not negative. My life is a fantastic dance. My personal disabilities are bumps on the dance floor.
How about the next time you want to worry, please look for a post where I say I am actually depressed - not a seizure post, please.
UPDATE!
She messaged me privately finally and also apologized in my public post. We were all right - she was overly stressed and in pain personally, and she had an intense knee jerk reaction to my seizure post. Since she was going through some incredibly painful mental things, she projected onto me. Her apology was so sincere that I was more than happy to chat and relate and ask if *I* could help *her* in any way. I mean, this does not excuse her behavior, but it does help me understand WHY.
***
Yeah, sometimes I forget that people just don't... don't click. And I'm realizing that sometimes people who think they're my friends really are not.