Thank you for the Days

It's true, the little things can bring happiness.
Someone suggested we start a band. Happy Happy . Happy!
Neither parent is currently in the ER. Happy
I picked fragrant purple flowers, and covertly placed them bedside my Mother, and she thanked me... Happy
I ate cheese. Happy
My friends have partners in love. Happy
I love colorful cloth. Happy

I'm going to bed at midnight...happy.

Dogwood Bloom

There's another Lupissima (female with lupus) that lives on my street. 
I think she's at most 20 years old. She's been very ill, and housebound for months, but today I saw her walking outside. She had her Mother, and another woman helping to guide her,  she was moving painfully, slowly, but she was out there!  She was doing it!  

In my heart, I want to zoom to her, assure her, help her, goodness me - walk beside her, but I hang back. Always. 

I watched from the kitchen window.

I don't recognize this part of me.  It's simply not how I understand myself to be.  

I pretty much rush all the biddies in my hood.  I ask them how I can help, I bring over food when there's much made, I run errands, I telephone, negotiate, yell if I think they're in trouble, for f**€k's sake I bake for these broads!  

What's my lame, I mean über lame, problem in communicating with the one person I know I can relate to, and possibly really usefully, and fully comprehendingly help to advocate?

I've been all a flutter this afternoon, my hands painful and quite itchy, my feet a tingle. I've been desperately wanting to feel the sun on my skin, wanting to be out in the world, but Today is not my day...

I found myself fully immersed in social network, wanting to connect, wanting to be present.

I've had lupus for many years, undiagnosed for no one really knows how long, maybe since early childhood...but I also had my twenties, and I lived them big and incredibly fully.  I ran, I danced, I moved through the world, I dated lunatic French aristocracy and even drummers...I was wildly silly, and very alive.  When I felt sick I would rest, but did not allow myself to think that I was living with an illness from which I might not recover.  No matter how poorly I felt, I could always convince myself that I would, very naturally, and completely recover.

Even now at age 40 I still do not accept that I am in any way dis-something. 

Disabled? Disheartened?  Disadvantaged?

In thinking why, why I have never once gone to her house, why I don't call on her, let her know she's not alone.

I've realized that I'm scared of scaring her.  

Petrified.

I don't want her to think that my  current life is her natural future.

I want more for both of us.

I'm beginning to know how to be a mid-life woman with the understanding of this disease, and how it can limit me, but I don't know how to comfort, or encourage this young woman, so dazzlingly young, I don't know how to look her in the eye and tell her it's going to be ok.

It cuts me to the quick.

The Sally Forth

Don't mention my name, I don't want anyone to know about me, he said.
Och, Pet, don't I know.
That's the crux of the cuckoo, the very heart.
I need not say my Father's name.  He's a private person, like myself...though we've both spent much of our lives on stage, well lit and highly amplified.  

An hour later...
So, you're writing in there?  You're not talking about me, you're not writing about me?
No, Da.  I've got enough to say about myself.  In fact, the first line of the first blog is just that..."don't mention my name".
Was that me who is saying that, he asks?  Yes, Da.  That's what you said - strict instructions!
Oh.
And that's the first line, He wants to know?
Yes.
A small smile, then some humming.

Give us this day our existential crisis, settled squared well away.
Dinner - that Beast
I've been ill, I have not been cooking, chaos has reigned.  My dear friend has rescued us, she has brought copious amounts of food, there's nothing to dread, today.
My hands are not yet recovered, pain, ever reddening. 
I return to our music room, but only to lightly swish my fingers over this sleek screen.  
I'm surrounded by keyboards. Surrounded, I tell ya!  The borrowed electric guitar is squatting in the corner. ( an act of aggression ? No. No, Pet.)  I planted her there recently, then out, OUT they came!  Accordions....everywhere, ready to rumble.
Just after this new arrival of the stringed creature to this room sanctioned for keyboards, for reeds, just immediately after, I was bitten by a spider, and my hands became my torture.
My everyday endless swiping away of blood, grime, dust, the de-germing of floors, laundering, my everyday endless endless pursuit of clearing a path through the germy jungle that is Casa de Cuckoo, has been made near impossible by this  new affliction fanged into me.

Lesson learned.  I'll no longer coddle the visiting spider, and I'll rescue the stringed beast and bring her back to the fold, my room.
I'll not name names, and I'll invest in my own, wee amp.