Just call me Secret Agent Double 0 PANDAS Mama. I lurk in dark hallways, listening to breathing; I search for sharp objects capable of making cuts so I can confiscate them; I wake at the creak of a door.
I have laundry baskets filled with clean laundry piled up in my room because I haven't the time or energy to put all away yet. I have bills piled up in several areas in the house. Yet when I walk out the door, I am neatly dressed and I look ready to take on the world. Haha. Fooled you all.
I am the world's greatest liar. When someone asks how I am, I say, 'great'. I say, 'fine'.
I say, 'OK' when I'm in despair or physical pain. Those are the days that I wish I could keep my dark sunglasses on. Those are the days that when I'm in the car alone, the tears creep into my eyes. I guess I could answer with 'Horrendous,' but really, who wants to know the truth? There's nothing anyone (aside from a doctor) can do. The world is divided into A) Parents and Kids Who Suffer from Medical Disabilities--and this includes those referred to as Psychiatric) and their Medical Providers and... B) Everyone else. So I say, 'OK'. Never have I had someone say to me, "Cut the BS and tell me what's really going on, Lisa."
I am the world's greatest liar. I make lists of everything for which I am grateful and make myself believe in ONLY that for a few moments, blocking everything else out of my mind. I can fool myself for hours at a time. Yay me. Must be the acting I once did. From Marian the Librarian to Queen of the Night to...drum roll, please...tada!...PANDAS Mama!
I am the world's greatest liar. You see, I know that when I have wrinkled hands, my child will be grown up and better. Maybe not 100% better, but I'll settle for 80% at this point. I know he will be better because that's the irony of life. I'll give up all of mine now so that he will be ok. I won't stop until he is better, and that's no lie.
I am the world's greatest liar. I tell myself I'll retire someday and live in a warmer climate, that I'll miraculously have more money. I'll have time and energy to do the things I'm putting on hold now because of my children's diseases and my own (and the fact that 200% of our resources go to treatments): bicycling tours, nights out, vacations, excursions to other places, singing.
I am the world's greatest liar because much of the time I just want to curl up on my bed and get lost in a good book. Leave me alone, world. Let me escape. I think that's what I want. But the truth is that when I'm with a good friend, I feel like myself again. And although I seem to myself to be much more introverted now, I do love my good friends. I don't like large parties. Being with large groups of people tires me out. Maybe my personality has changed. Maybe I've lost the last few remnants of humor and creativity. Am I the same person who once sang, "Shall We Dance?" to a two year old and soared with him around the room while he laughed? I don't want to dance anymore. No, that's not true. But my hip hurts all the time.
I'm the world's greatest liar because I tell myself I probably can't truly sing well anymore anyway. I'm sure I can no longer hit the high E (not that one needs to very often.) But I haven't tried. I haven't the time or the energy. And I'm not old, although I'm too old to play Mary Poppins as I'd always dreamed of doing. I made my choice--to have a family and teach and to not attempt a career in music. I should be happy, right? I have two beautiful kids and a loving, funny, dedicated husband. Too bad they're all sick. "Two paths diverged" and all that. I certainly took the road less traveled! (Robert Frost.) The Lyme Road.
I am the world's best liar because I haven't the foggiest notion of how to cut through my brain fog and complete the novel I started years ago. Yet I still tell myself I'm a writer and that I will be published--in hard cover, no less. Never mind that words don't come as easily to me as they once did.
I am the world's greatest liar when I open a bottle of red wine and tell myself I will have one cup each night, and then forget about the last three cups until either my husband uses the rest to cook with or the wine becomes bitter. I'm truthful in that I'll never be an alcoholic. No James Bond dry martinis for me. But bring me chocolate and watch it disappear. Except now. I'm dairy-free. Bummer for me, right?
I am the world's greatest liar when I think that we will have 7 years of bad luck with the Lyme and PANDAS before having 7 years of good again. It's been six years now, so that means just one more bad year, right? Might there be something biblical about this suffering? And althought I don't believe in G-d (much,) I pray when times are very bad. I certainly don't believe any G-d would cause this, but I have wondered if maybe I was Christopher Columbus or a Nazi henchman in a past life; what did I do to deserve this? What did my child do to deserve this?
"Mommy do you vow I'll get better?" he asks me sometimes. He calls me "Mommy" when he's not feeling well. I wish he would call me "Mommy" instead of "Mom" when he's feeling fine/confident/healthy.
"I vow that you'll be better," I say, looking him straight in the eye. I might be the world's greatest liar but I really don't know all the body language or how to cover up a lie; I have no poker face. But this is not a lie; I will do everything in my power to make sure my baby is better.
He says, "If I'm not better, you'll give me one million dollars!"
"Hey," I tell him. "I'm spending one million dollars getting you better!"
OK. That is a lie. Although, considering that my husband now works sporadically so that someone is here for our son, and considering how much we have spent and gotten into debt over...you do the counting. I'll stick my head in the sand until we can breathe and maybe then I'll assess the financial damage.
I tell myself that all will work out in the end (or it's not the end.) If I have to lie to my child to keep him alive in the meantime, I will believe that lie first. And then work my butt off to make it become a truth.
I am the world's best liar because I constantly tell myself that everything I have is enough, when it isn't! I abhor having a house that is slowly falling apart. I loathe having to cancel plans at the last moment because a child is flaring. I despise never having a date with my husband. I hate hate hate not being able to sing/dance/travel like I used to, and to do so with my kids. I want to show them the world, not the inside of a malfunctioning brain!
Yes, I can feel gratitude for the fact that we have a house and that we have kind neighbors, that we can stay home and rent a movie or escape into a book. I am grateful that I have a secure job that I love, a career that offers me a happy place and a chance to make a difference in this world. I am fortunate in that the children I teach have no conceivable idea that my family is so ill. I go to school and I smile. No one ever knows what happened last night. I am a double agent; my world at home is a secret.
I am the world's best liar when I tell my child, "This pill will work," hoping for the placebo effect, if not the real effect, to make a difference. But then the Herxheimer's reaction--all that bacteria die-off which exacerbates symptoms--kind of complicates that and shows me up.
I am the world's greatest liar because I tell myself that there must be some meaning to all this suffering. I tell myself that I'm meant to do something with this--not dwell alone in my misery, but to teach others, help others past the hurdles we've been through, guide others through the shortcuts (have you tested yet via Igenex?!) and perhaps change someone else's life as I haven't completely done with our own. Yet.
I am the world's best liar, or perhaps the world's greatest dreamer, when I believe that in twenty, thirty, forty years time, there will be cures for Lyme, Bartonella, Babesia, and for PANDAS/PANS, so that someday, our children and parents no longer need to suffer like this. I believe that change is inevitable, that our parent movement will propel this forward, that the world will begin to listen.
It's tiring to live the double-life. Secret Agent Double O PANDAS Mama needs a lot of rest and destressing time to be able to cope with the darkest travesties of the job. The training has been intense. But we secret agents will prevail, and someday, will retire to a happy, sunny beach. Maybe that's a lie also.