Stroke of Identity

...currently writing from: Glendora, CA

It was October 16th, 2008 when my life drastically changed its course.

I was a typical 20 – something in college studying music with huge aspirations to move to Nashville to play guitar and be a session musician. I had always held myself in a pretty high regard – meaning I never struggled with confidence or body image. I thought I knew perfectly well who I was: Steven Shook. Guitarist. Good-looking guy. Nice guy. Loves Jesus. Shoot, if anything, I was over confident. So, how did things change so drastically?

Earlier that week, I had a bit of an accident. I was horsing around with a friend of mine and hit my head, which resulted in a concussion. My doctor ordered a routine CT scan. On the day of the scan, the radiologist found an anomaly in the image and immediately sent me to an emergency room neurologist. I was freaked out. Thoughts flooded my mind; “Do I have cancer? Did they find a brain tumor? What is going on?”

The neurologist found what is called an arteriovenous malformation (or AVM) in the left frontal lobe of my brain.

(An AVM is a tangle of blood vessels in the brain or on its surface that bypasses normal brain tissue and directly diverts blood from the arteries to the veins. These abnormal and weak blood vessels dilate over time. Eventually they may burst from the high pressure of blood flow from the arteries, causing bleeding into the brain.)

The doctor who gave me the news informed me that I was “quite lucky” that they happened to find this, and if not operated on within the next six months to a year, it would most likely bleed and kill me.

I was in complete shock. This was not supposed to be happening. I couldn’t have brain surgery right in the middle of college! I was supposed to be normal! I was supposed to graduate on time and move and have a great career doing what I love! My parents were on the first flight to Southern California to help me with everything, and the next few months were riddled with long hours in doctor’s offices, school, and emotionally trying to come to terms with everything I was going through, all while refusing to show any sign of fear or vulnerability to anyone.

Fast – forward to January 18th, 2009.

I decided to have my operation at UC San Francisco. The method of operation chosen was “Gamma Knife” radiosurgery, which involved three very tedious procedures.

I was terrified, but I couldn’t let anyone know. I sat there while the doctor attached the frame to my head, cringing with each click the wrench made as he torqued down the screws to my skull. I had an unnerving fear that that this whole thing would be over and I would pull through only to never be able to play guitar again. The thoughts were racing through my mind. I had to press on. I swallowed my fears, gave a thumbs up, and went into surgery.

The surgery was successful, in fact, they found another AVM in the center of my brain that was in worse shape and took care of that one as well. Aside from a short recovery to get me on my feet, everything seemed to be looking up.

My doctors advised me that although they didn’t exactly cut me open, it was still a highly invasive surgery and advised me to take a few months to recover. No chance in hell was I going to listen. I was not going to be the “brain surgery kid.” Against everyone’s advice, I went back to school 3 days later and began my spring semester. The operation had definitely taken its toll on me. I was constantly tired, I failed a majority of my classes, and I was angry at the world and my circumstances, but I was still determined. I was still Steven Shook. Guitarist. Good looking guy. Nice guy. Loves Jesus. 

Fast – forward again to July 18, 2009, another milestone day in my journey.  

It was a relatively relaxed summer and I was finding my life somewhat stabilizing. Everything seemed to be looking up. I was doing ok… until…

I had a horrible, splitting headache. My roommate begged me to go to the hospital, but being stubborn, angry, and in denial, I refused and passed out from the pain. I woke up the next morning, no headache, but I was walking a bit funny. I went about my morning routine, and then went to go practice, but something wasn’t right with my hand – I couldn’t make the chords on the guitar. My doctor happened to call that morning to check in on me. I told him what happened and he immediately sent me to get an MRI of my brain. It turns out, that headache was my brain swelling.

I shouldn’t have woken up that morning. The swelling was classified as a stroke caused by delayed radiation injury.

The areas that had been operated on had swelled 4 millimeters, and damaged the tissue in my brain that controls the fine motor function in the left side of my body. My doctor then went on to tell me that my life was going to change, that I would never be able to play the guitar again. I would never be able to use my left hand normally again. I was lucky that I was alive, but who I was, everything I had built my life around, was ripped away from me. Over the next two days, my arm curled in, my hand tightened into a fist, my face drooped to the left, and I had a slight limp in my step.

I thought the worst had happened. I was wrong. The medicine, the doctors put me on was a strong corticoid steroid to reduce swelling, and had horrible adverse effects on my body. I had never weighed over 150 lbs. In my life. The medicine caused me to gain 45 lbs. It also caused me to get horrible cystic acne all over my body. I felt like I was coming out of my skin. People, friends that I had seen months earlier, didn’t recognize me. Girls didn’t look at me. I felt like shit inside and out. I felt broken, unlovable, ugly, and rejected. I felt like friends that I enjoyed playing music with didn’t want anything to do with me. I was just a regular body with no identity. Emotionally I was destroyed.

For the first time, I had no idea who I was. I begged and pleaded with God but there was no answer. I was “stuck like this.”

In the months that followed, I took some much needed time off to recover. In that time, I underwent laser treatments to remove the scarring from the acne, and I also began intensive occupational and physical therapy to regain normal functions. It’s pretty frustrating when you’re a grown man and cannot perform normal functions like eating normally with a fork and knife, or buttoning your shirt or tying your own shoes.

My therapy started working but one thing was missing. Music.

Guitar was completely absent from my life. My mother was a huge inspiration. She believed that I would be healed and that I would play guitar again. I didn’t want to hear it. I didn’t believe that God was present in my life, or that He would allow me to be healed. I was angry at God for allowing this to happen. Slowly, her persistence paid off, and I began picking up my guitar, trying to work my hand around the neck. After a few months, I was able to form basic chords, slowly. From there, I was able to play basic chords and progressions. My weight started to fall off, and I began to feel like myself again. I was able to return to school the following semester and spent the next year and a half continuing to working hard on my guitar playing, and finishing my degree in music.

Although I regained the ability to play my instrument, two things didn’t return as quickly – my joy, and my confidence. Emotionally, everything that I went through took its toll on me. I am not the same as I was before my ordeal, and it has taken years of hard work to rebuild in the physical and emotional senses.  I know I have it much better than some, but the fact remains that I am not like other people. My body and my brain function differently. I have physical limitations on certain abilities and I have physical and emotional scars.

For a very long time, I struggled with the feeling that: because piers were able to play things or do things that I couldn’t, that I was inferior to them.

The things that people would sometimes say about my ability to play my instrument despite how hard I worked were often hurtful, which played into that feeling of inferiority. I struggled with coming to terms with the fact that my dream of being a session guitarist in Nashville was completely ruined. I was afraid of what people thought about me; that I was nothing more than “washed up” or “mediocre at best,” or worst of all, that I was a “failure.” Sure, I looked like I was getting better, but inside I was a complete wreck.

Over the years, it has taken a lot of work to regain my confidence not just in my ability to play music, but in who I am. I had to make a choice to be the victor, not the victim. I had to learn to trust that God has a plan for me.

In the end, I know who I am. I like who I am. Who I am, is not perfect in any sense whatsoever. I still have some physical challenges. My hand does not work perfectly. I can’t play guitar at the level that I used to play at. I still have emotional challenges. People still say hurtful things about my ability to play my instrument. I do not let those things define who I am, because who I am is so much more than a guitarist, or an AVM, or a stroke survivor. Who I am is not defined by what I do or the challenges I face.

I am a son, a friend, and a Christ-follower. I love people, and I love life. God loves me, and my family loves me.

I love playing guitar, and I’ve been blessed to do some fun music stuff since the AVM/stroke. My dream of being a session guitarist is not ruined; it just looks different now. I believe there are so many amazing opportunities to use music as a platform to help and encourage people, but in the end, it starts with the person behind the music.

No matter what physical limitations you have, or what you might have gone through or what you struggle with, you matter. You are somebody with something to offer. You have a purpose. You were fearfully and wonderfully made.

You are loved.

 - Steven Shook