"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
No comments:
Post a Comment