I hit a block. Not only writer’s block but a personal one. I went from sunshine and positivity to complete physical and cognitive fatigue, which if you have never experienced it before, is absolutely exhausting. Exhausting to the extent that your brain and body doesn’t know what to do with itself. Complete overload. And reversing that….well I’m still figuring out how to do.
Let’s back up a little bit. When I feel great, I go hard (socially, physically, hobbies, etc.) because feeling good feels great – I think anyone can relate to that. But then I over-do it, and when that happens I have a really, really hard time. It’s a delicate balance; to figure out my threshold of what’s just right and what’s too much. And it’s tricky for me, because every day is so different.
I’m figuring it out, and it takes a lot of self-advocacy and transparency that can seem blunt, but it comes from the deep primal need to care for myself. Not only to care for myself, but to love myself. I don’t think enough people in this world truly love themselves. And don’t get me wrong, true self love is hard. I’m still working on it, and most likely will be for the rest of my life, especially because I don’t fit the mold of “success = what you do for work” in our majority ablest society. My illnesses are invisible, and while I do not by any means want to undermine those whose disabilities are visible, in my experience, being invisibly disabled is hard, because well, my disabilities are invisible.
I’ve had a few epiphanies recently based on my own thoughts, conversations with friends, and my doctors that are really important for me to write about.
The first one is a big one. CANCER. I’ve avoided the word entirely and my surgery was almost 1 year ago. Yes, my tumor was cancerous. A very low grade cancer which means very unlikely to grow back because they resected (removed) the entire, very small mass – but it wasn’t benign. I didn’t use the word cancer because I was afraid of it, but now that I’ve started using it, it somehow feels empowering. Frightening, but empowering. I had cancer. Holy shit. Why is this just hitting me now? There are likely a lot of reasons, but because the tumor was cancerous, it’s something I will need to monitor (via MRI’s) for life. For f*ing life. Again, this is something that I’ve known, but acknowledging it out loud feels like a dagger to the soul. The unknown: will the cancer begin to grow back? If I get stuck in my head about it I become smothered in overwhelm and anxiety. I have so much life left to live and so much ahead of me that I’m looking forward to, but all of my decisions ride on this unknown, because the unknown will always be there. I don’t do very well with the unknown, but being with it it reminds me of one of my favorite poems by Rainer Maria Rilke:
“Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.”
Next up: the word REMISSION. After talking with my neuro-oncologist, she relayed she doesn’t like to use the word remission with brain tumors, because of the fact it’s something you have to monitor for life. She told me she likes to use the word dormant, or dormancy. My tumor is dormant right now, and hopefully always will be, but again, the unknown is tumultuous. Someone recently said to me, “…well you’re better now right?”
No. I was shocked they said that. Better? What’s that even supposed to mean? Hard no. I’m still healing, and it frustrates the hell out of me that I’m not healing faster. I’m hard on myself: why has it taken me until about a month ago to drive independently (which still scares the living daylights out of me in all honesty), why does my husband still need to cook dinner at night, why don’t I have the energy to do more, be more? Do you see the spiral?
And then I stop to ground myself. Find the self compassion, empathy, and love. There are so many legitimate reasons that I can’t do, or am just starting to do these things. I am not less than, I simply live in a society, and especially country where healing and self care are often overlooked. Turns out healing, at least for me, is more than a full time job. It’s hard work, exhausting, demanding, and takes extreme diligence, trial and error, understanding, and self-forgiveness. And I’m not healing from one thing: I’m healing from brain surgery, steroid induced catatonia, and Lyme Disease. Multilayered and multifaceted.
Number 3: something my therapist calls “mourning the self.” She asked me, who was I before surgery, and who am I now? I’ve spent a long time journaling about just that, and probably will continue to do so. But here are my thoughts for now:
My life today is soooo different than it was pre-surgery, and I’m convinced that brain surgery changes one’s trajectory, beliefs, & decisions for life. It can be a beautiful thing really, delicate and tender. And also extremely difficult. I’ve found myself comparing my life to other people my age: working full time, attending multiple social events, going out after 7pm – the list goes on and on. I don’t have the bandwidth for any of that right now. Yes, that will change as I continue to heal, but it’s hard for me to see my peers living life fully when I feel like I am halfway between living under a rock and then also living in a radical world of healing that few will ever understand.
When journaling, what exploded from the pen shocked me. As difficult as everything is right now, post-surgery Jenny is like a whole new type of flower than pre-surgery Jenny. She’s brave AF, gaining a sense of self that never existed, has new dreams and visions for her future, and a deep, deep yearning to life life to the fullest (even though that’s limited for the time being).
I don’t wish brain surgery, catatonia, or Lyme disease upon anyone, but it definitely has begun to unmask a veil I didn’t know was there. Slowly but surely, I am stepping into my power, and when I catch glimpses of it, or take a moment to step back, whether feeling it, sensing it, seeing it, holding it, or knowing it, it’s startling, but also freeing, empowering, and freaking bad a**.
Until next time.
Xx,
❣️
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