I appreciate that a number of people from all over the world are reading this blog.
Most of you arrive having googled something about PANDAS, and I don't know why this blog shows up for you, but more than anything - aside from the obvious fact that I am hoping your child heals completely from this illness - I wish you a journey that includes love from people in your life, and love from yourself, for yourself.
This is so hard, PANDAS. What happens to your child, your family and yourself, its hard. None of us are prepared, its impossible to prepare for war. You think that everything you have ever done may make you strong and ready. But you're still only a human being, and its hard to fight this battle.
We end up fighting everything and everyone. Fighting the illness would be hard enough. But no, that's not all, is it? You have to fight your pediatrician just to acknowlege the fact that your child is, in fact, not having a psychiatric breakdown, your child is having a physical and likely curable illness caused by an infection, if they would just give you the treatment.
Then you have to fight with your insurance company to pay the bills.
Then you likely end up fighting with your spouse, or maybe your mom, or your friends, who think that you have absolutely lost your mind to be trying to get treatment - and heaven forbid, antibiotics - for your child. Antibiotics have become demonized but psych meds, oh, psych meds are fine, just throw your child on some psych meds and call it a day.
Chances are at some point you will have to battle with your child's school, to either justify how much they are missing, or to try to get them to understand that your child's behavior, or urinary frequency, endless handwashing or difficulty separating enough from you to even be at school, are due to a physical illness.
I don't know, that's crazy. How many battles you end up having to fight. No wonder everyone is just so exhausted and constantly feeling like no matter what you do its not enough. But you have to know, you must know, this is not your fault, its not you.
If you are out there, you are not alone. There are thousands of parents, just like you, trying to cure their children, and kids are getting better every day.
Be sure to go to www.pandasnetwork.org for information to share with your provider and your spouse and your child's school and your family and friends.
There are a number of facebook pages dedicated to PANDAS parent support and information sharing, and also the Latitudes blog for PANDAS parents. Please reach out and if you can't find this information, contact me and I will help you find it.
It is so important to not be alone out there. I am so healing from just too much time alone, dealing with my son's illness. My heart is broken, it just is, but I have had some recent moments of feeling very whole and very peaceful. And of remembering other times I felt that way, and enjoying those memories and connecting to them.
My life became, like, a blip. Surreal. An isolated, warped kind of existance that did not share hardly anything with the rest of the world. So weird. But now I'm coming back, and for this I'm so grateful.
Don't let this happen to you. Don't suffer more than you have to, simply because you can. Reach out to someone, today, and stay real in the world. Don't slip into nothing.
For me, in addition to holding the intention that my son's wellbeing is solid, and his future stays bright and real, I also hope and pray for my own. For my well being, and that my future opens up as bright and real. That I land solid, back into wholeness, my own peaceful place, and that my path forward is obvious and joyful and full of all the love and joy that I missed out on, all those years of suffering alone, as my child fell apart and our life disintegrated.
I am also holding an intention of well being for YOU. Keep your future bright and real. Pray for Peace, within yourself, and stay real, for yourself and for your family. Keep reaching out. Be strong and pull up your courage every day. Find inspiration wherever you can and share it and bring yourself back every day. Have someone, anyone, tell you that you are beautiful every day. Tell yourself. Its not you, its not your fault. You are amazing and brilliant. You are keeping your child alive, and your child is going to get better, because of you. You can do this.
What intention are you holding for today? I already know what you are wanting for your child...Do Not Give Up, and Do Not Settle For Bad Care. Stay true to your instincts about what your child needs and find the medical care they need, even if you have to travel, its worth it.
What are you holding as a possibility for yourself today?
One day, the world will be a better place for PANDAS children. That world is coming, but we are a long way off. In the meantime, we have to do battle. Roll up your sleeves and sharpen your weapons. But you do not have to do this battle alone.
Monday, June 30, 2014
Tuesday, June 24, 2014
Taking It On The Road
Tomorrow, I am going to Mexico, on a vacation.
This is the first vacation on nearly 8 years. This is so amazing.
Lance and I and friends are going to Mexico for no other reason than to play.
I can't wait to see how this helps me change my thinking. I expect happy feelings, appreciation of beauty, clarity, and relaxation. Who knows what else will show up? Perhaps a change of heart...
This is the first vacation on nearly 8 years. This is so amazing.
Lance and I and friends are going to Mexico for no other reason than to play.
I can't wait to see how this helps me change my thinking. I expect happy feelings, appreciation of beauty, clarity, and relaxation. Who knows what else will show up? Perhaps a change of heart...
Sunday, June 22, 2014
Damage Control
Here's a sad thing.
Its hard to go back and clean up messes that you made when you were a mess.
There's no way to justify it, and there's only so many times you can retell a story, or what you were doing or thinking when your brain was messed up.
So to all humans in my life, I am sending a blanket apology for that I really got lost for a few weeks or maybe even a few years, and I really lost my perspective on some things.
It was actually not my fault. I had an incredible fall with PTSD. I'm recovering from this. This was inevitable and I'm ok.
I am really sorry for whatever it cost anyone in terms of happiness or peace or trust.
Bad years plus PTSD = Bad brain, bad perspective, bad days and bad weeks.
I discovered that at the absolute core of the PTSD is a powerful experience of abandonment. I really got that today. That feeling was at the heart of my life as a mother with a child with PANDAS, and as a woman, the way it came down for me, was this experience of being completely abandoned by anything and anyone in life that was ever good. I never let that stop me. But then as soon as I had a current situation that even remotely felt like that, it was part of the what triggered those incredible panic attacks that I had. This almost crippling feeling of being abandoned and alone, but the intensity was so cranked up it was not normal. It was terrifying and lacked any perspective or power to do anything constructive about it. I never went through anything like that before, and of course everyone ended up being hurt. And i feel pretty bad about that. One thing I do not believe that I do very often, is hurt people. Its hard to forgive myself for this incredible breech of trust, someone's heart, that I hurt by my process. But it is yet another thing I must add to the list of things I need to let go of. Fortunately, this person is a true friend and we walked all the way through it, and for that I'm super grateful.
If this happens to you, this is what PTSD looks like. It bleeds the past trauma so into your present that you can't tell the difference and its super intense. You get it all over people. If you are losing your perspective like this, its ok and its not your fault, but you probably need some help, and that's ok, too. It's good, actually, because its a sign that you are moving forward, out of your trauma and back into your life.
So I am apologizing to anyone out there, to whom I owe any apology over the last eight years for any reason related to that I was sucked up into a sucky and unhealthy PANDAS life.
If I let you down, I'm sorry.
If I didn't trust you and I should have trusted you, I'm sorry.
If I disappeared and didn't tell you why, or if I didn't let you help me, or judged you for not being enough or helping me enough or understanding me enough or fixing PANDAS enough, I'm really sorry.
If I needed you but didn't tell you, I'm sorry. And especially if then I was angry because you weren't there, I'm very sorry.
If I was too caught up in myself and wasn't a good friend to you anymore, I'm sorry.
If I showed up as someone so self absorbed and believing that my problems were bigger or more important than yours, I'm really sorry.
If there is anything else I may have done on a human front that hurt, disregarded or disappointed you, i'm sorry and i'm certain I did not mean it. I was simply overwhelmed. I would do anything to make it up.
I am more than what you see out here.
Thank you for listening.
Its hard to go back and clean up messes that you made when you were a mess.
There's no way to justify it, and there's only so many times you can retell a story, or what you were doing or thinking when your brain was messed up.
So to all humans in my life, I am sending a blanket apology for that I really got lost for a few weeks or maybe even a few years, and I really lost my perspective on some things.
It was actually not my fault. I had an incredible fall with PTSD. I'm recovering from this. This was inevitable and I'm ok.
I am really sorry for whatever it cost anyone in terms of happiness or peace or trust.
Bad years plus PTSD = Bad brain, bad perspective, bad days and bad weeks.
I discovered that at the absolute core of the PTSD is a powerful experience of abandonment. I really got that today. That feeling was at the heart of my life as a mother with a child with PANDAS, and as a woman, the way it came down for me, was this experience of being completely abandoned by anything and anyone in life that was ever good. I never let that stop me. But then as soon as I had a current situation that even remotely felt like that, it was part of the what triggered those incredible panic attacks that I had. This almost crippling feeling of being abandoned and alone, but the intensity was so cranked up it was not normal. It was terrifying and lacked any perspective or power to do anything constructive about it. I never went through anything like that before, and of course everyone ended up being hurt. And i feel pretty bad about that. One thing I do not believe that I do very often, is hurt people. Its hard to forgive myself for this incredible breech of trust, someone's heart, that I hurt by my process. But it is yet another thing I must add to the list of things I need to let go of. Fortunately, this person is a true friend and we walked all the way through it, and for that I'm super grateful.
If this happens to you, this is what PTSD looks like. It bleeds the past trauma so into your present that you can't tell the difference and its super intense. You get it all over people. If you are losing your perspective like this, its ok and its not your fault, but you probably need some help, and that's ok, too. It's good, actually, because its a sign that you are moving forward, out of your trauma and back into your life.
So I am apologizing to anyone out there, to whom I owe any apology over the last eight years for any reason related to that I was sucked up into a sucky and unhealthy PANDAS life.
If I let you down, I'm sorry.
If I didn't trust you and I should have trusted you, I'm sorry.
If I disappeared and didn't tell you why, or if I didn't let you help me, or judged you for not being enough or helping me enough or understanding me enough or fixing PANDAS enough, I'm really sorry.
If I needed you but didn't tell you, I'm sorry. And especially if then I was angry because you weren't there, I'm very sorry.
If I was too caught up in myself and wasn't a good friend to you anymore, I'm sorry.
If I showed up as someone so self absorbed and believing that my problems were bigger or more important than yours, I'm really sorry.
If there is anything else I may have done on a human front that hurt, disregarded or disappointed you, i'm sorry and i'm certain I did not mean it. I was simply overwhelmed. I would do anything to make it up.
I am more than what you see out here.
Thank you for listening.
Friday, June 20, 2014
Score One For The Team
Today was the third and final day of Vanessa's first IVIg treatment. I can't stop thinking about her.
Vanessa spoke at the West Coast PANS/PANDAS Parent Symposium in April of this year. Her story is one of grace and humility, tragedy and victory.
Vanessa developed PANDAS when she was 11 years old. Severe OCD as well as other physical symptoms and cognitive issues. She tried to hide it from her parents because the OCD told her that if she told them, they would die. So she didn't tell them, for years. Instead she mostly suffered in silence, struggling her way through school and work and life and friendships.
It wasn't until she was 28 years old, living in NYC working on an internship or school, I can't exactly remember, when she heard about a study at the OCD clinic at Columbia University Hospital. During the screening, they discovered that they thought she may have PANDAS. When her work was done in NY, she came back to the Bay Area and followed up at UCSF neurology, where they diagnosed her with PANDAS and autoimmune encephalitis.
After 3 days of intravenous solumedrol, Vanessa told me that her mind was silent for the first time in 18 years. She could barely recognize the quiet personal space that was her own self. Can you imagine what this would be like?? I doubt we really can. This was early 2013.
Since this time, Vanessa has had alot of treatment, alot of antibiotics, and alot alot of steroids. They help but not for long, of course, the inflammatory autoimmune process is so engaged, and the effects wear off faster and faster. The side effects of long term high dose steroid use are very bad for you, and very uncomfortable.
So after months of being turned down for IVIg by her insurance through the state of California Health Plan, her treatment was finally approved. One treatment. UCSF is pushing for six. There is no certainty that her insurance will cover any more.
How did Vanessa get her insurance to cover the IVIg? She never took no for an answer. She continued to escalate her request, and got all the way to a lawsuit. She devised and filed a formal petition with the required number of signatures to push her insurance to cover IVIg for PANS/PANDAS and AutoImmune Encephalitis as a rule. She backed off of having the hearing that was supposed to be on June 2, when just a couple of days before, her insurance said they would cover it. Well, of course they wanted to avoid a judgement! So they caved before that could happen and said they would cover her treatement.
Today she told me that her insurance has called her a number of times asking her to please call off the lawsuit. Vanessa was conflicted, because of her generous spirit. She wants to continue to push for parity of IVIg coverage for everyone. But I'm afraid that if she keeps on pushing them, they could totally deny her future treatments.
Another dilemma. Do you do what might the best thing for everyone and possibly risk yor own best interest?
I suggested to Vanessa that she not continue with the lawsuit, at least not for now, until she has gotten what she personally needs. Vanessa deserves to be well, and simply cannot risk losing the coverage.
Hopefully, stories like Vanessa will soon be a thing of the past for PANDAS/PANS children. And meanwhile, she is a warrior and an extraordinary being and one of the biggest people and most humble human beings I have ever met.
I love you, Vanessa. I am so happy for you, that you are having your treatment, and so proud of the simple quiet courage that you portray day in and day out, and your willingness to find hope after all those years of illness, and pursue it.
You are an example of one of the best people on this planet and I am blessed to know you, and to have the chance to watch you come back.
Vanessa spoke at the West Coast PANS/PANDAS Parent Symposium in April of this year. Her story is one of grace and humility, tragedy and victory.
Vanessa developed PANDAS when she was 11 years old. Severe OCD as well as other physical symptoms and cognitive issues. She tried to hide it from her parents because the OCD told her that if she told them, they would die. So she didn't tell them, for years. Instead she mostly suffered in silence, struggling her way through school and work and life and friendships.
It wasn't until she was 28 years old, living in NYC working on an internship or school, I can't exactly remember, when she heard about a study at the OCD clinic at Columbia University Hospital. During the screening, they discovered that they thought she may have PANDAS. When her work was done in NY, she came back to the Bay Area and followed up at UCSF neurology, where they diagnosed her with PANDAS and autoimmune encephalitis.
After 3 days of intravenous solumedrol, Vanessa told me that her mind was silent for the first time in 18 years. She could barely recognize the quiet personal space that was her own self. Can you imagine what this would be like?? I doubt we really can. This was early 2013.
Since this time, Vanessa has had alot of treatment, alot of antibiotics, and alot alot of steroids. They help but not for long, of course, the inflammatory autoimmune process is so engaged, and the effects wear off faster and faster. The side effects of long term high dose steroid use are very bad for you, and very uncomfortable.
So after months of being turned down for IVIg by her insurance through the state of California Health Plan, her treatment was finally approved. One treatment. UCSF is pushing for six. There is no certainty that her insurance will cover any more.
How did Vanessa get her insurance to cover the IVIg? She never took no for an answer. She continued to escalate her request, and got all the way to a lawsuit. She devised and filed a formal petition with the required number of signatures to push her insurance to cover IVIg for PANS/PANDAS and AutoImmune Encephalitis as a rule. She backed off of having the hearing that was supposed to be on June 2, when just a couple of days before, her insurance said they would cover it. Well, of course they wanted to avoid a judgement! So they caved before that could happen and said they would cover her treatement.
Today she told me that her insurance has called her a number of times asking her to please call off the lawsuit. Vanessa was conflicted, because of her generous spirit. She wants to continue to push for parity of IVIg coverage for everyone. But I'm afraid that if she keeps on pushing them, they could totally deny her future treatments.
Another dilemma. Do you do what might the best thing for everyone and possibly risk yor own best interest?
I suggested to Vanessa that she not continue with the lawsuit, at least not for now, until she has gotten what she personally needs. Vanessa deserves to be well, and simply cannot risk losing the coverage.
Hopefully, stories like Vanessa will soon be a thing of the past for PANDAS/PANS children. And meanwhile, she is a warrior and an extraordinary being and one of the biggest people and most humble human beings I have ever met.
I love you, Vanessa. I am so happy for you, that you are having your treatment, and so proud of the simple quiet courage that you portray day in and day out, and your willingness to find hope after all those years of illness, and pursue it.
You are an example of one of the best people on this planet and I am blessed to know you, and to have the chance to watch you come back.
Tuesday, June 17, 2014
Letting The Chips Fall
"Rock bottom became a solid foundation upon which I rebuilt my life." ― J.K. Rowling
One thing I notice about gratitude. It just rises to the top. While faith is a choice that i wrestle with, gratitude just naturally shows up. It floats right up to the top of awareness like a breath of fresh air, and puts everything in place.
Right now I am feeling incredibly grateful - for myself, and for my brain's recovery.
I feel like I have gone through the eye of the storm, or the eye of the needle, of my PTSD. The panic attacks have really subsided, and every day I feel like my mental health is being restored to me. I cannot express the gratitude I have for my own self right now, my own thoughts.
I remember now. I used to love myself. I remember I used to completely trust my feelings and my thoughts. I remember I loved to spend time with myself doing things in the world. I remember the world was safe and loving as a context for my life. I remember now.
PANDAS stole my peace of mind and I was afraid I might never come back. But I am remembering now.
I am finding myself incredibly clear. Its familiar. Its intense, though. Its more laser-like than, say, a sitting back spacious kind of clarity. But not intense in a bad way. Maybe the intensity simply matches the degree I need that clarity right now to put my life back in order. I need the strength it will bring me to do the next round of hard work. I need it to take stock, tell the truth about my life and maybe some people in my life, and let the chips fall where they may.
A few weeks ago, while I was deep inside my PTSD, I took stock of my life, what shreds are left from my PANDAS journey, and what I found terrified me. Bankrupt, no credit, no savings left, no homes left, no marriage, living in this far away land, in exile, facing starting over from from scratch at 58 years old. This scared the living crap out of me and was actually a part of the panic. (Just so you know, I recommend NOT doing that when you are in the middle of a mental health breakdown. The last thing you need are more reasons to be terrified). A breakdown which, by the way, was absolutely inevitable and necessary. I was already broken down but I was fighting it. I had to go all the way down, to the rockest bottom. I had to completely dissemble any shred of belief I may have left that I had any control over anything. I had to fall to the place beyond which I could not fall any further. God, I hope I can't fall further. The only other place to go would be total nervous breakdown, which I can only imagine, includes meds and a hospital stay. Or death. If I didn't go there this time, I never will.
I can't pretend that I can control anything. I can't pretend I can fix my circumstances very easily and I can't pretend I can't fix them. I've always been enough before and I can only guess I will continue to be so. I certainly cannot control people. I cannot control which people stay in my life and which don't. This is the most painful of all. In fact, one thing PANDAS has taught me is that I can't really control anything. For awhile, I didn't even have control of my mental health. That was the scariest thing of all. Not only for me, but I'm sure for people around me.
So today, I remember. Today I am clear. Today I feel gratitude. Today I feel right relationship within myself, a lining up of parts that feels familiar. And today will be a good day. Today I will tell the truth. Well, I always try to tell the truth, but today, I will trust that the truth that I tell is reliable. And for that, I couldn't be more grateful.
One thing I notice about gratitude. It just rises to the top. While faith is a choice that i wrestle with, gratitude just naturally shows up. It floats right up to the top of awareness like a breath of fresh air, and puts everything in place.
Right now I am feeling incredibly grateful - for myself, and for my brain's recovery.
I feel like I have gone through the eye of the storm, or the eye of the needle, of my PTSD. The panic attacks have really subsided, and every day I feel like my mental health is being restored to me. I cannot express the gratitude I have for my own self right now, my own thoughts.
I remember now. I used to love myself. I remember I used to completely trust my feelings and my thoughts. I remember I loved to spend time with myself doing things in the world. I remember the world was safe and loving as a context for my life. I remember now.
PANDAS stole my peace of mind and I was afraid I might never come back. But I am remembering now.
I am finding myself incredibly clear. Its familiar. Its intense, though. Its more laser-like than, say, a sitting back spacious kind of clarity. But not intense in a bad way. Maybe the intensity simply matches the degree I need that clarity right now to put my life back in order. I need the strength it will bring me to do the next round of hard work. I need it to take stock, tell the truth about my life and maybe some people in my life, and let the chips fall where they may.
A few weeks ago, while I was deep inside my PTSD, I took stock of my life, what shreds are left from my PANDAS journey, and what I found terrified me. Bankrupt, no credit, no savings left, no homes left, no marriage, living in this far away land, in exile, facing starting over from from scratch at 58 years old. This scared the living crap out of me and was actually a part of the panic. (Just so you know, I recommend NOT doing that when you are in the middle of a mental health breakdown. The last thing you need are more reasons to be terrified). A breakdown which, by the way, was absolutely inevitable and necessary. I was already broken down but I was fighting it. I had to go all the way down, to the rockest bottom. I had to completely dissemble any shred of belief I may have left that I had any control over anything. I had to fall to the place beyond which I could not fall any further. God, I hope I can't fall further. The only other place to go would be total nervous breakdown, which I can only imagine, includes meds and a hospital stay. Or death. If I didn't go there this time, I never will.
I can't pretend that I can control anything. I can't pretend I can fix my circumstances very easily and I can't pretend I can't fix them. I've always been enough before and I can only guess I will continue to be so. I certainly cannot control people. I cannot control which people stay in my life and which don't. This is the most painful of all. In fact, one thing PANDAS has taught me is that I can't really control anything. For awhile, I didn't even have control of my mental health. That was the scariest thing of all. Not only for me, but I'm sure for people around me.
So today, I remember. Today I am clear. Today I feel gratitude. Today I feel right relationship within myself, a lining up of parts that feels familiar. And today will be a good day. Today I will tell the truth. Well, I always try to tell the truth, but today, I will trust that the truth that I tell is reliable. And for that, I couldn't be more grateful.
Sunday, June 15, 2014
I Am Coming Out (part 3): Back From the Edge...
"THE EDGE, there is no honest way to explain it because the only people who really know where it is are the ones who have gone over. ― Hunter S. Thompson"
One thing I can say is, its not just that PANDAS came into my world. Its that every single thing that was good, left it. Everything. I will not recount what is already on these blog pages, the list is too long and I am unwilling to be victimized by it any more. But I can say this. My world got way too small for way too long. I could handle it all, but handling it alone, in exile, for so long, please. I know plenty of families and moms that while they are tortured by this illness, they have the added resilience that comes from husbands and families, friends, homes and the rest of life that we lost in the nearly 4 years it took to diagnose my son and the nearly 4 years it then took to get him better. Many others, like me, are left with nothing but a little teeny world that fits on a pinhead. So if regrowing my personal life is paramount to any early or enduring success of my healing... where to begin? Regaining perspective from within, that is my goal. Or creating one from scratch if that is necessary.
But can someone ever really come back from over the edge? Is it possible to find the bridge back to happiness? To restore my faith? I don't know. I do not know that I’ll ever believe in the world or a God or a person the same way. I may never regain that pure sustained connection to a high vibration of love and truth and goodness as it resonates in the universe that I believed was the essence of creation. That part of me might be broken. Or maybe, I was wrong. Maybe it was a hallucination after all. I will have to find this out.
I don’t know if I will ever feel back in sync with the rest of the world. But you know, when I really think about that, in many ways I never was anyway. I always followed my own rhythm, and lived and loved in my own way and in my own time. But the difference is, it never bothered me before. When people were flocking home from the beach because it was so freaking windy, I was just suiting up and rigging my windsurf board. As an adult, I never felt like an outsider to life; if anything, in my own quirky way I felt like I was always one or two or ten steps ahead of the crowd, or lifetimes ahead, and I didn’t really care. That is the breech. That I even give a shit.
Can the rift in my soul be repaired? I don’t know. I see other broken people and I know in my heart that they can heal. I know some people who believe they are so damaged but when I see them, I see a soul that is still pure and people that are suffering but still whole, and still worth loving. In this moment while I can’t see that about myself exactly, seeing it in others may be the first step, and I will hope for that.
So, here I stand, scratching my head. How to repair what may be irreparable.
Ultimately, all the understanding and therapy and EMDR trauma sessions and all the explaining in the world cannot fix anything, although insights are valuable and can be healing. They can help you change your mind about things.
Ultimately, I am faced with only one possibility that I know of, an inner shift that can only come from me. A leap of faith. A choice based on nothing but a feeling, an instinct. This has always been my strength, the power to choose a leap in faith. Faith is not a given. There is no already “is” faith, like a thing that you have or don’t have. Faith is a creation, a choice. I called it in, I built it, I chose it, over time, over years, from nothing but a dream, as a little girl. I remember doing that, I remember the moment it occurred to me, that I realized that faith is an option and I prayed that faith would find me, that it would stop me from being so scared. And it did, it has been my best friend all my life. Now I keep reminding myself I can create it again. Choose, Amy, just do it. But I don’t know. That bridge just feels too broken. I would have to forgive the entire fucking world, and I just can’t, not yet. No bridge can bear the weight of that.
So for now, I’m here, on this side, stuck. But at least I can see it for what it is. At some point, because I am me, I will likely find a way to call forth the courage and the will for such radical forgiveness, because the other option is simply so unappealing. Life on the wrong side of the bridge= Bad. But I don’t own that level of courage right now. I don’t know if it is even accomplishable as a purely solitary effort or may require an entire group effort, or planetary effort, or maybe a lot of drugs. Ultimately I have to find out if the road back over that bridge is still even in me, at all, or if I ultimately care enough to even be that generous as to dole out such massive amounts of forgiveness, because I’m not sure that anyone really deserves it at the moment.
Grace is a beautiful thing, it should be deserved but also, I know that the essence of grace through forgiveness is that it must be freely bestowed and for my own sole benefit, my own freedom. No one knows or cares or is burdened by my broken heart, but myself. Well, my child sees me pull it up every day, and for his benefit alone, I should push myself through this next step. But it still feels like I’d be doing the planet a favor, redemption for its own sake and all that does right now is call up resentment. How dare you for steal my life and then make it my job to somehow wrangle it back? Forgiveness for that feels miles away, light years away.
Hmmmm, so thus the dilemma continues for the moment. How to come back from over the edge?
One thing I can say is, its not just that PANDAS came into my world. Its that every single thing that was good, left it. Everything. I will not recount what is already on these blog pages, the list is too long and I am unwilling to be victimized by it any more. But I can say this. My world got way too small for way too long. I could handle it all, but handling it alone, in exile, for so long, please. I know plenty of families and moms that while they are tortured by this illness, they have the added resilience that comes from husbands and families, friends, homes and the rest of life that we lost in the nearly 4 years it took to diagnose my son and the nearly 4 years it then took to get him better. Many others, like me, are left with nothing but a little teeny world that fits on a pinhead. So if regrowing my personal life is paramount to any early or enduring success of my healing... where to begin? Regaining perspective from within, that is my goal. Or creating one from scratch if that is necessary.
But can someone ever really come back from over the edge? Is it possible to find the bridge back to happiness? To restore my faith? I don't know. I do not know that I’ll ever believe in the world or a God or a person the same way. I may never regain that pure sustained connection to a high vibration of love and truth and goodness as it resonates in the universe that I believed was the essence of creation. That part of me might be broken. Or maybe, I was wrong. Maybe it was a hallucination after all. I will have to find this out.
I don’t know if I will ever feel back in sync with the rest of the world. But you know, when I really think about that, in many ways I never was anyway. I always followed my own rhythm, and lived and loved in my own way and in my own time. But the difference is, it never bothered me before. When people were flocking home from the beach because it was so freaking windy, I was just suiting up and rigging my windsurf board. As an adult, I never felt like an outsider to life; if anything, in my own quirky way I felt like I was always one or two or ten steps ahead of the crowd, or lifetimes ahead, and I didn’t really care. That is the breech. That I even give a shit.
Can the rift in my soul be repaired? I don’t know. I see other broken people and I know in my heart that they can heal. I know some people who believe they are so damaged but when I see them, I see a soul that is still pure and people that are suffering but still whole, and still worth loving. In this moment while I can’t see that about myself exactly, seeing it in others may be the first step, and I will hope for that.
So, here I stand, scratching my head. How to repair what may be irreparable.
Ultimately, all the understanding and therapy and EMDR trauma sessions and all the explaining in the world cannot fix anything, although insights are valuable and can be healing. They can help you change your mind about things.
Ultimately, I am faced with only one possibility that I know of, an inner shift that can only come from me. A leap of faith. A choice based on nothing but a feeling, an instinct. This has always been my strength, the power to choose a leap in faith. Faith is not a given. There is no already “is” faith, like a thing that you have or don’t have. Faith is a creation, a choice. I called it in, I built it, I chose it, over time, over years, from nothing but a dream, as a little girl. I remember doing that, I remember the moment it occurred to me, that I realized that faith is an option and I prayed that faith would find me, that it would stop me from being so scared. And it did, it has been my best friend all my life. Now I keep reminding myself I can create it again. Choose, Amy, just do it. But I don’t know. That bridge just feels too broken. I would have to forgive the entire fucking world, and I just can’t, not yet. No bridge can bear the weight of that.
So for now, I’m here, on this side, stuck. But at least I can see it for what it is. At some point, because I am me, I will likely find a way to call forth the courage and the will for such radical forgiveness, because the other option is simply so unappealing. Life on the wrong side of the bridge= Bad. But I don’t own that level of courage right now. I don’t know if it is even accomplishable as a purely solitary effort or may require an entire group effort, or planetary effort, or maybe a lot of drugs. Ultimately I have to find out if the road back over that bridge is still even in me, at all, or if I ultimately care enough to even be that generous as to dole out such massive amounts of forgiveness, because I’m not sure that anyone really deserves it at the moment.
Grace is a beautiful thing, it should be deserved but also, I know that the essence of grace through forgiveness is that it must be freely bestowed and for my own sole benefit, my own freedom. No one knows or cares or is burdened by my broken heart, but myself. Well, my child sees me pull it up every day, and for his benefit alone, I should push myself through this next step. But it still feels like I’d be doing the planet a favor, redemption for its own sake and all that does right now is call up resentment. How dare you for steal my life and then make it my job to somehow wrangle it back? Forgiveness for that feels miles away, light years away.
Hmmmm, so thus the dilemma continues for the moment. How to come back from over the edge?
Saturday, June 14, 2014
I Am Coming Out (Part 2): PTSD Sucks
"Strength isn’t about how much you can handle before you break, it’s about how much you can handle after you break."
I am sharing this story for 3 reasons:
1. In case it helps you recover which I hope it will
2. In case it helps me recover which I believe it will
3. PTSD sucks but it can be overcome
A bunch of years ago, I remember being in the high desert of Taos, listening to the hum of the land and watching a sunset through these incredible steamy hot springs. I had been out there for like 4 or 5 days, just singing and thinking and praying and stretching and walking and talking to the rocks and rubbing sage on my face or whatever. I imagine there was some moon howling going on at times. So perfectly at home; happy, content. I remember an awareness of connection to the vibration of love flowing through the universe, creating me and all of life, literally constituting me. No I was not using any hallucinogens:) I was high on life. And I remember thinking that if the world ends tomorrow and I am the only human left (like in the Twilight Zone, you know….) I would be ok. That no matter what, I was and we are always connected to the flow of everything and there is nothing to be afraid of, now or ever. Granted, I was not a mom yet, so I did not have that same visceral attachment to the earth. And yes, I was definitely a little out there, but those are the kinds of thoughts you start to have when you’re way the heck out there in the wilderness by yourself for any period of time, or at least that I have. Its why I love the wilderness. These ah ha! universal principle recognition thoughts reveal themselves. Well, Thoreau had them at Walden, and was famous for them. its just what happens. Either you slip into some weird common hallucination or maybe tap into an incredible river of truth. I choose to think the latter, as a reflection of my personal integrity and nature, that life is good, and trustworthy. It is enough for me, and I am enough for life. This constitutes my faith, and this is how I have lived. Simple, internal, nothing to prove, and nothing to fear. No matter what, I have always come back to this, faith in the inherent goodness of life, love as the glue that holds the world together.
Then this thing happened. Over time, PANDAS burned a hole right through my ability to generate faith. And I am not a fickle or weak person. in fact I am one of the strongest, most devoted and loyal humans on the planet. PANDAS ripped a breech in my most fundamental orientation to life, the knowing that no matter what it looks like in the moment, the principle that drives life as we know it is inherently good. That my personal connection to life is enough. That our life force is sustained through a loving universe. And its not only that it didn’t go down that way, its not only how awful the things were that actually happened. It was that the prolonged anguish invaded my psyche and soul, like a virus, and inserted itself right into my DNA, right into that place where my faith used to live. And replicated itself, in secret. Like a virus, like a parasite, like an intracellular infection, like PANDAS of the soul
And that set off the series of panic attacks I experienced over the last couple of months. Just as I was starting to feel better! Just as I was opening my heart back up. Just as I began to relax and trust and land back inside myself, instead of peace, or faith, or space, deep down, in my familiar self - instead of me, I encountered this shocking fount of anguish. and a huge fear thing that came on. Fear that it would simply kill me and a crushing feeling in my chest of the anguish and I couldn’t breathe. wtf! That= panic. I ended up in the ER. I thought maybe I was having a heart attack. WTF!! it was a panic attack, yet...I had nothing to be panicking over! Nothing! Things were GOOD!!
This is PTSD, true PTSD. Post War Syndrome. Just when you should be feeling better, you're feeling worse - sometimes. And inappropriately. And maybe having panic attacks, or pictures and memories of terrible moments that constantly come back and make you feel just as awful as you did when it happened, or worse even. Because now you're totally judging yourself for feeling bad on top of how bad you may be feeling. And people around you think, what is your problem NOW? Aren't you EVER going to be happy? Your kid is well now, all this stuff, he got into a great school, blah blah fucking blah why are you crying now?? Well, what can they possibly know about me? Or anyone who cannot understand yet wants to believe they can judge me and what I have been through, what any of us have been through, and what the aftermath looks like, and whether or not I am a trust worthy lovable human being worth supporting. All they do is add to the trauma, with all their good intentions.
Fortunately, I have an amazing therapist I have seen on and off over the nearly 8 years of Lance's illness, who knows me really well. She knew me from the beginning, and has seen me in alot of different spaces, and has assured me, probably dozens of times by now, that I am not losing my mind, I am having PTSD and this is what it looks like. She swears to me I will get better and not die during a panic attack when the claustrophia from the pressure on my chest and that feeling of being invisible was so profound and terrifying I could not only not breathe, I could not imagine ever breathing ever. I have seen her alot these last few weeks, there is no other way. We've done EMDR sessions that are deep and are specific to releasing trauma from your psyche, and I recommend them. I had thought I also was experiencing some waves of anxiety, but I can see now that anxiety was the wrong word, that it was just a smokescreen. What's really there is heartbreak, unbearable grief. And homesickness. That is my inheritance and my process right now.
I hope that you, dear reader, in this moment, take stock of who is left in your life that you can turn to, even if it is just one person. Who that person is may surprise you, and who they are not will also surprise you. Even if it is someone you don't really know, but talk to on PANDAS facebook page or blog, it is imperitive that you have someone somewhere to reach out to. I lost so many people along the way. Seven years is just too long to expect anyone to just hang in there. Oh well. For some, seven months is too long. In the end, our friends and families will show their true character, and what kind of people and friends they really are. So will we.
I am blessed to have people in my life with strong character. An amazing sister that stands by me so closely, and has been so there throughout this incredible journey, that no matter how crazy or bad or breathless or what a loser I feel like, I can turn to her. I am SO GRATEFUL, for you, Robin.
Diana, my very dear incredible friend, PANDAS mother to many, day in and day out, visionary and co-conspirator.
Not to mention an extraordinary group of women who happen to also have children with PANDAS; so many, that are always right in it for each other, showing the world a better way to be there, what being a friend is really about.
My mother-in-law, a beautiful woman who knows how to listen, how to express compassion, how to create context, how to offer strength. I am SO Grateful.
My friend Jody is always there when I reach out and for that I am SO Grateful.
Well, its nearly 2 weeks since I’ve experienced a real panic attack. Sometimes I do feel it begin to come on, but I can manage it down. If I can't within just a few minutes, I pick up the phone. I find that if I just connect to someone for a moment, it reexpands my world and I almost instantly feel better, like, pulling the plug on the isolation part that seems real in the moment but it is not. Its just a remnant of those long terrible nights at home with my kid freaking out and no one to call and no where to turn...the memories of those nights. I mean, face it, you can't bring your flaring PANDAS kid into the ER simply because he's hallucinating. What are they going to do anyway? Shove him full of meds? or worse? Threaten to hospitalize him? Or to take him away from you? So its not just that you feel stuck - YOU ARE ABSOLUTELY STUCK!!! Well, that's what it feels like anyway. And to some degree, yes you are stuck. We have all heard of those terrible stories of children being taken from their parents for treating PANDAS. But the chances of this are remarkably slim. At the worst, more than likely, they will just give your child a bunch of anti-anxiety medication and tell you to followup with a psychiatrist. And you all would have survived another night.
And, hopefully one day soon, this will all change! It is changing right now. More and more people and providers know about PANDAS. NIMH is doing their best to recruit some brilliant researchers and providers and get the word out there more and more, so that within just a few years hopefully all front line pediatric providers including teachers and occupational therapists, doctors, nurse practitioners, school nurses, psychiatrists, psychologists, immunologists, guidance counselors, neurologists, you name it - anyone working with children - will know to think about PANDAS first. NIMH believes that at the minimum, 1 in every 200 children has PANDAS. It will happen in our lifetime, but maybe, not for our own children.
Someone told me recently they had to call the police on their PANDAS teenager that was becoming violent and it was so upsetting, but it turned out that one of the policemen knew about PANDAS and was so kind to this child, so supportive. THIS is what we need more of, and THIS is where we are going, it just is taking time.
Right now I feel stronger than I have in a long time, because things are beginning to make sense. I look forward to sharing more with you very soon, about this next part of my journey back.
Meanwhile, Stay strong out there!
LOVE AMY
I am sharing this story for 3 reasons:
1. In case it helps you recover which I hope it will
2. In case it helps me recover which I believe it will
3. PTSD sucks but it can be overcome
A bunch of years ago, I remember being in the high desert of Taos, listening to the hum of the land and watching a sunset through these incredible steamy hot springs. I had been out there for like 4 or 5 days, just singing and thinking and praying and stretching and walking and talking to the rocks and rubbing sage on my face or whatever. I imagine there was some moon howling going on at times. So perfectly at home; happy, content. I remember an awareness of connection to the vibration of love flowing through the universe, creating me and all of life, literally constituting me. No I was not using any hallucinogens:) I was high on life. And I remember thinking that if the world ends tomorrow and I am the only human left (like in the Twilight Zone, you know….) I would be ok. That no matter what, I was and we are always connected to the flow of everything and there is nothing to be afraid of, now or ever. Granted, I was not a mom yet, so I did not have that same visceral attachment to the earth. And yes, I was definitely a little out there, but those are the kinds of thoughts you start to have when you’re way the heck out there in the wilderness by yourself for any period of time, or at least that I have. Its why I love the wilderness. These ah ha! universal principle recognition thoughts reveal themselves. Well, Thoreau had them at Walden, and was famous for them. its just what happens. Either you slip into some weird common hallucination or maybe tap into an incredible river of truth. I choose to think the latter, as a reflection of my personal integrity and nature, that life is good, and trustworthy. It is enough for me, and I am enough for life. This constitutes my faith, and this is how I have lived. Simple, internal, nothing to prove, and nothing to fear. No matter what, I have always come back to this, faith in the inherent goodness of life, love as the glue that holds the world together.
Then this thing happened. Over time, PANDAS burned a hole right through my ability to generate faith. And I am not a fickle or weak person. in fact I am one of the strongest, most devoted and loyal humans on the planet. PANDAS ripped a breech in my most fundamental orientation to life, the knowing that no matter what it looks like in the moment, the principle that drives life as we know it is inherently good. That my personal connection to life is enough. That our life force is sustained through a loving universe. And its not only that it didn’t go down that way, its not only how awful the things were that actually happened. It was that the prolonged anguish invaded my psyche and soul, like a virus, and inserted itself right into my DNA, right into that place where my faith used to live. And replicated itself, in secret. Like a virus, like a parasite, like an intracellular infection, like PANDAS of the soul
And that set off the series of panic attacks I experienced over the last couple of months. Just as I was starting to feel better! Just as I was opening my heart back up. Just as I began to relax and trust and land back inside myself, instead of peace, or faith, or space, deep down, in my familiar self - instead of me, I encountered this shocking fount of anguish. and a huge fear thing that came on. Fear that it would simply kill me and a crushing feeling in my chest of the anguish and I couldn’t breathe. wtf! That= panic. I ended up in the ER. I thought maybe I was having a heart attack. WTF!! it was a panic attack, yet...I had nothing to be panicking over! Nothing! Things were GOOD!!
This is PTSD, true PTSD. Post War Syndrome. Just when you should be feeling better, you're feeling worse - sometimes. And inappropriately. And maybe having panic attacks, or pictures and memories of terrible moments that constantly come back and make you feel just as awful as you did when it happened, or worse even. Because now you're totally judging yourself for feeling bad on top of how bad you may be feeling. And people around you think, what is your problem NOW? Aren't you EVER going to be happy? Your kid is well now, all this stuff, he got into a great school, blah blah fucking blah why are you crying now?? Well, what can they possibly know about me? Or anyone who cannot understand yet wants to believe they can judge me and what I have been through, what any of us have been through, and what the aftermath looks like, and whether or not I am a trust worthy lovable human being worth supporting. All they do is add to the trauma, with all their good intentions.
Fortunately, I have an amazing therapist I have seen on and off over the nearly 8 years of Lance's illness, who knows me really well. She knew me from the beginning, and has seen me in alot of different spaces, and has assured me, probably dozens of times by now, that I am not losing my mind, I am having PTSD and this is what it looks like. She swears to me I will get better and not die during a panic attack when the claustrophia from the pressure on my chest and that feeling of being invisible was so profound and terrifying I could not only not breathe, I could not imagine ever breathing ever. I have seen her alot these last few weeks, there is no other way. We've done EMDR sessions that are deep and are specific to releasing trauma from your psyche, and I recommend them. I had thought I also was experiencing some waves of anxiety, but I can see now that anxiety was the wrong word, that it was just a smokescreen. What's really there is heartbreak, unbearable grief. And homesickness. That is my inheritance and my process right now.
I hope that you, dear reader, in this moment, take stock of who is left in your life that you can turn to, even if it is just one person. Who that person is may surprise you, and who they are not will also surprise you. Even if it is someone you don't really know, but talk to on PANDAS facebook page or blog, it is imperitive that you have someone somewhere to reach out to. I lost so many people along the way. Seven years is just too long to expect anyone to just hang in there. Oh well. For some, seven months is too long. In the end, our friends and families will show their true character, and what kind of people and friends they really are. So will we.
I am blessed to have people in my life with strong character. An amazing sister that stands by me so closely, and has been so there throughout this incredible journey, that no matter how crazy or bad or breathless or what a loser I feel like, I can turn to her. I am SO GRATEFUL, for you, Robin.
Diana, my very dear incredible friend, PANDAS mother to many, day in and day out, visionary and co-conspirator.
Not to mention an extraordinary group of women who happen to also have children with PANDAS; so many, that are always right in it for each other, showing the world a better way to be there, what being a friend is really about.
My mother-in-law, a beautiful woman who knows how to listen, how to express compassion, how to create context, how to offer strength. I am SO Grateful.
My friend Jody is always there when I reach out and for that I am SO Grateful.
Well, its nearly 2 weeks since I’ve experienced a real panic attack. Sometimes I do feel it begin to come on, but I can manage it down. If I can't within just a few minutes, I pick up the phone. I find that if I just connect to someone for a moment, it reexpands my world and I almost instantly feel better, like, pulling the plug on the isolation part that seems real in the moment but it is not. Its just a remnant of those long terrible nights at home with my kid freaking out and no one to call and no where to turn...the memories of those nights. I mean, face it, you can't bring your flaring PANDAS kid into the ER simply because he's hallucinating. What are they going to do anyway? Shove him full of meds? or worse? Threaten to hospitalize him? Or to take him away from you? So its not just that you feel stuck - YOU ARE ABSOLUTELY STUCK!!! Well, that's what it feels like anyway. And to some degree, yes you are stuck. We have all heard of those terrible stories of children being taken from their parents for treating PANDAS. But the chances of this are remarkably slim. At the worst, more than likely, they will just give your child a bunch of anti-anxiety medication and tell you to followup with a psychiatrist. And you all would have survived another night.
And, hopefully one day soon, this will all change! It is changing right now. More and more people and providers know about PANDAS. NIMH is doing their best to recruit some brilliant researchers and providers and get the word out there more and more, so that within just a few years hopefully all front line pediatric providers including teachers and occupational therapists, doctors, nurse practitioners, school nurses, psychiatrists, psychologists, immunologists, guidance counselors, neurologists, you name it - anyone working with children - will know to think about PANDAS first. NIMH believes that at the minimum, 1 in every 200 children has PANDAS. It will happen in our lifetime, but maybe, not for our own children.
Someone told me recently they had to call the police on their PANDAS teenager that was becoming violent and it was so upsetting, but it turned out that one of the policemen knew about PANDAS and was so kind to this child, so supportive. THIS is what we need more of, and THIS is where we are going, it just is taking time.
Right now I feel stronger than I have in a long time, because things are beginning to make sense. I look forward to sharing more with you very soon, about this next part of my journey back.
Meanwhile, Stay strong out there!
LOVE AMY
Friday, June 13, 2014
I Am Coming Out (part 1)
Out of what, you may ask?
Out of a daze. Out of my Mind with a Capital M (the bad part). Out of prison. Out of silence. Out of an incredible personal crash.
I am coming out to tell the hidden story, the invisible trauma of PANDAS. The devastation of a mother's soul, and the journey back.
I've been afraid to tell this story except to a very few brave humans who have tried to hang in there with me. Its a story I must tell, I must speak the words out loud to another, for it to make any sense, but I see that the burden on those few remaining friends and family - its too great. It hurts them. My story is simply too much to bear and more than any mere mortal should have to, except myself. And I shouldn't have to either. I am sorry for the pressure I have put on anyone to listen to me, to understand me, to throw me some humanity when I got so lost these last couple of months. So, hopefully, anyone choosing to read this blog will find themselves able to stand for me, and to hold a space of light and possibility for the untold many just like me, trying to build a bridge back into the land of the living.
If you are here, reading this, you are on a PANDAS journey of some kind. Perhaps you are in PANDAS hell and desperately looking for solutions to your child's health issue. Perhaps you are struggling to hold onto a shred of personal sanity. Perhaps you are a friend or a family member trying to help, trying to understand what the heck happened to your friend and their child, or children. Where did they go? How did they fall off the ends of the earth? Perhaps you are on your own road to recovery. Perhaps you are one of the fallen, you left your family or your spouse or your friend because you couldn't handle the darkness any more and you didn't know what to do, or if you could trust them anymore. Perhaps you know me from a facebook page or perhaps, even, I take care of your child. For any of you, I hope there is something here that helps you find your strength in whatever way you may need it right now.
FIRST, AN UPDATE:
My son's journey fills these pages. Your child's story may as well.
But the best is now here, and more of the best is certainly yet to come.
Lance continues to be well. Its over a full year now that he has had any flare symptoms! A FREAKING YEAR, do you hear that?? A couple of weeks ago, he had this incredible flu bug that was going around, it ran through him like a freight train. He had a fever of nearly 103! The first fever he has ever run since he was 10 years old. He called me at work, sobbing, he thought he was dying, seriously. He had incredible chills and you know, that feeling of fever, the skin crawling that feeling. Well, he didn't know that feeling, he hasn't had a normal fever that he can recall, so he literally believed he was dying. He couldn't believe it when I said hello, this is a normal immune reaction! A fever! Wow! Then, despite all of it, not a flare, not a tic, not a nothing. He is really better. His brain is healed. His BBB is sealed. He got a fever like a normal person. Not by accident, that's for sure. The work it took is on these pages. He still takes lots of supplements but more foundational support, antioxidants, and healthy fats, lots of healthy brain-restoring fats. Phospholipids, omega 3's. Lots of B12 and active B's. Allergy stuff, probiotics. I give him Zithromax twice a week, and mostly because I'm afraid I bring germs home to him and expose him all the time to the nasty strains of PANDAS strep that children bring into my practice.
Lance just graduated high school, with a 4.3 GPA and a full scholarship to the school and program of his dreams, USC, the Annenberg School of Communications. He is a true success story. And there are others. If you are reading this and your child is devasted with PANDAS/PANS, please please please do not give up.
People are saying to me, oh you are becoming an "empty nester", you poor person, however shall you cope?? Many parents of graduating seniors are sad their child is leaving. So I keep expecting to feel this incredible wave of sadness. But I DON'T, how could I? I just feel HAL-LE-fucking-LU-JAH!!!!! OMG, I feel tremendous gratitude and relief, that he made it at all, that we made it here!! Lance is well, he going off to school as a healthy normal 18 year old. What could possibly be sad about that?? What could be better? I feel so much pride in him. I feel total awe of what he has accomplished. I feel incredibly jealous of his youth, and of the world being so freshly at his feet. He is entering this time of life so ahead of where I was when I went to college. He is so present, so emotionally intelligent, so deep and centered within himself. I feel nothing but confidence that he will thrive. I am not the least bit worried about how school or life will treat him. He got over PANDAS, he can do anything. The world will work its magic on him, and he will work his magic back, because he has integrity and self awareness, and calls forth amazing things and that is simply who he is.
I Am Coming Out.
As for me, in the not-too-distant-future I am going to have alot of personal space and I need it, desperately. I crave it, to be honest - I can't wait. Of course I will miss Lance, my sweet baby and big boy, but I need my personal renaissance and I need it now. I remember when I used to also call forth amazing things. Hmmmmm. Every now and then I sense a little glimmer of space, a memory of a geater perspective. I am so hitting the road. I am so going to the desert. I am so moving forward, I am so ready to explode out from the little world, the teeny itsy bitsy world my personal life has become.
My personal life could fit on a pinhead. There is a narrow little pathway in and out of my house, that goes very few places. Work (which I am blessed to LOVE), then a number of grocery stores are on the path. Freaking Target. A couple of coffee places. The bank. Lance's school, oh...his old school!! Oh, the gym, and Ragle Park. But that's about it. Its a very short and narrow path. Do you know I live a mere 4 hours from Yosemite and I have never once been there? A mere 20 minutes from the Russian River and I have only been in it one time...and that was a couple of weeks ago...and we have lived here for 8 years??? Seven years of hell, and now, something changing.
So I am coming out. I am becoming clear on my personal journey and I am going to share it. PANDAS moms joke all the time about our collective PTSD. But I assure you, that PTSD is no joke. The collective human toll that PANDAS has created is so beyond what you think. Not just the children, the illness, the awfulness of that. Not just the broken marriages and families. Not just the lost friends, the lost homes, the bankruptcies, the medical disenfranchisement, the isolation, the lost years of happiness. Its the soul busting, heartbreaking, psyche destroying effects that linger, beyond what can register at any given moment while you're going through it, but what I have found coming back to haunt me at a time when my happiness should have been peaking.
This is the story I am ready to tell on these pages. Lance's story is my story, and my story is his. And possibly yours. I am sending you incredible love and hope that as I tell you what I am now learning, it will help you in some way to be a better person to yourself and to forgive yourself for anything you believe you may have ever done that is not enough to help your child. You are amazing. You are human, only human, we are human and the mystery is beyond our comprehension. it will get better.
Out of a daze. Out of my Mind with a Capital M (the bad part). Out of prison. Out of silence. Out of an incredible personal crash.
I am coming out to tell the hidden story, the invisible trauma of PANDAS. The devastation of a mother's soul, and the journey back.
I've been afraid to tell this story except to a very few brave humans who have tried to hang in there with me. Its a story I must tell, I must speak the words out loud to another, for it to make any sense, but I see that the burden on those few remaining friends and family - its too great. It hurts them. My story is simply too much to bear and more than any mere mortal should have to, except myself. And I shouldn't have to either. I am sorry for the pressure I have put on anyone to listen to me, to understand me, to throw me some humanity when I got so lost these last couple of months. So, hopefully, anyone choosing to read this blog will find themselves able to stand for me, and to hold a space of light and possibility for the untold many just like me, trying to build a bridge back into the land of the living.
If you are here, reading this, you are on a PANDAS journey of some kind. Perhaps you are in PANDAS hell and desperately looking for solutions to your child's health issue. Perhaps you are struggling to hold onto a shred of personal sanity. Perhaps you are a friend or a family member trying to help, trying to understand what the heck happened to your friend and their child, or children. Where did they go? How did they fall off the ends of the earth? Perhaps you are on your own road to recovery. Perhaps you are one of the fallen, you left your family or your spouse or your friend because you couldn't handle the darkness any more and you didn't know what to do, or if you could trust them anymore. Perhaps you know me from a facebook page or perhaps, even, I take care of your child. For any of you, I hope there is something here that helps you find your strength in whatever way you may need it right now.
FIRST, AN UPDATE:
My son's journey fills these pages. Your child's story may as well.
But the best is now here, and more of the best is certainly yet to come.
Lance continues to be well. Its over a full year now that he has had any flare symptoms! A FREAKING YEAR, do you hear that?? A couple of weeks ago, he had this incredible flu bug that was going around, it ran through him like a freight train. He had a fever of nearly 103! The first fever he has ever run since he was 10 years old. He called me at work, sobbing, he thought he was dying, seriously. He had incredible chills and you know, that feeling of fever, the skin crawling that feeling. Well, he didn't know that feeling, he hasn't had a normal fever that he can recall, so he literally believed he was dying. He couldn't believe it when I said hello, this is a normal immune reaction! A fever! Wow! Then, despite all of it, not a flare, not a tic, not a nothing. He is really better. His brain is healed. His BBB is sealed. He got a fever like a normal person. Not by accident, that's for sure. The work it took is on these pages. He still takes lots of supplements but more foundational support, antioxidants, and healthy fats, lots of healthy brain-restoring fats. Phospholipids, omega 3's. Lots of B12 and active B's. Allergy stuff, probiotics. I give him Zithromax twice a week, and mostly because I'm afraid I bring germs home to him and expose him all the time to the nasty strains of PANDAS strep that children bring into my practice.
Lance just graduated high school, with a 4.3 GPA and a full scholarship to the school and program of his dreams, USC, the Annenberg School of Communications. He is a true success story. And there are others. If you are reading this and your child is devasted with PANDAS/PANS, please please please do not give up.
People are saying to me, oh you are becoming an "empty nester", you poor person, however shall you cope?? Many parents of graduating seniors are sad their child is leaving. So I keep expecting to feel this incredible wave of sadness. But I DON'T, how could I? I just feel HAL-LE-fucking-LU-JAH!!!!! OMG, I feel tremendous gratitude and relief, that he made it at all, that we made it here!! Lance is well, he going off to school as a healthy normal 18 year old. What could possibly be sad about that?? What could be better? I feel so much pride in him. I feel total awe of what he has accomplished. I feel incredibly jealous of his youth, and of the world being so freshly at his feet. He is entering this time of life so ahead of where I was when I went to college. He is so present, so emotionally intelligent, so deep and centered within himself. I feel nothing but confidence that he will thrive. I am not the least bit worried about how school or life will treat him. He got over PANDAS, he can do anything. The world will work its magic on him, and he will work his magic back, because he has integrity and self awareness, and calls forth amazing things and that is simply who he is.
I Am Coming Out.
As for me, in the not-too-distant-future I am going to have alot of personal space and I need it, desperately. I crave it, to be honest - I can't wait. Of course I will miss Lance, my sweet baby and big boy, but I need my personal renaissance and I need it now. I remember when I used to also call forth amazing things. Hmmmmm. Every now and then I sense a little glimmer of space, a memory of a geater perspective. I am so hitting the road. I am so going to the desert. I am so moving forward, I am so ready to explode out from the little world, the teeny itsy bitsy world my personal life has become.
My personal life could fit on a pinhead. There is a narrow little pathway in and out of my house, that goes very few places. Work (which I am blessed to LOVE), then a number of grocery stores are on the path. Freaking Target. A couple of coffee places. The bank. Lance's school, oh...his old school!! Oh, the gym, and Ragle Park. But that's about it. Its a very short and narrow path. Do you know I live a mere 4 hours from Yosemite and I have never once been there? A mere 20 minutes from the Russian River and I have only been in it one time...and that was a couple of weeks ago...and we have lived here for 8 years??? Seven years of hell, and now, something changing.
So I am coming out. I am becoming clear on my personal journey and I am going to share it. PANDAS moms joke all the time about our collective PTSD. But I assure you, that PTSD is no joke. The collective human toll that PANDAS has created is so beyond what you think. Not just the children, the illness, the awfulness of that. Not just the broken marriages and families. Not just the lost friends, the lost homes, the bankruptcies, the medical disenfranchisement, the isolation, the lost years of happiness. Its the soul busting, heartbreaking, psyche destroying effects that linger, beyond what can register at any given moment while you're going through it, but what I have found coming back to haunt me at a time when my happiness should have been peaking.
This is the story I am ready to tell on these pages. Lance's story is my story, and my story is his. And possibly yours. I am sending you incredible love and hope that as I tell you what I am now learning, it will help you in some way to be a better person to yourself and to forgive yourself for anything you believe you may have ever done that is not enough to help your child. You are amazing. You are human, only human, we are human and the mystery is beyond our comprehension. it will get better.
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