My Mom’s Mind

Morgan Santangelo

At 16 years old, I experienced my mom's journey through brain surgery and learned to cope with caring for her and witnessing her change.

My mom, Lori

I don’t remember the first breath of my life or the first few years of it even. However, my mother does and will always remember those moments of my first years being alive while I cannot recall any of them. It’s funny how that sort of thing works. The beginning of life is something most of us do not remember, the middle is all we have. When the roles are reversed and the child has to care for the mother, you remember the beginning of the illness while she does not.

When I was little, my mom would hold me in her arms and I would rest my head on her shoulder before bed. She would sing “Put Your Head on My Shoulder” by Paul Anka. It was a tone-deaf version with the wrong lyrics and completely off-key, but it was hers and it is still my favorite. My mom was always the goofiest one in the room wherever she went. She wasn’t the kind of funny that was mean or witty. She was the silly type that wore the biggest smile, making everyone around her smile too. It took the serious edge off of life, the way she joked around. She was comforting and kind, someone you could feel the love beam through. My sister and I adored this about her.

Singing “Happy Birthday” to our cousin

“We have to tell you something.”

When you’re a kid you think of a million things that those words could mean but not this, never this. Not your mom’s brain being cut open and sewn back together again to get rid of a cluster of cells that aren’t even supposed to be there. That’s how it was for my sister and me. That was what we were given: life-changing news in someplace as ordinary as the upstairs foyer of our house instead of in a white room with lights so bright they give you an instant headache. There was something abnormal about the way we found out, it wasn’t like the movies, dramatic or exponential, it was a simple conversation but it changed everything. It was not knowing what to expect from a noncancerous tumor that was the eerie part. Pressure on the brain can be dangerous, malignant or not.

Morgan’s Prom, 2017: A few days before surgery

Sixteen. Think of sixteen. It is destructive and evasive, and beautiful and one of the most memorable years. For me, it was, because of many things, including that tumor. So much happened that May. My driver’s test was scheduled for May 3rd, my junior prom was May 5th, my mom’s surgery was May 9th, and Mother’s Day was May 14th. It was as if my story squeezed all of its middles into May, the rise and the fall. So much of my core was squeezed into that one month. Who I became after that May shaped me into a person I could not escape. I remember being desperate to get my license not because I was a teenager and wanted freedom but because my mom was having surgery that wouldn’t allow her to drive for a few months. I was a teenage girl on paper; nothing like one in the flesh.

Benign neoplasm of the supratentorial region

A benign neoplasm is not the same as a malignant or cancerous tumor that would spread to other parts of the body and grow at a fast rate. Benign neoplasms grow slowly, meaning my mom could have had her tumor for decades without knowing it (National Cancer Institute). Sometime before the surgery, symptoms started to appear. My mom’s speech had always been a little funny but she reached a point where she sometimes wouldn’t make sense in conversations and would start talking about unrelated things. These were referred to as mini-seizures. The neoplasm was located in the supratentorial region, the upper part of the brain. It was on the left temporal lobe of this region which is associated with language, forming sentences, memory, and verbal communication (Guy-Evans). Her mini-seizures consisted of effects like getting confused mid-conversation and talking about nonsense. Some of these signs were similar to an acquaintance’s that had brain cancer which led to my mom getting the MRI that found the tumor.

My mom wanted the surgery close to summer so she could spend her time off outside, determined to fully enjoy the warm weather. She has always loved the sun and all things beachy, probably because she was born and raised in New York state, where the winters have two temperatures: cold and freezing.

“I’m a sun-worshipper.”

If the sun is out, my mom is outside soaking it up. Her love for sunny Florida beaches finds its way into corners of our house, adding a little sunlight here and there in the form of shells or signs that say “beach.” My mom emanates warmth like the sun. She is the bright rays that blind you and make you squint just to get a glimpse of the glowing ball of light above you. She spreads light to anyone who is within reach.

My mom was in the hospital for about a week. I come to regret that I didn’t document how that felt and what it was like. I think it was just too hard to bear those feelings at the time. I only remember flickers of images and smells and feelings. I remember the mini pizzas we ate that my grandparents brought one night. I remember the Finger Lakes Coffee Roasters stand where I got frozen coffee drinks in hopes that the sweetness would drown out the hospital’s lingering bitter taste. I remember the route we had to take to the Neuromedicine Intensive Care Unit that I quickly memorized but have just as easily forgotten.

There are some moments from when my mom was in the hospital that stick like chewed-up gum in my hair. The more I try to pry it out, the worse it becomes, getting more stuck the harder I pull. The word “mom” rings different now. It just does. There is a sting to it when I remember that the person who went under the knife is not the same as the one who woke up. “Mom” has more weight to it when the memory of her walking toward me like a zombie is attached to the word along with her face, barely recognizable from the black eye, and her hair, half-shaved off, while she held onto a stranger. The memory never leaves my head when I brought her a Tigger stuffed animal, my favorite Disney character, and she could only say “tiger.” Would she remember my name? Did she recognize me at that moment? There are some things I will never know the true answer to and I am not sure that I ever want to.

My sister and I struggle to look at pictures of my mom from that time. It’s nauseating. The hospital smell comes back, her black eye, swollen face, the zombie walk, and the silence. They all bring back the shivers but it’s the mood that gets us, that feeling: feeling like we weren’t sure what was going to come next nor how to prepare for it. It is thinking back to how we would cope with seeing our own mom like that, in a hospital, and having to care for her. I expected everything to be perfectly fine after that, the tough part over with, ignoring that what happened was serious. I could not have been more wrong. While she lay there in her hospital bed, barely speaking, swollen face, I coped the only way I knew how to: I read.

When I was 11, I fell in love with “The Boy Who Lived.” Harry Potter became my comfort character and he was always there for me growing up. It was only natural that I would seek comfort from him in the hospital. Instead of sitting there, staring at my mom who didn’t look or act like my mom, I brought my copy of Harry Potter and the Sorcerer’s Stone to the hospital. I came the day after her surgery because I didn’t want it to be a big deal. Going to the hospital and waiting through her surgery would make it more serious. So if I waited to go, then it wouldn’t be. I found comfort in these false realities, like Harry Potter. In my head, my mom was fine and we would be fine and everything would go back to normal. I told myself a fantasy, an excuse to convince myself that everything would be okay.

I remember the first moments of my mother’s new life just as she remembers my first breaths coming into this world. In many ways, my mom was an infant after her surgery. She could not move on her own and needed help with basic human functions. Then she was a toddler that needed help walking and learning to talk. She could only answer in the form of “yes” and “no” and could not show much emotion a handful of days after the surgery. It was like her soul was sucked from her during surgery and then shoved back in for a restart when her head was sewn back together. I had to help raise her as she did for me. I took her to the bathroom and tried to communicate with her. I watched her learn to write and understand the date and time and location we were at. Her hair was braided like a little girl’s so they could make the incision and she was a baby all over again. This time, I was the caregiver.

“Not November, Mom. It’s May.”

People often get so stuck on physical form and claim that people never change, but we are always changing. My mother is living proof of that. Change is the reason I am not the same person I was four years ago when this began. The change, or healing process, my mom went through after the surgery was one I had a hard time grasping. I found it easy to say she was doing well when her physical self began to heal back to normal. However, when it got back to normal I felt I had to keep it a secret that her mental health was still healing. The process was invisible to anyone who did not witness the change firsthand. We can see when a cast for a broken bone comes off but we cannot see the five titanium plates inside my mom’s head. They will always be there, along with her scar, as a reminder of everything. It all begins and ends with the brain. It’s the place that houses all of your motor skills, language, personality, thoughts, and more. People never think too much about how that all changes after brain surgery. My mom’s brain was sewn up and put back together again but a lot of her was left astray. Her personality was left to recover and heal because who she used to be was broken apart. It couldn’t be the same after that. She had to adapt to her new life and grow into someone new.

It doesn’t make sense to see someone you knew so well turn into a complete stranger. Those days in the hospital when she could barely speak, and even coming home when she needed help taking care of herself, felt unrecognizable. The healing process was much like caring for a child. We were all raising her to get back to herself. There were tantrums and outbursts and arguments because we couldn’t get through to one another. It took patience and tears and heartbreak. Time turned out to be the best healer. I cannot begin to describe the years following the surgery: how it felt to see my mom become someone else along with who she used to be, learning to live with her, and seeing her as my mom again. I had to say goodbye to the person she once was. It is difficult to remember that person. I remember snippets and images but it is still such a blur. I don’t know how humans adjust to such trauma. We just do it and adapt. That is what makes us strong. My mom is the strongest person I know. Our whole family is strong for experiencing her healing process together and starting our lives over again. My mom carried me for nine months in her belly before she gave birth to me and raised me. We all carried the weight for my mom as she had to learn and grow into herself. It took time and patience and love. Then, she was reborn and her story is still being written.

My mom, Lori, is alive and well today. After the surgery, she had a hard time grasping her mentality and her personality changed in ways that are much different from the person she was before the surgery. The anti-seizure medication she was on caused her to act out in irrational ways but we had to remember it was the surgery and the meds, not Mom. Over time, her brain has healed more and she has become more of her humorous self. She still has issues with remembering proper nouns to this day but otherwise, she is doing well. She exercises a lot, still loves the beach, and exploring the outdoors. She is the fittest person I know and she still has the goofiest sense of humor. She is always making jokes and acting a little crazy, finding the silliness in everything. When she is in the room, there is always laughter. I love my Mom and I admire her bravery. It has been a climb and a journey that we are still on, but we are nearing the top.

Morgan & Mom, 2020

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