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.
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