June 2012 Archives - Momastery

So, it’s 5am and I’m up after a looooong Lymie night. Leg pains and stomach pains and then tons of Alleve and then wicked heartburn from too much Alleve. I’m tired and confused and more than a little scared and lost.

But look, I’m here – I’m writing to you. I’m a little bleary eyed, but I’m here. Because we have to keep showing up for ourselves in the thick of things just to remind ourselves that we believe. We don’t have to worry about being any good when we’re at our worst, we just have to keep trying. Because when people only show up at their best, it causes confusion and leads folks to believe that others are always strong, and sailing through life. That’s just not true. We gotta show ourselves when we’re all beat up and scarred, too. That’s what people need to see, much more than our shiny selves.

Can you tell I watched Soul Surfer for the fourteenth time last night? NEVER GETS OLD. Never, ever. It’s our family’s favorite. If you need a little inspiration, please watch it. At the risk of being grandiose, I know pronounce myself SOUL WRITER, since my body has decided to stop working. You may call me SW for short. Also, you will be happy to know that I have chosen a name for my parasite. Thank you for all of your amazing suggestions. I have settled upon Alejandro. I have no explanation for that decision. It’s just Alejandro. Thank you, Rebekah.

I need to give you some Monkee updates. First of all, this:

Claudia has her van. And I will cry as I write this but the first thing she did was get inside and have her friend and caregiver drive her to the airport to watch the planes land and take off. Why is that so brutiful? It just is.

Amy and Claudia logged 200 miles on the van the first weekend. She attended her son’s first 4-H meeting. She wasn’t able to be involved before –she had no way to make it there. And this might be the best news. She made it to her first doctor’s appointment in a long while and here is what she had to say about that.

“Thanks, Amanda. We put over 200 miles on the van since Sunday…. trip to Indy for the air show and again yesterday to go to the neurologist. Thank you all…bless you all… for giving me a life again! My neurologist says that I’m doing really well for someone with ALS and that the type of ALS I have (upper motor neuron dominant) is typically much slower to progress. All that means is that I will have more time to enjoy and be thankful for this great blessing.”

You did that. 5, 10, 15 dollars at a time- you changed Claudia’s life. Just by showing up! And by BELIEVING that your little offerings might make a difference. Loaves and fishes people, I’m telling you. Mindy update coming soon. It’s just as good.

Second update: I finished Carry On, Warrior.

You guys. I will cry again now. It was so hard. At first, I hated writing it. Because I was so used to writing to YOU that writing for the book felt different and strange. Like writing to no one. And I had to write about BIG BIG things in my life that I’d purposely never written about on the blog, because I didn’t understand them yet. BUT, I forgot that we don’t wait till we understand to write, we write so we can understand. I also remembered that I could just PRETEND to be writing directly to you- since I really was, anyway. And we finished it. We had twelve FINAL DRAFTS. The twelfth was the charm.

Now, when you are “done” with your book, what that really means in the publishing world is that you have one million more things to do and change and fix and create before you are really done. At which time you will receive your newest list of things to do to really be done. Like life. But I’m done with Step One and we have to celebrate each Completed Step in life since we can’t ever REALLY be totally done till we’re dead. And we really shouldn’t wait to celebrate until then. SO — DONE, STEP ONE! Manuscript complete! Every essay is there, as perfectly imperfect as each was meant to be. I wrote about all the things I thought I couldn’t write about. I just kept showing up and it GOT ITSELF DONE. I am starting to seriously believe that this is how it works. We don’t really have to DO anything. We just have to keep showing up and Letting Things Get Done. Except on days when we can’t show up because TOO HARD and that is just fine. Things will wait to get done. I had plenty of SORRY, TOO HARD days in there.

I really, really believe that you are going to love our book. It IS our book. I put every drop of myself in there and a whole lot of what I hope to one day be. I put all our love in it. I wrote the book I want my adult children to read and believe. I wrote the book I want YOUR children to read one day because I think it will help them breathe easier and LAUGH and open their eyes wider and be kinder to their beautiful selves and beautiful others. So that’s that. That’s something.

A few orders of business:

I’m getting more and more requests for Monkee See Monkee Do help in my inbox. We want to read every single one of your letters, but can’t unless you send your requests for help to: help@monkeeseemonkeedo.org. If you’d like to OFFER help, please send your message to: business@monkeeseemonkeedo.org. We have a team of Monkees who monitor that account. Otherwise it’s just me reading and reading and I tend to end up in the fetal position more often than is really acceptable as a grown woman. So if you’ve sent any requests to me during the past few months- please re-send to the above addresses.

What else? We don’t know what we’re going to do about moving yet. We’re thinking about taking a year Melton sabbatical in Florida. That idea still makes me want to tear out my heart and shove it down the garbage disposal because I know how many little things I’ll miss during Sister’s baby’s first year. But during the last 24 hours I have thought that there might be some blessings to that. I mean, I know you would NEVER believe this, but I tend to meddle. And maybe a first year without sister would help John and Sister rely upon each other more to keep this baby alive. That’s all we can do the first year, right? I don’t know. I just don’t know. But I’m starting to relax a little about the whole decision, probably due to your prayers.

Sometimes I get so scared about making THE WRONG LIFE DECISION. Like I’m on that game show- what was it? Where you can risk everything you’ve already won for WHAT’S BEHIND DOOR NUMBER TWO. And if you do risk it all, there might be a CAR behind door number Two. WOOOT! OR there might be nothing but a big sign that says LOSER! YOU HAVE CHOSEN UNWISELY! YOU HAVE LOST IT ALL! And you must hang your head and leave with nothing and spend the rest of your life wishing you had chosen door number ONE! ONE, dangit!!!! LACES OUT!

That’s how I usually feel about big decisions. Like there is a bit RIGHT answer and a big WRONG answer.

But that’s not right. That’s not how the God I know would work. He would be waiting behind both doors. He will be ready to walk beside me on whatever road I choose.

And then if I decide to change roads, He’d change with me.

Chase and I talked a lot about that idea last night. He agreed it makes sense, so that sort of solidified it for me, since Chase is the wisest in our family.

Anyway-I just wanted to know that Lyme and Alejandro are not going to take me down. When I woke up this morning- there were twenty encouraging messages in my inbox (THANK YOU)! One from a fellow Lymie included this scripture.

“I choose to believe the present sufferings are not worth comparing to the glory to be revealed in us.” Romans 8

You guys, I think I really believe that. Something down deep tells me that is TRUE. That this suffering is leading somewhere. Maybe even today- maybe even right NOW. Maybe someone is reading this and remembering that she doesn’t have to be perfect or even HEALTHY to live a beautiful life. That if she just continues to believe in herself, in whatever state she finds herself this morning – God will use her belief to reveal His Glory.

And for all my friends who don’t appreciate the Goddy talk. Let’s put it this way:

Keep showing up for yourself, in whatever little teeny ways you can – and somehow- it will be AMAZING.

I usually try very hard never to boss you around, but here comes some bossing:

Do NOT give up on yourself. If you don’t- I won’t. Deal?

I LOVE YOU. Thank you for coming here, to this place that brings me so much hope and joy.

Love G

Once when I was twelve, I was dancing to Papa Don’t Preach in my bedroom, whipping my head back and forth (before that was cool) and singing with anguished facial expressions into my full length mirror.

Mid- song Bubba stormed into my room, ejected the CD, and smashed it to smithereens on my bedroom floor.

A little dramatic. But sure kept me from becoming a young, unwed, pregnant, belligerent, bleach blonde daughter.

Ahem.

Love you, Bubba.

So here’s the 411.*

Once again – I’m in trouble, deep.

I forgot again. I’ve been waiting to write to you. Waiting until I was able to put a lovely spin on something really sucky. Waiting till I felt happy again. Till I had it all figured out. But that’s not how we roll here, is it? That is actually quite the opposite of how we roll here.

My doctor just had one million (more) blood tests done because I’ve been sick, sick, sick. The results are that a) my neurological Lyme is worse than ever. Yaaay!! All the medical treatments for the past three years have not only been brutal but also completely ineffective! JOY! b) The Lyme isn’t even CLOSE to my biggest problem. My biggest problem is that I also have a PARASITE that was likely transmitted by the same damn tick that gave me the Lyme. This parasite has been newly identified and is compared to Malaria but wait- it gets better- my sweet parasite is one gazillion times worse than Malaria! My parasite lifts up his little parasitic arms and JEERS at Malaria! He eats Malaria for breakfast! Because while Malaria can be treated, my parasite is incurable. No one has EVER been cured of it. Ever, ever, ever!

Everyone please hold up your WTF? billboards now. Thank you very much.

Lyme is sometimes called the “But you look so good” disease. Because when we have good days- we are so delighted to be vertical that we run about and beam. The reason you don’t see us looking bad is that on our bad days, we don’t get out of bed. We cry. We scream because our legs hurt so badly. We dream of amputation. I did yesterday. We can’t take care of our children. Our families are afraid and burdened.

And there are decisions to be made. I live in Virginia, and Lyme is epidemic in my county. People don’t like to talk about it, but it’s true. My neighbors and friends are dropping like bowling pins, ten at a time. The kids, too. Truly.

It’s not good to run from things. Usually. Sometimes. Sometimes it’s not good. But it’s hard for me to live here. It’s sort of like someone with PTSD from a war trying to live in a laser tag arena. Or a person who narrowly escaped a huge earthquake settling down in San Francisco. It’s a tad nerve wracking. I don’t want my kids to get what I have. because I know how it feels. And also, I don’t feel good here. The weather changes every day and I’m freezing cold when it’s 75 degrees. I can’t even go to church anymore because it’s too cold at church. I shake like I’m being electrocuted and then crash for the rest of the day.

This is why we’ve been traveling to Florida often. And I kind of want to just pick up and move there. Because I feel better there. It’s so warm and so close to the ocean. It seems like it’d be easier to feel better near the ocean doesn’t it? And because the silver lining of having various incurable diseases is that you are permitted to do dramatic things because you are living a dramatic life. Right?

I lay in bed and think – I will move my family. I will live on the beach. I will sit on my deck and write while I look at the ocean. I will have barely any clothes. Just tank tops and flow-y skirts. I will practice yoga and squeeze fresh juice every morning. I will figure out how to heal myself since I’m pretty sure I’m the only girl for the job. I’ve tried everybody else.

BUT.

Sister. She’s having my (her) baby. In three weeks. How can I leave? I can’t leave. I will die without her. I will die if I stay here, it feels some days. And our friends are here. And the kids’ friends are here. And also, we don’t know anyone in Florida. So scary.

What to do? Is it scarier there or here?

Should I wait till the Universe reveals more? If you don’t know what to do, do nothing -right? But then again, insanity is doing the same things over and over again and expecting different results.

Good Lord. I am a problem wrapped in a dilemma smothered with confusion and garnished with pain and paranoia.

I love you. The sun will come out tomorrow.

Moral of this Momastery story: Life is hard. Even when it looks like it’s not.

Love, G

*Bubba also smashed my Mary J. Blige What’s the 411? cd. Swearsies. Ask him.