New Phase of Healing: A Delicate Yet Messy Balance ⚖️
April 10th was my 10 month mark since my brain surgery. That’s 2 months away from what my neuro-oncologist calls one’s “surgeversary.”
I’m honestly not sure exactly how I feel about my 1 year mark. In one sense, it’s a huge deal, to recognize what I went through and to celebrate how far I’ve come. In another, I’m scared shitless.
Every scan brings up anxiety for me, because aside from thoughts (which can be negative or positive) and intuition, no one actually knows what’s going on inside of our brains. Kind of wild to think about! The fact that the state and health of our organs are invisible until blood work, scans, symptoms appear and disappear, and/or medical professionals tell us otherwise.
The MRI’s of my brain are the tool that can actually see and assess what’s going on. Is my brain healing as expected? Is there any new growth, is the tumor growing back? These are only 2 of the many questions that repetitively race through my mind.
I have a love/hate relationship with the MRI’s, but they are also something that I will most likely need to do for the rest of my life. And as grateful as I am to be alive during this time of modern medicine (both western and integrative), facing this fact also straight up sucks. Maybe in 5-10 years time I’ll feel differently, but for now, they are still something I never exactly look forward to.
“Scanxiety” is another term I have learned. And the “scanxiety” is real. No one knows what’s going to show up until they see the images, talk with their neuro-oncologist, and then confirm everything with the radiologist.
Sometimes I am genuinely curious about the results, and that curiosity is paired with anticipatory anxiety. Being in the MRI machine has actually (for the most part) become a calming experience for me. I’ve become accustomed to the sounds and vibrations, and they are unexpectedly lulling to me.
The thing about anxiety, (especially invisible anxiety*) at least for me, is it often comes up when you least expect it. Over these past 10 months, I’ve gained a ton of tools to either be with the anxiety or work with it and through it, and let me tell you, I am so glad I have them. That being said, as time goes on, even though the anxiety is still there, I have less and less of it (thanks anxiety toolkit).
<*Invisible anxiety is the outward appearance that one is not anxious, meanwhile internally, there’s a chaotic swirl of internal anxiety, or internal distress.>
However, there’s been a flood of new feelings that have come up for me recently: the top two being deep sadness and anger.
Sadness that I still can’t live my life the way I want to (yet), and anger (about a lot of things), but primarily mad that most people, unless they have had brain surgery, have a hard time understanding what I am dealing with or going through. They can have sympathy, empathy, and/or relate (always appreciated), but sometimes I wish people “got it.” Like, truly understood everything I went through, especially because of how complex, nuanced and layered it all was, and still is.
These layers, especially my layers, of not only having had brain surgery, but that I then had a severe allergic reaction to a steroid that caused me to become Catatonic, and then to top it all off the Lyme Disease resurfaced. Sometimes I wonder what it would be like to meet someone who has gone through, or experienced all 3. I often feel isolated in that sense.
Going back to anger – it’s the hardest emotion for me, as I am not an inherently angry person. I’m learning what to do with my anger in a healthy and safe way, and a friend recently reminded me that anger and passion often coincide. I love this concept. I can channel my anger into my passions. This doesn’t mean being angry at the horse I ride, for example, but turning that anger into passion and doing the things I love most with deep passion.
Speaking of horses, about a month ago I competed in my first horse show since surgery. This was no small feat. Even though I’ve ridden and shown on and off since 2nd grade, this time round felt surreal, new, and very different.
Ross, my husband, was there with me, and put the experience of a horse show into a sentence I really liked and I think most people can connect to: “Showing is like being on vacation, working your a** off, and camping.” To me, it’s so much more than that, but for those of you who have never been to a horse show, in layman’s terms, I think it’s a really good way to think about it.
Let’s break that down into what it means to me:
Vacation: the competitions that I go to are typically 3-5 days. They are typically in California, but a 2-6+ hour drive from where I live. So travel is involved, alongside lodging, going out to get meals, natural adrenaline, different people, new scenes and experiences, and time for reflection (when you’re not working your butt off). You lose track of time: there’s definitely a “rush to get ready and wait” component. There’s also complete chaos balanced with quiet solitude with the horses, their smells, and for me, my barn community. I love every part about it, and as one of my trainers often says, “…it’s addicting.” It truly is. And when the show is over, there’s often complete exhaustion, deep reflection on how it went, what went well, where one could improve, and then a willpower to do it all over again.
Working your a** off: between the quiet sunrises and sunsets, you’re typically always on the move, whether on foot or on horse. Pre-surgery I was extremely independent (I’ve always loved my independence). Not only did I prep, ride, and show the horse I was riding, but I also helped out other people. I loved all of these components, and still do. This show, being the first one post surgery, I needed all hands on deck. There were so many hands involved, including my own, to ensure I was ready, practicing, eating, and resting. I ensured this happened on repeat which is much easier said than done, especially 4 days in a row. Huge shout out to my husband, who officially became “my horse show husband,” my trainers, barn family, and the owners of the horse I was riding, Delta. It took everyone there to get me through, and I did it. I’m still pinching myself that not only did I do it, but I did well and unexpectedly won a belt buckle at the end of the show. Not only was everyone proud of me, but most importantly, I am beyond proud of myself.
Camping: Each show is different depending on location, but there are certain elements of the show that definitely remind me of camping. Our barn is set up with chairs for people to sit and chat (minus the campfire), there is food that people bring to ensure everyone is fed and well sustained, and even though it’s typically eaten on the go or between classes, it’s essential (and I’m always grateful) when more of it suddenly appears. Especially for me right now, because of the fact I need to eat every few hours to ensure my brain and body stay sustained. If I don’t eat every few hours, it literally feels like everything is upside down and backwards, I can’t think straight, and forming complete sentences becomes hard for me. I don’t know of anyone who actually stays in a tent, but there are horse trailers with living quarters, RV’s, hotels, and Airbnb’s where people typically stay. I guess one could call it glamping. As someone who used to love to camp, and still enjoys camping but prefers glamping, it makes the experience even more fun and special to me.
A delicate yet messy balance. That is the title of this entry and I haven’t directly addressed it yet. This phase of my healing journey is definitely delicate and messy.
The horse show was a delicate, and intense balance. My life over the past month has also been an extremely delicate yet also messy balance. By delicate balance I’m referring to being able to do so much more, and accomplish so much more on a day to day basis, but also still learning what’s too much.
What do I mean by too much? Too much equals my brain spinning, decision making becomes close to impossible, headaches, and knowing I need to rest but my body often fights it. I’m learning how to rest, how to not feel guilty about resting, unlearning that rest doesn’t equal laziness. Because let me tell you, whether I want to or not, there are parts of days I need to lay on the couch, sometimes in the dark, and literally do nothing.
I’m someone who has always thrived on having a sense of purpose, so true rest has been hard for me and I’ve had to teach myself what rest looks like for me. And it’s tricky, because each day is different. Some days rest looks like laying on the couch doing nothing, sometimes it’s knitting, sometimes calling a friend, watching TV, listening to music, taking a walk, or often just being. Nature really helps, and it’s astounding to me what comes up and how much I notice by just being, especially in nature. Turns out just being can be a beautiful thing, and oftentimes for me, that’s when my brain becomes quiet and I have deep and profound thoughts.
In this quiet place of being, I made a really big and also difficult decision. I decided to defer going back to graduate school another year. As hard of a decision as it was for me to make, I know it was the right one. It’s not that I couldn’t do it, but even by this summer I know that it would be difficult for me and stressful. And if and when I do it, I want it to be an experience I can fully embrace and enjoy. The last thing my brain or body needs right now, or this year, is extra stress.
Upon talking with a woman who I refer to as my fairy godmother, I told her I needed a term for my current delicate yet messy phase of healing. She immediately said, clarity, and that word rang so true. She then reminded me that clarity takes time and how fortunate I am to have that time. So I am going to hold clarity close, and trust that this delicate yet messy balance will change, all in due time.
Xx,
❣️
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