Sunday, March 27, 2016

Life Beyond PANDAS? Yes! and No!

I've taken a looooong time to think about this, this question as to whether once someone's life is literally decimated by having a child with PANDAS, if it's ever really recoverable. Not just manageable again, or, less stressful, or "better", whatever that means. Not just getting over the bankruptcy, or the divorce, or the total loss of human comforts that accompany the life of PANDAS. So that you're moving on, or moving forward, in other realms.

I mean, can your soul be restored to a level of trust and love and happiness and faith, once you've lived in PANDAS hell?

As luck would have it, my child with PANDAS continues to thrive. Although, he had a blip, some profound immune issues that showed up this past year, related to the really bad toxic mold in the house he's living in at school. It took time to figure this out, this crash. It almost looked like PANDAS but it wasn't. The anxiety was not PANDAS anxiety, it was real anxiety about the health decline and fear that PANDAS was around the corner. We were both anxious. PANDAS didn't come. But we thought it would, so both of us went through some horrific fearful skin crawling sleepless time back in PANDAS hell before we figured out what was really going on and were able to fix it.

If there is even a slight chance, that there is mold (from waterdamaged building material, the kind that is toxic) I have learned in the last couple of years that it will be impossible to get your child with PANDAS or Lyme related illness sustainably better until this goes away for good, meaning either remediate and / or move, plus get your child treated or at least tested! for mold related illness.

So all that said, this is what I see so far.

NO. There is no life beyond PANDAS - yet. Its been over 3 years now since Lance's last IVIg, and he just got better and better and better and better, until this mold thing hit. Then, within moments, the two of us were in PANDAS hell. It was right there, in me, all I had to do was drop right in. Actually, it reached up and grabbed me and pulled me in. Maybe this will change someday, maybe it won't. I have no idea when i'm going to stop trying to fix his health.

But, on the other hand, I have found so much happiness beyond the life I lived inside of PANDAS. so the other answer is YES. There is life beyond it.

I have found myself capable at times of actually forgetting the day to day misery, and to open my heart again, to expand my world to include more good things again, instead of the way PANDAS becomes the entire world, all the time, with everything else dead and gone.

How much percent of my life is beyond PANDAS now? Well that's a hard question. The reason is, that my work is still all about it. Its not like I'm going forward saying ok, I will never think about or talk about PANDAS again. Every day, I'm still all about it. So that has to count.

The real question is, how much of my life is beyond the personal trauma of PANDAS and includes things like being able to talk to people about things other than PANDAS? In this way, I've made tremendous progress. My life feels like its getting bigger and finding happy times and moments of true contentedness. Peace even! Love again! Opening my heart to a non-PANDAS man, a wonderful big hearted loving man and letting my pain and fear and damage be seen. So hard, and easy, both.

Falling back into being human is a little bit like riding a bicycle. Its been there all along, but in the background. or seriously buried and unreachable, worse than unreachable, Non-distinguishable. Nonperceptable. But falling back into the good place is kind of like, natural. Precious and tender. And familiar. Like, remembering how much I love the desert! Or smelling orange blossoms. or riding my bike. or kissing. The body memory of the good is there, along side the bad. I move a bunch of steps forward and then I find myself retreating for awhile, back to safety. There is comfort in the known, even if its bad, its familiar. I still deny myself things, because I got so good at doing that for all those years I don't realize I'm doing it until it suddenly occurs to me that the solution to a problem that's been really bugging me is so obvious and right there but I got so used to thinking small about anything I needed or wanted, I forgot I can actually look for solutions now. Sometimes I have to literally ask someone if something is ok, like, is it ok if I get curtains for my bedroom because the light outside my window is so bright at night its hard to sleep sometimes even with the blinds, plus it would be so much cozier. What a crazy question is that?? Is it ok if I join a gym because I just can't get outside enough to get the kind of exercise I need? Who asks these things? Plus, i still haven't done them, either of these things, even though I've gotten permission from several people now. Because I feel guilty. Or fearful. I'm more used to not having them, than having them. I know that you know what I mean. If every single thing you ever want or need is not as important as the time or effort or money you need for something for your PANDAS child, then its like, a no-brainer, you just stop caring about what you need. its the only solution to that problem. So sometimes I still have to call and ask my sister, is it ok if I just feel like being outside walking today? Is it ok if I am content just hanging out on a Sunday morning puttering around my cute apartment listening to Pandora? or going out for a nice dinner or to the beach? or buy some clothing item I need? Am I doing anyone a disservice if I find myself able to be happy in this moment? I still ask, is this ok? Every time I take a step forward, I can tell because the tears come. Like, my heart gets wrenched open and the pain has to fall out of the way before that part be filled with goodness again. But it happens. Sometimes, most of the time, the tears come wordlessly, just a wave of grief for the whole thing. Sometimes it has a name. Mostly, its personal and happens in a moment and passes. Sometimes, I share it, if it happens when I'm with someone. Those moments are meant to be expressed and witnessed. Our grief has been invisible too long.

Well, I can see that maybe I can continue to have a life that includes what I went through with PANDAS, without the trauma being my compass, including love, and being in service to families struggling with their children, in a way that I can be happy and whole. In some ways, maybe a zillion ways, I will always be defined by PANDAS, who I am and am not because of it, who I am becoming because of it, what I am learning because of it and how much healing can happen in spite of it.

I pray that your journey is easier, that you find all company the you need during your brief stints in PANDAS hell, that they are brief! and that everything you need on the road to recovery is right there for you.

On this EAster day, may we all find our souls resurrected in love and faith.

And always find the strength to never ever give up on our children.

with love,

Amy

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