Growing up, I remember seeing a plain billboard in town that read "Jesus Saves." I often marveled at the sign, wondering what it's large bland letters were meant to say to me. What I learned later in life was that it wasn't Jesus that was meant to save me, but rather hope. And it really doesn't matter how that message is delivered. For some its through traditional religious experiences like Christianity. For some, its through money, career and success. Others find it through hobbies, family, friends,or meditation. For me, it's always been music. And on one fateful day, July 8, 2014, it was Twiddle.
Hindsight is always 20/20. Looking back now, the symptoms were evident. I had two distinct groups of symptoms that, as I would find out later, were completely misdiagnosed. But because the symptoms are rarely only linked together in rare diagnosis', medical professionals never sought to include both together.
When I was 20, the first major "symptom" reared its ugly head. I was a junior in college. The year before, I had won two national titles in swimming. My friends and I were stuck on campus of my small all-women's college, during a Virginia snow storm. I was leaning over to fit a puzzle piece in its place, when the muscles of the right side of my body seized in epic, vice like knots around my neck and shoulder blades. I was in horrible pain.
For the next twenty years, these type of episodes riddled my life. My swimming career ended on a down note, the same year as the first major incident. I was constantly told my chiropractors and doctors that I had some kind of degenerative issues around my C-4. No one ever took a closer look with an MRI. It was always only X-Rays.
On the other side of the coin, was an extreme feeling of anxiety. ALL THE TIME. As I grew older, everything became effected by it. Any kind of stress was too much. At my worst moments, I would scream, yell, kick, and throw things. People would tell me to calm down and relax. And believe me, I wanted to do just that, but I couldn't. My decision making became overruled with "flighting" rather than "fighting." By the time I was 38, I had established a startling pattern. Quit anything and everything that was mildly stressful. It also effected the people that should have been the closest to me. It also damaged important relationships and partnerships.
At 38, other symptoms started to add themselves to the list. I started stuttering. I would become cold with chills when I was nervous. My hands and feet began to fall asleep easily. My eyes became sensitive to light. And my upper back and neck- CONSTANT PAIN. Sleeping became impossible. The less I slept, the worse my anxiety became. And then the depression started. My body was wrecked. My mental state was weak. I began having thoughts of suicide. But I kept telling myself that this was simply part of growing old. In my head, everyone probably felt this way. In my heart, I felt like I was dying.
In March of 2014, I woke up one morning and the entire left side of my body was numb. The first set of doctors repeated the diagnosis of so many before them. X-rays once again revealed a degenerative disorder. I was told a pinched never was the cause of my pain. After several weeks of treatment, it was getting worse. My employer begged me to see his chiropractor. I was hoping maybe he would see something other doctors hadn't, so I went.
Dr.A (as well call him) later told me that he knew something was wrong the minute I left his office after our first meeting. He said he had never seen a patient that was so aware of their symptoms, down to the mental timeline I had accrued as my symptoms worsened over the course of my life. He referred my to a colleague that specialized in Orthopedics.
Dr. G was the first doctor to ever look at my x-rays and ponder a very simple question:
"Why does a 38 year-old former athlete have spinal degeneration in her neck?"
He immediately ordered an MRI. The results of that MRI and the subsequent surgeries and medical tests revealed the following: a pilocystic astrocytoma (a type of juvenile cancer) that started at my C-4 and spanned upward to the base of my brain stem.
The type of tumor revealed that I had literally been growing up with cancer. Generally, a type of brain cancer found in children, mine had settled on living in my spinal sac, making this rare type of cancer even harder to find. The symptoms were easily misdiagnosed. Very few adults are diagnosed with a tumor of my size and location. The location of the tumor revealed the reason for a lifetime of back pain. The directional growth of the tumors (toward my brain stem) revealed the reason for a lifetime of anxiety. As I grew up, so did my tumor. It was retarding proper development of my central nervous symptoms. My brain and body weren't communicating properly. The mental exhaustion was leading to depression. All a result of mounting pressure inside my spinal sac and on my brain stem.
After consulting with multiple neurosurgeons, I fearfully accepted that surgery was my only option. Otherwise, I would spend my life slowing dying. The tumor would eventually compress my spinal cord enough that I would become paralyzed. It's location also meant I would eventually stop being able to breathe on my own. But the worse was the toll this tumor was taking on my mental health. Without surgery, I probably would have ended my own life as the mounting pressure on my brain caused me more unexplained grief.
By July, I had selected a nuerosurgeon. We had set a date for my surgery for later that September. The tumor wasn't aggressive. I wanted some time to enjoy a few things over the summer before I committed myself to open spinal surgery and cancer treatment. The weight of the entire situation was incredible. I knew I needed a bit of time to accept all the possible outcomes of the delicate procedures.
I was overwhelmed by the final meeting with my surgeon. His beside manner was soothing, but the reality of the procedure was not. We were dealing with tumor removal in one of my body's most delicate neurological areas. Success meant I walked away with minor neurological damage and a lifetime of medical treatment to monitor the area. But I had also been informed that the tumors location increased the risk and that long term paralysis was a possibility.
My father had been paralyzed in a car accident when I was 8 months old. I knew what that scenerio looked like and I wanted nothing to do with it. I left his office and slid into the front seat of my car. I sank under the weight of the entire situation. I was inconsolable. I sat in the parking lot of the medical complex violently crying. After some time passed, I knew I needed to pull it together. So I did what any sensible, reasonable person does in the situation. I prayed.
I've never been a particularly religious person. I believe that the man-made dogmatic principles of righteous study often mow down the basic karmic values of most spiritual journeys. But, I have always found a healing power in music. And often in my life, I ask the powerful energy around me to present itself to me through music. Regardless of who you're praying too, its still an invisible energy.
So, with IPOD in hand, I asked the universe to help me. I asked for a sign. I needed something to give me hope. I needed something to remind me I wasn't alone. I asked my "God" to give me just one thing to prove to me that I would be okay. And with an IPOD that sat 20,000 songs deep, I pressed shuffle. And then this played. A song I had heard many times before, but now it came to me as a beacon.
From that day, I have listened to this song every day. It is my alarm clock. One single song has provided me with hope, comfort and safety. When the little things in life stress me out, the last four lines of the song "thinkin' 'bout the day" remind me to look forward. But more importantly, they also remind me to look at what I have overcome.
I have had the honor of talking with the songwriting about the reasons behind the song. I am beyond thankful that he found his own comfort in writing the song. Any writer will tell you that putting your fears, dreams, hopes and life out into the word can be a terrifying experiences. Perhaps, the same message would have found me through some other form of spiritual intervention. Maybe it was pure coincidence. Maybe, I could have pressed shuffle and overtaken by the power of song crazy pop song. Does anyone know what Britney means when she says "Baby, hit me one more time." But on that day, music "saved me."
Life since surgery has been looking up. I suffered minor neurological damage, but it really is minor in comparison to what it could have been. I have to work everyday to deal with my anxiety and depression. But its much easier to do that when there is a reason behind it. The crippling back pain is gone sans the occasional stress and strain of being in my forties. And regardless of how many times I hear it, especially live, "When It Rains, It Poors" will always make me cry. Because it reminds me that hope find you when you need it, So, if you ever need a tear buddy at a Twiddle show, come find me at the start of "Hattie's Jam" and stick around for the "tearfest" that is WIRIP.
Life since surgery has been looking up. I suffered minor neurological damage, but it really is minor in comparison to what it could have been. I have to work everyday to deal with my anxiety and depression. But its much easier to do that when there is a reason behind it. The crippling back pain is gone sans the occasional stress and strain of being in my forties. And regardless of how many times I hear it, especially live, "When It Rains, It Poors" will always make me cry. Because it reminds me that hope find you when you need it, So, if you ever need a tear buddy at a Twiddle show, come find me at the start of "Hattie's Jam" and stick around for the "tearfest" that is WIRIP.
Growing up, I remember seeing a plain billboard in town that read "Jesus Saves." I often marveled at the sign, wondering what it's large bland letters were meant to say to me. What I learned later in life was that it wasn't Jesus that was meant to save me, but rather hope. And it really doesn't matter how that message is delivered. For some its through traditional religious experiences like Christianity. For some, its through money, career and success. Others find it through hobbies, family, friends,or meditation. For me, it's always been music. And on that day, July 8, 2014 it was Twiddle.
Listen to the words I'm singing in this line That your life will be just fine and Troubles do not stay they get replaced with good times Now you've got a great life Smile as you walk by thinkin' 'bout the day
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