Devastating Fire
I'm not the same person that I was. Or rather, I am the same person with an entirely different set of priorities. Physically, I'm not the same. And I am recording this and reflecting on it publicly now even though I am still in the woods. Someone else who is lost in the woods might be able to relate, and the value of knowing you are not suffering alone is rare currency.
It's not enough to say that having Lyme's PLUS this chronic and low burning autoimmune deficiency simultaneously has laid waste to my psyche and any sense of self that I had. It literally ripped my coping mechanisms away with it. All of the things that usually helped me carry through illness were taken in insidious ways. I have had to re-learn how to cope and re-prioritize things that would be conducive to healing without falling down a chasm, and it's been a perilous walk.
Let's start with the obvious: my face. I've never considered myself a pretty girl. Just a girl who had a face. The only thing I liked about it was when it smiled so hugely (and it could do that!) that it reached my eyes and was able to communicate with everyone just how happy I was to be with them. Paralysis took my smile. It didn't stop there, though. It took my ability to laugh without pain and pressure. It took my ability to play the flute, an instrument I've played for most of my life. It left me with very limited ways to express happiness. It took away half of my ability to taste, and really screwed up my ability to communicate. As someone that is expected to speak to people a lot, especially in public or leading rites, it has been humiliating and painful. I have never wanted to smile so badly in my life. People treat you differently when something is visibly afflicting you. I've had this invisible illness my whole life, and for the first time something was plainly visible on my face and people reacted. They treated me like maybe I didn't understand them, or that I was a special child. They asked me if I'd had a stroke, or they'd ask "Oh, what happened to your face? It's melting! Is it ever going to get better?" And I'd tell them, but I couldn't tell them if it was going to get better. It would improve, but I cannot guarantee it will ever be the same again. As of this writing, I can smile with a closed mouth. It now reaches my eyes and gives my cheeks definition. I cannot show my teeth yet. I have some ability to taste returning. When I smile, I hear the ocean in my ears and my head pounds a little. That's the nerve healing, which means it IS healing and not dead. I have to concentrate pretty hard to get both sides of my mouth to participate in the action of smiling. The part of me that is optimistic is excited. The part of me that is realistic always knew this could happen. I have no defenses. Down the line, something else could do the same amount of devastation, but for now I'm focusing on healing.
I completely admit: I am terrified of not being able to smile again the way I used to. Being paralyzed in this way (and by the way, it was never numb. There were pockets of pain all over my face and head. There still are. That's how this works.)
Now let's talk about what happened. So, sometime this year or late last year, I got bitten by a tick that gave me Lymes. I didn't know it happened. I never got a rash or anything. One day my neck started hurting the way my neck usually does when I hurt it because my neck bones are banjaxed. I didn't know what was wrong, though. Everything felt distant and off, and it had felt that way for months. It was the 21st of July, which was my brother's birthday. I spent much of the day laying down, trying to take pressure off my neck. Less than a week later, the migraines started. I don't get migraines too often, not true ones anyway. I'd never had them like this. They wouldn't go away. Nothing could touch the pain of these migraines. Nothing. Not painkillers, not reiki, not sleep, not food, not caffeine, NOTHING. Lughnasadh came around, and I was in such incredible pain. I labored through it and did the best I could to help my friends celebrate the holiday and pull off the Rite, but I don't remember much of it. I won first place in the talent show, but I don't remember it. I remember singing, I think. Or trying to, but every move I made was something I paid for. The very next day, the pain was so incredible I thought for sure my brain was literally burning. I went to the hospital. I could barely see. They tried different kinds of pain killers, but only one migraine medication even came close to touching it. At that point, they wanted to give me a spinal tap for meningitis, but I 1.) didn't want a spinal tap and 2.) hadn't come in contact with anyone with meningitis and it didn't explain my other symptoms. I escaped before they could stab me in the spine and went to have my neck seen to the next day. My face was paralyzed slowly, the infection in my head swelling it up, so it went over the course of two days. My chiropractor tried to help, but with that much swelling they couldn't get my neck to crack. I also saw an acupuncturist for pain, which helped a little. It didn't help at night, when for the better part of two weeks I woke up in so much pain I was literally screaming. It takes a truckload of pain to get me to the point of screams. My poor husband...my poor poor husband. He helped me every step of the way, but I know the toll this took on him, too. I finally went to my doctor for some painkillers so that I could sleep and heal, and he took one look at me and ordered a blood test. By Tuesday, I was diagnosed with Lyme's. My dear husband had to fly to Minnesota for his mom's funeral, but I couldn't fly. I could barely move. I got the news, then just sat in the bathtub and cried. I had always been told that if I had gotten meningitis, I wouldn't stand a chance. If I had gotten Lyme's, I might never recover. Here I was with Lyme's meningitis (which I had essentially been fighting on my own, at home, and had no idea), Bell's Palsy, and all of the aches and pains and brain fog and loss of vocation and loss of memory and crushing depression that Lyme's had to offer. My body was literally not designed to hold that much at once. For a while, it started struggling against the infection and tried to take it on. Then other infections started popping up everywhere. Allergies hit me, because it was late summer. Then my hidradenitis supportiva started acting up. That's the polite way to say extremely sensitive parts of my body were so infected I couldn't walk properly, and parts of me were literally swollen from infection to three times their normal size. I was essentially a walking infection and there was NOTHING I could do about it but wait. It was going to end one of two ways; either I was going to get through this and take it slowly one step at a time, or it was going to overwhelm me with a blood infection and I'd spend some horrible last days in the hospital. That's how godawfully close this came to taking me out. I did the best I could to downplay this to everyone, but let me tell you: complications from Lyme's came very close to killing me this summer.
Still, even with a lost vocation, and the depression that told me nothing mattered, I still had work to do and the only part of me that wasn't affected was my desire to fight to my last fucking breath. I didn't give up. I might have at other times, but this time I didn't. I am still holding onto it. Whenever people are surprised when I tell them that my patroness is Morrighan, they literally cannot comprehend why. Their idea of battle is a literal one that occurs on a battlefield among people healthy enough to be considered soldiers who sign up to be broken. I was fucking BORN. BROKEN. I was too broken to be a soldier, but I am a different sort of soldier. I fight this battle every day, invisibly. It is not an exaggeration or overdramatization to say that I should be dead right now. I cooked my brain this summer. I had no reason to believe that what was happening to me was anything other than a very injured neck. It took me by surprise and got the upperhand. I was on so many antibiotics. I was on a very short fuse. Strangely, even though I looked like Quasimodo and couldn't "words" properly, or smile when I needed to, my friends stuck around. They have no idea how important that was. They believed in me when I wasn't sure that I could believe in me.
Anyone upon anyone who has not been in my shoes and lived this has no idea how difficult this was and still is. I still have pain. It lingers in my shoulders and neck, around my face and my skull. It's like living with a ghost in my skin.
So, I had to relearn how to cope without music, or laughter, or physicality in any form. I started watching anime again because seasons were longer than one-off movies and could engage my mind for a longer stretch of time. It helped me keep my mind off of things, and I rediscovered my love of theatrics and costuming through cosplay. It's hard to act when your face doesn't want to participate, but it was like breathing life back into a part of myself I had suppressed because of the fierce judgment of others. People might think I'm alone, but I'm not. I've got great supportive friends who are as nerdy as I am, and I don't give a single shit about the judgment of others. If people can't accept all the parts of me, then they don't deserve me. I don't know what will be left of "me" when all of this is over.
Spirituality took an interesting turn. All I could see was hypocrisy everywhere. I found solace instead in reading ancient history and researching my blood ancestors. I was focused only on walking my talk and not interested in being told what I should do to build a healthy spirituality. While everyone else was building one, mine was being tested to the furthest limit. All of the essays and journaling in the world didn't hold a candle to life experience like this. I still intend to pursue the clergy program, but with more moderation than most, I think. My investigations have led me to what I believe to be true, and where that conflicts with ADF's collective pet theories, that's just going to have to be what it is. My experience speaks louder than the silence of ages. I am alive now, and thank the Gods I'm alive. I couldn't be without Them.
Not for a single moment did I blame the Gods in all of this. I prayed to them every single night. I prayed to Brighid and Airmed for healing and for answers. I prayed for them to ease the pain. I prayed to Morrighan for fight and fire and to not let me go. They all answered in kind; I had to work for it. I made a very extreme sacrifice to Morrighan (and to Coyote), and chopped off almost all of my hair. If I was to take shapeshifting and shamanism seriously, I had to start from scratch. For me, hair is extremely powerful. I cut it off and gave it up. Ego death is hard. I miss my hair, but it enabled me to learn more about myself and revisit some things in my past that I had forgotten about.
So where am I now? I'm not sure. Maybe some of this was selfish. One of the biggest things I heard through the entire ordeal was "Take care of yourself for once!" so I did that. Whoever I am, I know for sure one thing: I have no space in my life for false friendships or feeling bad about the things I am passionate about. If people don't accept me for who I am, then fuck them.
This is the longest I think I've ever written about myself as a subject. I don't like talking about myself this way for a number of reasons. Still. I was encouraged to get it all out by friends I value highly. I want to show them that I am still with them and they are not invisible to me. I love them dearly. I'm still in here somewhere, I promise. Thank you for your patience and your love, and Gods bless you all.
-me, out.
It's not enough to say that having Lyme's PLUS this chronic and low burning autoimmune deficiency simultaneously has laid waste to my psyche and any sense of self that I had. It literally ripped my coping mechanisms away with it. All of the things that usually helped me carry through illness were taken in insidious ways. I have had to re-learn how to cope and re-prioritize things that would be conducive to healing without falling down a chasm, and it's been a perilous walk.
Let's start with the obvious: my face. I've never considered myself a pretty girl. Just a girl who had a face. The only thing I liked about it was when it smiled so hugely (and it could do that!) that it reached my eyes and was able to communicate with everyone just how happy I was to be with them. Paralysis took my smile. It didn't stop there, though. It took my ability to laugh without pain and pressure. It took my ability to play the flute, an instrument I've played for most of my life. It left me with very limited ways to express happiness. It took away half of my ability to taste, and really screwed up my ability to communicate. As someone that is expected to speak to people a lot, especially in public or leading rites, it has been humiliating and painful. I have never wanted to smile so badly in my life. People treat you differently when something is visibly afflicting you. I've had this invisible illness my whole life, and for the first time something was plainly visible on my face and people reacted. They treated me like maybe I didn't understand them, or that I was a special child. They asked me if I'd had a stroke, or they'd ask "Oh, what happened to your face? It's melting! Is it ever going to get better?" And I'd tell them, but I couldn't tell them if it was going to get better. It would improve, but I cannot guarantee it will ever be the same again. As of this writing, I can smile with a closed mouth. It now reaches my eyes and gives my cheeks definition. I cannot show my teeth yet. I have some ability to taste returning. When I smile, I hear the ocean in my ears and my head pounds a little. That's the nerve healing, which means it IS healing and not dead. I have to concentrate pretty hard to get both sides of my mouth to participate in the action of smiling. The part of me that is optimistic is excited. The part of me that is realistic always knew this could happen. I have no defenses. Down the line, something else could do the same amount of devastation, but for now I'm focusing on healing.
I completely admit: I am terrified of not being able to smile again the way I used to. Being paralyzed in this way (and by the way, it was never numb. There were pockets of pain all over my face and head. There still are. That's how this works.)
Now let's talk about what happened. So, sometime this year or late last year, I got bitten by a tick that gave me Lymes. I didn't know it happened. I never got a rash or anything. One day my neck started hurting the way my neck usually does when I hurt it because my neck bones are banjaxed. I didn't know what was wrong, though. Everything felt distant and off, and it had felt that way for months. It was the 21st of July, which was my brother's birthday. I spent much of the day laying down, trying to take pressure off my neck. Less than a week later, the migraines started. I don't get migraines too often, not true ones anyway. I'd never had them like this. They wouldn't go away. Nothing could touch the pain of these migraines. Nothing. Not painkillers, not reiki, not sleep, not food, not caffeine, NOTHING. Lughnasadh came around, and I was in such incredible pain. I labored through it and did the best I could to help my friends celebrate the holiday and pull off the Rite, but I don't remember much of it. I won first place in the talent show, but I don't remember it. I remember singing, I think. Or trying to, but every move I made was something I paid for. The very next day, the pain was so incredible I thought for sure my brain was literally burning. I went to the hospital. I could barely see. They tried different kinds of pain killers, but only one migraine medication even came close to touching it. At that point, they wanted to give me a spinal tap for meningitis, but I 1.) didn't want a spinal tap and 2.) hadn't come in contact with anyone with meningitis and it didn't explain my other symptoms. I escaped before they could stab me in the spine and went to have my neck seen to the next day. My face was paralyzed slowly, the infection in my head swelling it up, so it went over the course of two days. My chiropractor tried to help, but with that much swelling they couldn't get my neck to crack. I also saw an acupuncturist for pain, which helped a little. It didn't help at night, when for the better part of two weeks I woke up in so much pain I was literally screaming. It takes a truckload of pain to get me to the point of screams. My poor husband...my poor poor husband. He helped me every step of the way, but I know the toll this took on him, too. I finally went to my doctor for some painkillers so that I could sleep and heal, and he took one look at me and ordered a blood test. By Tuesday, I was diagnosed with Lyme's. My dear husband had to fly to Minnesota for his mom's funeral, but I couldn't fly. I could barely move. I got the news, then just sat in the bathtub and cried. I had always been told that if I had gotten meningitis, I wouldn't stand a chance. If I had gotten Lyme's, I might never recover. Here I was with Lyme's meningitis (which I had essentially been fighting on my own, at home, and had no idea), Bell's Palsy, and all of the aches and pains and brain fog and loss of vocation and loss of memory and crushing depression that Lyme's had to offer. My body was literally not designed to hold that much at once. For a while, it started struggling against the infection and tried to take it on. Then other infections started popping up everywhere. Allergies hit me, because it was late summer. Then my hidradenitis supportiva started acting up. That's the polite way to say extremely sensitive parts of my body were so infected I couldn't walk properly, and parts of me were literally swollen from infection to three times their normal size. I was essentially a walking infection and there was NOTHING I could do about it but wait. It was going to end one of two ways; either I was going to get through this and take it slowly one step at a time, or it was going to overwhelm me with a blood infection and I'd spend some horrible last days in the hospital. That's how godawfully close this came to taking me out. I did the best I could to downplay this to everyone, but let me tell you: complications from Lyme's came very close to killing me this summer.
Still, even with a lost vocation, and the depression that told me nothing mattered, I still had work to do and the only part of me that wasn't affected was my desire to fight to my last fucking breath. I didn't give up. I might have at other times, but this time I didn't. I am still holding onto it. Whenever people are surprised when I tell them that my patroness is Morrighan, they literally cannot comprehend why. Their idea of battle is a literal one that occurs on a battlefield among people healthy enough to be considered soldiers who sign up to be broken. I was fucking BORN. BROKEN. I was too broken to be a soldier, but I am a different sort of soldier. I fight this battle every day, invisibly. It is not an exaggeration or overdramatization to say that I should be dead right now. I cooked my brain this summer. I had no reason to believe that what was happening to me was anything other than a very injured neck. It took me by surprise and got the upperhand. I was on so many antibiotics. I was on a very short fuse. Strangely, even though I looked like Quasimodo and couldn't "words" properly, or smile when I needed to, my friends stuck around. They have no idea how important that was. They believed in me when I wasn't sure that I could believe in me.
Anyone upon anyone who has not been in my shoes and lived this has no idea how difficult this was and still is. I still have pain. It lingers in my shoulders and neck, around my face and my skull. It's like living with a ghost in my skin.
So, I had to relearn how to cope without music, or laughter, or physicality in any form. I started watching anime again because seasons were longer than one-off movies and could engage my mind for a longer stretch of time. It helped me keep my mind off of things, and I rediscovered my love of theatrics and costuming through cosplay. It's hard to act when your face doesn't want to participate, but it was like breathing life back into a part of myself I had suppressed because of the fierce judgment of others. People might think I'm alone, but I'm not. I've got great supportive friends who are as nerdy as I am, and I don't give a single shit about the judgment of others. If people can't accept all the parts of me, then they don't deserve me. I don't know what will be left of "me" when all of this is over.
Spirituality took an interesting turn. All I could see was hypocrisy everywhere. I found solace instead in reading ancient history and researching my blood ancestors. I was focused only on walking my talk and not interested in being told what I should do to build a healthy spirituality. While everyone else was building one, mine was being tested to the furthest limit. All of the essays and journaling in the world didn't hold a candle to life experience like this. I still intend to pursue the clergy program, but with more moderation than most, I think. My investigations have led me to what I believe to be true, and where that conflicts with ADF's collective pet theories, that's just going to have to be what it is. My experience speaks louder than the silence of ages. I am alive now, and thank the Gods I'm alive. I couldn't be without Them.
Not for a single moment did I blame the Gods in all of this. I prayed to them every single night. I prayed to Brighid and Airmed for healing and for answers. I prayed for them to ease the pain. I prayed to Morrighan for fight and fire and to not let me go. They all answered in kind; I had to work for it. I made a very extreme sacrifice to Morrighan (and to Coyote), and chopped off almost all of my hair. If I was to take shapeshifting and shamanism seriously, I had to start from scratch. For me, hair is extremely powerful. I cut it off and gave it up. Ego death is hard. I miss my hair, but it enabled me to learn more about myself and revisit some things in my past that I had forgotten about.
So where am I now? I'm not sure. Maybe some of this was selfish. One of the biggest things I heard through the entire ordeal was "Take care of yourself for once!" so I did that. Whoever I am, I know for sure one thing: I have no space in my life for false friendships or feeling bad about the things I am passionate about. If people don't accept me for who I am, then fuck them.
This is the longest I think I've ever written about myself as a subject. I don't like talking about myself this way for a number of reasons. Still. I was encouraged to get it all out by friends I value highly. I want to show them that I am still with them and they are not invisible to me. I love them dearly. I'm still in here somewhere, I promise. Thank you for your patience and your love, and Gods bless you all.
-me, out.
You are even more wonderful and inspirational than I previously thought. Luv and value you as my friend very much!
ReplyDeleteWow, I haven't been sending you nearly enough nightly healing sparkles. I am sorry to hear how much pain you've been through. Your soul is stunningly strong and beautiful and I'm grateful to know you, even if we rarely get to see each other in person.
ReplyDeleteSounds like a much needed message got through. You NEED to take care of yourself. Keep at it, girlfriend!
ReplyDelete