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.
—Mitch Albom, For One More Day
The people who will not sit with you in your dark, do not deserve your light. Please choose where you use your time and energy wisely;
and finish what you start.
Perhaps it is the steroids treating my pneumonia talking, but as awful as I feel physically, my heart is hella happy.
First night of summer and my baby girl finally spread her wings and socialized. Met knew people. Genuinely laughed. Bounced up the stairs at 10pm just making it home for curfew and the thing she’s been missing for so long….that happiness, that genuine lust for life as she relayed the events and conversation of her night.
It bound up everything in me that had been emotionally destroyed.
I can’t explain it beyond that. I’ll take it.
I missed a call from the police department today. With a son with special needs living on his own, a newly licensed teenage son and a teenage daughter with mental health concerns, getting a voicemail with an officer/contact information but nothing else, that’s not cool!
I did what any mother would do and switched back and forth between attempting to reach the officer and my kids. Murphy’s Law: Once I got the kids checked off, I got through to the officer. He’s following up on a telecommunications harassment complaint.
To make a very long story short: I had to reprimand my daughter about something she posted on social media about the boy who randomly slid his hand up her shirt. Yes, HE harasses her, HE is dating her best friend since 1st grade and friend takes his side, HE bullies my daughter at school to intimidate her from talking, her mental health took a huge hit, I had to pull her out of the school, but she was reprimanded and had charges dangling over her head because of talking about it, yet this little fucker receives no consequences. His mother said, “My son wouldn’t do that”.
PARENTS: LISTEN! We’re all human and flawed. Yes, even your child. Believing that your child just simply isn’t capable of doing something is a poison like no other. If we do not have uncomfortable discussions with our children, we will only create monsters of privilege with no accountability. (See:Trump)
This whole situation is bringing up unpleasant memories. PTSD in full effect. I just don’t understand how this is still happening 20 years later?! That’s fucked up.
The conversation I had with her was to the point and unremarkable. The disgust and despair I feel for having to have had it at all … I don’t even have words to describe.
Wild hearts can’t be broken, baby girl.
It hurts, yes, but that’s growing pains.
I know you think you’re a mess, but trust momma, you’re just breaking chains years ahead of your time.
I’m proud of you. Stay woke.
No matter what anyone does, says or thinks about it, I’ll fight for us to know the truth. I’ll never surrender.
This is OUR rally cry.
Sometimes, when I’m recovering medically, being alone let’s my mind wonder to dark corners. I get really hard on myself.
My Dad called tonight and he wasn’t having any of it.
As I cried to him about all the things that keep a middle-aged, single mother up at night, all the things I put away from everyone else, but Dad, he stopped me in my tracks. He told me that HE. ADMIRED. ME. That I was was one of the strongest women he knew because I have survived multiple wounds and sufferings beyond what most people would be crushed beneath singularly.
I said, “Dad, I just feel like I’m always trying to do the right thing and I keep on coming up short.”
He replied, “You have an adopted special-needs son who would likely be dead if not for you and who you treat just like your own biological children, because he is to you and anyone else who knows you. You advocated for him through everything. You might not have much but you always get what your kids need. You raised some incredibly resilient kiddos. You have life long friends because you’re a wonderful friend. That’s incredibly rare, Stephie. C’mon, give yourself some credit.”
Just as I was going to bed, I started thinking that I had not accomplished as many things as I had wanted to today, when my dog, Zeke, walked into my room. I just looked down at him and smiled, realizing that even on my worst days, I’ve rescued five animals. Things may not be the way we want, but yet, still we have what we need; and no matter what ANYONE else may think or say…my kids still say “I love you, Mommy” and that’s all the things.
The smallest act of kindness outweighs the grandest intentions.