Sunday’s Song

The last few days have been the most welcomed and also confusing. Toes in sand, drink in hand. Extending framily, … indefinitely. No, that’s not it.  As I sit here in the airport, headed back “home”, with tears brimming my eyes and my words failing me, I can’t place my finger on the how/why I had been wounded.

Then this played through my headphones:

“I thought that I didn’t care, I thought I was love impaired, but baby, I don’t know what Im gon’ do….. I’m crying Cuz I Love You”

Well, damn. There it is.

Sunday’s Song

I watch your lips moving
I see the words taking shape
But love’s like a language
I cannot translate
I can’t afford to be careless
And let you in
I turn my head for one minute
And lose everything

Wish I had someone whom I could lean
Cause everybody’s always counting on me
With my hands held real tight
Always ready to fight
For the few pieces of joy I have now
You have turned on a light
And I’ve lost my sight
But my heart still remembers the sound
Of a dream of a love one day found
Of a dream of a love one day found
So don’t let me down

Your past it may be rocky
But your present is clear
My present situation
Is the sum of all my fears
I take responsibility for the few things I done right
But I got so much on my plate
I’m scared to take another bite
Wish I had someone on whom I could lean
Still I don’t want no one’s charity

With my hands held real tight
Always ready to fight
For the few pieces of joy I have now
You have turned on a light
And I’ve lost my sight
But my heart still remembers the sound
Of a dream of a love one day found

Heartbreak and bullets can try
To steal any good from my life
Fathers and lovers have lied
Rivers have flowed from my eyes
Never seen love face to face
Just seen it walking away
Why would you think I would recognize
Something that’s never been mine

You have turned on a light
And I’ve lost my sight
But my heart still remembers the sound
Of a dream of a love one day found
You’re the dream of a love one day found
And the freedom from what kept me bound
And a promise of staying around
My eyes may not work for me now
But my heart sure remembers the sound
So if you saying it
Please say it loud
And don’t let me down

please?

Sunday’s Song

I spent last week inpatient. After changes to medications and a respite of sorts, I came home Monday. Around 5pm, my neurologist sent me a message via their medical messaging system to tell me that we were out of options and would need to seek outside opinions from Case Western University Hospital and Cleveland Clinic; and also, we’ve already done this. This means we have finally arrived at immunosuppressive therapy to turn off my immune system and turn it back on; you know, like a computer. I start with steroids today and will start chemotherapy in the coming weeks which will last 4-6 weeks and then again at 6 months. (AND possibly also brain surgery to place a shunt.) Finally, I resigned from work on Friday.

I have so many things running through my mind. They’re screaming as they lap one another. On the surface, I feel … peace? (I think that’s what they call it. *shrugs*)

THOUGHTS:

  • it’s going to be weird to have so much time on my hands but really not being able to do much ‘going out’ going forward.
  • It is strange to refer to someone as your “boyfriend” at the age of 39. He is neither a boy, nor JUST as friend. I like main man. EX: Maui is my main man.
  • The new meds are making me hella sleepy, but the steroids will make me on edge. New meds proving to be very necessary: “God’s will be done.” Because *motions around to everything going on* FUCK. (Sometimes it’s the only word to capture the true fucked-upedness of the moment.)
  • My brain needs to be numbed down to avoid burning out, but that’s all the drugs do.

The rest of it is really hard work, mindfulness, that only I can, have and will improve upon doing for myself.

                    (((sigh)))

Also, I have never felt better mentally and/or more sure of myself. I don’t know what’s going on now, or what will happen in the future, but there’s something delicious about ambiguity and I know whatever it is I can handle it. I’ve got nearly 20 years worth of blogging here to prove it, no matter what the ‘shitty-committee‘ that meets in my head likes to say. There is batshit crazy POWER in being fearless. This is next level. The proof is in the pudding, folks. I have a 100% survival rate this far after all. *smiling broadly*

HOW ITS GONNA BE:

  • I’m not going to let fear drag me anywhere, nor reel me in. It may have a moment and I hope that is all.
  • Being inpatient taught me that I’m not alone and couldn’t be even if I tried.
  • People are hurting, ya;ll. People need connection with other people. Bottom line.
  • I may spend the rest of my life not being able to work for a paycheck, but I promise I am going to be doing hard work.
  • I will be spending the rest of my life making sure I take time to sit with the broken because that’s my character and, my biggest hope, leave a legacy of love for my children. There’s worth in that. As long as I know that to be true, nothing else matters.

Diva, while you may one day fear becoming just like your mother, just remember this, Im a strong, mutha, baby girl. 

Sunday’s Song

This week while inpatient, I learned that Im still perfect even when Im fucked up because Im being myself. I was able to reach out and make deep connections despite intense personal suffering and I was told directly of it’s impact by a handful of people. You may think, ‘only a handful?’ and while you may be right, to meet people where they are and love them exactly as they are, unconditionally, I find is hard work that not all humans are capable. It seems to be my superpower.