“What can I write about after all this time?” I asked him. “Write about this,” Ben said with a laugh. He’s so infuriatingly rarely (entirely) wrong.
Though it sits here quite public, I’ve been reflecting on my previous blog posts recently in an effort to decide whether to hand them over to someone a bit more anonymous, whom I already care about without knowing him. How unrepresentative they are! I read my words about books and I adore them; I read my words about health and I cringe. How lost I sound, how constantly in pain, how perpetually miserable. I look at my initial post and wonder why I never corrected it when that stopped being my treatment, my diagnosis. I wonder.
My life has been a happy one, remains mostly a happy one. Since starting this blog, I did yoga, I hiked, I laughed, I fucked, I saw more stand up than any single individual should. When things objectively hit their worst, I still made it to Cursed Child (though cursed be the money that goes to JK Rowling), still made it to a charity event hosted by Casal and Diggs at which I made a valuable friend and watched my favorite movie in a room full of people who love it as much as me. Today, when able, I walk, I see the water, I try my hand back at music, I enjoy the multitude of definitions of “connection.” I’m not sure if you knew that while reading my blog, maybe because it did serve as such a coping mechanism for me when the pain hit hard. The pain relief premise of my blog worked, friends! But me … I don’t know how much me came across.
There will be no real book update for you today. I can’t read at the moment. The brain fog makes the cognition and focus required impossible. The Glass Hotel has been sitting there on my wall taunting me since its release, only for Emily St. John Mandel to actually start writing quickly and lap me. Oh, but I want to give you an older review so badly. Is it enough to tell you briefly that I’ve never read any book more accurate and intensely emotional about the implications of our prison system than An American Marriage? Or to tell you that I am not sure I’d bother with the last 40 minutes of NOS4A2 even if I could read right now? That while The Witches are Coming was a horrible unapologetically biased follow up to Shrill, I still loved it? Carrie Fisher’s Princess Diaries is eerily prophetic of her own death, and Postcards From the Edge is an unsettling non-fiction stream of consciousness named fiction. Becky Chambers has some of the best sci-fi character development I’ve ever read. We should be watching Angie Thomas and Tomi Adeyemi as exemplars of how to call the youth to action. YA, why weren’t you like this when I was that age? How many books is the “right” number to discuss in a book blog when I just want to write?
That’s enough. Today, instead, you get me.
The logistics first, I suppose. I had to move. I lost my job, hemorrhaged money, and took advantage of nothing the Bay had to offer in a pandemic. I temporarily (I hope) moved to the Midwest, where the living is shit but cheap, and at least I can be 5 minutes from the water and 15 from the best healthcare of my life. I found I’ve had so many unnecessary procedures, so many unnecessary addictive medications feeding my addictive personality over 8 years. The Clinic told me within 2 months that I have POTS. I have POTS. And it comes with some kickers. But mainly, I have POTS.
Most importantly, I have answers. I have treatment. I have a plan. I have the ability to become functional. No one here has ever given me the shrug emoji about a symptom. I have a new support network. I’m making new friends (again). I finally confront the PTSD I barely knew I’d had. I am a different human. One who wears her heart on her sleeve just as much, loves just as hard, but who no longer yells, no longer invites toxicity in to play. It all matters.
And some of my previous posts may have been right. When I wondered aloud in the blog about marriage, why didn’t I actually wonder aloud? Over a year into our separation, after that perfect 25 person wedding, I have to wonder now, what were we thinking? Perhaps of a decade of love, of emotion, of the direction it felt like we should go. Not of the turmoil, the pain, the unknowns. I don’t regret him, don’t regret this moment. But as I grow older I can’t help but wish I could hand over some of my ever increasing boldness to the younger version of me. I’ve always been bold. I tell stories of my 20s to strangers and their surprise at my independence surprises me. And yet… I continue to grow more bold. Waking Life was right after all. I grow.
Then again, all of my internal boldness is currently juxtaposed with terror.
I am scared to go anywhere at the moment, and yet I want to be everywhere – finding myself almost climbing down onto clearly labeled “do not sit” rocks today to sit, feeling the breeze from the water closer to my face. Sunsets. Sunsets. Sunsets. I will soak them in and talk to you about watercolors or the way a particular song hit at a particular moment for hours. I am now so terrified of people, but yearn for them. Wait, no. Yearning for people isn’t quite right, as being alone with so much time brings its own true kind of peace that I’ve missed since I was last alone. I yearn for a touch or a kiss that feels like magic. And a hug with someone I haven’t seen in a decade. I mourn intimacy. I yearn for that closeness of sitting on a couch saying nothing and understanding everything. I yearn for singing at each other in person rather than facetime. I mourn the Pacific and the mountains and the redwoods and all the people who saw them with me. I yearn for passing a joint, not that I passed a joint in all the time I lived in California, just for the joy of not worrying about passing a joint. I mourn the friend who didn’t make it through covid, whose smile I’ll never see again. I yearn for his laugh. I mourn my family. The family I was so close to on the west coast, who have yet to come see me now that I am only 3 hours from them. What excuse will they have next? I yearn.
The people I know are now divided by how we move about the world. Where have you been? Who have you seen? Could you permanently neurologically damage me? Could you kill my friend whose teeth chatter as she sits behind plexiglass in a school? The decisions have been made at this point and there’s no changing anyone’s mind. How do I move about the world with you if you move differently in it than me? Do I? Do we stand apart from one another, lost for years to come? No, no, we’ll have to find a way. Right? Right? If I told you I could pass out and can only walk so far, that I didn’t need to be babied but if you wanted to touch me you had to watch where – would you do it? Or would I become an awkward liability? Is this why I pull in anyone new then push them away? And hold the familiar in tight instead?
And oh you whom I love. You who I’m so tired of seeing through a screen but who I never would have reconnected with if I wasn’t seeing you through a screen. What a walking contradiction of fulfillment you’ve become. What a walking contradiction the way I now love and need and hate the way I connect to all of my screens has become.
I can’t read the news. Fuck the news. Twitter is where activism lives so I live there now. Instagram is where happiness lives so I live there now. Reddit is oddly where distraction and a complete disconnect from reality lives, so I live there now. Anywhere but the news, I live there.
Click, click, click, looking for anything that matters in a sea of things that don’t actually matter in my now more physically limited life. What can I pay attention to that has worth? If I tell you about Blindspotting the show, will you believe me that its finale is the most impactful thing I’ve watched since I became disabled? It’s only a 4 hour total commitment. Will you accuse me of only loving how representative of the Bay it is? Can’t it be both?
And so here I’ve continued to ramble, because even to write this much is to grow tired. But also because I miss us. And even though I may not be analyzing books for you this time, perhaps this one was a little more of me. So that the next time I cope, the next time I write about how hard it’s been or how isolated I feel before I tell you about what I’ve been dying to tell you – you’ll know it’s not all of me. But rather only a piece in a moment, and that I’d likely give you all of me if you ever asked. Take all of me.