I have no idea what I am doing.

Week 41. That’s where I am with my Friday writers’ group. Today, we’re supposed to craft an essay around our favorite childhood memories. I have, instead, opted to actually post in this blog — something I haven’t felt called to do in quite some time. My inner child was all about some good stories, so I’m certain she’d approve of my choice to pick up my digital pen in a place where someone else might actually get the chance to read the work.

Today is October 8, 2021. There’s nothing particularly special about today. It’s beautiful outside. 67 and partly sunny. Things are joyfully normal at the moment. Henry and Gabrielle are upstairs with Adam, and I’m in the basement on a Zoom call with some of the best people I know, writing together, separately.

I’m 2 days out from having taken a 6-day medrol dose pack for what appears to be a near-yearly beginning-of-October MS relapse. This is knowledge I came to thanks to FB memories. Reviewing my memories earlier this week showed me that I had a MS relapse 6 out of the last 10 years around this time. So, it looks like better than 50/50 odds that, in the future, I’m going to be feeling like shit on my anniversary. Considering that I had a flu-like virus and seizures at my wedding and still sang and danced and had the best day of my life, it only figures that our anniversary would remind me that having a good time has more to do with attitude than anything.

At the moment, my body feels normal. I’m no longer dealing with crushing fatigue or numbness on parts of my left side (back of the arm and chest most pronounced, which were the first symptoms that caused me to go to urgent care and end up with a diagnosis in 2007), and I haven’t noticed any seizure activity yet today.

Earlier this week, was, if I’m going to be honest, a total shitshow of pain (physical and emotional), memory issues, PTSD flashbacks, nightmares, and personal growth. I’m so grateful for corticosteroids, EMDR home practice techniques, and music.

And I’m grateful for TikTok, though I’m terribly slow to figure it out.

Recently, I’ve been watching it in the mornings and at night while medicating. (I smoke MMJ these days to help with seizures, MS pain and muscle spasms, and PTSD/anxiety/depression. It helps more than other medications have, but I’m strongly considering starting to buy RSO and making coconut oil capsules because I want to feel more in control of the dosage of my medication and to not be causing my voice damage. I’d buy the edibles at the dispensary that are already ready, but they all contain sugar. WTF is up with that? Like, if you’re making medicine for people with seizures, maybe, like, consider their potential diets. Just a thought.)

Anyway, TikTok has been an amazing resource for meditation. So many people make singing bowl videos or affirmation videos. I haven’t bought into the “Law of Attraction” (and I never will, because I understand the victim blaming part of that mentality, and I am not buying into a spiritual way to berate myself for existing in a way other than I would prefer), but affirmations are a science-backed way to help yourself create new neural pathways when you’re choosing to improve your self-esteem and change how you talk to yourself.

Sure, I don’t believe that “I am healthy, I am wealthy, I’m the shit, I am that bitch” –YET, but one day, I’ll get there. One TikTok video suggested putting “What If” before affirmations that feel like bullshit to help you consider the possibilities.

What if I am a bad bitch? What if I am, in fact, the baddest?

There are also a double fuckton of people just busking on there. I’m not going to pretend otherwise: it makes me want to do the same thing. I mean, could I go live, practice an instrument, and just let people send me money? Can life be that easy? IS THAT ALLOWED??? More importantly, can I allow myself to do so? I haven’t busked since Berklee.

One of the biggest downsides of being diagnosed with CVID has been a fear of crowds. I mean, it’s hard to want to perform in a venue (even not during a global pandemic), for an open mic night when you’re immune compromised. But where’s my excuse when I can perform from home whenever I want?

Of course, it also helps to have a seemingly endless parade of videos in my FYP (For You Page) encouraging me to make and post content. Need a pep talk? TikTok has your back. I have saved some of my favorites. I know they don’t know me! Do I care? NO! DIVINE ENERGY IS TELLING ME GOOD THINGS, AND I ACCEPT THE MESSAGE.

Do I love and interact with every single singer-songwriter, harmony stacker, poet, artist, or D&D nerd that comes across my feed? YOU BET YOUR ASS I DO.

Do I make ridiculous 1-shot videos with a goofy beauty filter to help encourage other people too? Um, yes. I very much do. In fact, I am low-key cosplaying as a bejeweled goddess of inspiration because it makes me laugh. Who needs a book and dice to play make believe? The whimsy is strong in me when I see the filter. It makes me feel playful, so I let myself play. And allowing for play? That’s sort of new to me – and a sure sign that I am conquering depression in the moment.

Yesterday, I read some of my first entries from this blog, and they made me laugh and have bittersweet feelings. I have grown and changed so much. I’ve been deeply committed to being who I am and doing what I can with life, despite my limitations, and that hasn’t changed.

In fact, it’s really cool to be able to look back over it. I wish I could send a love-bomb back in time to the Rae who was coming off of Cymbalta and Abilify at this time in 2012. That shit was super hard. It caused nearly constant suicidal ideation — but I’ve learned to treat the persistent, unwanted thought like sneezes most times. It doesn’t feel like an emergency. Probably because of the number of times my inner response to it has been, “Thanks for your suggestion. Our operator is currently busy. Death is inevitable. We thank you for your patience.”

I could never have envisioned the life I live today back then. Sure, I’ve had a lot of setbacks, but ultimately, I’ve been so successful. It’s impossible to look into my children’s eyes and feel any other way.

Gabrielle blowing raspberries.
Awwww, raspberries!!!

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