Appearances

Physical appearance is exactly that; an appearanceAnd, appearances can be deceiving, especially when there is so much that lies beneath the surface.

Many conditions that are completely invisible to those not experiencing them first-hand. Neurofibromatosis II is often one of them.

After having my second craniotomy, I didn’t want to be labelled or defined by a diagnosis, or as a ‘sick” person, so I put a lot of effort into my appearance; making myself look “fine” on the outside.

I covered my PICC line with a long sleeved shirt, used makeup to hide the dark circles under my eyes, and cut my long blonde hair short to help blend in the multiple bald spots that had been shaved away during surgeries. I even learned to style it just right so that the majority of my stitches were covered.

In hindsight, my efforts were a bit vain. But, my appearance was one thing I felt as though I still had control over, when so many aspects of my life and health were spiraling out of control.

The truth is, you can’t see brain and spinal tumors on the outside. You can’t see exhaustion, brain inflammation, dizziness, or tinnitus. You can’t see remnants of seizures; numbness and tingling. You can’t see pain.

Part of me was grateful that strangers, co-workers, and even my own children couldn’t see all of the symptoms that were laying right below the surface. “You look great!” they would say. And I let them believe that I was great.

Another part of me wanted to wear a t-shirt that said something like “fresh out of brain surgery” so everyone would understand.

I remember walking into a neurology appointment one afternoon, just two weeks after surgery, with high hopes of having my stitches removed that day. It was one of those days; I’d had a migraine, and a hard time getting out of bed. The hour long drive to the medical office has zapped all energy I had left, and my body was physically shaking as I walked from my mom-in-law’s car to the building (she was kind enough to chauffeur me when I couldn’t drive). I actually wondered if I might pass out before I got to the door. A man was walking in ahead of us, but my legs weren’t moving fast enough. He glanced back, saw that I looked “fine,” and let that heavy door shut right in my face.

It was the first time that I wanted to scream “I just had brain surgery!!” How could he not see the pain I was in, and how much I was struggling?

What I didn’t realize at the time, was that there would be many more moments when I wanted to scream and shout until everyone ‘got’ it.

There would be moments at work when I would cry in the bathroom because a sudden migraine had hit, and I couldn’t open my eyes against the light over my desk; there would be moments when I had to hide from my children because their normal sounds would make my head pound.

I was not fine.

My brain had just been tampered with – twice in 3 months. A portion of my skull had been removed, and was now being held in place by 5 titanium ‘snowflakes.’ My scalp was held together by thread. Just to get out of bed each morning, I required a handful of medications and an IV infusion to keep the infection from coming back.

I took roughly 25 pills per day, had a home health nurse who cared for me, and relied on my husband to push antibiotics through my PICC line multiple times per day.

One day, I would be “fine” again, but for now, I was broken. And that was okay.

OK

True healing takes time. Although I’ve never exactly been patient, I knew I owed it to myself to take the time I needed.  Eventually, I knew healing would come, and when it did, I would hold the door open for every person behind me, even if they appeared to be “fine.”

This is my story, and it is not over yet.

The Diagnosis

We are all vaguely aware that life can change in an instant, a heartbeat, a blink of an eye. In the backs of our minds, we know we’re one car crash, one decision, one diagnosis away from a completely different life. Yet, we don’t want to live in fear of the unknown, so we subconsciously suppress this truth until the day it smacks us in the face.

My story begins on the very day that I was blindsided; June 24th, 2018. Our family had just returned home from a beach vacation in South Carolina. Photo from our last night at the pier:At the Pier, Myrtle Beach

It was a Sunday. My husband, Josh, and I were doing housework while our four year old was teaching our one year old the best way to play with Play-Doh at our kitchen counter. It was such an ordinary moment, and we’d had a hundred others just like it… until I felt a horrible sensation rip through the nerves in my left arm. I told Josh, “my whole arm just went numb.” He asked if I was okay, and I could only respond “no” in between screams.

My skin felt like it was trying to harness golf balls moving wildly in my veins. Pain was everywhere; my neck, head, ear, ribs, and arm; all on the left side. Just when I thought it would never stop… it did, just as suddenly as it had started.

In an instant, I could hear again. My kids were crying; they were scared. My husband was on the phone with 911. I was kneeling on the kitchen floor, staring at my left hand.

It’s a funny feeling when your body moves without you telling it to. In an odd way, it felt like I had been betrayed by my best friend. My mind and body had been together forever, my mind knew my body better than anyone, and my body always did what my mind told it to do. Except for today. Today my body acted on it’s own accord, without any direction. It was terrifying.

By the time the ambulance arrived, I was already reassuring my frightened boys that mommy was just fine; “my arm just hurts and I need a doctor to look at it.” When I reflect on this moment, I often laugh at how ‘mom instincts’ tend to take over. Here I was, in the middle of the most terrifying moment of my life, and my need to protect and reassure my children was stronger than the fear I had for myself, or what was to come.

But, the second I stepped into the ambulance, I became the child, and the trained medical team did their best to explain what was happening, and keep me calm.  “It could be a stroke, but more than likely, it’s just a pinched a nerve,” the EMT had said. It was easy to believe him. I had never been a ‘sick’ person.’ Sure, I’ve had colds, but I’ve never been to the hospital, except for giving birth to our babies. I’ve never even had a cavity!

By the time we arrived at the hospital, I felt incredibly silly being wheeled in on a stretcher with my purse in my lap. As I was being steered down the long hallway, I caught the eyes of a young girl sitting in a hospital bed. We looked at each other for what seemed like a long time. Her face was full of worry. She had been crying. I couldn’t help but wonder what her story was.  Looking at her made me feel a bit embarrassed for rushing into the ER over a pinched nerve when there were people who needed those beds for more serious things. My thoughts were interrupted as my own bed took a turn and I was settled into a room nearby. Later, I wondered if she had the same thoughts about me.

Within minutes, I was being questioned, poked and prodded. Josh showed up sooner than I ever thought possible, having taken our boys to our neighbor’s house, and was sitting with me while we talked to a neurologist via video conferencing (thank you, Technology!).

When asked to explain the incident, I felt the same sensation tear through the left side of my body. This time, without my children present, and the hospital noises, smells, and sounds around us, a harsh reality started to sink in. Something was seriously wrong.

Screams and tears were pouring freely, and my arm was moving wildly on its own; I couldn’t control it. The hospital staff began to scramble, and medicine poured into my veins through an IV. Again, the episode stopped as suddenly as it had began, but this time, the hospital staff had seen it, and, they had suspicions of what was going on.

Over the next several hours, I was subjected to test after test, and answers began to come. First, seizure activity was confirmed. Then, we were told about the brain tumors; “several.” Finally, for the first time, we heard the word Neurofibromatosis II.

Although this news was detrimental, all I could do was laugh. I laughed so hard I cried. Were they sure they had the right scans? I couldn’t even pronounce the word; ‘Neurofibromatosis.’ I told the neuro that he had to be wrong; afterall, the EMT had assured me this was only a pinched nerve.

MRI - Tumors

Despite my inability to comprehend what was happening, I was admitted for further observation. My husband never left my side. He made all of the right phone calls, asked all the right questions, and let me fall asleep that night in ignorant bliss, thinking there had to be some sort of mistake.

I was woken up he next morning for a blood draw. The lights were turned on for visibility, and Josh was laying on the hard couch in the room. His eyes were open. We stared at each other until my blood had filled 4 vials, and the phlebotomist left the room.

Then, Josh said said the 5 words that made everything true; “it’s going to be okay.”

That was the moment I realized this was not a dream. It was real. I had Neurofibromatis II; a diagnosis that would change my life. I wasn’t quite sure yet exactly what was going to change, but I knew it was big.

I’ve always believed that although we don’t get to choose what happens to us, we do get to decide how we react to it. These are the moments that define us.

This is my story. And it is just getting started.