I know, what in the heck is there to love about a disease that turns your world upside down in all the wrong ways? Still, I believe there is a natural balance to the Universe, good-bad, loud-quiet, hungry-full…PANS/PANDAS – STRENGTH. Here’s my thankful list of 10:
1. FEWER FEARS: I’m not talking about snakes and spiders, but since P/P entered my world, I’ve had to step out of my comfort zone every day. I have increased confidence, more courage, and grittier grit. Situations that would normally scare me, I now face head on.
2. PATIENCE: I don’t think my old self would recognize my new self today. Putting me in a room with a kid screaming all day would have drove my old self batty. I’ve been doing that now for over two years. Patience is a mental workout, and I can do squats all day long…mentally that is.
3. I CAN TALK LIKE A DOCTOR: streptococcal, Sydenham chorea, intravenous immunoglobulin, prednisolone, haloperidol, risperidone, plasmapheresis, basal ganglia, caudate, putamen, aseptic meningitis, dysgraphia, Lysoganglioside, tubulin, antibodies and antigens… so maybe I can’t spell them all, but I can definitely keep up in conversation.
4. LESS COMPLAINING: this one’s weird. I have so much more to complain about now, but I don’t. I don’t have time. I have to get sh*t done.
5. GETTING SH*T DONE: from writing appeal letters to insurance to cleaning flour out of every kitchen drawer EVERY morning – I’m a busy bee and so very productive. Remember the days of being bored? HA!
6. LIVING LIFE TO THE FULLEST: it’s not about traveling the world, trying new and exciting things (though that helps), or X-ing off that bucket list. It’s about real happiness, true sadness, lots of madness, and chasm-deep inspiration. When I laugh now, it’s more real than I can ever remember. When I’m sad, it’s not because my short story was rejected, but because my son was denied health care, again. My emotions are deep, and I am more alive than ever.
7. HOPE: this one is important. Too many days, I’ve not had much or any hope at all. Abandoned by doctors, missing friends and family, mounting costs of health care, losing sleep/health/sanity, watching my child literally wither before me as he starves himeslf…still, somehow, hope never completely disappears. I have children who need it and a husband who depends on it. I cannot abandon hope no matter what. If I have to, I will unearth it from a cave in Timbuktu!
8. NETWORKING: I’m a writer and am in touch with people across the world, but I never imagined connecting with families for a cause as important as a severe brain infection. We are strangers, and yet, immediately a team, fighting for a common cause (to save our child(ren)/family), digging each other up from the deep, knowing what no one else could possibly know. P/P parents get it. They KNOW.
9. MATERIALISTIC, NOT: In the pitches of OCD rages, I’ve lost many materialistic items, from favorite jewelry to televisions, furniture, and treasured possessions. However, I can live without these things. I am living without them. I don’t really need them. Now, I know what I need to live, and not even a bed makes the list anymore. Hardship isn’t for the weak, but what it opens our eyes to, is priceless.
10. GRATEFULNESS: Even in the darkest hours of P/P, there is much to be grateful for. Resorting to thankfulness for a roof over your head can be even more depressing and sometimes shock one into how much they’ve lost, but that’s just it- a home, no matter how damaged, a family to turn to, no matter how much they don’t understand, or food to eat, no matter how cold it is, that is much and sometimes, all that matters.
So there’s my list of 10 things I like about PANS/PANDAS. I didn’t put those cute little black and white bears on the list because honestly, I really don’t like pandas anymore.