A couple of years ago I posted that if only my kid would be better, would get over PANDAS, I would never again complain about anything.
Ha. What a short memory I have.
Because there I was stressing over my kid and some decisions he is making about things. Worrying and stressing and not knowing how to deal with my feelings about it.
And then I remembered. Oh, he doesn't have PANDAS anymore.
This is a normal healthy child problem! How lucky am I? How incredible and even unpredictable, and absolutely fortunate am I to have a kid who is healthy, going to college with a full scholarship and able to make any decisions - good bad or otherwise- about whatever is related to that??
SO FREAKING LUCKY.
Every day I hear and see people that would give anything - and have given everything already - IF ONLY their child could have a normal life.
Well, it shut me up, at least for the time being.
Am I still worried? YES YES YES
Am I stressed and complaining about it? Not so much. I'm not even resisting it as much, I'm engaging on a better more accepting level, regardless of the outcome.
Because my child is well. He is going to college as a healthy normal kid making possibly bad decisions but at least he gets to make them.
We are lucky. And I have to trust that life will somehow continue to take care of him. And me.
Of us.
oh gosh there is that faith thing again. I am rebuilding faith, am I not?
I pray that YOU and YOUR CHILD will be this lucky, that you get to stress over where he or she will live and with whom, when they go off to college or wherever they want to be going. Normal child problems, bring'em on.
Friday, July 25, 2014
Sunday, July 20, 2014
Life is Simply Forward and Back
Two steps forward, or maybe 10, or 100, who knows.
Then, inevitably, one or 5 or 50 steps back.
That's just how life happens, thats just how healing happens.
Actually, I think that healing happens in unpredictable leaps and bounds, and then the steps back are simply that the rest of us has to catch up with the part of us that has had healing. And once we are back to congruence, it is at a higher and more authentic level of resonance, and that we can't help but keep moving forward as healing and evolving beings.
I remember when I was in nursing school, learning about child development, about how babies learn. They learn best when their mom is there as a touchpoint, then they go off and explore a new part of the room, or a new person, or a new toy, and then they run back to the safety of mom's arms, to touch base and integrate whatever they experienced "out there" back into their real world, which is Mom. Then once they land and all is right again, back out they go, into the great beyond, then back in to mom, again and again and again, until one day, that touchpoint, our safe place, our conscience, instead of being mom, ends up deep inside of us. That's how we develop, supposedly. Does that ever really happen? Maybe that's ideal, but maybe, that's our evolution.
We all have a touchpoint. Maybe it IS our moms, our spouses, our friends. A strong ethical sense, a goal. A context. For me, that touchpoint is faith. Belief that life is good, that God is good, that love is glue that holds the world together. That faith became polluted, displaced, by intense prolonged pain during my PANDAS journey. So then for years, my touchpoint was simply hell. That was the essence of the PTSD that overcame me. But now, through intention, and alot of work, I am healing this, I am restoring my center with goodness and love and faith, and strength.
What is it for you? What is your touchpoint?
For many people I see in my practice, that touchpoint is food, food makes everything else ok. For some people it may be nicotine, or sugar, or alcohol. Or shopping. Or anxiety. Anxiety sucks, but at least its familiar, its a touchpoint and can at least remind me of where I am in space. For some people that touchpoint may TV, or exercise, or maybe the ocean. Or other people.
I do wonder about this. Is this why we need other people? And how much of that need is ok, and how much should simply not be there, in that we should never need anybody? Humans are, after all, herd animals. Isn't attachment expected, survival-based and instinctive? But then we are made wrong for needing people. I do not understand this at all.
If you know the answer to that, I'm interested. Because I'm sincerely confused about this right now. My relationships with other people became very damaged during our PANDAS journey. There is barely anyone that was not disappointing to say the least, at that time. My experience was that we were left alone in PANDAS hell to sink or swim.
So now, oh this is so interesting. So, as I look back on this blog, this question I have about the destruction happened to us through PANDAS - how it could have happened, who let it happen - now that I am working so hard to recover a sense of faith, I cannot simply say that God made it happen, or let it happen. That can't be the answer. So my mind is trying to find the answer somewhere else, IF there even is an answer. So now a part of me just simply wants to blame the people, the people in our life that let us down. That left or ignored or simply did nothing to help us. I do resent alot of people, but its confusing because on the one hand, I feel like I should have never needed them and so its my own fault, and on the other hand, we are herd animals by design and have to need other people. And we were drowning, alone, and very few people threw us out a line. How to make sense of this dilemma?
How much to open up to, rely upon, include and care about others as necessary part of my personal human experience again? I am so burned in this department. How to Forgive the people I still hold as internally accountable for our abandonment? The "F" word again!!
I have alot to say about this, this fundamental thinking about myself in relationship with the people in my life. But I'm going to just wait, and consider it, and see what if any wisdom will come to me in this regard, about holding other accountable for what they did.
And meanwhile, probably even more important, I see growing evidence that I am feeling more confident. I have been allowing myself to go out more, to say yes to more invitations. To be less committed to my small personal life. And while I have overall really shut down my heart to people, for the most part - since my grudge makes it too hard to trust anyone right now - every now and then, I steal glimpes of myself as a relaxed, happy, inquisitive and fun social being. Not just a discarded leftover from a PANDAS life. And I recognize that while PANDAS damaged much of the structure of my life, and even my most primal connection to life, I'm ok, I'm in here. And while i do feel like I missed out on so many good things and good feelings over this last almost decade, and while I became traumatized, the fundamental person that I am is so intact. I cannot tell you the relief this has been for me to be discovering. Like, finding a long lost friend. A part of me is beyond PANDAS, maybe always has been, or at the least, is coming back.
How long till I stop punishing myself completely for what PANDAS did to me, and to my child, and for what I did and became as a result? I don't know. But every day I am making leaps and bounds foward, then back, then forward.
And finally - the one constant here is that my son is healthy and well, and this one thing is allowing me the freedom to explore my own self and life.
If you are on a PANDAS journey - your time will come. It may look somewhat like mine, laden with PTSD and therapy and incredible pain and loss, and then, healing. Or maybe it will be easier. I hope it is. I hope this writing helps you to know, that your child CAN HEAL, and you, your own self can heal as well back into your life.
Then, inevitably, one or 5 or 50 steps back.
That's just how life happens, thats just how healing happens.
Actually, I think that healing happens in unpredictable leaps and bounds, and then the steps back are simply that the rest of us has to catch up with the part of us that has had healing. And once we are back to congruence, it is at a higher and more authentic level of resonance, and that we can't help but keep moving forward as healing and evolving beings.
I remember when I was in nursing school, learning about child development, about how babies learn. They learn best when their mom is there as a touchpoint, then they go off and explore a new part of the room, or a new person, or a new toy, and then they run back to the safety of mom's arms, to touch base and integrate whatever they experienced "out there" back into their real world, which is Mom. Then once they land and all is right again, back out they go, into the great beyond, then back in to mom, again and again and again, until one day, that touchpoint, our safe place, our conscience, instead of being mom, ends up deep inside of us. That's how we develop, supposedly. Does that ever really happen? Maybe that's ideal, but maybe, that's our evolution.
We all have a touchpoint. Maybe it IS our moms, our spouses, our friends. A strong ethical sense, a goal. A context. For me, that touchpoint is faith. Belief that life is good, that God is good, that love is glue that holds the world together. That faith became polluted, displaced, by intense prolonged pain during my PANDAS journey. So then for years, my touchpoint was simply hell. That was the essence of the PTSD that overcame me. But now, through intention, and alot of work, I am healing this, I am restoring my center with goodness and love and faith, and strength.
What is it for you? What is your touchpoint?
For many people I see in my practice, that touchpoint is food, food makes everything else ok. For some people it may be nicotine, or sugar, or alcohol. Or shopping. Or anxiety. Anxiety sucks, but at least its familiar, its a touchpoint and can at least remind me of where I am in space. For some people that touchpoint may TV, or exercise, or maybe the ocean. Or other people.
I do wonder about this. Is this why we need other people? And how much of that need is ok, and how much should simply not be there, in that we should never need anybody? Humans are, after all, herd animals. Isn't attachment expected, survival-based and instinctive? But then we are made wrong for needing people. I do not understand this at all.
If you know the answer to that, I'm interested. Because I'm sincerely confused about this right now. My relationships with other people became very damaged during our PANDAS journey. There is barely anyone that was not disappointing to say the least, at that time. My experience was that we were left alone in PANDAS hell to sink or swim.
So now, oh this is so interesting. So, as I look back on this blog, this question I have about the destruction happened to us through PANDAS - how it could have happened, who let it happen - now that I am working so hard to recover a sense of faith, I cannot simply say that God made it happen, or let it happen. That can't be the answer. So my mind is trying to find the answer somewhere else, IF there even is an answer. So now a part of me just simply wants to blame the people, the people in our life that let us down. That left or ignored or simply did nothing to help us. I do resent alot of people, but its confusing because on the one hand, I feel like I should have never needed them and so its my own fault, and on the other hand, we are herd animals by design and have to need other people. And we were drowning, alone, and very few people threw us out a line. How to make sense of this dilemma?
How much to open up to, rely upon, include and care about others as necessary part of my personal human experience again? I am so burned in this department. How to Forgive the people I still hold as internally accountable for our abandonment? The "F" word again!!
I have alot to say about this, this fundamental thinking about myself in relationship with the people in my life. But I'm going to just wait, and consider it, and see what if any wisdom will come to me in this regard, about holding other accountable for what they did.
And meanwhile, probably even more important, I see growing evidence that I am feeling more confident. I have been allowing myself to go out more, to say yes to more invitations. To be less committed to my small personal life. And while I have overall really shut down my heart to people, for the most part - since my grudge makes it too hard to trust anyone right now - every now and then, I steal glimpes of myself as a relaxed, happy, inquisitive and fun social being. Not just a discarded leftover from a PANDAS life. And I recognize that while PANDAS damaged much of the structure of my life, and even my most primal connection to life, I'm ok, I'm in here. And while i do feel like I missed out on so many good things and good feelings over this last almost decade, and while I became traumatized, the fundamental person that I am is so intact. I cannot tell you the relief this has been for me to be discovering. Like, finding a long lost friend. A part of me is beyond PANDAS, maybe always has been, or at the least, is coming back.
How long till I stop punishing myself completely for what PANDAS did to me, and to my child, and for what I did and became as a result? I don't know. But every day I am making leaps and bounds foward, then back, then forward.
And finally - the one constant here is that my son is healthy and well, and this one thing is allowing me the freedom to explore my own self and life.
If you are on a PANDAS journey - your time will come. It may look somewhat like mine, laden with PTSD and therapy and incredible pain and loss, and then, healing. Or maybe it will be easier. I hope it is. I hope this writing helps you to know, that your child CAN HEAL, and you, your own self can heal as well back into your life.
Thursday, July 17, 2014
OUCH A MILLION TIMES OUCH
oh this terrible awful missing feeling, arrgggghh its killing me today.
it started last night or maybe yesterday afternoon. what exactly am i thinking i am missing? I'm not 100% sure but it has something to do with yearning for my pre-PANDAS life experience - a normal happy life with normal ups and downs and loving relationships. but, why would this come on so strong?? this incredible yearning moment? nothing has changed, between yesterday - when i didn't feel this way - and today, or last night, when i started to. nothing is wrong, but i'm in this moment when my inner alarm bells are ringing and it feels like something is wrong. i am now calling this a PTSD moment, because it has nothing to do with my current reality, it just feels like it does.
this is what i do when it happens. i check my email a million times. i pace. i don't go to the gym. i stay in the house. I watch tv. i talk to myself and try to pull myself out of it. i try to figure it out. i obsess. i worry. maybe get myself on Facebook because i know there is always somewhere on those pages that will understand and help me feel less isolated. And now i will cry, i will cry in the car on the way to work, and hopefully that will help, because once it gets to the level of cry, maybe there is hope for me. then once i'm at work, i'll think about a bunch of other great things and hopefully distract myself from it and it will go back into the background for another day, or another week. and in it, in this moment, i get to choose that i'm ok, that this feeling is a feeling that will pass, and whatever and whomever i believe i am missing is a void that I MUST FILL with my own self, my own inner being, my own source energy, my own life. I have to come back all the way.
Is this faith?
OUCH.
it started last night or maybe yesterday afternoon. what exactly am i thinking i am missing? I'm not 100% sure but it has something to do with yearning for my pre-PANDAS life experience - a normal happy life with normal ups and downs and loving relationships. but, why would this come on so strong?? this incredible yearning moment? nothing has changed, between yesterday - when i didn't feel this way - and today, or last night, when i started to. nothing is wrong, but i'm in this moment when my inner alarm bells are ringing and it feels like something is wrong. i am now calling this a PTSD moment, because it has nothing to do with my current reality, it just feels like it does.
this is what i do when it happens. i check my email a million times. i pace. i don't go to the gym. i stay in the house. I watch tv. i talk to myself and try to pull myself out of it. i try to figure it out. i obsess. i worry. maybe get myself on Facebook because i know there is always somewhere on those pages that will understand and help me feel less isolated. And now i will cry, i will cry in the car on the way to work, and hopefully that will help, because once it gets to the level of cry, maybe there is hope for me. then once i'm at work, i'll think about a bunch of other great things and hopefully distract myself from it and it will go back into the background for another day, or another week. and in it, in this moment, i get to choose that i'm ok, that this feeling is a feeling that will pass, and whatever and whomever i believe i am missing is a void that I MUST FILL with my own self, my own inner being, my own source energy, my own life. I have to come back all the way.
Is this faith?
OUCH.
Saturday, July 12, 2014
GUTS AND GLORY - The Meaning of Suffering
Does anybody get this? Why are we handed a suffering life?
Religions and philosophers and humanity have been trying to make sense of suffering since the beginning. Why does it happen? Why does it happen to others, terrible suffering, all around the world - way worse suffering than I ever had to endure - and why did it happen to me? And to my son? He is angry, I see that. He's an amazing resilient and brilliant young man with an incredible future ahead of him. But I can also see, he is angry at the world, he does not find the world a loving, trustful place. He is angry at me for letting it ever happen the way it did, not just the PANDAS part, but the other string of losses incurred as a result of the PANDAS part, and then my stress and fatigue as a result of that. I get it, and that's ours to work out, and ours to forgive, but gosh it brings me to the end of my understanding.
I'm trying to make sense of suffering, and how God lets it happen, and how to keep moving emotionally forward from here. Why did my son need to inherit this burden that he must now work out? And I am determined to continue on my healing journey and to ultimately restore myself so completely post-PANDAS that it simply no longer defines me, at least not in a negative way. That is no longer claims any piece of my life or my son's life.
I have come such a long way, in the 4 years since we started this blog, but mostly in just the past month, since I started writing about my PTSD recovery (see I Am Coming Out, Part I, June 13.) I can't believe that was just one month ago exactly since that post. I have moved internal light years, Thank you God! And just a single week, since it occurred to me on the 4th of July that I was in a stare-down moment with the universe, and that I either go back into hell or choose to move forward into a place of faith, back into a world that is love-based. And I made that choice, right here on these pages, as it occurred to me as a possiblity. If you have read this blog, then you understand that the destruction of my faith has been the hallmark damage that happened to me from our PANDAS journey and that my greatest challenge is wrestling my faith back, for without it I am just an empty human shell.
That one moment of choosing faith has been the most restorative thing that has happened to my brain and my heart and my soul in a very long time. Huge strings of great feelings and inspired thoughts returned freely to me. And I had the best week, of feeling hopeful and non-attached and very present and happy and tuned into the right radio-frequency of the universe, that I can remember happening in a long time.
But, you know, I get to a point where, to keep moving forward, I have to keep choosing faith. At every intersection, at every moment where I see myself feeling hurt, or let-down, or uncertain. Or I see how someone that was a great friend, no longer trusts me because of the PTSD crash I had, and that hurts me so bad. And I have to let it go. I have to go so deeply in myself and say OK, young lady, who are you and what do you want your life to be about? you are reconstructing yourself right now, in this here moment. What you are you really made of? Guts and glory? or fear and victimhood?
Can I change what people think of me? Doubtful. Can I simply shift, can I simply just say ok, I don't understand any of this, but I choose faith, right here, a leap in faith based on nothing? Do I have the right and the power to call that forward??
Does anyone have any answer to these questions? Are we as conscious beings not faced with them every day?
If I choose faith, how far can I go without forgiving God for what happened to us? Without forgiving myself for not being more perfect in our PANDAS-stricken life that I could deal with everything better plus still be there fully for my son, who despite everything I did to handle it, I still managed to let down because at times the stress of the burden hurt him, as he saw my stress. I did everything I could to contain it, but sometimes it was beyond my capacity. He was sick for years, 7 years. SEVEN. During which I was divorced, bankrupt, physically and emotionally depleted, and most certainly, never really made friends here where we moved to in the middle of everything. Sometimes I went to work on 2 or 3 hours of sleep for days in a row, and I simply could not function well, and then those would inevitably be the nights that my son would flare and go into these horrific mental states just as I was falling into bed at some already ridiculously late hour, and I just couldn't help him in those moments I was just completely emptied out. Sometimes I would just, scream into a pillow, or even break something, but moreso, abandon him. And he remembers those nights, and so do I, where he was so out there, and I was so absent, I could not get up, or I was frantically trying to reach someone on the phone to come and help us, at maybe 12 or 1 in the morning on a Tuesday night and no one would ever answer their phone, including his dad although I begged his dad to leave his phone on at night, but why should he ever bother? And so Lance was maybe in the living room losing it and I was in my bedroom, maybe even with the door closed, losing it in myself because I couldn't handle just one more instant of this hell and exhaustion and extreme aloneness and lack of God and humanity and no shred of grace in sight anywhere. And eventually I would collect myself and get up and go into wherever Lance was and try to help him.
If you are a PANDAS parent, you know exactly what I am saying here. You are not judging me at all, you are likely judging yourself for the same thing different day.
These most awful of the awful nights - which although they are few, feels like millions - contain the essence of the PTSD experience I have had and am working my way out of. The shame of them, the total isolation and abandonment in which they occurred, the hopeless lostness of them - have been the focus of the trauma work I've been doing. They are freaky bizarre places to go in consciousness. The power of those moments and others like it over the years eroded a huge hole in the place where my faith lived and filled it with poison.
Now, I am trying to let this go. And I know that the way I can do that is to refill my soul with faith. This is a very conscious act.
So I am back to this same f-ing place, only, deeper in. I guess like concentric circles, bringing me deeper and deeper into my soul place. I bounce off the same edges - forgiveness. Understanding. Faith. Arrggghhhhh.
Can I understand what happened? Yesterday I read the Book Of Job and all the commentaries I could find online to see if it would help me understand. But what did Job ultimately understand about his situation? That it was not humanly understandable. That God does not owe humanity anything, and that the mystery is so beyond our comprehension anyway its a moot point. You either choose faith or not.
Having spent a number of years practicing Tibetan Buddhism in my 20s and 30s, I know something of the Buddhist views on suffering - it is the inevitable result of our human mental state of being attached to certain circumstances and outcomes, and that life is suffering unless we cultivate pure nonattachment. Well, all those years of chanting and practicing nonattachment did not ultimately stop me from the suffering involved with our PANDAS life. How can a mother be non-attached to her child's suffering or beyond reaction to that level of exhaustion? That is why in many religions, men are the chosen clergy. They do not contain the same fecund attachment to this earth that women do just by the nature of birth and our lunar bleeding cycles. We are bound.
So now what?
Its Guts and Glory, or bust.
Unforgivable. Non-understandable. vs. Choosing faith as a conscious act. Every day, over and over, at every fork in the road. Until it permeates my soul and forces out the poison that crept in and took over. Maybe it will take a million choices for this to happen. Maybe its just one huge sweeping motion. I don't know. Unforgivable. Non-understandable. Terrible awful. But somehow, I have to make it ok and move on. I have to. Forgiveness for its own sake, for my sake. Grace.
This feels beyond me. It feels like I need more energy than I muster as a single human being, this choice to forgive the unforgiveable and choose faith anyway. I feel like, planetary level energy. I need a proclaimed Universal Forgive PANDAS Parents Day, or moment. Maybe we can all choose a window, a minute, where we can light a candle and focus and say a collective prayer for the Grace of PANDAS parents. And ride this strong energy wave as deep and as far as it will take us. This is not a bad idea.
I am leaving this computer, and going to go to an old power spot I have not been to in a long time. Mount Tam, a certain place... I need to go there and think and pray on this right now. I really need some help right now and nature is the only place I can think of to find it...
I will bring all of you with me, in great love and respect.
P.S. It was good. Choosing faith - its not beyond me. Its Guts and Glory or Bust.
Religions and philosophers and humanity have been trying to make sense of suffering since the beginning. Why does it happen? Why does it happen to others, terrible suffering, all around the world - way worse suffering than I ever had to endure - and why did it happen to me? And to my son? He is angry, I see that. He's an amazing resilient and brilliant young man with an incredible future ahead of him. But I can also see, he is angry at the world, he does not find the world a loving, trustful place. He is angry at me for letting it ever happen the way it did, not just the PANDAS part, but the other string of losses incurred as a result of the PANDAS part, and then my stress and fatigue as a result of that. I get it, and that's ours to work out, and ours to forgive, but gosh it brings me to the end of my understanding.
I'm trying to make sense of suffering, and how God lets it happen, and how to keep moving emotionally forward from here. Why did my son need to inherit this burden that he must now work out? And I am determined to continue on my healing journey and to ultimately restore myself so completely post-PANDAS that it simply no longer defines me, at least not in a negative way. That is no longer claims any piece of my life or my son's life.
I have come such a long way, in the 4 years since we started this blog, but mostly in just the past month, since I started writing about my PTSD recovery (see I Am Coming Out, Part I, June 13.) I can't believe that was just one month ago exactly since that post. I have moved internal light years, Thank you God! And just a single week, since it occurred to me on the 4th of July that I was in a stare-down moment with the universe, and that I either go back into hell or choose to move forward into a place of faith, back into a world that is love-based. And I made that choice, right here on these pages, as it occurred to me as a possiblity. If you have read this blog, then you understand that the destruction of my faith has been the hallmark damage that happened to me from our PANDAS journey and that my greatest challenge is wrestling my faith back, for without it I am just an empty human shell.
That one moment of choosing faith has been the most restorative thing that has happened to my brain and my heart and my soul in a very long time. Huge strings of great feelings and inspired thoughts returned freely to me. And I had the best week, of feeling hopeful and non-attached and very present and happy and tuned into the right radio-frequency of the universe, that I can remember happening in a long time.
But, you know, I get to a point where, to keep moving forward, I have to keep choosing faith. At every intersection, at every moment where I see myself feeling hurt, or let-down, or uncertain. Or I see how someone that was a great friend, no longer trusts me because of the PTSD crash I had, and that hurts me so bad. And I have to let it go. I have to go so deeply in myself and say OK, young lady, who are you and what do you want your life to be about? you are reconstructing yourself right now, in this here moment. What you are you really made of? Guts and glory? or fear and victimhood?
Can I change what people think of me? Doubtful. Can I simply shift, can I simply just say ok, I don't understand any of this, but I choose faith, right here, a leap in faith based on nothing? Do I have the right and the power to call that forward??
Does anyone have any answer to these questions? Are we as conscious beings not faced with them every day?
If I choose faith, how far can I go without forgiving God for what happened to us? Without forgiving myself for not being more perfect in our PANDAS-stricken life that I could deal with everything better plus still be there fully for my son, who despite everything I did to handle it, I still managed to let down because at times the stress of the burden hurt him, as he saw my stress. I did everything I could to contain it, but sometimes it was beyond my capacity. He was sick for years, 7 years. SEVEN. During which I was divorced, bankrupt, physically and emotionally depleted, and most certainly, never really made friends here where we moved to in the middle of everything. Sometimes I went to work on 2 or 3 hours of sleep for days in a row, and I simply could not function well, and then those would inevitably be the nights that my son would flare and go into these horrific mental states just as I was falling into bed at some already ridiculously late hour, and I just couldn't help him in those moments I was just completely emptied out. Sometimes I would just, scream into a pillow, or even break something, but moreso, abandon him. And he remembers those nights, and so do I, where he was so out there, and I was so absent, I could not get up, or I was frantically trying to reach someone on the phone to come and help us, at maybe 12 or 1 in the morning on a Tuesday night and no one would ever answer their phone, including his dad although I begged his dad to leave his phone on at night, but why should he ever bother? And so Lance was maybe in the living room losing it and I was in my bedroom, maybe even with the door closed, losing it in myself because I couldn't handle just one more instant of this hell and exhaustion and extreme aloneness and lack of God and humanity and no shred of grace in sight anywhere. And eventually I would collect myself and get up and go into wherever Lance was and try to help him.
If you are a PANDAS parent, you know exactly what I am saying here. You are not judging me at all, you are likely judging yourself for the same thing different day.
These most awful of the awful nights - which although they are few, feels like millions - contain the essence of the PTSD experience I have had and am working my way out of. The shame of them, the total isolation and abandonment in which they occurred, the hopeless lostness of them - have been the focus of the trauma work I've been doing. They are freaky bizarre places to go in consciousness. The power of those moments and others like it over the years eroded a huge hole in the place where my faith lived and filled it with poison.
Now, I am trying to let this go. And I know that the way I can do that is to refill my soul with faith. This is a very conscious act.
So I am back to this same f-ing place, only, deeper in. I guess like concentric circles, bringing me deeper and deeper into my soul place. I bounce off the same edges - forgiveness. Understanding. Faith. Arrggghhhhh.
Can I understand what happened? Yesterday I read the Book Of Job and all the commentaries I could find online to see if it would help me understand. But what did Job ultimately understand about his situation? That it was not humanly understandable. That God does not owe humanity anything, and that the mystery is so beyond our comprehension anyway its a moot point. You either choose faith or not.
Having spent a number of years practicing Tibetan Buddhism in my 20s and 30s, I know something of the Buddhist views on suffering - it is the inevitable result of our human mental state of being attached to certain circumstances and outcomes, and that life is suffering unless we cultivate pure nonattachment. Well, all those years of chanting and practicing nonattachment did not ultimately stop me from the suffering involved with our PANDAS life. How can a mother be non-attached to her child's suffering or beyond reaction to that level of exhaustion? That is why in many religions, men are the chosen clergy. They do not contain the same fecund attachment to this earth that women do just by the nature of birth and our lunar bleeding cycles. We are bound.
So now what?
Its Guts and Glory, or bust.
Unforgivable. Non-understandable. vs. Choosing faith as a conscious act. Every day, over and over, at every fork in the road. Until it permeates my soul and forces out the poison that crept in and took over. Maybe it will take a million choices for this to happen. Maybe its just one huge sweeping motion. I don't know. Unforgivable. Non-understandable. Terrible awful. But somehow, I have to make it ok and move on. I have to. Forgiveness for its own sake, for my sake. Grace.
This feels beyond me. It feels like I need more energy than I muster as a single human being, this choice to forgive the unforgiveable and choose faith anyway. I feel like, planetary level energy. I need a proclaimed Universal Forgive PANDAS Parents Day, or moment. Maybe we can all choose a window, a minute, where we can light a candle and focus and say a collective prayer for the Grace of PANDAS parents. And ride this strong energy wave as deep and as far as it will take us. This is not a bad idea.
I am leaving this computer, and going to go to an old power spot I have not been to in a long time. Mount Tam, a certain place... I need to go there and think and pray on this right now. I really need some help right now and nature is the only place I can think of to find it...
I will bring all of you with me, in great love and respect.
P.S. It was good. Choosing faith - its not beyond me. Its Guts and Glory or Bust.
Friday, July 4, 2014
Your Faith Will Find You
When I go back and read a post like the one I wrote this morning (Deconstructing Homesick Loneliness), I want to take it off this blog. I can't believe those spaces and I embarrass myself reading it. Even the name of that post is just awful, you know I had to be in a terrible space just to write it.
But I'm not going to take it off, because that was real, even if it was fleeting, and now, this is real. PTSD is exactly like that. You're just regular, and then, you're in this intense altered space and it can be confusing. But I can see it now, it is losing its grip on me. (Here is a definite sign you are in your head or PTSD - all you can think about is the story, telling it, explaining it and justifying it). And I hope that in some way it helps even one person to know, that you are not the only person feeling so small and beat up at times that you can't even get out of your house.
Today, I used every bit of strength and discipline I had and forced myself back into the present moment. That is the only place there is ever peace and love, happiness and a life of joy and meaning. I am unwilling to remain a casualty of PANDAS, or to settle for less than, at the minimum, the emotional life I had before PANDAS ever happened.
It is taking some time but I am working my way out of the story, out of the trauma and into a present and future that is reliable, loving, abundant and free. And just, normal. One day I will stop telling the story of how PANDAS ever happened to me, it will no longer define me, at all.
This is my stand and this is my intention and if this a moment that I can call faith back to me, then I am willing to say that somewhere in me is still enough faith that I can honestly and truly turn this ship around.
I PRAY THIS SO HARD. I Pray that my faith will find me again, right here where I am, and bring me the strength and clarity to restore my heart and soul.
And I pray this for all of us, for anyone caught in a story of suffering, for any reason.
I pray that faith will find you, right where you are, when you need it most, and will carry you across the bridge, no matter how broken it may be, back into a place of peace and healing.
But I'm not going to take it off, because that was real, even if it was fleeting, and now, this is real. PTSD is exactly like that. You're just regular, and then, you're in this intense altered space and it can be confusing. But I can see it now, it is losing its grip on me. (Here is a definite sign you are in your head or PTSD - all you can think about is the story, telling it, explaining it and justifying it). And I hope that in some way it helps even one person to know, that you are not the only person feeling so small and beat up at times that you can't even get out of your house.
Today, I used every bit of strength and discipline I had and forced myself back into the present moment. That is the only place there is ever peace and love, happiness and a life of joy and meaning. I am unwilling to remain a casualty of PANDAS, or to settle for less than, at the minimum, the emotional life I had before PANDAS ever happened.
It is taking some time but I am working my way out of the story, out of the trauma and into a present and future that is reliable, loving, abundant and free. And just, normal. One day I will stop telling the story of how PANDAS ever happened to me, it will no longer define me, at all.
This is my stand and this is my intention and if this a moment that I can call faith back to me, then I am willing to say that somewhere in me is still enough faith that I can honestly and truly turn this ship around.
I PRAY THIS SO HARD. I Pray that my faith will find me again, right here where I am, and bring me the strength and clarity to restore my heart and soul.
And I pray this for all of us, for anyone caught in a story of suffering, for any reason.
I pray that faith will find you, right where you are, when you need it most, and will carry you across the bridge, no matter how broken it may be, back into a place of peace and healing.
Deconstructing Homesick Loneliness
ARGGGHHHH I HATE THIS FEELING.
Lonely homesick angst. I HATE IT.
This is what it looks like to battle PTSD. I'm not emotionally unwell, I'm not depressed, I'm not neurotic. But I am battling being overcome by these incredible emotions that cloud my thinking and try to make me believe that things are not OK today, when they are fine, but I can't find enough presence of mind to experience the OK-ness that today is. And its sad, and hard, and lonely, for no reason, and I hate it.
Last night it came on, it kind of ran me over. I feel it mostly in my throat and chest, its heavy and it hurts. Its a missing and a longing, an aching. I think its a piece of the PTSD that got triggered. In fact, I know that is true, because of the overpowering feeling nature of it. This feeling of being disconnected from the human race that makes no sense. And I hate it.
I was doing ok, so what happened? Well, coming back from Mexico to this strange isolated life, is one thing. I felt more at home in Mexico during our brief stay there, than I ever felt here in the entire 8 years we've lived here, or more accurately, haunted here. The warmth, the water, the sun, the relaxed nature not of the vacation but of the people, I can't explain that. I miss our life in Atlanta, where even though everyone had alot going on, there was more warmth and connection between families, and we were integrated into our friendships. I never felt integrated into this place outside of my work. I have always felt foreign, even before we moved here, which I never wanted to do in the first place, I did for my husband's business which is an entirely different story. I knew this was simply not my place. I never felt a chemistry with this area, a love for the land itself. Its cold, the water is cold, and the land is nice but its not my land. And I am a very visceral person when it comes to my home.
But I also cannot deny that the major part of my disconnect with this place is due to the fact that Lance was just starting to get sick when we moved here. His tics began on July 7, 2006, the day the moving van was loading our stuff. In the 10 days it took for me and him to drive here, from that day, Lance's tics, OCD and anxiety were in full swing. Memories of me driving like a maniac through the desert while he laid in the back seat with a jacket or something over his head because all of a sudden he had to count everything he saw - the light posts, the white lines and dashes on road, it was nuts. By the time we got here, we were a mess of anxiety. So no one here ever knew me as me, or him as him, or us as a family. And all this place does now is elicit feelings and memories of losses and loneliness and bad juju. Its no one's fault, but I still feel very resentful. I have to let that go.
So today is this 4th of July holiday and even though I'm busy with great plans all day, I'm feeling so disconnected and isolated. This makes no sense. I'm certain that today is simply triggering the memories and bad feelings of many years of holidays here in Sebastopol of being alone. And all the other bad isolation memories here. Holiday blues to the max. Holidays of any kind are such a sore spot for me now. I am a social person, and my pre-PANDAS life, I was essentially, alone when I wanted to be, and very involved in friendships and community when I wanted to be. Here, its always been just Lance and me, me and Lance. Thanksgivings, Christmases, 4ths of July's, Memorial Days, any time and all of the time. Not exactly the people invited to barbecues. Not because people don't care, or didn't care, but we were caught up in PANDAS land for a long time, and it was stressful for people. It was never like, hey let's invite Amy and Lance over and have some fun! Plus we were stuck here, because of overall lack of funds. And while we're not stuck here anymore, exactly, and while Lance is leaving for school in just a few weeks, and I am going to be moving more forward in my own life whatever that means - it still feels like this today. And its so freaking heavy.
I HATE THIS FEELING.
In the meantime, I have to pull it up, right now, and get myself out of the house. This house has more gravity than anywhere else on earth. I weigh 10 times more in this house, the pull is strong. Sometimes its hard to leave it for any reason except to go to work or the store. On days like this, the gravity is like, a million G's, and it can take tremendous fortitude to just take a walk or do anything or go anywhere ever. Its so so heavy, this house, right now. It's its own planet, and i'm in orbit around it, and that's it.
UGGGGHHHH.
This is what battling PTSD looks like, overcoming the gravity of these past feelings and emotions with the most intense intention I can muster and try to focus on the simple here and now.
OK so I am going to do 2 things right now. One is, try to remember and think about some good future things. Moving on from here, going to the desert this fall, the fact my darling son is healthy and going off to the school of his dreams, the fact I have a wonderful practice and I love what I do there, and I know even if I can't feel it right now, that my future is bright and hopeful. And i'm travelling to the east coast this fall to see family and friends as well as for professional travel. Secondly, i'm going to reach out to a friend or two, right now, and just get out of this funk because I know there is no way that I am as alone as I feel right now. And three, I'm going to get off of the computer, which is I think the center of gravity of the house, and just push myself out there. Outside. If i can just break free of this house to get outside, it will help my thinking so much. So that's what I'm going to try right now. And 4th, I'm going to get ready to go to a great party this afternoon, and to the fireworks tonight, and move the heck on in life.
This is what it looks like to battle PTSD. I'm not emotionally unwell, I'm not depressed, I'm not neurotic. But I am battling being overcome by these incredible emotions that cloud my thinking and try to make me believe that things are not OK today, when they are fine, but I can't find enough presence of mind to experience the OK-ness that today is. And its sad, and hard, and lonely, for no reason, and I hate it.
Last night it came on, it kind of ran me over. I feel it mostly in my throat and chest, its heavy and it hurts. Its a missing and a longing, an aching. I think its a piece of the PTSD that got triggered. In fact, I know that is true, because of the overpowering feeling nature of it. This feeling of being disconnected from the human race that makes no sense. And I hate it.
I was doing ok, so what happened? Well, coming back from Mexico to this strange isolated life, is one thing. I felt more at home in Mexico during our brief stay there, than I ever felt here in the entire 8 years we've lived here, or more accurately, haunted here. The warmth, the water, the sun, the relaxed nature not of the vacation but of the people, I can't explain that. I miss our life in Atlanta, where even though everyone had alot going on, there was more warmth and connection between families, and we were integrated into our friendships. I never felt integrated into this place outside of my work. I have always felt foreign, even before we moved here, which I never wanted to do in the first place, I did for my husband's business which is an entirely different story. I knew this was simply not my place. I never felt a chemistry with this area, a love for the land itself. Its cold, the water is cold, and the land is nice but its not my land. And I am a very visceral person when it comes to my home.
But I also cannot deny that the major part of my disconnect with this place is due to the fact that Lance was just starting to get sick when we moved here. His tics began on July 7, 2006, the day the moving van was loading our stuff. In the 10 days it took for me and him to drive here, from that day, Lance's tics, OCD and anxiety were in full swing. Memories of me driving like a maniac through the desert while he laid in the back seat with a jacket or something over his head because all of a sudden he had to count everything he saw - the light posts, the white lines and dashes on road, it was nuts. By the time we got here, we were a mess of anxiety. So no one here ever knew me as me, or him as him, or us as a family. And all this place does now is elicit feelings and memories of losses and loneliness and bad juju. Its no one's fault, but I still feel very resentful. I have to let that go.
So today is this 4th of July holiday and even though I'm busy with great plans all day, I'm feeling so disconnected and isolated. This makes no sense. I'm certain that today is simply triggering the memories and bad feelings of many years of holidays here in Sebastopol of being alone. And all the other bad isolation memories here. Holiday blues to the max. Holidays of any kind are such a sore spot for me now. I am a social person, and my pre-PANDAS life, I was essentially, alone when I wanted to be, and very involved in friendships and community when I wanted to be. Here, its always been just Lance and me, me and Lance. Thanksgivings, Christmases, 4ths of July's, Memorial Days, any time and all of the time. Not exactly the people invited to barbecues. Not because people don't care, or didn't care, but we were caught up in PANDAS land for a long time, and it was stressful for people. It was never like, hey let's invite Amy and Lance over and have some fun! Plus we were stuck here, because of overall lack of funds. And while we're not stuck here anymore, exactly, and while Lance is leaving for school in just a few weeks, and I am going to be moving more forward in my own life whatever that means - it still feels like this today. And its so freaking heavy.
I HATE THIS FEELING.
In the meantime, I have to pull it up, right now, and get myself out of the house. This house has more gravity than anywhere else on earth. I weigh 10 times more in this house, the pull is strong. Sometimes its hard to leave it for any reason except to go to work or the store. On days like this, the gravity is like, a million G's, and it can take tremendous fortitude to just take a walk or do anything or go anywhere ever. Its so so heavy, this house, right now. It's its own planet, and i'm in orbit around it, and that's it.
UGGGGHHHH.
This is what battling PTSD looks like, overcoming the gravity of these past feelings and emotions with the most intense intention I can muster and try to focus on the simple here and now.
OK so I am going to do 2 things right now. One is, try to remember and think about some good future things. Moving on from here, going to the desert this fall, the fact my darling son is healthy and going off to the school of his dreams, the fact I have a wonderful practice and I love what I do there, and I know even if I can't feel it right now, that my future is bright and hopeful. And i'm travelling to the east coast this fall to see family and friends as well as for professional travel. Secondly, i'm going to reach out to a friend or two, right now, and just get out of this funk because I know there is no way that I am as alone as I feel right now. And three, I'm going to get off of the computer, which is I think the center of gravity of the house, and just push myself out there. Outside. If i can just break free of this house to get outside, it will help my thinking so much. So that's what I'm going to try right now. And 4th, I'm going to get ready to go to a great party this afternoon, and to the fireworks tonight, and move the heck on in life.
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