“The only way to make sense out of change is to plunge into it, move with it, and join the dance.”
I’m quieter inside these days. Calmer. Even when I’m stressed, moments later I can talk myself off the ledge. I have an acute awareness of how small I am, how delicate, particularly my hands. I’ve never perceived them as the fragile constructs of bone and muscle that they are, nor was I ever really aware of my physical boundaries. I was fearless and strong once, a Viking, and now it seems I’ve become a fragile flower requiring more rest and more planning as I move through life. Well, maybe not so delicate. I relearned burpees in bootcamp and ran my first 5K marathon last year, after all. Not a half marathon like I wanted to do, but not bad.
I have strategies now, and I use them.
I’ve found myself solving problems in unexpected ways on occasion, perhaps partly due to meditation, and some of it due to neuroplasticity. I had read that I’d find myself doing some things a little differently following surgery, and there were indeed some small changes in my behavior. Not huge personality changes, which would have caused concern, but small imperceptible things unnoticed by friends and family. But I notice them, in the quiet garden of my mind. I watched as new flowers grew in areas once trodden on and crushed, and dead spots given new life in different places.
I’m also happy to report I’m in a new music project, which came completely out of the blue. Somehow I got shanghaied one afternoon by the group that had recruited my husband on drums a couple of months before, and that brief experience was enough to convince me that I was ready to start playing in a band again. We just had our first proper show, and I actually sang lead on a song I had written in the 90’s. Though I had a little anxiety about how my mind would respond to being onstage again with its variety of constant environmental changes, I found myself totally in control and relaxed. Super focused, even. Ingrained instincts from years of performing came back to me, much like when I had first started driving again. Like riding a bike, as the saying goes.
It was May when I was confident enough to get behind a wheel again. Who knew there was so much involved in driving? Your hand reaches down to turn the key, your right foot steps on the break while your hand reaches for the gear shift. You check for oncoming traffic in front and behind me, put the car in drive, put on the brakes to stop at the stop sign, continually survey the scenery, make a right turn, put your foot on the gas pedal with just enough pressure to keep moving at a steady 20 mph, etc. Somehow all of this happens automatically in microseconds. I feared a moment of forgetting like when I was first confronted with the task of putting my contacts in, but thankfully all the stored information was intact and my body knew what to do.
Then there was my inevitable return to public places where there would be people, movement and noise. My first venture took place at our local market. Equipped with my black beanie, big dark sunglasses and earplugs, I had been fine until my husband walked away and left me for a moment standing near the deli counter. I became frightened and anxious as my brain struggled with the carts moving past me and people yelling their orders over the counter, or random conversations nearby. I also felt terribly self-conscious standing there, a strange creature looking like a refugee from Andy Warhol’s Factory. (“Is she trying to be cool or something? What’s with the Foster Grants?”) I felt like a fragile old woman, afraid to move, staying stock-still until my husband came to rescue me. He wasn’t gone very long, but long enough for me to grip his arm tightly like a life preserver as we continued with our shopping.
There was also a company movie outing coming up to see the recently released Avengers: Age of Ultron. I had facilitated the rental of a movie theater back in December and, having already gotten my doctor’s permission to see it, I was determined to go no matter what. My best friend drove me, and I entered leaning on her arm as I walked slowly to where our theater was. I was again equipped for the outside world and hoped my appearance wouldn’t make people feel uncomfortable.
I received a variety of reactions: Hugs, no hugs, declarations of love, general well wishing and gladness to see I was okay. But some people were nonchalant or kept their distance. I saw them looking at me from a distance as if wondering if it was really me. Perhaps they were. Soon the lights went down and the movie commenced, and we could all escape into the sweet haven of Marvel movie magic and forget about life and brain tumors for a couple of hours..
I kept my sunglasses on and my earplugs in, which was good because there was a LOT of action and fast movement. And noise, and flashing lights – I should have assumed there would be. What action movie these days doesn’t have a lot of people zipping around, shooting and spectacular explosions? There were a few moments when I had to cover my eyes but for the most part I got through the whole movie intact. Afterwards, when the lights came back on, more people noticed me and more hugs and how have you been’s were exchanged. It felt good to see everyone, if only briefly and in a dark theater.
A few weeks later, we planned an actual visit to my workplace prior to my return to make sure I could handle it. Just a half hour, then we would go to the art museum to see the Kahlo/Rivera exhibit. This was a lot for me in one day, which might have been why I forgot the tickets. I realized I had forgotten them halfway to our destination and we didn’t have time to turn around and get them. This was very upsetting – already things were not going according to plan. How did I not grab the tickets off the table as we were leaving? I cursed myself for this oversight, then my husband said, “Hello! Brain surgery!” – which had become our favorite saying every time I was hard on myself. I calmed down, momentarily forgetting that my triumphant return was all planned. I was supposed to lean dramatically on my husband’s arm while making my way around the two floors, perhaps having rose petals thrown in my path by my co-workers. A six piece New Orleans brass band would be playing an instrumental version of Praise You by Fatboy Slim and there would be cupcakes for everyone.
Well, there were definitely cupcakes.
My husband dropped me off while he went back to the house to pick up the tickets, and I went to deal with things alone. I had brought cupcakes with me, having used the supplies I had bought for cancelled cake jobs. How excited I was to see everyone! Also I longed to belong in a community again where people needed me. I’d been alone too long without human contact other than my husband.
People noticed my sudden appearance and soon a happy crowd grew around me (and my cupcakes). Again, a mixture of reactions: embraces from people I didn’t expect any physical contact with, a person clearly trying very hard not to cry, and then some people just looked over and smiled and kept working on whatever they were working on. But I do vaguely remember getting a standing ovation at some point. It was all very overwhelming and I was starting to get that overstimulated feeling at the top of my head – an odd buzzing sensation that told me I better not overdo it.
I was getting fully assaulted by bright lights overhead, the sense of the high ceiling above me, everyone coming up and saying hello, people moving and chatting. Someone walked me to the big leather couch to rest and I sat there and did my best at conversing with two co-workers while I waited for my husband. He arrived about 15 minutes later, and then we went to the exhibit. I found myself struggling to stand upright but enjoyed it immensely nonetheless.
Around the same time I had my first venture to a restaurant. I walked in, again leaning on my best friend’s arm, trying hard to ignore the constant noise of forks hitting plates and the loud clatter of tables getting bussed. It was very busy for a weekday, and I didn’t expect to see anyone I knew. We were standing at the door waiting for a table when I saw a keyboard player friend of mine. I watched his expression change from quiet recognition to surprise and wonder, which told me he was aware of what had happened to me. He smiled when we made eye contact, and immediately got up and walked over to hug me. It was the same flavor of hug that I had gotten from many, the kind that tastes sweetly of gratitude and joy that someone you know and love is still alive. He then told me that a mutual friend had told him about my surgery and how great it was to see me up and around. He asked me what happened, and I gave him a quick summary.
This type of encounter was going to happen fairly frequently in the next few months but would soon wind down, much to my relief. There’s only so many times you can relate the same story, you know? But I really don’t mind talking about it and answering questions. You have to catch me at a good time though, when I’m speaking confidently and well.
My medications had been stopped, and my head was clearing. But my hair hadn’t grown back yet and it was getting too warm to wear my mom’s knit caps. So, I went into Susan’s Special Needs to get some reasonably priced head coverings. They had quite a variety of bras, bathing suits, wigs and hats to dress the fashion forward chemotherapy patient or woman of a certain age having hot flashes. Never in a million years did I ever think I would have any reason to go in there, but once I went in I found them very compassionate and helpful. The saleslady started off with “How long have you been in treatment?” I took a deep breath and said, “I’ve just had brain surgery and just need something until my hair grows back,” which was still weird to say out loud. She nodded understanding and directed me to a private room with a mirror and a variety of scarves, turbans and hats, and my husband and I had fun going through some silly ones then settling on a simple style. I picked a black and a grey version, and after purchasing them we emerged into the hot, sunny afternoon. I pulled out the grey one and quickly switched it from the pink beanie my mom had knitted for me.
“Well, that wasn’t so bad,” I said, adjusting it in the mirror. I looked over at my husband. “Does this say cancer patient or does it say hipster?”
“Totally hipster,” he said. I sighed and looked at myself again. Well, I can rock this look for awhile, I thought. And so I did, but it did get old once I tired of being the tragic victim of a brain tumor. It soon lost its novelty and I became annoyed with having to pull something over my head to hide the scar every day.
I have vivid memories still of surrendering to the anesthesia, of time ceasing to exist and swimming in darkness. Of emerging painfully awake, alone and realizing slowly where I was and what had gotten me there. I remember immediately envisioning a C major scale on the bass fretboard and planning random things just to make sure I could still do it. Most of all, I checked if I was still me. But then how would I have known the difference? I just knew and believed I was whole still, and that I had survived brain surgery to my frontal lobe without any major change in personality.
People have told me that I’m a badass for getting through this. They never noticed anything different after I came home and I admit, it does seem like it never happened at times. But at night, I still run my fingers over where the violation happened, where skin and muscle were split apart, where the craniotome cut through my skull to expose the intruder and facilitate its release. There is the small dent in my head to remind me that it really happened, but only I know it’s there. I can feel it’s sudden appearance under my fingertips after I massage my forehead then move across to my hairline. It’s not as shocking anymore. I’ve gotten used to it. It’s a part of who I am now, and hopefully the last addition to my collection of scars that I’ve accumulated over the years.
I remember good things, too. Like my husband feeding me slices of Kiku apples drizzled with honey. The day my cat sensed I was okay again after weeks of laying quietly on the bed, suddenly biting me playfully on the eyebrow like she always did. Or the day my best friend and I came up with the best way to remember “meningioma”. We decided it sounded slightly Italian and perhaps was the name of an island off the coast of Sicily, known for its delicate eel dishes and rough coastline. (Say it: Menin-JOH-ma!)
This year has been transforming for me. I’m not who I was, but have become something more. I have a better sense of what’s important in life and my role on this big hunk of rock spinning through space. Were it not for this experience, I doubt I would have pursued transcendental meditation or made peace with my family, or finally accepted myself for all my flaws and imperfections. Were it not for this tumor, I would not be who I am today and more appreciative of what’s important in life.
I hope you’ve enjoyed reading this blog as much as I enjoyed its therapeutic value and finally flexing my writing muscles for a good cause. My last name means “teller of stories” in Tagalog after all, and this is my story. I feel like it’s the one I’ve been waiting to write all my life. And ain’t life grand?
Oh, yes. Yes, it is!