“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*)
- 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.
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.
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.
Just hold on. We’ll see you tomorrow.
This past week proved challenging and there were both sweet and sour unexpectedly and simultaneously.
Valentine’s Day was low-key due to my own limitations, but in the end will be more dear to my heart than most any other before. I feared for my life and wanted to surrender to death at all once, due to uncontrolled pain which anguished me both physically and mentally. I hoped for my future relationships while sulking in the loss of others. There was both confusion and clarity. There were moments of bravely being vulnerable, bearing my soul and asking for help, while wanting to run away and hide from everything and everyone.
I dared greatly, but not yet all the way. Not because I can’t go there, but because there is no where to go, nor anyone to go with.
This past week I had a friend of the opposite sex tell me that I wounded him with malice, without me even knowing I had ever had such a thought. I cried and made my case. Then, somewhere in the midst of sending paragraph explanations, I quit. I’ve got nothing but love here. That’s my heart. There is no reason for me to tip-toe when I know my intent. Also, I have noted this interesting pattern: Usually when someone assumes/accuses ill intent where there is none on my part, it’s the accuser shadow boxing their own transgressions, or those that have previously trespassed against them.
If you want to be trusted, you have to trust. If you want more love, you have to risk love. That’s the whole thing.
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.
no additional words needed
I’m always trying to do and say the right things, yet somehow constantly coming up short in others eyes. I know, logically, that I can not make everyone happy, even with the best intentions. Yet, whenever I deem somebody to be upset about things (that have absolutely no bearing on me) I try time and time again to “fix” it.
I must learn the subtle art of not giving a fuck. Literally, I could care less. It appears to work out better for those who care less. Well … the others appear alive and fulfilled, but they are the walking dead. They’ve gone numb for self-preservation’s sake. They can’t see or hear you.
This means all the sugar I was spoon fed through my church upbringing is what now makes me sick. Being told to do unto others as you would do unto yourself (or is it: as you would have others do to you?) in principle, is lovely. Out here in the hard knock life, the reality is quite the opposite though. Everybody is looking for real and nobody is bringing real to the table. The most socially acceptable and fashionable means of intimacy is sexual, but sex does not equal love; and it does not quench our soul’s deep thirst for connection.
We’re left with sadness, feeling incomplete. Those feelings are valid;
And also, I am done with them.
I have been judged and crucified this week for having the audacity to sit at the table and continue to play my hand as it had been dealt, when everyone else has folded and walked away. Where do you go after crucifixion?
“nothing gon save us now”
Blinders off. Heart: broken.