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. 

Sunday’s Song

I have a wild heart. It loves fiercely. My heart is always in search for the wounded. I don’t come to prey upon them. I understand their pain. I take the wounded in and give them safe space. When the wounded are met where they are and loved unconditionally  exactly as they are, they become more resilient and the truest version of themselves.

For reasons that have eluded me until today, they don’t stay. Once my wounded are bound, they gain confidence and before I know it, they’re on their way. That’s the double-edged sword for people who love unconditionally.  Unconditional lovers feel great contentment when someone they were able to guide, or restore in some way, contributes to humanity. After all, what greater cause is there? We stay rooting on the sidelines and also; we often go home alone, never having had an expectation of anything resembling appreciation. There is no debt for services rendered. Then, without further obligation the transaction is closed.

Today it occurred to me that not everyone appreciates the power of love. I want to believe the misunderstanding and fear has to do with their past alleged experiences with “love” and not some deeply imbedded fuckedupedness on my part. I think back on my own experiences and understand, but I will not digress. I will not hide. I will not refuse to love when someone loves me because someone else did it different, or not at all, in the past. I will not cease to plan and do, because of prior trials erred. I won’t cower. I won’t run when it looks like love. I won’t bow. I’ll be here in the arena with my hands in the air ready to fight for love. I’d like a partner in love and life, fighting in the name of love WITH ME, but I don’t need anyone to fight battles FOR ME. If a faithful warrior does not manifest, I know I’m scrappy enough to stand on my own.

Still, just once, I’d like to see it. I’d like to see a wounded warrior rise up and take my side.

I’d like to have an endless supply of unconditional love to spread healing to as many wounded as humanly possibly. Everybody hurts, however, suffering is a choice. There is no need for humanity to suffer in dire straits for love. There is enough to go around. I have to believe that, for us anyway…if you’d let us love.

aloha

another potential suitor bites the dust.  *raises glass*

fuck, i don’t know what it was.  as you like to say, “it was something.” i doubt you will ever give it more credit than that. what was it? what were you to me? what was I to you?

I was your greatest ally during a time of great trepidation in your life. or I tried to be. you couldn’t even ask me about my fucking day. I have no desire to hold together the shards of your confidence; and also I could have. you know you are better than this. I’m not entirely sure which you fear more.

Please? understand this. I can’t martyr myself to the potential disease ever again.