Sunday’s Song

“Call it a clan, call it a network, call it a tribe, call it family. Whatever you call it, whoever you are, you need one.” ~ Jane Howard

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. 

And I quote …

There is no fight left in her. And that’s the best thing that ever happened for her.

For far too long the futile battle of light & dark has left her exhausted. She’s accepting both light & dark as the inherent gifts of the universe. She’s not in a duelling match with them. The light no longer wishes to ‘reform’ her dark, and her dark no longer wants to ‘control’ the light. Suddenly, she’s not playing the polarity game.

She’s not fooled into buying the teaching that there’s something wrong with her that needs fixing, and she’s got work to do before she’s finally ‘good’. Her divinity is in fully embracing her humanity. All of it. So where’s the imperfection?

The myth that one day light will vanquish the dark and there will be peace would have kept her exhausted & imprisoned. She’s already at peace right now! Even the light and dark within her are sitting at peace with each other. Game over.

What she’s experiencing in the ceasing of war is an unbelievable tranquillity & peace. Thank goddess she believed in her own wisdom.

Author: Joyous Woman With Sukhvinder Sircar

A higher calling

I’m not trying to catch feelings, I’m trying to build an empire.

That’s real talk.

I’m done with this low level, surface bullshit.

Yes, I’ve been broken, but it’s only taught me my capacity to love and I’ve grown and continue growing.

I’m learning to trust myself and others in ways that have been uncomfortable, but SO worth daring greatly.

I’m ready.

Follow – Up

My spinal tap showed increased cerebral spinal pressure, which we already knew from the vision loss. This accounts for the inter cranial hypertension diagnosis. The MRI was normal. My blood pressure is finally back to normal. This is attributed to a bad combination of dehydration from being sick all the time and lithium. Turns out lithium had been making me sick for quite some time. My doctor says we will need to keep monitoring symptoms and give it more time before we would move on to brain surgery and it shouldn’t surprise anyone that I don’t want my brain cut open.

This means giving it more time. My patience is wearing thin, but I am encouraged by other areas of my life coming together. Finances are just about straight. I’ve had more friends stop by in the past month than all of last year. Kids are back on track. My niece and nephews brighten everyday. There’s just something about raising kids that fulfills my soul. I have also had the sweet relief of knowing my kids would be watched out for and loved, genuinely, for the rest of their lives. I cannot tell you how heavily that has weighed on my heart and the enormous weight that has lifted from my shoulders. That, in and of itself, has been a major contribution to my stress relief. I am so incredibly grateful to my best friend, Tess, for being an unbelievable source of strength and comfort to me.

THIS is where I need to keep my focus.